I came across a recent article about some of the latest work at PolyBio and it gave me much needed hope that someone is making progress on ways to diagnose and treat ME.

A lot of the research I see is focused on the downstream symptoms. While managing symptoms is needed, my wish is to be free from ME.

From what I have seen, only a handful of researchers seem to be making progress on pinpointing the driving force that is causing us to be too sick to fully participate in society.

The recent article, PolyBio Expands Support for Extracellular Vesicle “Liquid Biopsy” Diagnostics for Chronic Infection, discusses a class of diagnostics built on extracellular vesicle (EV)–based “liquid biopsy” technologies.

This approach could lead to lab testing that would pinpoint persistent pathogens.

The idea of being able to test urine samples is exciting. Imagine a world where peeing in a cup pinpoints what is causing chronic illness!

“These approaches are grounded in the fact that pathogens that drive chronic illness often reside in tissues and release only faint, intermittent signals into accessible fluids like blood or urine.”

My fundraiser on Facebook can be found HERE. (Ends May 3rd)

Obviously, direct donations to PolyBio would be good as well. Direct donations can be done HERE.

As you hopefully already know, all of my Substack articles are free to read and share. I would much rather readers support researchers, like PolyBio. A cure for ME would be the best gift!

Aiming for a better future…

Colleen

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ME Research UK’s website explains Dr. Ramsay’s definition for ME.

From the website:

“Drawing on his clinical experience and broader observations, Dr Ramsay described the core features he believed defined ME – an account that later became known as the Ramsay definition.”

On the topic of muscles:

• Muscle fatigability: Dominant and most persistent feature… “diagnosis should not be made without it”. Restoration of muscle power can take three to five days, or longer.

• Muscle tenderness

From the ME International Consensus Primer (pg 1)

“Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.”

I have experienced muscle fatigability since my sudden onset of ME in 1989. Feeling like my muscles had lost ability to maintain function was one of the first things I experienced.

Fatigability

It is important to separate fatigability from fatigue / weakness. My muscles have a lot more strength than doctors expect. So when I do a hand grip test my strength looks normal. If I repeat the handgrip test the muscle strength rapidly drops off.

A good example of this is that I can help move furniture… but I can only do so for short periods of time. I can do quite a bit of heavy lifting if I take frequent breaks. I still pay a price. My muscles have strength, however they do not have stamina.

Doctors only see us for a few minutes at a time. This has led to confusion about how debilitated I am. It took my husband speaking up to convince my doctor to prescribe a wheelchair. I think doctors worry that prescribing a wheelchair will lead to deconditioning. That has not been the case at all. By having a wheelchair I can protect the muscle function of my legs. The wheelchair helps me avoid situations that require me to walk further than my muscles have energy to produce.

Diagnosing muscle fatigability

If a doctor does not recognize you have muscle fatigability, that doesn’t mean you don’t have it. Most doctors have not been trained to look for muscle fatigability or post-exertional neuroimmune exhaustion. Self observation is probably the best way to know if you have this symptom.

Some of the ways I know I have it include:

• My handwriting deteriorates as I write. This has become more problematic over the years. I used to be able to write a couple of paragraphs before my writing became illegible. Now it’s only a couple words.

• Carrying something heavy but then needing to put it down and having to wait for muscles to recover to continue.

• My arm muscles burn and give out while washing my hair. (Any activity that requires my arms over my head quickly leads to muscle fatigue.)

The International Consensus Criteria does not require this specific symptom for a diagnosis. While this symptom may help confirm an ME diagnosis, it is hard to know if everyone with ME has this symptom. If someone doesn’t experience muscle/cognitive fatigability it might be worth looking into an alternative diagnosis.

We have seen a lot of people diagnosed with “CFS” or “ME/CFS” end up with other conditions. See more about that in my article Missed Diagnosis.

Mobility aids

Adapting to this broken energy production system was a long learning curve. We need more doctors educated about this aspect of ME in order to properly diagnose and treat patients from the start!

I waited too long to get a wheelchair! If I knew in the early years of this illness what I know now I wouldn’t have waited. A wheelchair reopened the world to me… as long as I have someone willing to push it. Using my arms to move a wheelchair is as harmful as walking. An electric powered wheelchair is another useful option. ME patients should have access to these mobility aids as soon as possible.

We also have a state issued disability blue placard so we can park in handicap parking spaces. The less I am forced to walk… the more other stuff I can do.

I also use a cane/chair… which I also use to advocate. Having “Cure M.E. Myalgic Encephalomyelitis” written on the seat of the chair has helped me avoid questions about why I need the cane/chair.

Unfortunately, doctors are often told to wait 6 months to make a diagnosis. I think this is a HUGE mistake as patients need the knowledge from day one about the importance of protecting themselves from overusing muscles. The International Consensus Criteria (ME-ICC) does NOT require a waiting period. ME is recognizable from onset and needs to be adequately treated from the beginning.

What the IC Primer says

The Myalgic Encephalomyelitis International Consensus Primer (ME IC Primer) has many references to the muscle issues seen in ME patients. The following are some of the points made by the experts:

• Oxygen delivery to muscles is reduced after exercise

• Increased intracellular acidosis (overabundance of acid) in exercising muscles

• Central nervous system signals are altered when controlling voluntary muscle activities, especially when they are fatiguing

• Fatigue of chest wall muscles

• Impaired aerobic metabolism & oxygen delivery to muscles

• Significant pain in muscles, muscle-tendon junctions…

Understanding the biology

I was going to search through the research to see what we know about the muscle fatiguability issue in ME. Thankfully, Klaus J. Wirth of Mitodicure GmbH, Kriftel, Germany and Jürgen M. Steinacker of the Institute of Rehabilitation Medicine Research at Ulm University, Ulm, Germany beat me to it.

Their paper, The potential causes of myasthenia and fasciculations in severely ill ME/CFS patients: the role of disturbed electrophysiology published on Feb 1, 2026 proposes theories about the muscle dysfunction experienced by patients based on previous published research.

(Myasthenia: “fluctuating weakness and fatigue of voluntary muscles”)

They list four possible causes for muscle dysfunction:

1. Lack of energy due to mitochondrial dysfunction.

2. Atrophy due to inactivity in the intention to avoid PEM and due to immobilization (deconditioning).

3. Skeletal muscle damage.

4. Electrophysiological causes that lead to insufficient excitation and recruitment of muscle fibers upon neuromuscular activation.

I’m not convinced these are all the causes. Some of the other causes may include

• Microclots

• Central nervous system issues

• Acidosis

• Low blood volume (For more about that see my article Hypovolemia in Myalgic Encephalomyelitis: Low blood volume is a biological abnormality.)

• Dysregulation of extracellular vesicle protein

The 2012 ME IC Primer points to many of the same issues as the paper. The IC Primer states on page 6:

“Profound energy impairment suggests dysregulation of the mitochondria and cellular energy production, channelopathy, and ion transport.”

Let’s take a look at the paper’s list of possible causes:

#1 - Mitochondria dysfunction

“Overall, the muscles of severely ill ME/CFS patients may be caught in a state of depolarization and mitochondrial damage, even at rest. Even the slightest effort aggravates the condition.”

The paper, Metabolic adaptation and fragility in healthy 3D in vitro skeletal muscle tissues exposed to CFS and Long COVID-19 sera, published in August 2025 contributes to the knowledge of the mitochondrial dysfunction in ME.

“ME/CFS also showed strong downregulation of mitochondrial energy production pathways, such as the citric acid (TCA) cycle, respiratory electron transport, and ATP synthesis by chemiosmotic coupling, as well as pathways involved in DNA synthesis and neuronal signaling. These findings highlight a pattern of impaired cellular energy metabolism…”

Despite the “CFS” and “ME/CFS” labels used, the ME/CFS patients studied fulfilled the International Consensus Criteria (ME-ICC). That gives me confidence this paper applies to ME.

#2 - Deconditioning

I think it is misleading to include deconditioning in this list. While that can happen due to the debilitating nature of ME, the muscle dysfunction occurs upon onset of the disease before deconditioning takes place.

Personally, in the early years of being severely ill, I went through a period where I lost all muscle mass. Once my body stabilized at a higher level of function (about 4 years into the disease), I was able to start rebuilding muscle mass. Acupuncture helped with the excruciating muscle pain and improvement of muscle function.

#3 - Skeletal muscle damage

From the potential causes of myasthenia and fasciculations paper:

“While skeletal muscle membrane depolarization is persistent in severely ill patients, in patients with moderate ME/CFS, muscle membrane depolarization may only be transiently present during longer-lasting or more severe episodes of PEM after excessive exertion.”

“In the presence of a depolarized skeletal muscle membrane, which induces peripheral hyperexcitability, the central increase in skeletal muscle tone facilitates the generation of irregular action potentials. These become clinically manifest as fasciculations, cramps, and tremors.”

The 2024 paper, Dysregulation of extracellular vesicle protein cargo in female ME/CFS cases and sedentary controls in response to maximal exercise from Maureen Hanson’s group also touches on the skeletal muscles being affected.

“The results show that exercise affects the EV proteome in ME/CFS patients differently than in healthy individuals and that changes in EV proteins after exercise are strongly correlated with symptom severity in ME/CFS. Differentially abundant proteins in ME/CFS patients versus controls were involved in many pathways and systems, including coagulation processes, muscle contraction (both smooth and skeletal muscle), cytoskeletal proteins, the immune system and brain signalling.”

#4 Electrophysiological causes

From the potential causes of myasthenia and fasciculations paper:

“Insufficient Na+/K+-ATPase activity can explain mitochondrial dysfunction via sodium-induced calcium overload, causing diminished oxidative phosphorylation in skeletal muscle, leading to a lack of energy, fatigue, and loss of endurance, along with a disturbance of skeletal muscle electrophysiology.

The latter leads to chronic depolarization of the sarcolemma, which explains both loss of force due to impaired action potential propagation and fiber recruitment and fasciculations (hyperexcitability).

Skeletal muscle depolarization may play a strong role in the myasthenia of these severely ill ME/CFS patients. It may also contribute to a vicious circle that increases sodium loading through inappropriate excitations, further increasing mitochondrial damage through calcium overload.”

The paper, Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS, gives more insight.

“In conclusion, this study suggest that post-exercise sarcolemma fatigue often measured in ME/CFS patients could be the cause of muscle failure and MHGS [Maximal handgrip strength] measurement constitutes a good index of global muscle performance and fatigability in ME/CFS patients.”

Sarcolemma fatigue is defined in that paper as:

“The sarcolemma is defined as the plasma membrane of a muscle cell that maintains the intracellular environment, facilitates the transport of substrates, transmits neural excitatory impulses for muscle contraction, and contains ion channels that regulate electrical activity and signal transduction.”

Ramifications

When thinking about the ramifications of this altered biology, it is important to remember that we use our muscles to swallow, to breathe, and that our heart is a muscle.

I experience difficulty chewing and swallowing. It feels like it is related to my muscles not working properly. It is definitely worse when I’m in a crash. I think this needs to be acknowledged for all patients, but especially those in the Severe ME category who need tube feeding.

Speech also takes a lot of muscles. It’s no wonder many of us have periods where speech is very difficult (or impossible).

From the article, Neural Models of Motor Speech Control, published in Science Direct:

“Speech production is a highly complex motor act involving the finely coordinated activation of approximately 100 muscles in the respiratory, laryngeal, and oral motor systems.:

We have cardiac issues, but I think the likely reason we don’t all quickly succumb to heart failure is that the heart muscle is different from other muscles. According to an article in BBC Science Focus article, The surprising science of why your heart doesn’t tire like other muscles, the heart has 10 times the density of mitochondria plus it can consume glucose, free fatty acids and lactate.

There are indications people with ME have cardiac abnormalities. The ME-ICC Info Group on Facebook collaborated on a handout that explains some of the cardiac issues seen in ME. See that HERE.

Muscle pain is a significant result of these muscle function issues. Managing the pain requires doctors to understand the complexities involved.

Managing muscle fatigability

Knowledge is power… managing muscle fatigability starts with understanding this is biology, not attitude. Pushing through the muscle fatigue can lead to severe post-exertional neuroimmune exhaustion. Pacing the use of our muscles is vital to avoid pushing past the energy production restrictions.

We don’t know the full ramifications of pushing through this limitation, but from my own experience, I think the repercussions are long lasting and lead to lower quality of life.

I have had unpleasant side effects from some of the supplements listed below. I follow the experts’ advice of starting low and slowly increasing any medication or supplement.

Muscle fatigue is not limited to people with ME. The paper, Nutritional Compounds to Improve Post-Exercise Recovery, offers some insight.

“The metabolic and mechanical stresses associated with muscle-fatiguing exercise result in perturbations to bodily tissues that lead to exercise-induced muscle damage (EIMD), a state of fatigue involving oxidative stress and inflammation that is accompanied by muscle weakness, pain and a reduced ability to perform subsequent training sessions or competitions.”

That paper offers some information about supplements that may be helpful, with reasoning about why they might work. Suggestions include the following:

Antioxidants - I wrote about the importance of antioxidants for people with ME in my article, ME - Management & Treatment: Antioxidants.

Fruit-Derived Polyphenols -

“Rationale for the use of polyphenols to improve post-exercise recovery in humans is based on their (1) signalling activities that upregulate the endogenous antioxidant response; (2) protective effects on red blood cells; and (3) enhancement of vascular function.”

Fruits listed include: tart cherry, pomegranate, blueberries, blackcurrant, curcumin, and beetroot juice.

Proteins and Amino Acids - suggestions include: leucine, β-Hydroxy β-methylbutyrate (HMB), creatine, l-glutamine, l-carnitine, watermelon juice (l-citrulline), taurine, bromelain and other proteases.

Fatty Acids - Fish Oils (Omega-3 Fatty Acids). (I don’t tolerate a lot of fish oil, so I eat some ground flaxseed every day. That is not as efficient but better than nothing…)

Vitamin D - I have found I do best when keeping my vitamin D levels in the higher range of normal. Getting into moderate/low range leads to much worse cognition and muscle issues.

Caffeine - this may not be safe for those of us with ME. I do not tolerate any caffeine (except a bit of dark chocolate on occasion). The false energy from caffeine can easily lead to post-exertional neuroimmune exhaustion.

Herbal Supplements - List includes ginger, ashwagandha, kava, hops extract, valerian root, and ginseng.

Muscle tension

Muscle tension is a common symptom that leads to severe stiffness, muscle aches, spasms and/or cramping.

I have had difficulty getting my muscles to relax since the onset of ME. This has led to some of the worst pain I have experienced. This muscle issue has become more difficult to manage over the years.

Magnesium is widely recommended to help relax muscles. Using magnesium supplements as well as magnesium spray and epsom salt baths have helped me a lot.

I discovered many years ago that any medication used to relax my muscles helped in the short term but quickly led to painful muscle contractions, causing more harm than good.

I have also found acupuncture and a Transcutaneous Electrical Nerve Stimulation (TENS) unit helps with the pain and helps my muscles recover more quickly.

The more we know…

We have known about muscle fatigability in myalgic encephalomyelitis for decades. It’s long past overdue that doctors are aware of this symptom and support us in protecting our muscles from the damaging effects of overuse.

Aiming for a better future…

Colleen

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Neuroimmune disorders

A paper published on Feb 2 raises the importance of recognizing ME/CFS as well as POTS and Long COVID as Neuroimmune disorders.

The authors for the paper Postural Orthostatic Tachycardia Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID as Neuroimmune Disorders includes Dr Svetlana Blitshteyn. I have been following her for a while on social media. From what I have seen it appears she doesn’t specialize in myalgic encephalomyelitis, but her social media posts indicate to me that her grasp of the reality of these patient groups is far better than many doctors.

ME needs to be housed in the correct specialty category and I agree that neuroimmune specialists are the right fit.

From the paper: (paragraph breaks added for easier reading)

“There is emerging evidence that abnormalities in the neuroimmune pathways and neuroinflammation may be among the mechanisms of ME/CFS.

Numerous neuroimaging studies highlighted important brain regions with hypoactivity, including insula, thalamus, and limbic cortex and suggested that cortical-limbic disconnection, impacting metabolites and brain waves, contributes to ME/CFS symptoms.

Extensive phenotyping and studies on serum and cerebrospinal fluid markers demonstrated distinct abnormalities in patients with ME/CFS compared to healthy controls suggesting immunologic and autoimmune pathophysiologies.”

“To this end, we believe that these conditions should be viewed as neuroimmune disorders and should be included in the field of neuroimmunology, with its educational curriculum, training, and clinical care pathways.

Including these disorders as part of neuroimmunology subspecialty is the key to advancing the science and clinical care of this underserved patient population with these complex and disabling conditions.”

Cleveland Clinic explains what a neuroimmunologist does:

“Your nervous system and immune system seem like two different machines working to keep your body running. But these intricate systems rely on each other to do their jobs. Neuroimmunologists study neuroimmunology, or the link between your nervous and immune systems.”

In the Fall of 1991, Dr. Jay Goldstein wrote an article for the CFIDS (Chronic Fatigue Immune Dysfunctions Syndrome) Chronicle titled “The Evolving Hypothesis CFS: limbic Encephalopathy In A Dysfunctional Neuroimmune Network”. Article starts on page 19.

Dr. Goldstein was well known and respected at that time for his work in this field. In the article he states:

“Chronic fatigue syndrome can be viewed as a multi-causal disorder of the neuroimmune network which occurs in genetically predisposed individuals. Infectious agents, probably viral, may activate the immune system and dysregulate the central nervous system, particularly the temporolimbic area. Many symptoms are neurologic and the fatigue appears to be central, not peripheral. Since the symptoms fluctuate and can be altered by neuropharmacological intervention, they may be mediated by neuroimmune transmitter substances.”

NOTE: The term CFS was used in place of ME at that time. In 1994 CFS became connected to the inaccurate Fukuda definition which buried the reality of ME.

We have had the knowledge about myalgic encephalomyelitis being a neuroimmune disease for decades. In a perfect world we would have been housed in the same field as multiple sclerosis since at least the 1980s and the Fukuda definition would never have been written. It is long past time for ME to be added to the curriculum for medical specialists in the field of neuroimmunology.

Extension of Medicare telehealth

As I previously reported, access to telehealth through Medicare was in jeopardy. As of now, telehealth services can be provided by all eligible Medicare providers through December 31, 2027.

There are different rules for mental health services via telehealth. From the Telehealth US Government website:

“Medicare patients can permanently receive telehealth services for behavioral/mental health care in their home.”

This is good news, but we need legislators to make all telehealth available permanently!

Bills in Congress to cancel WISeR

The Wasteful and Inappropriate Service Reduction (WISeR) Model will run for six performance years from January 1, 2026 to December 31, 2031 in six states: New Jersey, Ohio, Oklahoma, Texas, Arizona, and Washington. While this is currently only in those states, what happens there will eventually impact all of us.

The WISeR model’s goal is to use AI to require prior authorizations for procedures that currently don’t require that. In reading between the lines it sounds like there are many procedures that the government considers a waste of money that in reality are important for quality of life.

In looking through Appendix A which lists various procedures, I saw a few things that might impact people in our community.

• Vagus Nerve Stimulation: Open implantation of cranial nerve (e.g., vagus nerve) neurostimulator electrode array and pulse generator

• Incontinence Control Devices

• Sacral Nerve Stimulation for Urinary Incontinence

• Percutaneous Vertebral Augmentation for Vertebral Compression Fracture
  (From internet search: “a minimally invasive, image-guided procedure for treating painful, debilitating vertebral compression fractures (VCFs) caused by osteoporosis or cancer”)

• Epidural Steroid Injections for Pain Management

• Hypoglossal Nerve Stimulation for the Treatment of Obstructive Sleep Apnea

The following are the bills that have been introduced to repeal this WISeR model:

• H.R.5940 - Seniors Deserve SMARTER Care Act of 2025

• S.3480 - Seniors Deserve SMARTER Care Act of 2025

I suspect we have all dealt with prior approval requirements that made getting the care we need a much bigger hassle. We need a health care system that allows doctors and patients to have control over their healthcare decisions…

Fighting insurance denials

Speaking of insurance… I came across a website called Fight Health Insurance.com.

I have had to appeal various insurance denials over the years. It is a lot of work, but it can pay off. The information at this website looks like it could make the process much easier.

From the website:

“Generate your healthcare claim appeal in minutes with AI. Free for everyone”

“How It Works: Upload denial letter - snap a pic or use on-device OCR for privacy. We draft appeals. AI creates multiple drafts you can edit. You submit & fight back.”

If anyone uses this, please let me know if it was a good experience.

Personal note about View from the Trenches of ME

This Substack is free and I hope to keep it that way. I have come across other Substack writers who are also publishing free articles who think the platform does less to promote the free Substacks.

I truly appreciate that I am able to write on Substack for free and provide the articles to you at no cost. I realize Substack platform survives by taking a fee from every publication that does charge a fee. Because of that, it is entirely possible they don’t make any effort to help my publication be seen more widely.

If you find these articles useful, please like and/or share to help me reach more readers. You can see a list of all my articles in the View from the Trenches Table of Contents.

Aiming for a better future…

Colleen

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ICD codes provide for the ability to:

• track how many people have a specific disease

• track how many people die from a specific disease

• get appropriate care covered by insurance

• get disability benefits

Knowledge is power

I have found it very helpful to understand the codes that doctors have applied to me. In the US these diagnosis codes impact what your insurance will cover and what treatments doctors will offer.

Unfortunately, the code a patient is given may not be for the disease you have been told you have. I have heard about doctors telling someone they have ME, ME/CFS, or CFS only to learn that the codes used were for depression, functional neurological disorder (FND), or other conditions that misrepresent the reality of what a person with ME is experiencing.

Please note that if you have been given an “FND” diagnosis it may show up as being equivalent to the mental health condition “conversion disorder”. See more about FND coding at Simple Practice HERE.

There are times that a doctor will use a code that they know will help get insurance to pay for testing or treatments. Unfortunately, that can lead to a misunderstanding by subsequent doctors.

For instance, a patient may only have the code for Postural Orthostatic Tachycardia Syndrome (POTS). Treatment for that condition includes exercise which is dangerous for someone with ME. A POTS code without the accompanying ME code could lead to dangerous medical interactions.

US ME ICD Code - G93.32

The US uses a different coding system from the World Health Organization (WHO).

You may see information prior to Oct 2022 that states that the US code for ME is G93.3 and CFS is R53.82. A push from several “advocacy” organizations asking the CDC to give ME/CFS a code led to a reclassification which lumped CFS in with ME under the code of G93.32.

MEadvocacy’s article, SEID Classification Usurping ME Must Be Stopped, explains why many of us opposed lumping these different patient groups under one code. Despite objections raised, ME, CFS, and ME/CFS are now all included under G93.32.

Note: The advocacy orgs involved in this push to lump all the patients together were: International Association for CFS/ME, #MEAction, Open Medicine Foundation, Solve M.E, Massachusetts ME/CFS & FM Association, Minnesota ME/CFS Alliance, and Pandora.

Because these are all listed together, it is up to the doctor to clarify which label is used. Unfortunately, many of the electronic health records automatically give us the “Chronic Fatigue Syndrome” label even if we have the distinct disease ME.

There is a serious issue with the way EPIC, a company that manages many US electronic health records, uses the G93.32 code. A couple years ago I was able to get a screen shot that showed the list of conditions that EPIC connects to G93.32 code. It may have been updated since then… but I doubt it.

The following is the list that EPIC electronic health records connect to G93.32. Some conditions use additional codes along with G93.32. Those codes are in parenthesis.

• ME

• ME (myalgic encephalomyelitis)

• Myalgic encephalomyelitis syndrome

• Benign myalgic encephalomyelitis

• Encephalomyelitis, epidemic myalgic

• Myalgic encephalomyelitis

• Epidemic myalgic encephalomyelitis

• CFIDS

• Chronic fatigue and immune dysfunction syndrome (D89.9)

• CFIDS (Chronic fatigue and immune dysfunction syndrome) (D89.9)

• CFS

• CFS (chronic fatigue syndrome)

• Chronic fatigue disorder

• Chronic fatigue syndrome with Fibromyalgia (M79.7)

• ME/CFS

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

• Myalgic encephalomyelitis/chronic fatigue syndrome

• Post-COVID / Long hauler

• Post-COVID-19 syndrome manifesting as chronic fatigue (U09.9)

• COVID-19 long hauler manifesting chronic fatigue (U09.9)

• Post-COVID chronic fatigue (U09.9)

Because G93.32 includes so many different patient groups there is no way to track ME. We don’t know how many have the distinct disease ME or how many die from the disease.

As I have written about before, ME is NOT the same as CFS. For more info see my article, The meaning of CFS depends on who you ask: Why did I stop saying “CFS also known as M.E.”?,

WHO ME ICD Code - 8E49

The World Health Organization (WHO) manages a master list of ICD codes for diseases. Many countries use this list or a modified version of this list for their citizens.

The WHO’s inclusion labels for 8E49 are Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Suzy Chapman (Dx Revision Watch) in the ME Global Chronicle article, Update on additions to ICD-11 and SNOMED CT terminology system, explains a recent change to 8E49 which added myalgic encephalomyelitis/chronic fatigue syndrome and ME/CFS to the 8E49 index terms.

The article also has information about how other countries handle the code for ME.

Caveat

While many of us will have several of the codes listed below (25+ apply to my case), in some cases doctors in the US may hesitate to include all codes that may apply. They may do this to protect patients. I can think of a few reasons why this may happen.

1. Having the “CFS” code has been known to affect care from other doctors, especially specialists, who are still using old information from the CDC tool kit that promoted cognitive behavior therapy (CBT) and graded exercise therapy (GET).

2. If regulations change back to allowing insurance companies to deny coverage for people with preexisting conditions, many of us will lose our insurance.

3. It may also affect the ability to purchase life insurance.

ICD codes to consider

The following are some of the US codes that may apply to people with ME. Huge thank you to the members of the ME-ICC Info Facebook group who helped build this list.

It may come as a surprise to many that we could have so many codes applicable to our situation. It is important to understand that ME impacts multiple biological systems. Many comorbid conditions can occur that require other specific codes.

I agree with the premise that if someone gets treatments for a comorbid condition that resolves all symptoms (including post-exertional neuroimmune exhaustion) that the ME diagnosis no longer applies.

The headings in bold are the section headings.

A00-B99 Certain infectious and parasitic diseases

• Candidiasis (unspecified) - B37.9

D50-D89 Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism

• Immunodeficiency (unspecified) - D84.9

• Mast cell activation disorder, unspecified - D89.40

  (Helpful to access medications that treat mast cells.)

• Other specified disorders involving the immune mechanism, not elsewhere classified - D89.89

• Disorder involving the immune mechanism, unspecified - D89.9

E00-E89 Endocrine, nutritional and metabolic diseases

• Hypothyroidism, unspecified - E03.9

• Hashimoto’s thyroiditis - E06.3

• Low Blood Volume (Hypovolemia) - E86.1

  (Helpful to justify insurance paying for IV Fluids.)

• Acidosis, unspecified - E87.20

• Metabolic Syndrome - E88.810

F01-F99 Mental, Behavioral and Neurodevelopmental disorders

• Primary Insomnia - F51.01

G00-G99 Diseases of the nervous system

• Idiopathic nonfamilial dystonia - G24.2

• Spasmodic torticollis (Cervical Dystonia) - G24.3

• Blepharospasm - G24.5

• Other dystonia - G24.8

• Dystonia, unspecified - G24.9

• Essential Tremor - G25.0

• Myoclonus - G25.3

• Stiff person syndrome - G25.82

• Mild cognitive impairment of uncertain or unknown etiology - G31.84

• Various migraine With aura intractable - G43.11

• Without aura intractable - G43.01

• Migraine without aura, not intractable - G43

• Insomnia unspecified - G47.00

  (Can help with access to sleep medications)

• Circadian Rhythm Sleep Disorder, Delayed Sleep Phase Type - G47.21

• Sleep disorder, unspecified - G47.9

• Hypersomnia, unspecified - G47.10

• Obstructive sleep apnea - G47.33

• Primary central sleep apnea - G47.31

• Narcolepsy - G47.419

• Recurrent isolated sleep paralysis - G47.53

• Polyneuropathy, unspecified - G62.9

• Periodic Paralysis - G72.3
  (Most of the people with this diagnosis have a genetic abnormality, but it can also be used for those of us who have periodic paralysis as a downstream effect of the ion transport issues seen in ME.)

• Postural Orthostatic Tachycardia Syndrome (POTS) - G90.A
  (This is a newer code which doctors may not be aware of. See more info about that HERE. Learn more about dysautonomia at Dysautonomia International.)

• Other disorders of the autonomic nervous system - G90.8

• Disorder of autonomic nervous system, unspecified - G90.9

• Postviral and related fatigue syndromes - G93.3

• Myalgic Encephalomyelitis (CFS, ME/CFS) - G93.32

H60-H95 Diseases of the ear and mastoid process

• Vertigo of central origin - H81.4

• Tinnitus right ear - H93.11

• Tinnitus left ear - H93.12

• Tinnitus bilateral - H93.13

• Tinnitus unspecified ear - H93.19

• Pulsatile tinnitus (specific to laterality) - H93.A1-H93.A9

I00-I99 Diseases of the circulatory system

• Essential (primary) hypertension - I10

• Secondary hypertension, unspecified - I15.9

• Venous insufficiency (chronic) - I87.2
  (Captures impaired venous return / pooling, a core mechanism of preload failure.)

• Orthostatic hypotension syndrome - I95.1
  (This code is used to report a drop in blood pressure that occurs when a patient moves from a sitting or lying position to a standing position}

J00-J99 Diseases of the respiratory system

• Allergic Rhinitis - J30.1

• Tonsil stones (tonsilloliths) - J35.8

K00-K95 Diseases of the digestive system

• Gastroparesis - K31.84

• Irritable bowel syndrome with diarrhea - K58.0

• With constipation - K58.1

• Mixed IBS - K58.2

• Intestinal malabsorption, unspecified) - K90.9

L00-L99 Diseases of the skin and subcutaneous tissue

• Nonscarring hair loss, unspecified - L65.9

M00-M99 Diseases of the musculoskeletal system and connective tissue

• Hypermobility Spectrum Disorder (HSD) - M35.7

• Fibromyalgia - M79.7
  (Pain in ME has multiple causes, but many of us end up with a Fibromyalgia diagnosis)

• Age-related osteoporosis w/o current pathological fracture -M81.0

• Disorders of bone density and structure - M85.80
  (This looks like it can include bone pain)

N00-N99 Diseases of the genitourinary system

• Other specified urinary incontinence - N39.498

• Mixed incontinence - N39.46

• Uninhibited neurogenic bladder - N31.0

• Endometriosis, unspecified - N80.9

Q00-QA0 Congenital malformations, deformations, chromosomal abnormalities, and genetic disorders

• Ehlers-Danlos syndrome, unspecified - Q79.6

• Hypermobile Ehlers-Danlos syndrome (hEDS) - Q79.62

R00-R99 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified

• Shortness of Breath - R06.02
  (Applicable for subjective sensations of breathing difficulty, air hunger, or dyspnea)

• Ataxic gait - R26.0

• Paralytic gait - R26.1

• Unsteadiness on feet (general, non-specific) - R26.81

• Ataxia, unspecified - R27.0

• Aphasia - R47.01

• Dysarthria and anarthria - R47.1

• Chronic fatigue, unspecified - R53.82

• Syncope and collapse - R55

S00-T88 Injury, poisoning and certain other consequences of external causes

• Fluoroquinolone Damage - T36.AX5

• Gulf War Illness - T75.830

  (This is a new 2026 ICD-10-CM code that became effective on October 1, 2025. While Gulf War Illness is a disease separate from ME, we have seen symptoms overlap and someone who has GWI may also be given a CFS or ME/CFS diagnosis.)

U00-U85 Codes for special purposes

• Post COVID-19 condition, unspecified (long COVID) - U09.9

Post-exertional Malaise - No Code

Various organizations proposed adding a code for post-exertional malaise to the US coding system. As of this date, the proposal has not been implemented. I do not support “PEM” getting a code for various reasons. See info about that HERE.

In closing

It can take a while to get many of these conditions diagnosed. It is important to rule out conditions that may have been mistaken for ME/CFS or are comorbid.

My personal experience of getting testing to rule out other conditions has made me much more confident in my own diagnosis of ME as defined by the International Consensus Criteria. The information in the International Consensus Primer also helped me feel confident I have been accurately diagnosed.

Getting treatments to manage symptoms of my comorbid conditions (like POTS and MCAS) have led to a huge improvement in my quality of life.

There is nothing easy about any of this, but knowledge is empowering. Please let me know if there are more diagnosis codes you think would be good to include in the list.

Aiming for a better future…

Colleen

PS: All are welcome to print this list out. I am taking the list to my doctor highlighting all the codes that I feel apply to me.

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In the early years of my illness I was prescribed many rounds of antibiotics due to repeated bacterial infections. I was prescribed ciprofloxacin (cipro) in the early 1990s soon after it was available but it gave me hives so I wasn’t on it long. That may have been a blessing in disguise.

T36.AX5 is the new US International Classification of Diseases (ICD) code for people who are suffering from poisoning from this kind of antibiotics.

From the Find-a-Code website, it looks like the WHO classification system uses NE60, which is “Harmful effects of drugs, medicaments or biological substances, not elsewhere classified” with the added specificity of XM3HL2 for Fluoroquinolones.

Danger of Fluoroquinolone antibiotics

Fluoroquinolone medications have a serious black box warning that states:

“These medicines are associated with disabling and potentially permanent side effects of the tendons, muscles, joints, nerves, and central nervous system that can occur together in the same patient. As a result, we revised the Boxed Warning, FDA’s strongest warning, to address these serious safety issues. We also added a new warning and updated other parts of the drug label, including the patient Medication Guide.

We have determined that fluoroquinolones should be reserved for use in patients who have no other treatment options for acute bacterial sinusitis (ABS), acute bacterial exacerbation of chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI) because the risk of these serious side effects generally outweighs the benefits in these patients.”

Some of the antibiotics in this category are:

• Ciprofloxacin (Cipro)

• Levofloxacin (Levaquin)

• Moxifloxacin (Avelox)

• Delafloxacin

• Gemifloxacin

• Norfloxacin

• Ofloxacin

I worry that too many doctors, especially those who were trained before these adverse effects were fully realized, are unaware of the danger of these medications. While I am sure many people can tolerate these antibiotics without adverse effects, it seems likely that those of us with ME are at the highest risk.

From the ME International Consensus Primer on page 2:

The underlying pathophysiology of PENE [post-exertional neuroimmune exhaustion] involves a profound dysfunction of the regulatory control network within and between the nervous systems…

Note: The ME IC Primer, written in 2012, includes Ciprofloxacin in the list of antibiotics to treat microorganisms. While no update is expected for this primer, this is one item that would be good to remove.

See more code info at ICD10data.com

Considering this class of medication can harm the central nervous system as well as the tendons, muscles, and joints it makes sense that those of us who are already dealing with a damaged central nervous system should avoid these as much as possible.

Aiming for a better future…

Colleen

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The latest publication of the ME Global Chronicle came out in December. The Table of Contents provides links to the news from around the world, personal stories, articles about SevereME and much more.

It includes news from various research organizations including PolyBio Research Foundation and NCNED (National Centre for Neuroimmunology and Emerging Diseases in Australia)

One of the articles out of Germany introduces a group that is working to bring awareness to the plight of children. It states:

“We are parents of children affected by ME/CFS. Our aim is to raise awareness among parents, teachers, and caregivers to pay close attention. Only then can others recognize the early symptoms of ME/CFS in children and adolescents . Our goal: to prevent other children and adolescents from developing the same severe ME/CFS illness as our children.”

See that HERE.

Well worth checking out all the articles!

Medicare Telehealth at risk (again)

Medicare’s Telehealth is at risk of ending at the end of this month if members of congress do not pass another extension. I previously reported on this the last time it was at risk. See information in my previous news article HERE. Please contact your members of congress asking them to legislate a permanent extension!

US Postal Service changes policy that will affect date of mailing

Many of us rely on our postal service to submit important paperwork including disability paperwork, taxes, and voting. It is important to know that the change in the way mail is handled means postage dates may be delayed which could cause items to miss deadlines.

Mailing items, like taxes, earlier than normal may be necessary depending on where you live. From USA Today article:

“A change in how mail is processed means items dropped in a blue box may not receive a same-day postmark, affecting time-sensitive mail.”

As many submission deadlines are based on the postmark date, it is important to know about this change.

Social Security deems subjective testimony must be considered

A recent ruling about Fibromyalgia may impact other Social Security disability cases. This could have a positive impact on this community. Too often the experience of patients has been ignored.

The headline on the article from Maryland Matters states:

“Federal court says Social Security can’t dismiss complaints of fibromyalgia sufferers:

Circuit court rules that subjective testimony must be considered in cases with disabilities that can’t be detected by objective medical tests”

Please help get the word out about this important change.

Low Dose Naltrexone (LDN) study

A study out of Jarred Younger’s research group at the Univ of Alabama Birmingham that will look for optimal doses for LDN to treat ME/CFS has been posted on ClinicalTrials.gov.

Jarred Younger posted a video about the trial to answer questions that have been raised. He made clear that they are not yet accepting applicants and it is not yet funded. He explains in the video why the study has to be posted in this way before he can apply for funding.

This initial small scale study is focused on looking at how a small group of carefully selected patients respond to different dosages. The dosages listed are 1.5, 3, 4.5 and 6 mg.

He confirmed that he will post on his video channel when recruitment begins.

I am very happy to see the protocol for the patient selection will be based on the International Consensus Criteria (ME-ICC).

“Inclusion Criteria:

• Between ages of 18 and 65

• Living in the United States

• Meets ME-ICC criteria”

To learn more about ME-ICC used in research, see my View from the Trenches of ME article ME-ICC Research.

Note: These are all much higher starting doses than many of us who use LDN can tolerate. I wrote about my experience with LDN in my article Low Dose Naltrexone (LDN) for Myalgic Encephalomyelitis.

It would be a great help if LDN became an FDA approved treatment which would lead to insurance covering the cost.

Please share

I am grateful to everyone who helps share View from the Trenches of ME articles. All the articles are free to read and share. Please help spread the information.

Aiming for a better future…

Colleen

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Low Vasopressin in ME/CFS

Despite using the ME/CFS label instead of ME-ICC, the study offers important insight into one of the symptoms of myalgic encephalomyelitis that many of us find debilitating. That symptom is hypovolemia (dangerously low blood volume).

From the study:

“Vasopressin (VP), also called antidiuretic hormone (ADH), has a central role in the regulation of water balance and maintenance of both sufficient fluid volume and blood pressure....”

“The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS, first and foremost the chronic hypovolemia which hitherto has remained unexplained.”

In my article, IV fluids for treating Myalgic Encephalomyelitis: How IV fluids help me, I wrote about how getting IV fluids to address my chronic low blood volume (hypovolemia) improves my quality of life.

Ticking the boxes

This study, published on Dec 29th, ticks off some boxes that I consider to be good news. Those being:

1. The patient selection looks like me. I know that because the researchers used the International Consensus Criteria for Myalgic Encephalomyelitis.
   As I have written before it is very important to stratify patients so we know which results apply to us. See my article, Stratifying Patients for ME Research, to learn more about the importance of stratification.

2. The study finds abnormalities that explain symptoms I have experienced.

3. The results offer justification for a useful treatment.

4. The study used 111 patients which should be enough patients for doctors to take the findings seriously.

Best case scenario

A best case scenario is that these research findings will lead to IV fluids being a recognized treatment for ME patients.

Because ME has been buried by systemic bias for decades, there are no FDA approved treatments. I think this study is one step closer to ME being properly recognized.

Aiming for a better future…

Colleen

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For many of us it’s just another day of the week as we stick to our careful routine that helps us maintain a baseline while we wait for treatments/cures to Myalgic Encephalomyelitis and other chronic diseases.

Getting through it

My holiday article from 2023 includes some easy diversions. My holiday article from 2024 talks about lessons learned from having ME for over 3 decades. Including:

“I experience life in the slower/safer lane. When I have tried to live in a faster lane, I end up not being able to move at all. Slow and steady is a worthwhile achievement.”

For those of us with Myalgic Encephalomyelitis, it can be hard to explain to family and friends the choices we make. These choices come from knowledge about the reality of living with a disease that includes impaired immune function, impaired energy production and a reduction of our brain’s ability to process sound, light and odors.

Not our fault

This time of year I often find myself affirming that “this is not my fault”. I caught ME in August of 1989. I am not alone in having caught this disease in the 1980s as there were many outbreaks during that decade. Unfortunately, many have caught ME since then.

Please reach out

If you are struggling, please reach out to someone who understands. I welcome replies to these emails and will respond as able.

May there be better days ahead for us all…

Colleen

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In my article Byron Hyde, MD (1936-2024), I shared information about Dr. Hyde’s work in the field of ME. A memorial for him was recently held in Toronto, Canada. I was not able to attend, but I appreciate Allison May sharing her experience of the event with an article in the ME Global Chronicle. See that article here.

Ivabradine now generic

As I wrote in my article IV fluids for Treating ME, Ivabradine is a medication I have been taking since 2014. The purpose of the medication is to slow the heart rate. This medication improved my baseline and improved my sleep. Funny how having my heart beat like a frightened hummingbird was affecting my sleep…

Ivabradine has been available in generic form for a while, but I am not sure this is widely known. While not all generic medications are as good as the brand name, I have found the generic version works fine for me.

The brand name medication is very expensive, so I think many doctors have been hesitant to prescribe it and may not understand how beneficial it can be for people who deal with high heart rate which seems to be a common issue for many of us.

Oxaloacetate costs how much?

Speaking of expensive medications; Oxaloacetate is a product I’ve seen discussed in the social media ME groups, but haven’t looked into it personally. Costs range from about $50 to $500 (US) for one bottle depending on the manufacturer and the dosage. An article from Encephalogirl has some useful information about the supplement including an alternative approach to reduce the exorbitant cost.

See her article at:

Calling all ME/CFS Allies!

Oxaloacetate

Oxaloacetate is a food grade supplement that has worked wonders for some with ME. I have recently tried it as a crash “rescue” supplement. I’ve taken it during times of severe PEM/a crash either as a one-off or over the span of a couple days. I’ve been experimenting with it…

Read more

8 months ago · 24 likes · 18 comments · Encephalogirl

Research list

I thought it worth sharing that the ME/CFS Research Foundation out of Hamburg, Germany has put together a list of research projects. As stated on their website:

“This section of the ME/CFS Research Register (beta version) provides an overview of past and ongoing research projects on ME/CFS, starting from 2019. Projects include basic, clinical and epidemiological research. Click on a project to view its description and further details including research areas, types, and networks, as well as working groups, people, publications, and organisations connected with the research project. A description of the register’s current scope can be found on the starting page (Home).”

See at: https://mrr.mecfs-research.org/en/mrr/projects

ME/CFS?

As there have been a number of new subscribers in the last few weeks, I wanted to clarify that some of the information I share uses the term ME/CFS even though I don’t think that term should be used for people with ME. My focus for this Substack is ME as defined by the International Consensus Criteria (ME-ICC).

My approach to advocacy is to try to be clear about what I mean when I use the term ME/CFS. Unfortunately, I often don’t know what someone else means when they use that term. I discuss the different meanings in my article ME/CFS is an Umbrella Term.

The experts who wrote the ME International Consensus Primer explain it well.

As stated in the IC Primer on page ii:

“Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms.

There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.”

I couldn’t have said it better!

Aiming for a better future…

Colleen

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Telehealth back (not for long)

The US government has reinstated access to telehealth for those on Medicare. This is a much needed tool for many of us who are too ill to physically visit our doctors. Unfortunately, this is set to last only until the end of January.

DistilINFO’s article, Medicare Telehealth Services Resume After Government Shutdown, states:

“Medicare telehealth coverage has been restored through January 30…”

The article also states this includes audio-only visits which allows for phone consultations.

I have seen comments on social media stating the coverage will be retroactive to Oct 1. I have not found confirmation for that. Worth checking into if you had a virtual visit that was denied.

Hemp products at risk

The hemp industry was targeted in the most recent legislation. This includes a number of products that many use for pain relief and other symptoms. Delta-8 is one of the more well known products that will be affected.

The Hill article, Hemp-derived THC drinks, edibles could soon disappear because of shutdown bill, states:

“The provision “prevents the unregulated sale of intoxicating hemp-based or hemp-derived products, including Delta-8, from being sold online, in gas stations, and corner stores, while preserving non-intoxicating CBD and industrial hemp products,” according to a Senate Appropriations Committee summary.”

A later article in the The Hill has this response from the industry:

“In a memo released Thursday, the trade group said the hemp industry took a serious blow, but they’re confident in finding a path forward because the language in the funding bill gives a one-year period before the ban takes effect.”

This is something we, as citizens, can help save by contacting our Members of Congress.

Changes to Medicaid include 80 hours per month work requirement

Catholic Health Association of the United States put together a useful info sheet explaining some of the details. From the paper:

“To enroll in Medicaid, an individual subject to the work reporting requirements would need to satisfy the work requirement for at least one month before application for Medicaid and must meet the work requirement for at least one month during each six month period in which they are enrolled in Medicaid.”

A few more things worth noting:

• Starts Dec 31, 2026 (or earlier if a state chooses)

• List of exemptions include individuals with disabilities (several other groups are listed for exemption)

• “Individuals must complete at least 80 hours per month of work, volunteering, education, or job training to maintain Medicaid eligibility.”

According to that information those on disability are exempt. I know there are many in our community who are on Medicaid who are not on disability.

It is worth noting that volunteering is included in that list. There are many volunteering opportunities with organizations that understand ME and similar diseases. I hope these organizations will step up to help anyone who needs to fulfill this requirement.

Save money on prescriptions

The PAN Foundation has put together a good list of resources and suggestions to reduce the cost of prescriptions. They also have information for finding financial assistance for prescriptions.

See their article, Tips for saving money on prescription medications, for details.

Aiming for a better future…

Colleen

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October is behind us but the slide continues. October is a time when many people with Myalgic Encephalomyelitis (and some other chronic diseases) experience a flare of many symptoms.

If you aren’t familiar with the term October Slide, that’s probably a good thing.

Some theories about why this happens include: colder weather (for those of us in the northern hemisphere), increase of mold, seasonal allergies, less sunshine, barometric pressure changes, and more viruses going around.

Whatever the reason, I dread this time of year. I always hope I’ll make it to Halloween feeling as good as I do in the summer… that seldom happens. I was enjoying the unseasonably warm weather that lasted longer than expected, but I have definitely been feeling the October Slide.

Due to the ongoing issues with Mast Cell Activation Syndrome (MCAS) hives, I have not been able to share a lot of the ME news over the past few months. I hope to bring more of those to you in the coming months. In the meantime, here are a few items I hope you find helpful and/or interesting.

Corina Duyn

In my April article, I shared about Corina’s book In Bed I Cut Words. I am excited to share that her work has been recognized.

A story about her aired on RTÉ Radio 1 with Brendan O’Connor on 12 July. I was pleased to hear the description used for ME was more accurate than what we often hear. I’m grateful for Corina’s advocacy work!

Brendan O’Connor read a letter from Corina that discusses living in care and the meaning of home.

Her book also received an award - from Corina’s website:

“The book was republished in April 2025 in paperback and won the CAP Award under anthologies for Independent Authors on 10th October 2025 – about a year after the publication of the first. See also Creative Waterford ‘Corina wins prestigious award’”

I am very grateful for her creative work which has provided an avenue to advocate for all of us with ME.

Life Hidden

The blog Life Hidden, by Naomi Whittingham, has a new article. On Gratitude and Grief discusses the difficult experience of living with ME. Naomi’s writings often bring to light emotions I have experienced but haven’t been able to put into words. This one is no exception.

She talks about the heaviness of grief that I know so well, but the following from her article is also something I have experienced.

“But joy, conversely, soars high in a life stripped bare.”

The joy I feel when my hives are gone is hard to describe!

The rest of the article delves deeply into the emotions many of us experience. I highly recommend reading it and following her work.

Maureen Hanson

It is good to see Professor Hanson recognized for her work with the 2025 SUNY Chancellor’s Award for Excellence. Maureen Hanson is a respected researcher in the field of myalgic encephalomyelitis.

She, along with several other faculty members, received an award in the category of Honors for Scholarship and Creative Activities.

The award is described on the State University of New York website:

“The Chancellor’s Awards for Excellence are System-level honors conferred to acknowledge and provide system-wide recognition for consistently superior professional achievement and to encourage the ongoing pursuit of excellence.“

The following from the award’s announcement:

“Maureen Hanson, Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics (CALS), for unique scientific contributions in two distinct areas: plants and myalgic encephalomyelitis/chronic fatigue syndrome.

She has received major recognition for excellence in both fields, attracts funding and trainees to Cornell and keeps a clear focus on applying her findings.”

I have written several times about Maureen’s work in the past. To see those articles use the search function on my Substack, View from the Trenches of Myalgic Encephalomyelitis.

MEGC #54

As I’ve written about before, the ME Global Chronicle (MEGC) puts out a quarterly Table of Contents. MEGC collects ME news from around the world. The Table of Contents for issue #54 can be found here.

As usual there is a wide variety of information from around the world. This issue includes articles about:

• Severe ME

• ME and children

• Grassroots - includes writings from people around the world

• News from countries around the world

• List of petitions

• List of events

• Research news

I assist (when able) as a co-editor. I think it is important to chronicle the events of our community as they happen. I think the world will/should look back at the systemic bias toward people with ME and be appalled.

Upcoming Conferences

Nov 4-6: ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis - Nothing About Us Without Us

“The conference’s comprehensive program brings together leading researchers, clinicians, trainees, patient partners and community collaborators from across Canada and around the world.”

Nov 12 & 13: 2nd International Conference - Scientific and Clinical Advances in Myalgic Encephalomyelitis and Long COVID put on by Aliança Millions Missing.

They are “dedicated to supporting individuals affected by ME/CFS and Long COVID in Portuguese-speaking communities.”

“You can attend this conference in person (limited seats [in Portugal]) or online via streaming. You can register for both days of the event or just one of the days.”

Nov 14, 2025: Polybio Fall Symposium

“On Friday November 14th we have planned an online Symposium where PolyBio-supported researchers and collaborators will present updates on their projects.”

I probably won’t be able to attend these conferences, but I will be watching social media and news reports to see if there is anything new presented.

Aiming for a better future…

Colleen

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They identified a 200-marker model blood test for ME/CFS diagnosis and labeled it the Episwitch®CFS test.

This is a proof of concept study, so we are a long way from it being available to patients. The following are a few things that point to this being a potential biomarker and not a biomarker test ready to be implemented:

• Only tested 47 patients who were diagnosed with “ME/CFS”

• Only compared with healthy controls

• Did not include people with other diseases

• Did not screen patients using the ME-ICC so we don’t know if this is specific to ME

Using this to test people who fulfill the ME-ICC and compare with other diseases will be important for follow-up studies.

Good Signs

Some good signs this research offers insight:

• “ME/CFS” patients were in the severely affected category. I think this makes it more likely the patients may have ME as defined by the International Consensus Criteria (ME-ICC)

• The results “achieved 92% sensitivity and 98% specificity in diagnosing ME/CFS” which gives me hope they found strong signals that show the biological reality of ME.

Useful information

The paper includes findings from previous research that showed “advancements in immunological, genetic, metabolic, and bioenergetic domains”.

It was good to see information included about the immune dysregulation seen in ME. I think this information is worth highlighting.

The paper states:

The following are some of what they highlighted.

• altered cytokine profiles

• included elevated pro-inflammatory cytokines such as:

  • interleukin-1β (IL-1β)

  • IL-6, IL-10

  • tumour necrosis factor-alpha (TNF-α)

  • interferon gamma-induced protein 10 (IP-10)

• increased expression of IL-8 and TNF-α suggests activation of the NF-κB signaling pathway

• Natural killer (NK) cell dysfunction, characterized by reduced cytotoxicity

• Autoantibodies targeting neurotransmitter receptors, including β2-adrenergic and muscarinic receptors

“upregulation of purinergic receptors (P2 × 4, P2 × 5), transient receptor potential vanilloid 1 (TRPV1), and acid-sensing ion channel 3 (ASIC3) has been associated with post-exertional malaise”

Other abnormalities were discussed including disruptions in energy metabolism and altered levels of aromatic amino acids.

News articles

This publication led to a number of news stories touting headlines like:

• Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome (The Guardian Oct 8, 2025)

• ‘Breakthrough’ as scientists develop first-ever test for debilitating condition, (Independent Oct 8, 2025)

• Chronic fatigue breakthrough as diagnostic blood test developed (Independent Bulletin Oct 8, 2025)

• First proposed blood test for chronic fatigue syndrome: what scientists think (Nature Oct 8, 2025)

The latter article states:

“Researchers who are seeking ways to diagnose a mysterious illness called chronic fatigue syndrome may have a new weapon in their armoury. In a study published in the Journal of Translational Medicine on 8 October, scientists in the United Kingdom say they have found a way to distinguish epigenetic changes in the cells of people who have the condition, which is also known as myalgic encephalomyelitis.”

Epigenetics

MedlinePlus description:

“Epigenetic changes are modifications to DNA that regulate whether genes are turned on or off. These modifications are attached to DNA and do not change the sequence of DNA building blocks.”

“Because epigenetic changes help determine whether genes are turned on or off, they influence the production of proteins in cells.”

Many biological systems are affected by the disease ME. It makes sense that epigenetic changes that mess up the production of protein in cells would wreak havoc. While this knowledge may lead to treatments, we still need to know what is causing the epigenetic changes if we are going to have a cure.

Problematic statement compounds confusion

“CFS also known as ME” is an inaccurate statement that has been repeated so many times, it’s embedded in the human psyche.

To be very clear - ME is not synonymous with CFS. I’ve written before about how the diagnostic criteria for CFS-Fukuda is very different from ME International Consensus Criteria (ME-ICC). This confusion has impeded proper recognition for ME. I wrote about that HERE.

Patient selection

The issue with inaccurate patient selection is an ongoing problem in ME research. I have written about the importance of selecting patients based on the best criteria HERE. I urge all researchers to use the ME-ICC to screen patients for ME studies.

The study states they used criteria to select patients based on:

“...we used whole blood samples retrospectively collected from n = 47 patients with severe ME/CFS”

“ME/CFS inclusion criteria: both biological sexes, age 20–80 years old, severe CFS – housebound.

ME/CFS exclusion criteria: any history of chronic illnesses, current or previous cancer, autoimmune conditions or any DNA-modifying or disease-modifying therapies or biological therapies. There was no available data regarding minor comorbidities and previous infection status, including glandular fever or COVID.”

There is no specific information about which ME/CFS criteria was used for patient selection however the researchers being based in the UK and the following statement about screening the controls seems to indicate the criteria was likely the NICE criteria.

“none of the four key CFS symptoms present or in the past”

• See HERE for the different ME/CFS meanings.

• See HERE to learn about the NICE criteria

Looking ahead

It would be great to have a blood test that gives doctors a way to accurately diagnose ME. A true test assay will be exciting news.

While I have reservations about the way the news presented these findings as if the test is already available, I think that any news that leads people to learn about the known biological abnormalities seen in ME is a good thing.

Aiming for a better future (to get here as soon as possible)...

Colleen

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Citation:

Hunter, E., Alshaker, H., Bundock, O. et al. Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using EpiSwitch^® 3-dimensional genomic regulatory immuno-genetic profiling. J Transl Med 23, 1048 (2025). https://doi.org/10.1186/s12967-025-07203-w

Before the ME-ICC was created in 2011, the 2003 Canadian Consensus Criteria (CCC) provided a way to more accurately select patients for research. Prior to that, many researchers used (some still use) the 1994 Fukuda definition for chronic fatigue syndrome (CFS). This led to poorly designed studies that included patients who did not have ME. See more about that HERE.

The ME-IC Primer explained why the ICC updated the CCC and the importance of using the ICC for research instead of the CCC.

Page ii:

“The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology. The criteria are designed for both clinical and research settings.”

“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

Page iv

“Research on ME: The logical way to advance science is to select a relatively homogeneous patient set that can be studied to identify biopathological mechanisms, biomarkers and disease process specific to that patient set, as well as comparing it to other patient sets. It is counterproductive to use inconsistent and overly inclusive criteria to glean insight into the pathophysiology of ME if up to 90% of the research patient sets may not meet its criteria (Jason 2009).

Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS), is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.”

Tracking Research

I (with help from others) track research that uses patients who were selected based on their fulfilling the ME/CFS-CCC. While most of those research findings are likely to apply to people with ME, it is important to verify all findings using the more selective ME-ICC.

See HERE for a list of research that uses patients who fulfill the ME-ICC.

ME/CFS-CCC

2003 - the year the ME/CFS-CCC was created

2011 (May) - First paper (as far as I know) that focused on patients who fulfilled the ME/CFS-CCC was A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis.

175 ME/CFS-CCC Research Papers (found so far)

These 175 papers are calculated based on the October 4, 2025 ME/CFS-CCC research list. This is not a complete list as it is based only on those studies that we have come across. (Please let me know of any other ME/CFS-CCC published studies.)

Note: A few of these studies did not offer clear diagnosis of the patients studied, but were included based on the information provided showing patient selection was likely consistent with the ME/CFS-CCC.

8 Categories

The following shows how many published studies (including preprints) fit into each category. Many studies fit into multiple categories. The category chosen is based on the main findings.

22 years

The following are how many studies have been published in each year since the 2003 publication of the ME/CFS-CCC. I am not aware of any studies prior to 2009.

Subgrouping of patients

We have annotated studies in these lists that show the importance of stratifying into subgroups. Subgrouping is especially important when using the broader ME/CFS-CCC patient group.

It is important to stratify patients based on the following.

• Severity (mild, moderate, severe, very severe)

• Gender

• Onset type (gradual/sudden)

• Pre/post menopause

• Age

• Length of time ill

• Suspected pathogen at onset
  Note: As ME causes immune dysfunction, it is important to take into account that the suspected pathogen at onset may have been a reactivation of an earlier pathogen.

See more in the article Stratifying patients for ME research.

Immune impairment

Immune impairment is the category with the most research papers. Topics include T cell exhaustion, dysfunction of B cells, CD4+ cells, CD8+ cells, and NK cells.

Examples:

• Transcriptional reprogramming primes CD8+ T cells toward exhaustion in ME/CFS

• Discovery of Immune Biomarkers for ME/CFS based on B cell receptor repertoire analysis

• ME/CFS patients exhibit altered T cell metabolism and cytokine associations

• Mapping the Complexity of ME/CFS: Evidence for Abnormal Energy Metabolism, Altered Immune Profile and Vascular Dysfunction

• Naltrexone [NTX] Restores Impaired Transient Receptor Potential Melestatin 3 Ion Channel Function in Natural Killer Cells From ME/CFS Patients

Energy Production & Ion Transport Impairment

Many papers look at issues with energy production and ion transport.

Examples:

• Extracellular vesicle proteomics uncovers energy metabolism, complement system, and endoplasmic reticulum stress response dysregulation postexercise in males with ME/CFS

• Dysregulation of lipid metabolism, energy production, and oxidative stress in ME/CFS, Gulf War Syndrome and fibromyalgia

• Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients

• Metabolic Evidence for Peroxisomal Dysfunction in ME/CFS

• A SWATH-MS analysis of ME/CFS peripheral blood mononuclear cell proteomes reveals mitochondrial dysfunction

Blood / Blood Tests / Urine Tests

Several researchers have been looking into what can be found in the blood and urine of patients. This is an area that needs more follow-up using the more effective ME-ICC.

Examples:

• Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in ME

• Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS

• Comparing DNA Methylation Landscapes in Peripheral Blood from ME/CFS and Long COVID Patients

• SMPDL3B a novel biomarker and therapeutic target in ME

Looking ahead

Despite these studies using patients who fulfill the broader ME/CFS-CCC, I think the findings showing dysfunction of the immune system, mitochondrial dysfunction, neurological abnormalities, etc., give a strong basis for understanding the disease myalgic encephalomyelitis. We need follow-up studies to pin down exactly who these abnormalities apply to and avenues to treat us.

I am grateful to all the researchers who understand the importance of careful patient selection!

Aiming for a better future…

Colleen

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From Leonard Jason’s post on Facebook:

“I invite those with ME, ME/CFS, and CFS, their families, healthcare providers, and researchers to participate in an online survey (link below) for a research study on their perspectives on case definitions and cardinal symptoms of this illness. The results of this survey will shed light on areas of contention in hopes of finding a consensus. The survey will take approximately 10-15 minutes of your time. More information is provided on the first page of the survey.

You can access the survey at the following link: https://redcap.is.depaul.edu/surveys/?s=PY73R7HEPRHMF879

Thank you for your assistance.

Lenny Jason”

To take the survey you must be 18 years or older.

Because the title of the questionnaire is “Can we reach consensus on an ME research case definition?” I “assumed” this was going to ask about the various criteria that exist for myalgic encephalomyelitis, ME/CFS and CFS.

However, the questionnaire didn’t ask about any of the criteria. (I would have voted for the ME-ICC.) It instead focuses on which illness severity scale would be most useful for research.

I think this is an important aspect of research. We need patients more accurately stratified by severity of illness.

I wrote about the importance of stratifying patients in research HERE.

I was familiar with most of the scales listed, but a few were new to me. Even with the previous knowledge of most of the scales, it took me a lot longer than the 15 minutes that was estimated by the researchers.

Activity causes exacerbation of symptoms

I think it is important to recognize that most scales do not take into account post-exertional neuroimmune exhaustion (PENE).

They ask questions like: “I can do XXX”. The issue with these kinds of questions is that I “can” do things but depending on how much energy I use (mental or physical) it can severely impact me for many days. So I “can” do things but I may not be able to do them safely.

I think those questionnaires that delve more deeply into the reality of ME and those questionnaires that take into account PENE are best suited for research into ME.

This was my comment at the end of the survey.

“I think it is vitally important that the ranking of severity takes into account the post-exertional aspect of the disease. Many of these scales do not do this. The FUNCAP does this by asking things like "What are the consequences for you if you perform the activities described below?"

FUNCAP refers to the Functional Capacity questionnaire. See more about that HERE.

I hope the results of the survey bring insight into best research practices for patients with ME.

Aiming for a better future…

Colleen

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So, while I am still saving articles about US health agencies, I have not been up to posting the extensive list on my Substack. Maybe I will get to that at some point. In the meantime these are a few items that I think are important for our community to be aware of…

Medicare telehealth ending

Expanded access to telehealth from home was added to the Medicare benefits a few years ago in response to the COVID-19 lockdowns. As those lockdowns were lifted, the telehealth capability has been available only because of extensions from congressional actions.

I, along with many I know who are disabled and mostly homebound, have appreciated being able to speak with our doctors from home. There is a great benefit to those of us with ME when we avoid expending the energy required to travel to a doctor’s office. It is also beneficial to avoid these high risk environments that significantly raise the risk of catching a virus or bacterial infection.

From https://www.medicare.gov/coverage/telehealth:

“Telehealth includes medical or health services that you get from your health care provider who's located somewhere else (in the U.S.) using audio and video communications technology (or audio-only services in some cases), like through your phone or a computer. Telehealth can provide many services that generally occur in-person, including office visits, psychotherapy, consultations, and certain other medical or health services.”

The American Medical Association (AMA) explains some of the details.

“With the Sept. 30 deadline for Congress to legislatively extend the current Medicare telehealth flexibilities quickly approaching, the AMA sent a July 30 letter (PDF) in support of H.R. 4206, the “Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2025.””

“In order to receive telehealth services prior to the COVID-19 PHE [public health emergency], Medicare beneficiaries were statutorily required to live in a rural statistical area. Even if they satisfied the geographic restrictions, the law required Medicare patients to travel outside of the home to an acceptable “originating” medical site, such as a physician’s office or hospital, to receive virtual care. “

Tracking updates to the House CONNECT bill can be found HERE. According to the tracking guide the bill has a long way to go before it becomes law. It’s currently only in the introduction stage. It still needs to pass the House, the Senate and then be signed by the President.

Tracking updates to the Senate Connect Bill can be found HERE. (added Sept 16)

See more HERE.

Various organizations are pushing for an extension and they are recommending we contact our members of congress to extend telehealth access.

Medicaid work requirements

There has been a lot of press about the upcoming work requirements for those on medicaid which is set to go into effect January 1, 2027. I have seen that many in our community are concerned they would be expected to find part time work in order to keep their medicaid benefits.

I have a lot of concerns about what is coming for the most vulnerable in our society. However, from what I can see, the Medicaid work requirements should not affect anyone in our community who gets Medicaid because they have been judged to be disabled.

From KFF’s July 30th article, A Closer Look at the Work Requirement Provisions in the 2025 Federal Budget Reconciliation Law:

“The law specifies mandatory exemptions including parents and caretakers with children ages 13 and under, individuals who are “medically frail,” and individuals who are pregnant or postpartum, among others (Figure 1). The “medically frail” designation includes individuals who are blind or disabled, individuals with physical, intellectual, or developmental disabilities, individuals with substance use disorder or a “disabling” mental disorder, and those with “serious or complex” medical conditions.”

The MotherJones article, RFK Jr. Is Getting Personal Authority Over Who to Kick Off Medicaid, clarifies more of the details:

“Starting January 1, 2027, states will be required to implement work requirements for beneficiaries aged 19-64. Medicaid eligibility for applicable beneficiaries will be conditioned on completing 80 hours of community engagement per month. Beneficiaries are exempt if they are pregnant, disabled or medically frail, and/or have a dependent aged 13 years or younger.”

Out of curiosity I asked ChatGPT who on Medicaid would likely be required to work. The following is some of its answer:

“That group is often referred to in policy discussions as “able-bodied adults without dependents” (ABAWDs)”

They are on Medicare because:

1. Low income / poverty level: Many states expanded Medicaid under the Affordable Care Act (ACA). In those states, any adult with income up to 138% of the federal poverty level can qualify — regardless of disability, pregnancy, or dependents.

2. Gap group in non-expansion states: In states that didn’t expand Medicaid, some “able-bodied” adults qualify if they’re parents of minor children and very low income. But adults without kids often can’t get Medicaid at all in those states.

3. Temporary hardship: Some people may be between jobs, working part-time, or in unstable employment, and Medicaid is the only affordable coverage.

“So the “able-bodied adults without dependents” (ABAWDs) group on Medicaid is mostly very low-income workers — often in jobs without employer health insurance (like food service, retail, gig work, caregiving, seasonal work, etc.)”

Changes to medicare preauthorization

The changes to Medicare preauthorization have also been making the news. Medicare Resource Center clarifies some of the details:

1. Takes effect on Jan 1, 2026

2. The program only affects the following states: Arizona, New Jersey, Ohio, Oklahoma, Texas, and Washington.

3. Affected procedures needing prior approval include the following:

   1. Facet joint procedures for back pain

   2. Nerve and muscle tests (electrodiagnostic testing)

   3. TENS units and similar electrical stimulation devices

   4. Hyperbaric oxygen therapy

   5. Spinal cord stimulators

   6. Deep brain stimulation (commonly for Parkinson’s)

   7. Sacral neuromodulation (for urinary conditions)

   8. Transcatheter aortic valve replacement (TAVR)

   9. Arthroscopic knee cleaning or debridement

   10. Vertebroplasty/kyphoplasty for spine fractures

   11. Epidural steroid injections

   12. Non-emergency ambulance transport

   13. Botox injections for medical issues

   14. Negative pressure wound therapy pumps

   15. Hernia repairs

   16. Lumbar spinal fusion

   17. Skin graft substitutes for chronic wounds

4. The program is scheduled to run through 2031. If proven effective, it may be expanded to more states or additional services.

Note: I do not have personal experience with this Medicare Resource Center.

Elizabeth Unger has left the CDC

For those of us who have watched the shenanigans at the CDC that brought us to where we are today, this is welcome news. I think the only way we will move forward to a better future is for those who have held us back pass the torch on to those who truly understand the devastating biological reality of Myalgic Encephalomyelitis.

For those not familiar with Elizabeth Unger, she is listed on her Linked In account (as of Sept 2, 2025) as the Chief Chronic Viral Diseases Branch, Centers for Disease Control and Prevention in Atlanta, Georgia, United States.

Many of us came to know her through the Chronic Fatigue Syndrome Advisory Committee (CFSAC). We watched as many good recommendations that would have significantly improved the situation for people with ME were blocked from implementation.

To learn more about Unger’s interaction with some of the ME advocates, see MEadvocacy’s article, CDC You Need a Bigger Ear Horn. The article includes how CDC ignored CFSAC and ignored advocates.

For anyone who would like to understand more about the history, I highly recommend Hillary Johnson’s book, The Why: The Historic ME/CFS Call To Arms.

Aiming for a better future…

Colleen

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So, I thought it would be helpful to delve into how the ME-ICC has been used for ME research so far. I (with help from others) track research that uses patients who were selected based on their fulfilling the ME-ICC.

We also track research that uses patients who fulfill the ME/CFS Canadian Consensus Criteria (ME/CFS-CCC). There are a LOT more studies that use this broader criteria, which is understandable since this criteria was written in 2003 and has been widely accepted for over 20 years. While most of those research findings are likely to apply to people with ME, it is important to verify all findings using the more selective ME-ICC.

ME-ICC & ME-ICP

2011 - the year the ME-ICC was created

2012 - the year the ME IC Primer (ME-ICP) was created. This provides guidance to confirm a patient has ME as per the International Consensus Criteria. (For ME-IC Primer in multiple languages see HERE.)

2013 (August) - First paper (as far as I know) that focused on patients who fulfilled the ME-ICC. That study, Impaired cardiac function due to small heart and orthostatic intolerance in patients with ME, out of Japan offered important insight into the cardiac issues seen in ME.

“OI [orthostatic intolerance] was prevalent in ME. Both systolic and diastolic blood pressures were low in ME. A small size of LV [left ventricle] associated with low cardiac output due to diminished stroke volume was frequently observed in ME. A small heart appears to be related to the genesis of ME via both cerebral and systemic hypoperfusion, which could make it difficult for patients to meet the demands of everyday activity. A small heart with impaired cardiac performance due to decreased preload appears to be an important target for the treatment of ME.”

106 ME-ICC Research Papers (so far)

These 106 papers are calculated based on the August 20, 2025 ME-ICC research list. This may not be a complete list as it is based on those studies that we have come across. (Please let me know of any other ME-ICC published studies.)

This review is a snapshot in time. As this list is updated often, the information will likely change soon.

9 Categories

The following shows how many published studies (including preprints) fit into each category. Many studies fit into multiple categories. The category chosen is based on the main findings.

I think it is indicative about the reality of ME that the majority of the research published looks at the cardiac, immune, and neurological abnormalities.

ME-ICC studies

The following are the number of ME-ICC studies that were published in each year since the ICC was created in 2011.

Subgrouping of patients

As part of the tracking of research we have highlighted studies that show the importance of stratifying into subgroups of patients.

Some of these studies showed that ME can be differentiated from Long COVID.

Examples:

Association of circulating biomarkers with illness severity measures differentiates ME/CFS and post-COVID-19 condition: a prospective pilot cohort study

“ME/CFS patients also showed higher levels of serpin E1 (PAI-1) and E-selectin than did both long COVID and matched control subjects (p < 0.01 in all cases). Long COVID patients had lower TSP-1 levels than did ME/CFS patients and matched sedentary healthy controls (p < 0.001).”

Metabolic adaptation and fragility in healthy 3D in vitro skeletal muscle tissues exposed to chronic fatigue syndrome and Long COVID-19 sera (pdf download)

“These findings highlight a pattern of impaired cellular energy metabolism and enhanced ECM remodeling in ME/CFS compared to LC19. Our Gene Set Enrichment Analysis further suggested that all compensatory pathways between ME/CFS and LC-19 were upregulated in the latter compared to the former except for cellular response to starvation…”

Other studies show the importance of stratifying based on diagnostic criteria.

Examples:

Symptom-based survey diagnoses may serve to identify more homogenous sub-groups of fatigue and postviral diseases

“The criteria covering a larger range of symptoms, Fukuda, CCC and ICC, identify a decreasing share of respondents from three of four (76%) based on Fukuda not requiring PEM, to a large majority (58%) based on CCC requiring physically based PEM, and around one of three (35%) based upon ICC with a multi-dimensional PEM.”

Dutch Health Council Advisory Report on ME and CFS: Taking the Wrong Turn

“As can be seen in Figure 1, the only common symptoms of ME and CFS are cognitive impairment and myalgia, which are very often experienced by ME patients, and optional for the diagnosis of CFS. Post-exertional “malaise” (a long-lasting increase of symptoms after physical or mental exertion), an ill-defined, optional symptom for the diagnosis CFS, is not equivalent to post-exertional muscle weakness, a very specific symptom mandatory for the diagnosis ME." NOTE: ME definition in this paper is based on the descriptions from Acheson, Ramsay, and Dowsett.

A comparison of health status in patients meeting alternative definitions for CFS/ME

“These preliminary findings suggest that the ICC identifies a distinct subgroup found within patients complying with the 1994 CDC definition, with more severe impairment to their physical and social functioning.”

Looking ahead

Since 2021 we have seen a significant increase in the number of studies focused on the ME patients who fulfill the ME-ICC. This gives me a lot of hope that researchers are focusing on the most important biological issues seen in people like me.

ME is a devastating disease too many of us caught at some point in our lives. This month marks 36 years since I contracted ME. I was fine one day and extremely ill the next. I knew it felt different than any illness I had experienced in the past. I, like most of us, assumed I would be sick for a few weeks at most. It’s been a long, crazy ride (for me and my family).

I am grateful to all the researchers who understand the importance of careful patient selection!

Aiming for a better future…

Colleen

P.S.: Thank you to everyone who have been helping share the information about the ME-ICC on social media. The more who know about this important criteria, the better for all of us.

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This year I am focusing on some of the published science that recognizes the Severe ME patient group. Research has shown that those who fit into the most severe category have some biological abnormalities that are different than those who are in the mild/moderate categories.

I am pleased to see more researchers differentiating between those who have Severe ME and those who are mild or moderate. Stratifying the patients into severity levels is offering much needed insight into the different groups lumped under the “ME/CFS” label.

Stratifying by symptom severity

The ME IC Primer provides guidance on how to separate patients into subgroups as follows:

For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.

• Mild (meet criteria, significantly reduced activity level)

• Moderate (an approximate 50% reduction in pre-illness activity level)

• Severe (mostly housebound)

• Very Severe (mostly bedridden and needs help with basic functions)

Those who are in the mild/moderate ME category are still seriously ill. There is nothing “mild” about ME.

Better Recognition

A 2024 report out of Denmark underscores the need for better recognition of Severe ME. From the paper The most severely ill patients with ME/CFS in Denmark:

“The most severely ill patients with ME/CFS are bedbound and are completely dependent on external care. Relative to their dire condition, the participants in this study received very little help from medical professionals and health services as well as social services. Caregivers were mainly family members. The most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.”

While that research focused on Denmark, it is clear that this kind of systematic neglect is happening around the world.

Research shows differences

I previously wrote about the preprint, Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In ME/CFS, which indicates the Severe ME patients have some different immune functions than those who aren’t as severe. See details in Is Severe ME a separate disease?: Research offers insight.

The T-cell research paper describes the different groups as:

“People with mild/moderate ME/CFS can often engage in some daily activities albeit with limitations, but those who are severely affected are usually housebound, and in some cases bedbound…”

It goes on to state:

“In contrast, people with severe ME/CFS had higher proportions of activated circulating lymphocytes, determined by CD69+ and CD38+ expression, and expressed more pro-inflammatory cytokines, including IFNγ, TNF and IL-17, following stimulation in vitro, indicative of prolonged non-specific inflammation.”

Another paper, Evidence of Clinical Pathology Abnormalities in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from an Analytic Cross-Sectional Study, also shows differences between mild/moderate and severe patients.

“Compared with mild cases, those with severe disease had raised albumin, free T4 and serum folate, and lower CK, CRP, potassium, creatinine, and bilirubin…”

“This is the first report that serum CK concentrations are markedly reduced in severe ME/CFS, and these results suggest that serum CK merits further investigation as a biomarker for severe ME/CFS.”

The paper, Developing a Blood Cell-Based Diagnostic Test for ME/CFS Using Peripheral Blood Mononuclear Cells, offers more insight into the difference between Severe ME and mild ME.

“These results demonstrate that Raman profiles of blood cells can distinguish between healthy individuals, disease controls, and ME/CFS patients with high accuracy (91%), and can further differentiate between mild, moderate, and severe ME/CFS patients (84%).”

The paper goes on to state:

“Quantification of intracellular phenylalanine, on the other hand, suggests metabolic subtypes existing in the ME patients, with the moderate and severe groups having significantly reduced phenylalanine and the mild ME and MS having increased levels relative to controls.”

“Inconsistent alterations in unsaturated lipids were observed with elevated levels in the mild ME and the MS cohorts and decreased levels in the moderate and severe ME patients (Figure 3E), suggesting a difference in the lipidic profiles of different cohorts.”

Another paper, HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients fulfilling both clinical criteria, also shows the importance of recognizing subgroups.

“In addition, we found a strong association between HERV activation and the condition of presenting ME/CFS disease for our subgroup 2, implying once more that the activation of these elements, whose expression associates with an impaired immune response, is tightly linked with the diagnosis of a subgroup of more severely affected ME/CFS cases…”

HERV = human endogenous retroviruses

The paper, Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in CFS/ME patients, offers more insight into severe patients compared to moderate patients.

“There was a significant increase in CD40 ligand and MHC-II receptors on differentiated mast cell populations in the severe CFS/ME compared with healthy controls and moderate CFS/ME.”

NOTE: The CFS/ME label is used but the research selected patients using the International Consensus Criteria (ME-ICC).

A 2019 paper, Circulating levels of GDF15 in patients with ME/CFS, also shows biological differences between the severe patient and the mild/moderate groups.

“The multivariate analysis results show that cases of severe ME/CFS (but not of mild/moderate cases) have values of GDF15 that are significantly higher than the healthy group (P = 0.01). There were no significant differences in GDF15 between ME/CFS cases with mild/moderate disease, MS cases, and healthy volunteers…”

We can see from these studies how important it is to stratify patients by illness severity.

Over 35 years of having ME, my illness has fluctuated between moderate and severe. I know I’m not the only one with ME who has this kind of fluctuation. We need lab testing that can help categorize patients more accurately.

Aiming for a better future…

Colleen

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IV fluids article updated

Occasionally, I come across information that expands on earlier articles. I’ve just updated the article about IV fluids to include a couple more scientific studies.

The first addition is a 2025 study, Beneficial effects of intermittent intravenous saline infusion in dysautonomic patients with ME/CFS: a case-series that examines the potential role of IV saline in alleviating symptoms.

From the paper:

“In summary, we find promising effects on ME/CFS symptomatology from intermittent IV infusion of saline among ME/CFS cases with dysautonomia/hypovolemia.”

The second is a 2024 study, Low Vasopressin in ME/CFS (P4-4.006), that may explain why people with ME have chronic low blood volume. From the paper:

“Our findings suggest that deficiency of vasopressin secretion is a fundamental measurable part of the disease mechanisms, which may underlie a number of symptoms in ME/CFS, including the common complaint of orthostatic intolerance.”

Hillary Johnson on Low Blood Volume

I was also glad to see that journalist and author Hillary Johnson recently published an article on this topic of low blood volume titled "Volume is Vital": A big idea from the CEO of a company with technology to precisely measure blood volume in myalgic encephalomyelitis. This is the first in a series of articles.

I highly recommend subscribing/supporting Hillary Johnson’s Substack The World of Osler's Web.

For those not familiar with Hillary Johnson, she wrote the vital resource book about the history of ME, Osler’s Web. A more recent Johnson book, The Why: The Historic ME/CFS Call To Arms, provides critical context around the problematic historical public health responses to ME.

Australia News

A recent announcement from the Australian National Health and Medical Research Council (NHMRC) caught my eye. They are establishing an ME/CFS Guideline Development Committee to oversee the guideline development process and draft recommendations.

I am heartened to see that MAYBE the Australian government may make some headway based on their announcement of an “ME/CFS” guideline development committee.

Some of the people included are names I recognize, but many are new to me. I hope they will listen to those who are truly experienced with ME. Included in that list is Professor Sonya Marshall-Gradisnik who is Director of the National Centre for Neuroimmunology and Emerging Diseases at Griffith University. In addition she is a co-author of the International Consensus Criteria for ME as well as the International Consensus Primer for ME. I have followed her career for many years and appreciate all she has done to advance understanding of ME.

UK News

Meanwhile, UK Government's Final Delivery Plan for ME/CFS has been published. I am not well versed in all the details but it sounds like the plan does not make the changes needed for patients to receive adequate care.

I recommend reading the article Campaign Update #24: Responding to the Final Delivery Plan for ME by Karen Hargrave, Emma Gore-Lloyd, and Oonagh Cousins from the #ThereForME Substack.

As they write:

I hope the Australia plan is more effective than the UK plan!

Aiming for a better future…

Colleen

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As many of you know, I am the founder/admin for a couple of groups on Facebook. One of those is a public group called ME-ICC & Other Marginalized Diseases. This is the same group I have run under a few names, but basically it has always been a place to share information in a public setting so people don’t have to join to learn about ME and other marginalized diseases like Chronic Lyme, Fibromyalgia, Long COVID, Sjogren's, Mast Cell Activation, Gulf War Illness, etc.

The other Facebook group is a closed group that focuses on ME as defined by the International Consensus Criteria (ME-ICC). In this group, ME-ICC Info, members are asked to confirm they have checked to see if they are typical or atypical using the ICC as a guide. This private FB group provides an opportunity to delve more deeply into the experience and science for ME as defined by the ICC.

In this ME-ICC Info group, members have collaborated to gather and publish information on various topics related to ME. One of those collaborations led to creation of the ME-ICC Info Table of Contents which provides links to a wide variety of resources.

Topics

The following are a some of the topics covered in the Table of Contents:

• Getting a diagnosis

• Treating ME

• Pursuing disability

• Assessing Functional Capacity (FunCap)

• Emergency room info

• Managing ME

• Handouts for medical professionals

• Severe ME

• Caregivers

• Researching ME

• Videos

• Spanish translations of various resources

This Table of Contents has now been updated to correct broken links and include some new items.

During the process of updating a broken link, I took a fresh look at the 25% ME Group website. This is a UK charity focusing on the 25% of people with ME who are the most severely ill. It is a visually pleasing site that makes it easy to find information.

From the About ME page:

“Inspired by trailblazers like Dr. Melvin Ramsay, who named ME, and Betty Dowsett, our Medical Advisor who proved it’s physical, we’re here for the 25% hit hardest. You’re not just a case—you’re a person battling more than most can imagine, often ignored by a system that should help.”

I appreciate this group recognizes the importance of using the International Consensus Criteria.

“This “diagnosis of exclusion” can feel like a never-ending maze, leaving you stuck at home, managing this alone far too often. The International Consensus Criteria (ICC) is our best hope right now—it’s a clear guide to spot ME accurately, and we’re pushing hard for every doctor to use it.”

They offer a variety of services (mostly in the UK) to members. Information to join can be found HERE.

Until next time… Aiming for a better future…

Colleen

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What is ME/CFS?

ME/CFS is an umbrella label that encompasses multiple patient groups who share a few symptoms. The following are examples of the various meanings of “ME/CFS”

1. ME/CFS (ME & CFS) - two separate conditions

2. ME/CFS as defined by the 2003 Canadian Consensus Criteria (precursor to the International Consensus Criteria (ICC))

3. ME/CFS as defined by the 2015 IOM/NAM report (now used by the U.S. CDC)

4. ME/CFS as per the 2021 NICE guidelines (UK)

Learn more about that HERE.

Differences between ME/CFS-IOM and ME-ICC

The prevailing use of the term for ME/CFS is now the definition created by the IOM report and has been used to train medical professionals since 2015. The IOM report used information based on research of patients who had ME as well as those who only had CFS. The result of that report is that anything that was specific to ME was dropped so they could combine ME and CFS under the ME/CFS umbrella.

The immune, cardiac and neurological abnormalities seen in ME are minimally addressed in the ME/CFS-IOM. The Chart Comparing ME International Consensus Criteria (ICC) and United States IOM Report (SEID) from MEadvocacy.org offers more insight into the differences between the ME-ICC and the ME/CFS-IOM.

ICD code G93.3 or G93.32

The World Health Organization code for myalgic encephalomyelitis is G93.3 which is being updated to 8E49. This code includes CFS as well as post-viral fatigue syndrome. This is the code used by most of the world.

The US chose to change the code for ME to G93.32. This code is also used for CFS and/or ME/CFS. That means people who can exercise (CFS does NOT require PEM) can have the same code as someone who has severe ME who is so ill they may require strict isolation in a dark, a silent setting and may even need a feeding tube.

While it is important to get this code, it can be problematic. Many electronic health record systems will use the label Chronic Fatigue Syndrome when that code is entered into the system.

I can’t imagine there is any other ICD code that covers such a wide range of patient groups. Learn more about these ICD codes HERE.

Basics

ME/CFS, no matter which definition, is not the same as Myalgic Encephalomyelitis as defined by the International Consensus Criteria (ME-ICC).

The Swiss Society for ME & CFS created an easy to use webform to guide people through the ME-ICC. It is currently available in English, German and French. Upon completion of the webform, there is an option to print the report. This may be useful in sharing information about the ME-ICC.

Please note: The Swiss Society link takes you to the cookie permissions and that page is not in English. The translations for the buttons are:

• Ablehnen = Refuse

• Zulassen = Allow.

More info about the ME-ICC can be found in the ME-ICC Info Table of Contents.

Post-Exertional Malaise

ME/CFS, no matter which definition, requires the symptom post-exertional malaise. Unfortunately, it has been widely stated that experiencing "post-exertional malaise" means that a person must have ME/CFS

It is important to understand that PEM (activity exacerbates symptoms) is not unique to ME/CFS.

The ME-ICC Info group on Facebook collaborated to create a document, Post-exertional Malaise (PEM) in Various Conditions, which shows how other conditions also include PEM.

Note: The ME-ICC does not use post-exertional malaise. The ME-ICC requires post-exertional neuroimmune exhaustion. The description of that symptom is specific to ME.

For details about post-exertional neuroimmune exhaustion see the ME International Consensus Primer.

No stone left unturned

Whether a person fulfills the ME-ICC or not, it is important to rule out conditions that are too often overlooked. It is also important to find out if any of these are in addition to having ME. Having additional ICD codes can make a huge difference in what options are available as well as getting approval for disability support.

The following are important to consider even if you fit the ME-ICC.

• Dysautonomia - Seeing a dysautonomia specialist, either a neurologist or electrophysiologist (EP) cardiologist, may offer more options.
  Postural orthostatic tachycardia syndrome (POTS) is one of the more common conditions that can be mistaken for ME/CFS as well as be comorbid (happen with ME). In the US, the POTS ICD code is G90.A. A good resource is Standing Up to POTS.
  I also highly recommend the resources at Dysautonomia International.

• Multiple Sclerosis needs to be ruled out. This will require a brain MRI. While this is not always definitive it is an important scan to look for signs of MS. I have seen far too many find out after years of being told they have CFS that they had MS all along. I also know people who were told they have MS who found out later they actually had ME. A lab that uses higher powered MRI may offer better results. Many machines are 1.5T strength. In my own journey, I have looked for labs that use the 3T MRI. There are some 7T MRIs but those are usually just for research.
  
  My experience with brain scans included getting a SPECT scan which showed I have areas of my brain that do not get adequate blood flow. Brain blood flow issues are well known in ME. A regular MRI may not show the blood flow as it focuses on the structural details of the brain.

• Sleep Disorders - A sleep study to rule out sleep apnea, narcolepsy and restless leg syndrome are needed. These can all lead to symptoms that can be mistaken for ME/CFS.

• Hypothyroidism - Blood tests include checking TSH, Free T4, T3

• Systemic Lupus Erythematosus (SLE) - Blood tests including Antinuclear Antibody (ANA) test.

• Sjogren’s Syndrome - See info at Sjogren’s Advocate

• Chronic Lyme (Borrelia) - testing may lead to more options. May12.org has more info HERE.

• Anemia or Other Hematologic Disorders - iron-deficiency anemia, vitamin B12 or folate deficiency

• Fibromyalgia - many of us experience pain from ME. This pain is often suspected to be caused by fibromyalgia. However it is important to know that fibromyalgia is separate from ME. The research, human endogenous retrovirus (HERV) activation segregates ME/CFS from fibromyalgia while defining a novel nosologic entity, gives good info about identifying different groups.

• Mast Cell Activation Syndrome (MCAS) - Many of us experience MCAS as well as ME. I think this is likely a downstream effect of the immune dysfunction seen in ME. See more info from the American Academy of Allergy, Asthma & Immunology HERE.

Experts who wrote the International Consensus Primer put together a list of lab tests that can help rule out conditions as well as help confirm ME. See page 11 of the IC Primer.

The Conditions to Rule Out List offers more info. I helped create this list over many years before publishing it through ME International. I am no longer a volunteer at that nonprofit, so if you see updates needed please contact them directly.

Stratifying Patients

Another important aspect is to self-identify which patient group you fit into. Researchers are starting to identify the importance of separating patients into groups based on clinical presentation as well as lab findings.

Consider the following even if you fit the ME-ICC:

• Criteria - many of us fit more than one.

• Gender - there are differences in the way men and women experience ME.

• Sudden onset vs gradual onset - See Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI research showing differences in brain white matter patterns between gradual onset and post-infectious onset.

• Severity level - researchers have seen those with Severe ME have different immune functions than those who are less severe. See more about that HERE.

• Pre/post menopause

• Age at onset - information about pediatric ME can be found on page 19 of the ME IC Primer.

• Length of time since onset - research has shown there is a change in the immune system between about 3 and 5 years after onset. See more in the paper Distinct plasma immune signatures in ME/CFS are present early in the course of illness.

• Suspected pathogen at onset which may be hiding in tissues. Research shows that some people with COVID are not clearing the virus. Enterovirus has been a prime suspect for the cause of ME and is also found in tissues. (Polio is caused by a type of enterovirus.) I wrote about that in my article, Viruses Hiding in Tissues. Page 11 of the IC Primer lists several viruses that need to be checked.

Moving Forward

Knowledge is empowering. We know a lot more than most people realize.

Speaking of knowledge is empowering; as I was finalizing this article, I came across the article Treatments. Yes, they do exist: Let's take a deep dive into my treatment regimen by Encephalogirl. I am familiar with most of what is listed. It includes some of the things I am doing (or have done) that improved my quality of life.

I have collected a lot of resources over the years. Please feel free to reach out if there is anything specific you are trying to find. I am happy to share what I know. I am also grateful to everyone who has brought information to my attention over the years. I couldn’t have collected so much valuable information without all your help. (You know who you are! )

Aiming for a better future…

Colleen

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Sources:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners An Overview of the Canadian Consensus Document Bruce M. Carruthers, M.D., C.M., FRCP(C) Marjorie I. van de Sande, B. Ed., Grad. Dip. Ed. © Copyright 2005 https://web.archive.org/web/20140212230705/http://www.cfids-cab.org/MESA/me_overview.pdf

Carruthers, B.M., van de Sande, M.I., De Meirleir, K.L., Klimas, N.G., Broderick, G., Mitchell, T., Staines, D., Powles, A.C.P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D.S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A.R., Marshall-Gradisbik, S., Mena, I., Mikovits, J.A., Miwa, K., Murovska, M., Pall, M.L. and Stevens, S. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327-338. https://doi.org/10.1111/j.1365-2796.2011.02428.x

Karen Giménez-Orenga, Eva Martín-Martínez, Lubov Nathanson, Elisa Oltra (2025) HERV activation segregates ME/CFS from fibromyalgia while defining a novel nosologic entity eLife 14:RP104441https://doi.org/10.7554/eLife.104441.3

Yu, Q., Kwiatek, R.A., Del Fante, P. et al. Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI. Sci Rep 15, 24256 (2025). https://doi.org/10.1038/s41598-025-09379-z

Mady Hornig et al.; Distinct plasma immune signatures in ME/CFS are present early in the course of illness.Sci. Adv.1,e1400121(2015). https://www.science.org/doi/10.1126/sciadv.1400121