The meaning of CFS depends on who you ask

Why did I stop saying “CFS also known as M.E.”?

Sep 05, 2023

My heart sinks every time I see the phrase “Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis" written in an article or a research paper.

That's because I am well aware of the perception society has about "chronic fatigue syndrome". There is a systemic bias that has impeded social support, patient care, disability support and accurate research.

I think understanding the differences between CFS and M.E. based on the criteria descriptions may help overcome much of the confusion that has caused so much harm over the decades.

Tabby cat looking through a window — Wednesday enjoys watching out her window.

CFS label was originally applied to the 1984 Incline Village outbreak. Over time the meaning of that label morphed and was applied to more than one criteria. At this time the name CFS usually refers back to the CFS-Fukuda definition written in 1994. This definition is more of a government construct than an actual disease definition.

Diagnosis for CFS per Fukuda

Criteria for CFS as per Fukuda is as follows:

Prolonged or chronic fatigue that persists or relapses for more than 6 months.
Four or more of the following concurrently present for more than 6 months:
impaired memory or concentration
sore throat
tender cervical or axillary lymph nodes
muscle pain
multi-joint pain
new headaches
unrefreshing sleep
post-exertion malaise

Due to the name, doctors and society naturally focused on the symptom of "fatigue" and anyone who had been complaining of fatigue for more than six months was a good candidate to receive the CFS diagnosis.

Because almost every condition or disease has fatigue as a component, this vague criteria made it easy to put the CFS label on difficult to diagnose patients. Once that CFS label is attached, many of us have found it to be very hard to get more testing done to rule out other conditions. A common scenario for patients goes something like this:

The initial (lazy) doctor asks a few questions about fatigue and verifies that a few other symptoms like headache, memory issues, or muscle pain, etc. apply to the patient’s situation. Post-exertional malaise is not required for this diagnosis. A few basic labs are ordered and they come back normal. The doctor gives the CFS diagnosis and tells the patient to go home and try to live a more active life.
The patient continues to be sick and often becomes sicker due to the doctor’s poor advice.
The patient then consults another physician who sees the diagnostic label of CFS. This doctor “assumes” the first doctor took the time to rule out all the other conditions that might lead to similar symptoms. More labs are ordered and these also come back normal.
This doctor relies on the first doctor’s opinion and results from basic labs and concludes the problem lies with the patient’s attitude. The doctor often suggests various behavior modification treatments and may prescribe antidepressants or other medications that are not appropriate for someone with M.E.
This pattern continues through many different doctors, but that first doctor’s diagnostic label of CFS has started the patient down the wrong road. If that first doctor does NOT do a thorough screening before labeling a patient as having CFS, decades can pass before a patient finds out they have been misdiagnosed. I wrote about missed diagnosis in a previous article HERE.

A vague criteria that could be applied to a vast array of patients makes it easy to give a label in a short amount of time.

CFS = faster diagnosis = more patients per day = more $

Naturally, this group of fatigue patients includes people with myalgic encephalomyelitis (M.E.) but it also includes many other patient groups who may respond well to behavior modification like exercise, diet and cognitive behavior therapy.

M.E. Patients with the CFS Label

I had a CFIDS label and a CFS label for many years. It took information based on the International Consensus Criteria (ICC) and International Consensus Primer that I provided to my doctor (with much nudging) to change the label in my chart to M.E.

I have seen angry comments on social media about promoting the use of the M.E. label instead of the CFS label. I think some of this arguing is pushed on the M.E. community by entities profiting from vague criteria (like insurance agencies or “CFS” clinics). I also understand some patients feel they are being marginalized because their doctor uses the CFS label instead of the M.E. label.

In my experience, most patients appreciate that there is a problem with the CFS label. A major problem being the promotion of CBT and GET that came out of the CFS criteria that ignored the post-exertional neuroimmune exhaustion required for an M.E. diagnosis.

I see the education about criteria and labels as empowering patients. I think we can all agree it is not good health care when the labels that are used interfere with patient care.

I have been dealing with M.E. for 34 years (diagnosed before Fukuda was written) and I have seen first hand what happened when CFS Fukuda and other vague CFS criteria affected the way Doctors treated patients.

The Problem with Equating CFS with M.E.

Unfortunately, most doctors are not educated to properly diagnose M.E. It falls on patients to become empowered in order to have the tools to educate medical professionals about the importance of proper diagnosis based on best criteria.

While some doctors may provide decent care under the CFS label, we still have far too many doctors who have misconceptions about what “CFS” is.

I have sought to improve the information in my medical records so that in an emergency situation, or when being seen by a specialist, the CFS label doesn’t interfere with me getting the care I need.

The M.E. International Consensus Primer states on page ii

“Problem:
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. 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 agree with this approach of separating patients with M.E. out from the broader CFS group of patients. For decades I have seen people receive a CFS diagnosis who were not offered adequate screening. Over time some found they had a missed diagnosis that required treatments not offered under the CFS diagnosis or their symptoms self-resolved. Recoveries were often attributed to exercise, psychological therapy, various over the counter products or alternative medicine treatments.

Dr. Hyde’s book, Missed Diagnoses 2nd edition published in 2010, states on page 20:

“The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and other in 1988 (Holmes, Kaplan, Gantz, et al. 1988; Holmes, Kaplan Schonbert, et al.,1988)....
There are two subsequent definitions. The Oxford definition of 1991 (Share et al, 1991) and the 1994 NIH/CDC definition (Fukuda et al., 1994) are basically with a few modifications, copies of the first definition.….
Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician and insurer alike have tended to treat this syndrome as a specific disease or illness…
This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological or social treatment or simply say, “You have CFS and nothing can be done about it.”
The CFS definitions have another curiosity. If in any CFS patient any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage. The closer you approach, the faster it disappears and the more problematic it becomes.”

Downstream effects of vague criteria

At some point insurance payments to medical care providers became tied to a diagnostic code. Previously doctors took time to evaluate a patient’s history and symptoms before giving a diagnosis. This well thought out process was replaced by the computer age that required a diagnosis be given as soon as possible to submit a claim for reimbursement.

The July 2023 article, Diagnosis Code Decides if Medicare Will Pay, at Very Well Health states:

“If your healthcare provider does not pick the right diagnosis code, it is possible your insurance plan will not pay for the care you received. That leaves you paying not only a copay or coinsurance for the test or visit but the full dollar amount.”

Diagnosis codes also affect how disability is awarded and it factors into the funding of research.

Because the CFS-Fukuda criteria is so vague, it has led to researching vastly different groups of patients. Some of that research focused on patients who had other conditions including psychological diseases. These other patient groups have no connection to myalgic encephalomyelitis.

From my point of view it has looked like government health agencies, insurance companies, disability judges and even patient organizations have turned a blind eye to the patients who were being harmed by the mixing of patients under the broad CFS umbrella.

Moving us forward

Thorough screening is key. The IC Primer educates doctors to thoroughly screen, including what kind of lab testing is needed to rule out other diseases and confirm an M.E. diagnosis.

I think that moving beyond the “CFS” (& “ME/CFS”) umbrella label is needed to make sure patients are accurately diagnosed. Along with that, I think we need a separate diagnosis code for those who have M.E. as defined by the International Consensus Criteria, or we need everyone who doesn’t have M.E. to be removed from the 8E49 or G93.32 code so that there is only one patient group under those codes.

Either step requires that government agencies and insurance companies put systems into place that promote thorough screening instead of roadblocks to stop thorough screening.

I think that as long as people continue to state “CFS also known as M.E.”, the care for patients will continue to be subpar. That is a status quo I don’t think anyone wants to see continue.

When you see the statement "CFS also known as M.E.", please explain that these labels have very different meanings.

Colleen

Note: I am writing M.E. so that the audio version of this post will be read aloud accurately. To listen to this post, use the “play” button at the top of the post on the Substack app.