Myalgic Encephalomyelitis Diagnosis

Talking with a doctor about ME

I have seen many doctors since contracting myalgic encephalomyelitis (ME) in 1989.  In the early years there were very few tools to help me communicate with doctors.  I was fortunate to live in an area (Southern California) where there were doctors who were at least somewhat familiar with what was then called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

In my experience, the 2011 International Consensus Criteria (ICC) and the International Consensus Primer (ICP) written in 2012 were game changers.

I have used these to help my doctors gain a much better understanding about my situation.  The ICC and ICP have much better information than what is offered on the CDC’s website under the “ME/CFS” label.

Pugsley is intrigued by videos of birds on my laptop.

Talking to doctors about ME

Most doctors today have been educated by the information on the CDC website which is unfortunate.  The CDC’s criteria for ME/CFS is not comprehensive and is known to capture patients who do not fit the diagnosis for ME.  Too often a doctor labels a patient with ME/CFS and stops there, not understanding that ME/CFS is an umbrella term and providing best treatment requires pinning down the more specific diagnosis of ME.  See more about that in my article ME/CFS is an Umbrella Term.

The CDC’s criteria is based on the IOM report’s criteria and leaves out much of what makes ME a distinct disease.  See chart comparing ME-ICC and ME/CFS- IOM criteria HERE. 

While the ICP offers excellent information about ME, it may be difficult to get a doctor to read through all of its in depth information.  A brief overview of some of what is found in the ICP can be found HERE.  Often they just want to know how to diagnose it and guidance for how to treat it.

As I am already diagnosed, when I see a new doctor my goal is to make sure they understand the depth and breadth of the reality of living with ME.  

One of the tools I now use is the printout provided by filling out the webform on the Swiss Society for ME & CFS website found HERE.  It provides an excellent overview of what the criteria for ME requires as well as which parts of the criteria I fulfill (which is all of them).

Diagnosis requires a thorough screening to rule out other conditions and to confirm ME.  It may help to get a tentative ME diagnosis while going through the process of ruling out other conditions.  ME International’s Conditions to Rule Out document lists some of the many conditions that need to be ruled out.  This process can take quite a while. 

Hint:  Screening for dysautonomia is a good place to start.

For treatment information, I refer my doctors to the Personalized Management and Treatment section that starts on page 13 of the ICP.

Description of ME

Another older tool to help my doctor understand ME is from 2001, written by Margaret Williams (pseudonym).  It is titled, What is ME? What is CFS? Information for Clinicians and Lawyers.

The document is 33 pages long and includes references.  As this is an older document some of the information is out of date but the description of ME starting on page 4 is quite accurate.  The following are a few of the items included that I want to make sure my doctor understands.  

“Australian researchers found that patients with this disorder had more dysfunction than those with multiple sclerosis, and that in ME / ICD-CFS the degree of impairment is more extreme than in end-stage renal disease and heart disease, and that only in terminally ill cancer and stroke patients was the sickness impact profile (SIP) greater than in ME /ICDCFS.”

The term ME/ ICDCFS is referring to the International Classification of Diseases (ICD) code

“ME/ ICD-CFS is a multi-system disorder, one form of which can be associated with enteroviruses related to the poliomyelitis virus.  Virally-induced ME used to be known as “atypical poliomyelitis”.  There are acknowledged similarities and overlaps between ME and the post-polio syndrome (PPS), particularly concerning the nature and source of the pathophysiology, including virological evidence that enteroviruses persist in the human central nervous system.  Specifically, the mechanism of the incapacitating exhaustion is identical in the two conditions (ie. in ME and PPS).  In ME there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may include the myocardium.”

“A patient examined in the morning might have nystagmus, which would disappear at midday, recur later, disappear later and recur the next day”. 

“This waxing and waning in the same patient in the same day is typical of almost all findings in ME / ICD-CFS and may lead to medical scepticism.  The most apparent features are extreme post-exertional muscle fatiguability, which is quite distinct from chronic “fatigue” or tiredness, together with recurrent nausea and profound, incapacitating malaise.  It is striking how consistent are the symptoms that characterize this condition.”

In the more severely affected, dizziness is a particularly striking and chronic feature, as is persisting dysequilibrium and ataxia, with patients frequently bumping into things and becoming bruised.  There is impaired neuromuscular coordination, particularly with fine finger movements.  In the severely affected, there may be difficulty with swallowing; choking fits are not infrequent. 

There may be difficulty with voice production, particularly if speaking is sustained. 

There may be seizures, although these are found only in the most severe cases. 

In the most severe cases, photophobia and hyperacusis are common, as is tinnitus; often there is parasthesia. 

Hypersomnia is prevalent, especially in the early stages of the disorder; this may be replaced by reversed sleeping patterns, with vivid and disturbing dreams; unrefreshing sleep is common. 

Abdominal pains often recur; especially in the severely affected, there are usually chronic problems with diarrhea and frequency of micturition, including nocturia.  Bladder and bowel control may be insecure. 

Cardiac arrythmias are very common, with pronounced tachycardia and an uncomfortably pounding heart; there may be paroxysmal attacks of angina-like chest pain…”

The paper also includes the following that has a severe impact on my daily life.

“Food intolerance is a prominent feature across all degrees of severity: multiple sensitivities to normal foods and household chemicals (including perfumes, chemical treatments of furniture and carpets such as flame-retardants and glues in chipboard), petrol and agricultural chemicals are frequent. Intolerance to alcohol and to medicinal drugs, particularly to antidepressants, is virtually pathognomonic.  Patients have to be cautious about all drugs but especially those acting on the central nervous system (ie. anaesthetics), as there is an increased occurrence of adverse reaction.”

In my experience the following is a good “acid test”:

“Heightened sensory input awareness might be called an “acid test” for ME / ICD-CFS:  one world expert claims that it is possible to make a diagnosis by taking a patient into a shopping mall (he calls it the Mall Test) because with all the lights, noise, echoes, smells, movement and confusion, a sufferer would be ready to explode.”

The following highlights other areas that relate to my experience.

“Many patients can walk only very short distances and require a wheelchair. There is difficulty with simple tasks such as climbing stairs and dressing. “

“Problems with short-term memory are common:  32 cognitive impairment is significant and includes difficulty with memory sequencing, processing speed, word searching; dyslogia, spatial organisation, calculation (dyscalculia), and particularly with decision making.”

There are more descriptions in the paper that you may want to highlight for your doctor.

If you come across a doctor who is looking for more in depth information beyond what is listed above, you can recommend the comprehensive hardbound book Understanding Myalgic Encephalomyelitis, by Dr. Byron Hyde.  There are a number of positive reviews written by well recognized experts in the field of ME including Malcolm Hooper, Dr. Sarah Myhill, Dr. Nigel Speight, Hillary Johnson (author of Osler’s Web), Dr. John Chia, Maureen Hanson, Leonard Jason, and others.  Those reviews can be found HERE. 

Commonality in descriptions

I became sick long before the internet and social media offered instant information on any topic. I was having all of these experiences with no idea I had so much in common with others.

I think one of the things that has struck me as vital to understand is that there are so many of us having similar odd experiences.  It makes the idea of “mass hysteria” ridiculous.

The common biological experiences we are all having are not magical.  They are downstream effects caused by something that needs to be researched to be understood.  

In my article Stratifying patients for ME research, I discuss why it is vital that only those who have these experiences in common as defined by Ramsay and/or the ICC are appropriate to be used to research the distinct disease myalgic encephalomyelitis.

Leaving No One Behind

So what about all the people who have been told they have “CFS” or “ME/CFS” but do not experience what is described by these ME definitions?

As I wrote in Missed Diagnosis, I have known far too many in the online groups who were given a label of ME/CFS or CFS who discovered later they had a treatable (or life threatening) condition that had been missed.

I think it prudent for anyone who reads the full ME description and finds these symptoms are not part of their experience to seek further screening to make sure nothing has been missed.

Aiming for a better future for all of us - no matter which label we have been given. 

Colleen

P.S.: The ME-ICC Info Table of Contents also has a wide variety of helpful links.

Information provided here or in comments is not to be considered medical advice