A Missing Subset in ME/CFS and Fibromyalgia Revealed? Take the Disease Course Survey

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Reprinted with the kind permission of Cort Johnson and Health Rising.

By Cort Johnson

Several studies suggesting that people with recent onset chronic fatigue syndrome (ME/CFS)  differ immunologically from longer duration patients may have uncovered a new subset. No studies that I know of, however, have examined a subset that’s been evident at least anecdotally for quite some time: the relapsing/remitting subset – people with ME/CFS who become well for extended periods of time only to relapse later on.

While this survey is an attempt to learn more about this subset  it is for everybody. Whether you have the relapsing/remitting form of ME/CFS or the non-relapsing remitting form please take it.

Relapsing Remitting Disorders

People with the relapsing – remitting form of ME/CFS can experience periods of wellness followed by dramatic relapses Other disorders can have a relapsing/remitting nature. Most people (85%) when first diagnosed with multiple sclerosis have a relapsing/remitting form of it.  During their relapsing phase  inflammation damages the nerves. During the remitting phase their symptoms can partially or even fully disappear.  People with the relapsing remitting form of MS tend to have more brain lesions and inflammation while people with the progressive form tend to have more spinal cord lesions and less inflammation.

People who have had malaria in the past can experience relapses years later as heretofore dormant liver parasites reactivate.  The Borrelia bacteria can cause a short-term relapsing condition called “relapsing fever” characterized by periods fever, wellness, fever, wellness, etc. Migraine could be construed as a short duration relapsing-remitting illness. Some people with autoimmune diseases can  have periods of remission followed by relapses. Donna Jackson Nakazawa was able to regain her ability to walk and work after suffering from sudden paralysis due to an autoimmune illness only to suddenly collapse several years later.

The Relapsing Remitting Form of ME/CFS

Dean Echenberg has the relapsing/remitting form of ME/CFS.  A former physicians and epidemiologist, he had this to say about this subset:

 “I think this is a problem with much of the research I have seen. Questions regarding the presence or absence of symptoms and functionality often have a check-list that asks how the patient feels today.  Sometimes they ask about the last few days, or even the last year, but the questions are not presented in a way that provides valid  information on the dramatic variability some people experience.

They assume a constancy in symptom presentation that may not be present. While many studies might assume a certain rhythm of the disease process, I am not aware of any that take into account the irregular periodic  interplay  between  the rapid appearance of total prostration,  followed  by complete  disappearance of symptoms, over and over again.  The sampling of patients must take into account the phase of the pathophysiology they are experiencing.

I am not certain if this phenomenon is a general characteristic of this disease and seen in all very long term patients.  But I do know that it is an important characteristic of at least a subset and that it needs further attention.”

This survey is presented in an attempt to get an idea of how abundant this group is. It contains two parts:

  • the first is for people who do not experience this relapsing/remitting pattern
  • the second for those do experienced a relapsing/remitting pattern of illness

Dean Echenberg’s Story

“Irregular periodicity of ME/CFS with recurring clinical  remissions and  relapse may be a key to understanding it” Dean Echenberg

My problem struck almost 30 years ago.  I can tell you the time it hit me within minutes.  I had the usual bad flu that didn’t go away for a couple of years. I have been seen by multitudes of medical specialists and have had too many tests – all of which were all negative except for some obscure malfunction of Killer T-cells.  But that is it.

Even the most skeptical of the medical practitioners I have consulted with have agreed with the diagnosis: at the time it was called CFIDS (Chronic fatigue and immune dysfunction syndrome), now officially called ME/CFS or SEIDS.

Over the past 30 years the illness has waxed and waned and not at all in a subtle away.  It is almost like I have an on and off switch.  The remission phases have varied in timing but not in character. At times I seem to be completely better. So much so that for years I thought I was “cured”.  During this phase, even close family, who didn’t see me when I was in the attack phase, had difficulty believing that there anything was wrong with me.

But then, when they saw me in the attack phase, (the bed to couch and back again phase) they had no doubt.  All they had to do was look at me and they knew I was seriously ill.

I would seem perfectly normal; then BAM.  It was obvious to them that, suddenly, there was something seriously wrong with me.  This was especially problematic for me during the earlier decades when I became ill.  If I saw a clinician during a remission phase, I was almost embarrassed to tell them what was wrong, it seemed so far-fetched.

You can take the survey HERE.


About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

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