A Missing Subset in ME/CFS and Fibromyalgia Revealed? The Disease Course Survey
Subsets may hold the key to understanding ME/CFS and/or FM. While various surveys and studies have looked at subsets to our knowledge none have attempted to uncover one subset that’s been staring us in the face for years.
In the Disease Course survey, former epidemiologist and current ME/CFS patient, Dean Echenberg tries to get a handle on one of most intriguing subsets in ME/CFS and/or FM.
Find out more and please take the survey at:
A Missing Subset in ME/CFS and Fibromyalgia Revealed? Take the Disease Course Survey by Cort Johnson on April 20, 2015 at Health Rising
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.
