Why So Many People On The Internet Have "Cured" Their MECFS
1.) The truly cured
5% of ME patients recover. This number is even higher with proper treatment or after a pandemic as is the case right now with long covid. However, there is no evidence to suggest anything other than rest improves this chance of recovery. They are just lucky.
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2.) The first remission
80% of MECFS patients have what's known as a relapsing-remitting disorder. This means that they will have spontaneous remissions. A slight improvement from something or just lucky timing followed by a remission often leads to the belief that _____ "cured" someone's ME when they are really just in remission. This is a dangerous position to be in as it is indistinguishable from group 1 at least the first time it occurs but a single infection or strong exertion can trigger a relapse.
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3.) The mild positive thinkers
1 in 4 persons with ME is well enough to work, at least part-time. Over time people adjust their lives to pacing and living with ME, given the right therapy and treatment these patients can often be convinced to report they have "recovered" even when objective functioning tests show they are still functioning far below their pre-illness lifestyle.
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4.) The chronically fatigued
30% of people suffer from fatigue at any given time. 20% suffer from chronic fatigue. This chronic fatigue is most often due to sleep issues, hormone imbalances, infections, and autoinflammatory diseases including fibromyalgia. Only 1% of people suffer from MECFS (still millions worldwide but a tiny fraction of those with fatigue) However, many people with chronic fatigue will be diagnosed with chronic fatigue syndrome by doctors who do not know the difference between chronic fatigue and MECFS. Therefore when their underlying condition is treated they will report online that they "cured chronic fatigue syndrome."
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Summary:
As you can see a diagnosis of chronic fatigue syndrome is not the same as truly having MECFS and even within MECFS spontaneous improval of the condition is possible. Therefore there are plenty of people online who have genuine recovery stories after being labeled with MECFS. However, this doesn't mean that there is any evidence that MECFS can be cured. Even evidence of treatments is lacking and in the very early stages.
Therefore, these stories should not be used to invalidate the experiences of MECFS sufferers particularly those with severe ME and those in the 15% of patients whose condition declines consistently.
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The truth:
A disease with no treatment, no cure, and that in 95% of cases will persist for the rest of one's life (excluding periods of remission) is an incurable chronic disease. Please do not use your personal experience with fatigue to invalidate the lived experience of millions of people worldwide who have been in lockdown for decades due to this debilitating severe neuroimmunological disease.
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Myalgic encephalomyelitis is an incurable chronic severe neuroimmunological disease affecting around 1 in 100 people.
It is also known as chronic fatigue syndrome or MECFS. So if ME and CFS are one and the same why do so many people online claim to have cured their MECFS?
First I will acknowledge that 5% of persons with ME will genuinely recover. This number fluctuates a bit and can be higher in the case of epidemics like long covid. So a small minority of these people will actually have had and recovered from MECFS. But so far no evidence suggests anything other than pacing (aka rest) can improve this chance of recovery. If the best treatment is not hurting yourself further this is not a cure and should not be advertised as such. It is an important management strategy. Stop, Rest, Pace but it is not a cure.
Everyone else essentially falls into two categories
1.) People who improved or remitted following a treatment and credit that treatment
2.) People who never had MECFS.
The second group clearly has no effect on the curability of MECFS.
The first group is who I want to address most because I believe they are most harmful to the rest of the community. The problem lies in wanting to get better and wanting others to get better. This is a good motivation. It is a noble intent. But in an 80% relapsing-remitting disease, it is dangerous.
Remissions and improvements happen all the time for no reason at all in MECFS. Or for large conversions of multiple factors. Or due to improvement in any one of the dozens of different comorbidities we all have. This means that it is incredibly hard to draw any conclusion that something you did help you, much less will help everyone else with ME.
Just to figure out if something helps you individually requires far more scientific methods, careful tracking, and multiple trials than most people are willing to undergo.* This means the conclusions drawn from personal experience may not even be true about you personally and are even less likely to apply universally. This is why we need real research into MECFS treatments.* We need a real cure. These mistaken cures stop that from happening.
