ME is Not Just Chronic Fatigue.
1 in 5 people suffer from chronic fatigue.
1 in 100 people suffer from Myalgic Encephalomyelitis.
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MECFS is not just chronic fatigue. It is a severely disabling neuroimmunological disorder that affects every system in the body.
3 in 4 ME patients cannot work even part-time. 1 in 4 are permanently bedbound/housebound.
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Out of 20 people with chronic fatigue, only 1 will experience PEM and suffer MECFS. 19 will likely benefit from some form of physical therapy. However, 1 patient with MECFS will likely be irreparably harmed by this treatment. There will be no long-term consequences to a slight delay in treatment for the other 19 patients. Therefore doctors must rule out MECFS before attempting to treat chronic fatigue with physical therapies like GET (Graded Excercise Therapy).
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Only 1 in 30 people with fatigue suffer from MECFS. So that thing that helped your friend with fatigue, is not likely to help someone with this incurable and untreatable chronic disease.
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MECFS research is research into a disease in which chronic fatigue is not just a symptom but a highly disabling systemic issue. Therefore this research on the 1% of people with MECFS has the potential to help the massive 20% of the population that suffers from the symptom chronic fatigue.*
*Generally from any other autoimmune, autoinflammatory, sleep disorder, or chronic condition
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Myalgic Encephalomyelitis is not just chronic fatigue.
I think this point has been made a good number of times. But what startled me recently was learning just how common fatigue really is. About 1/3 of adults in the US suffer from fatigue at any given time. Only 1 in 100 suffer from MECFS. While 1 in 100 is a huge prevalence for a severely disabling neuroimmunological condition. Compared to the symptom fatigue it is nothing.
This combined with the fact that in the US there is no medical code for MECFS only "chronic fatigue unspecified" CodeUsCountUsCureUs" means that doctors are going to be encountering actual ME patients only a 1/20 times they encounter a chronic fatigue patient and 1/30 times they encounter a patient with fatigue.
This astounding fraction is why the name Myalgic Encephalomyelitis or MECFS is so so important and we cannot settle for chronic fatigue syndrome. This extremely disabling neuroimmunological condition cannot continue to be confused with an incredibly common symptom. With #millionsmissing and bedbound or housebound so they are missing out on #healthcare altogether the proportion of patients-doctors see with this condition is minuscule. That is why we are treated as a rare disease. Not because we are rare but because fatigue is so common and we are misunderstood. Mitochondria, not hypochondria.
With the advent of long covid, PEM or Post Exertional Malaise is slowly becoming a more commonly known symptom. This and the fact that MECFS is no longer a diagnosis of exclusion and has clear diagnostic criteria must become general knowledge among GP and medical practitioners.
Otherwise, in a giant pool of people suffering from the (legitimately terrible) symptom of chronic fatigue, our extremely disabling and debilitating condition becomes invisible.
