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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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If the international medical community now wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we could have another go at promoting the term ME/myalgic encephalopathy - which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriosuly challenged.
The report says that they considered myalgic encephalopathy and that the presence of encephalopathy is supported by the literature but that they felt the emphasis on myalgia was undue and didn't address the cardinal symptom of intolerance of exertion. I agree with you; I think we should push for myalgic encephalopathy. At least it's accurate and sounds like a serious medical condition. This SEID thing is yet another weird confusing name we don't need.
Can another option be added to:
Better than the status quo, but I'm unsure at this time whether I would endorse it myself.
maybe it would be SID since you'd still be system intolerant to many other things.So if someone has SEID, but then gets over PEM, while still having all other symptoms remaining, they then magically have a wholly different disease than SEID?
Besides which, the word 'immune' has to be in the name.
The status quo is that most clinicians and researchers use CFS, or sometimes ME/CFS. The question is, does the Institute of Medicine's new name for ME/CFS of "SEID", Systemic Exertion Intolerance Disease" represent a step forward or not?
It's still not the right name of course, though better than CFS. The new name doesn't really cover the mild ME's.
I remember when I first started showing signs of ME in the 90's, I was still able to work full-time. And I wasn't able to recognize in those years that I was getting symptoms from exertion. So it would have been hard getting a diagnosis with the symptoms I was having back then.