PhoenixDown
Senior Member
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Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I take those with a grain of salt. Most of them are common co-infections or additional diseases ME patients are likely to have. But the "I really have ..." post gets made as soon as the diagnosis is made, not after treatment for the new diagnosis is complete and the patient can determine if the symptoms are actually gone.If you Google:
CFS "turns out"
with the quotes, you'll find numerous people who were misdiagnosed with CFS.
yes, it's complicated, because there is both the problem that people who are genuinely explained by other diseases are getting badly diagnosed (not just with something thought to be a 'wastebasket' diagnosis but someone with MS, for example, may go through diagnoses of RA and bipolar disease before getting proper diagnosis)...
and the problem of people having multiple illnesses. In the case of ME/CFS, the inclination of doctors is to necessarily discard the 'wastebasket' diagnosis once diagnosed with Lupus, cancer, sleep apnea, celiac, EDS, and so forth, but this is not necessarily correct. Having one autoimmune or connective tissue disease (if ME is either of those) makes it more likely to get another.
Of course when doing studies it's sometimes preferable to find patients with only ME if possible, but in clinical practice people certainly may have more than one disease and for us this seems quite likely.