@river said in Mayo Clinic consensus document on ME/CFS:
I recently found this document from Mayo Clinic which provides a very thorough summary of everything you need to know about ME/CFS. It's by far the best clinical resource I've come across so far, and I feel like it should be required reading for any healthcare professionals we deal with, and for patients themselves if they have the capacity to read it.
I think it would be good to pin this to the forum, if admins agree.
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
I agree, the most thorough summary I have seen. Took me a while to get through it, but that was just my cognition, not the article. Reading through it, I am not surprised that the diagnosis is missed so much. If your medical practitioner is not up to date, you have no chance of an accurate diagnosis or treatment plan. I think pinning is a good idea.
As a side note, does anyone know why the term Systemic Exertion Intolerance Disease (SEID), proposed by the World Health Organisation (WHO) was rejected? Chronic fatigue is a symptom, Chronic Fatigue Syndrome is, based on the definition of Syndrome "a group of signs or symptoms" but not a true representation of the severity of the condition and waters it down a bit. In addition, because of early misinformation, CFS is often stigmatised as not real. Myalgic Encephalomyelitis (ME) is a much better (more validating) label, as shallow as it sounds because it is a more believable term than CFS. The same applies to SEID. Sometimes labels are a waste of time, but in this case, I actually think we should get rid of CFS because the perception of the label is generally negative. I don't care that people (non-sufferers) don't know what ME or SEID is because they will learn eventually. It also removes some of the confusion around the symptom of chronic fatigue, which can be a symptom of a few disorders or diseases.