Mayo Clinic consensus document on ME/CFS
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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
Pronouns: they/them - ME/CFS since 2017
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@river I haven't got the mental energy to read this but I noticed that some of the lists were inadequate
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@iris which lists do you mean and what did you think was inadequate about them? (only respond if/when you have the energy)
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@river the list of co-morbid conditions seemed quite short and as one example did not include multiple chemical sensitivities. Also the list of pathology tests to be done before diagnosing me/cfs seemed quite short
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@iris MCS is listed along with a much larger list of other comorbidities in "supplemental table 3" in the "supplemental online material" which is downloadable as a PDF from that page. Also a much more comprehensive list of recommended tests is in one of the supplemental tables in that pdf as well. The full tables are not embedded directly on the page, I suppose they wanted to save space as it is biiiiggg.
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@river It’s taken me awhile to skim through this, but I agree it’s a very good read. It would be something I’d like to print out and hand hard copies to a few people I know, especially my GP. Thanks.
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@river thanks for this! I've just shared with my family. Helpful to explain the options for management to them. Basically not much! But at least it's all written down so they can see that.
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@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.
