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It never had a chance to happen because of the negative response of the community to recommendations by a name committee associated with the (official) CFS Co-ordinating Committee (a precursor to the CFSAC with possibly a little more power?) and then the Institute of Medicine committee. We can’t...

A lot of people are heavily entrenched with with ME all right. But this is not proposing to change ME but drop CFS, which is far less popular. Though I think it is true that a lot of the reason SEID never took off was because of the attitude of proponents of ME. We had another chance to change...

I never found this a very convincing reason. Who cares how words/acronyms are spelled backwards. And it’s not even a particularly fatal disease.

(I wasn't sure which forum to post this to). This is being promoted as being a relevance to people with ME. I haven't watched it and know very little if anything about this area.

He also gives the wrong name in the slide: he uses "systemic exercise intolerance disease". The way he says it, people or at least some people could be laughing at a new name being proposed rather than the specifics of the name.

Thanks for posting the link, not sure why it has been deleted. I believe he starts the section by saying something about it being unfortunate that a new name was proposed and was generally negative about it. Some people tend to match the lead from a speaker; it wasn’t clear to me people were...

It was largely patients and patient groups who started using “ME/CFS” with official entities using CFS and occasionally “CFS/ME”. Now lots of clinicians, researchers and official agencies use “ME/CFS”.

Using the argument that one should only use terms that have coding would seem to condemn us to existing terms in perpetuity.

“Chronic Fatigue Syndrome” basically allows for criteria that don’t require post-exertional malaise/post-exertional neuroimmune exhaustion e.g. Oxford and Fukuda. With “Systemic Exertion Intolerance Disease”, it’s much easier to argue that research and clinical criteria should require this...

Fatigue is an even less specific term.

There are thousands of other conditions: how does one know what to combine with? Normally when I have heard this, it involves pairing up with conditions about which there is some scepticism/disbelief/stigma/similar e.g.?Fibromyalgia, “Chronic Lyme”, IBS, etc. Also you may get more money but you...

Lots of other agencies/similar in other countries also use “ME/CFS” including the NIH and the CDC. So there is a precedent for agencies using two acronyms together in many contexts.

Yes, I suggested this in 2015. It would move away from chronic fatigue syndrome, which I think is a terrible name. But many researchers, clinicians and institutions are not willing to go to with myalgic encephalomyelitis on its own, but will use it in combination with something else. It's my...

Useful list. But 16 papers over 7 years isn’t a huge amount especially when some other criteria were also used sometimes. It’s also not clear the number of such papers is increasing with time.

The International Consensus Criteria paper and International Consensus Primer are both full of ME/CFS and CFS citations.

Free full text: https://www.clinexprheumatol.org/article.asp?a=15345

This isn't biomedical research so I posted it here.

For what it’s worth: I satisfy all ME, ME/CFS and CFS criteria. I tend to have nearly every symptom listed that a man can have. But I’ve never had any hypermobilty in any joints. In fact, things went in the opposite direction despite being quite active in the early years and spending a lot of...

It’s also much easier to get government payments than private insurance disability payments in Ireland. My impression is it’s easier to get the main government disability payment here than in the US. Though it’s basically at the level of unemployment payments when really long-term...

Free full text: The Disability Dilemma: Difficulties Involving ERISA* Claims for Subjective-Proof Diseases https://digitalcommons.law.ou.edu/cgi/viewcontent.cgi?article=1395&context=olr *Employee Retirement Income Security Act