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.
To become a member, simply click the Register button at the top right.
The first paragraph in particular relates to US history, and not UK for example, right?
ME or myalgic encephalomyelitis has always been a preferred choice for many patients and patient support organizations particularly in the UK and Canada but the term chronic fatigue syndrome or CFS has held sway for almost sway for over 15 years in the scientific community. With the publication of the Canadian Consensus definition in 2003 and the introduction of the term ME/CFS, the term ME began to return to visibility there. The IACFSs name change to IACFS/ME and Rich Carsons Fair Name Campaign sparked name changes in several U.S. organizations and the patient community largely embraced it. Now in the International Consensus Criteria, the CFS has been dropped and ME, standing by itself has, after over 20 years, been given a new life in the research community.
Cort,
It must have been hard to put this together with some sense of coherence. The history of this illness (or illnesses) is so diverse and all over the place that is very confusing. I thought you did a great job putting evrything in perspective. Thank you.
Nice work, Cort. Thanks.
Thanks Firestormm - that was definitely done from a US centric position (I belatedly recognize). I changed some parts of that paragraph to make it more accurate.
Cheers chap
Thank you very much Cort for bringing all this together and the hard work involved. Must say personally that all the symptoms listed occurred (predominating at various stages) and agree with the notion of a "core" dysfunction. That ME and so called CFS are basically the same - acute/chronic might possibly be due to the extent of initial damage or "insult" Docs use ? (in a core system) Much food for thought in your writing.
Great work Cort!
Thank you Cort for this report. I was surprised!!! It was odd that none of the US groups even mentioned it beyond a very cursory, brief mention by the CAA. But ME is the definition and disease identity, not just a name change. The massive attempts for mere inclusion or add on of the term ME as a mixed or hybrid term, from the fair name and henceforth, has been met with strenuous objection. ME/CFS was never a name change, the purpose of which has always been to get rid or the damaging and demeaning CFS, which it did not do, and ME is certainly not a new name.
Cort, The ME/CFS only further obscured the real issue of recognizing ME. ME/CFS was stopped at the fair name level and then resurrected again under the guise of some Unity campaign -- which was certainly not the case within the patient community. That Globe poll from a few months ago asked for a vote on what to call it, and around 24% said CFS or ME/CFS and 73% chose other.
ME/CFS makes no sense, diagnostically or even on the public/awareness front. No one knows what it means (as it has no established meaning anywhere). At best oh that's CFS but added ME to keep patients happy <winkwink> Going on about ME/CFS research at HHS? There's no such thing.
It was really "amazing," it was the real ME advocates who pushed the issue forward and put pressure on the researchers as well. This is what's been missing in advocacy. If anything it's been go along to get along and give them what they want and make the best of it.