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So having put in my six penn'orth, I'll ignore the thread.

I think Trish summed up the situation well: And neither do we know enough at this point to be knocking around suggestions for alternative names. And it is actually of some relevance to the thread topic [ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with...

I used to love this one - we got to elbow each other off the pews...(doing the hauling in of nets actions)...

Or if you like a nice pipe organ...

Just for you Chris, enjoy: Creepy, eh?

http://www.remembercfs.org.uk/about-mecfs/ ". . . Informed medical opinion is that the infection causes “ripples” in the immune system which make it malfunction. Normally the immune system switches off after an infection has gone but in CFS/ME sufferers it seems to continue producing chemicals...

On the Charity Commission Register, they list their Interests: GIVING HELP AND ADVICE TO PEOPLE WHO SUFFER FROM M.E. (OTHERWISE KNOWN AS CHRONIC FATIGUE SYNDROME) AND THEIR CARERS. THIS INCLUDES CAMPAIGNING FOR BETTER SERVICES, WORKING WITH THE STATUTORY SERVICES TO IMPROVE SEREVICES [sic]...

And what does "ME/SEID" mean? I'm jiggered if I know.

And exactly what is your "SEID", Dolphin? Is it defined by the suggested criteria in the IOM Report (which Jason et al have published considerable concerns about) or are you setting aside the panel's suggested criteria and focusing only on the term, per se?

If you live in the U.S., ICD-10-CM codes are essential for billing, reimbursement, medical insurers etc. NCHS-CDC aren't going to change their ICD-10-CM codes just because patients have started using a preferred term. I have to say, Dolphin, that I am surprised you would promote the use of a...

Well said.

To clarify: I oppose the use of "fatigue", "chronic fatigue", "fatigue syndrome", "fatiguing syndrome", or "chronically fatigued" whether these terms are used by patients, by the media or by professionals, and in any context. I avoid using the term "chronic fatigue syndrome" unless I am...

For sure - but it's not something I'd choose to spend time on.

I also think the IOM Panel was remiss in not including a very big caveat that the term "SEID" was just one of a number of Recommendations. And that until those Recommendations had been a) reviewed by U.S. federal health agencies; b) responded to; c) put out for testing and consultation...

And leaving aside whether the term "SEID" has merits or not, I don't understand why folk would want to start using a term that no health agency in any country has adopted.

Referring to ones disease as "ME/SEID" amongst yourselves isn't going to stop patients from being identified in their primary care practice patient records as being potential candidate for referral for IAPT or for referral to a "MUS one-stop-shop" service - you'll still be identified in your...

But "what we use in everyday language" doesn't amount to anything when patients are being coded and referred for services according to the terminology and codes in the mandatory systems in use for any particular country.

The WHO publishes what is known as the "international edition" of ICD-10. Since its release in 1990, ICD-10 has been updated on an annual and three yearly update schedule. The responsibility for its maintenance and update lies with the WHO-FIC Update and Revision Committee (now replaced by the...

The term "SEID" was a Recommendation only by the IOM Panel, 5 years ago, in January 2015. Since then, the term has not been adopted by any U.S. federal agency and has not been added to the U.S.'s ICD-10-CM nor to the U.S Edition of SNOMED CT terminology system. And since it doesn't have an...

Anyway, I'll bow out of this thread, now, as some days I even bore myself rigid.