Dolphin
Senior Member (Voting Rights)
http://meadvocatesireland.blogspot.com/2023/05/myalgic-encephalomyelitis-me-diagnosis.html
Also available as a pdf (64 pages):
Also available as a pdf (64 pages):
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Myalgic Encephalomyelitis (ME) Diagnosis & Management Information for Doctors & Healthcare Providers (from ME Advocates Ireland), May 2023
- Thread starter Dolphin
- Start date
Oh dear. I think this is going to be counter-productive. I can't recommend this.
My eyes were glazing over, and I care deeply about this topic. Doctors and other health care providers need brief, tightly edited content that is well-formatted.
There also needs to be fewer claims about the problems underlying ME/CFS. It's too early to be telling doctors that ion transport is a problem in ME/CFS, for example.
My eyes were glazing over, and I care deeply about this topic. Doctors and other health care providers need brief, tightly edited content that is well-formatted.
There also needs to be fewer claims about the problems underlying ME/CFS. It's too early to be telling doctors that ion transport is a problem in ME/CFS, for example.
alktipping
Senior Member (Voting Rights)
how many doctors who are always short on time will take one look at this document and file it in the bin .
Sly Saint
Senior Member (Voting Rights)
I think they may only get through the first couple of paragraphs of 'what pwME want from doctors' before getting their backs up.
(although there is possibly a lot of good info there is way too much; although having said that , 64 pages...same length as the AfME 'leaflet' on just 'pacing'. Just saying..)
I can see a lot of work has gone into this, but I agree with the above comments. It's far too long, repetetive and disorganised, with long lists of resources muddled in with various bits of advice and unreplicated claims about science. Even the sample care plan is 14 pages of closely typed information.
I have no idea who is expected to read it all. There is also too much use of emotive words like 'horrendous'.
Also the authors have decided to focus diagnosis on the ICC, which is, I think, not used much for diagnosis in real life. A shorter set of core symptoms like the IOM or NICE criteria is much more usable clinically, I think.
If the authors are reading these comments, I hope they will rethink the document. Information for clinicians, most of whom will not be solely specialists in ME/CFS, needs to be succinct, easy to use, accurate and in non emotive language. And lists of references and resources should be collected at the end, I think, to make the main document more readable.
I can't see who this is targeted for.
I have no idea who is expected to read it all. There is also too much use of emotive words like 'horrendous'.
Also the authors have decided to focus diagnosis on the ICC, which is, I think, not used much for diagnosis in real life. A shorter set of core symptoms like the IOM or NICE criteria is much more usable clinically, I think.
If the authors are reading these comments, I hope they will rethink the document. Information for clinicians, most of whom will not be solely specialists in ME/CFS, needs to be succinct, easy to use, accurate and in non emotive language. And lists of references and resources should be collected at the end, I think, to make the main document more readable.
I can't see who this is targeted for.
I’ve only skimmed. Im assuming it is intended as a reference document along the lines of the ME Association purple book.
I read the first few sentences.
IMO this would get some backs up right away.
The Canadian Consensus Criteria which is 115 pages long:
https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf
has an overview, which is 20 pages long:
https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf
Even 20 pages is too long for many health care providers.
As @Sid says, a one page pamphlet isn't read.
I don't know what the fix is for this problem, unless training about ME is made mandatory.
That would go over well, I'm sure.
The only other suggestions I can think of are using various modes of communication - some of them more engaging.
Yes, ME is horrendous, and a great many pwME have been treated exceedingly poorly, but sometimes use of different media can get a message across more readily than a lengthy "tome".
And, I still like the method @NelliePledge talked about using - the "drip feed" method.
IMO this would get some backs up right away.
The Canadian Consensus Criteria which is 115 pages long:
https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf
has an overview, which is 20 pages long:
https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf
Even 20 pages is too long for many health care providers.
As @Sid says, a one page pamphlet isn't read.
I don't know what the fix is for this problem, unless training about ME is made mandatory.
That would go over well, I'm sure.
The only other suggestions I can think of are using various modes of communication - some of them more engaging.
Yes, ME is horrendous, and a great many pwME have been treated exceedingly poorly, but sometimes use of different media can get a message across more readily than a lengthy "tome".
And, I still like the method @NelliePledge talked about using - the "drip feed" method.