Discussion in 'General ME/CFS News' started by mango, Mar 1, 2016.
via prof Leonard Jason on Facebook:
I suggest WGAF Syndrome, a name the doctors and health care services can get behind.
I thought Jason had already carried our a survey and published the results, here:
Does anyone know how this survey differs?
this new one has a slightly different focus. name preferences are there, again. there are questions about different sets of clinical and research criteria (Fukuda, CCC, ME-ICC, SEID, London criteria etc). no questions about educational concerns.
I've completed it. It's a very short survey. Only takes a couple of minutes.
Make sure you click through to what they call the "Ramsay criteria" if you need to refresh your memory about them: They're very short and only take a minute to read.
Ramsay is not listed as an author on the "Ramsay criteria", and they're officially called the "London criteria". Does anyone have any insight into why they're referred to as the Ramsay criteria? Is it a spurious weblink?
This answers my question...
If I am recalling the right document, the earlier document was a re-analysis of data generated prior to the IOM report by a different body. Here they are generating their own data with their own choice of questions. It doesn't take long to complete this survey unless like me you get distracted and start reading other links you find when referencing the different ME/CFS criteria documents, or if like me again, you write a long diatribe about the word fatigue in the comment section.
Is that similar to CGAF and DGAF syndromes or am I on the wrong track?
The survey referred to the 'Ramsay based London criteria'.
they have updated the reference/link to the London Criteria in the survey.
the previous one was an old version, this new link goes to the most recent version:
The survey took me about 30 minutes, because I was clicking on the links, and then wrote a comment.
If you havent filled this out, please do.
In case its useful to look at the links before you do the survey, here they are:
1994 criteria - http://www.cfids-me.org/cdcdefine.html
IOM 2015 criteria - http://iom.nationalacademies.org/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf
Ramsey based London ME criteria - http://www.axfordsabode.org.uk/me/mecrit2014.htm
Canadian Criteria - http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf
ME-ICC criteria - http://www.investinme.org/Documents...nternational Consensus Primer -2012-11-26.pdf
Name change initiative - http://iacfsme.org/ME-CFS-Primer-Education/Pages/ME-CFS-Name-Change.aspx
5 minutes, tops.
I have just done it, but it was hard to answer the questions
Didn't know where to post this so picked this thread....
I was trying to find out where exactly CFS and ME were on the WHO ICD. So I looked at this:
and ME is classified under PVF and if you search on CFS the name doesn't come up in the lists but puts you back on ME?
Sorry, am I missing something?
Survey no longer active.
In the WHO ICD, CFS is not in the tabular list of diseases. The main entry is for postviral fatigue syndrome and ME is classified underneath this. CFS is only in the index and points to G93.3, PVFS/ME. This isn't obvious from the online interface, I know.
You can also try a Google Site Search
Separate names with a comma.