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Survey on the Name and Criteria for ME or CFS

mango

Senior Member
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via prof Leonard Jason on Facebook:
Survey on the Name and Criteria for ME or CFS

There is considerable debate regarding terminology and case definitions of ME and CFS. This issue directly affects us, so we feel that it is important to obtain information from patients, family members, clinicians, and researchers. We hope that this brief survey will shed some light on how people feel about these critical issues that face our community. We plan to make our results known to the larger community as soon as possible. Leonard Jason's team at DePaul University will help analyze the survey and make the results available to the larger community.

The survey will take approximately 15 to 20 minutes to complete. You will have the opportunity at the end of the survey to provide any additional comments about your opinions that were not captured in the structured questions. In order to take the survey, please click on the link below.

Sincerely,
Jill Mclaughlin, Pat Fero, Mary Dimmock & Leonard Jason

https://redcap.is.depaul.edu/surveys/?s=AA33WKLPJH
 

mango

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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.
 

Bob

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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?

Edit.
This answers my question...
The survey referred to the 'Ramsay based London criteria'.
 
Last edited:

JohnCB

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Does anyone know how this survey differs?
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.
 

Scarecrow

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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?
The survey referred to the 'Ramsay based London criteria'.
 

medfeb

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halcyon

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Sorry, am I missing something?
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.