Version 1.0 of ME/CFS Common Data Elements now available

"Version 1.0 of the NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements is now available: https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards




Regards,

The Trans-NIH ME/CFS Working Group
"

did not read

 

I think this may be old news, unless there has been an update. The update tab shows nothing however.

 

nih emailed it today. if it is a duplicate, then we should delete the thread.

eta: have we been keeping versions of all major websites? so it can be compared using diff or whatever windows has to offer? it would be good to regularly download all major web pages and keep them under version control.

 

The webpage itself is claiming to have been updated today but there doesn't seem to be anyway to tell with what.

 

The page has definitely been updated since January.

 

A previous version from December 16th is at https://web.archive.org/web/2017121...s.ninds.nih.gov/MECFS.aspx#tab=Data_Standards

 

https://www.commondataelements.ninds.nih.gov/Doc/MECFS/Fatigue_Subgroup_Summary.pdf is interesting ...

They are acknowledging that fatigue measurements are lacking, though I would argue that fatigue isn't going to be suitable for defining cases. They might be starting to understand that at least:

This probably refers to the Chalder Fatigue Questionnaire:

I think this approach will get them to the right answers eventually, and it's a pretty firm rejection of the symptom-lumping seen in psychosomatic approaches:

That document also lists the fatigue scales examined, and briefly describes what they measure and how useful they are.

 

PEM summary: https://www.commondataelements.ninds.nih.gov/Doc/MECFS/PEM_Subgroup_Summary.pdf

This is also looking pretty good, though I still strongly object to including immediate symptoms of exercise intolerance as part of PEM. I think they took the patient recommendations (the survey some patients here started) into account:
PEM is defined as an abnormal response to minimal amounts of physical or cognitive exertion that is
characterized by:

Though it does look like they want to pin it down better, including in objective terms:

This is where they're currently at. Unfortunately the DSQ PEM subscale seems to be the only thing available:

The PEM subgroup is also pushing hard for more research into various aspects of PEM, and Fukuda gets slammed a bit in the process :

Despite the current promotion of the DSQ PEM subscale, they seem to understand the limitations in the approach taken to develop it (choose the least-inappropriate option from a list);

And a way to assess subjective changes in PEM is needed, for study endpoints:

The DSQ isn't suitable for it:

 

https://twitter.com/user/status/969250100806606848

 

Anybody got any idea what the updates tab is meant to hold? https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Updates

 

Don' t know if this is the same ?
https://jaxmecfs.com/2018/03/08/release-of-the-ninds-common-data-elements-cdes-first-draft/

 

If anybody is interested, the NIH have produced a PDF file listing all of the comments they received from the public - https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/cde-comments-final.pdf

 

For what it is worth:
https://jaxmecfs.com/2018/03/27/release-of-common-data-elements-cdes-public-comments/