Understanding long covid: a shortcut to solving ME/CFS? Simon McGrath

Sure we are, as defined by whichever definition is selected to be used, which is, obviously, the only way we can currently define it - we are all well aware here that we don't currently have a biomarker for ME/CFS.

 

Which is exactly my point.

On the subject of potential terminology, post COVID-19 symptoms and their relationship to ME, CFS, you might want to read this Letter (if you haven't already seen it):


https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/#post-290226

Wellcome Open Reasearch

OPEN LETTER
Why the Patient-Made Term 'Long Covid' is needed
[version 1; peer review: awaiting peer review]

Elisa Perego1, Felicity Callard
https://orcid.org/0000-0002-5350-1963
2, Laurie Stras
https://orcid.org/0000-0002-0129-2047
3, Barbara Melville-Jóhannesson4, Rachel Pope5, Nisreen A. Alwan
https://orcid.org/0000-0002-4134-8463
6-8

 

I suspect we are in a better position than in most ME/CFS studies

Yes, it's important to go into this with an open mind. that doesn't exclude ME/CFS as one possibility for some patients (as stressed in my blog - we don't know anything for sure).

All researchers I saw expressing an opinion think it is possible that long covid has multiple causes, especially those linked to covid-19 eg organ damage, and that it could also include an entirely new illness. Could also include ME/CFS.

Given the depth of the research planned, esp the NIH intramural study, I expect progress. ME/CFS diagnosis relies heavily on the exclusion of alternative explanations. The body of research underway is well placed to find those exclusions.

 

Surely it should be called COVID-19.
Recognition of the long term effects in some patients should not depend on giving it another name.
If you have stroke, you don't give it a different name according to whether you died instantly, recovered slowly, or never recovered. I may be wrong but I've never heard of post-stroke syndrome.
Once it has a different name e.g. post-COVID, it will be treated like a non-disease state.

 

Reading the experiences of such patients, it seems it already is being treated that way by some medical practitioners (and the general public), regardless of it's name.

 

There is a thread here, monitoring the progress and outcome of three requests submitted via the NHS Digital Submission Portal for creation of a new Concept term for SNOMED CT UK Edition, in order that a code is available for data collection:

Three potential Concept terms have now been requested by three submitters:

1 'Post COVID-19 syndrome (please double check with clinical bodies)'
2 'Post-COVID syndrome'
3 'Long Covid' and 'Suspected long Covid'

https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/