Request for information regarding comparisons with ME/CFS and Long Covid

[Jonathan Edwards]

I wouldn't go for the Komaroff/Lipkin piece that has a lot of very dubious stuff in it.

I agree with CRG that in a ay this is a fool's errand. 'LongCovid' includes cases just like ME and also completely different problems due to lung damage or olfactory nerve damage or whatever. Counting and ticking off symptoms is entirely the wrong way to compare illnesses. The question is whether the concept the name intends to describe is the same - and it isn't. LongCovid is defined in terms of any problem persisting after Covid and ME/CFS is a specific syndrome with cause unspecified.

If the ill person has an ME/CFS type illness they will probably eventually come to realise it. If they have some other sort of problem the comparison with ME/CFS is an irrelevance.

 

[Snowdrop]

Interesting thoughts.

If it was me sending info I would have not sent anything official but simply let her see ME from the perspective of someone with ME. That could be through any one of a number of excellent videos that talk about symptoms to suggesting she just noodle around here in the 'symptoms' section of S4ME. After all our discussion of symptoms predates the epidemic of LC.

People are often more engaged by their emotions than factual info. I know that facts matter here but that's just how I'd go with it. Facts can be provided later when she might be more receptive after realising people have been suffering very much like her long before she became ill.

 

[duncan]

LongCovid is defined in terms of any problem persisting after Covid and ME/CFS is a specific syndrome with cause unspecified.

Semantical. A rose by any other name.

ME/CFS a specific syndrome? Sure, but one whose potential roots are too many to list, so much so that "specific syndrome" applied to ME/CFS is almost oximoronic. I can name at least five infections or conditions that simply aren't recognized as such after a time and inherit the name of ME/CFS. Given time, I suspect that label will be foisted upon LC patients as well. After the dust has time to settle, and etch-a-sketch medicine reasserts itself for the umpteenth time.

This LC line in the sand isn't about LC only. There are ramifications to other prominent contested diseases, and to those who define their parameters, and callibrate and manufacture and market their diagnostics, and pay out health insurance and disability claims...

 

[Hutan]

Sorry I missed this thread earlier. We are tagging threads that address the question (because it is a common one in advocacy), including by giving rates of ME/CFS criteria compliance/diagnosis in Long Covid cases, with the "LC=ME/CFS' tag. If you click on that tag on the top left of this thread, you will find papers and discussions related to the question.

This is our main discussion thread on the topic:
Is Long Covid a type of ME/CFS? Discussion thread