Were you diagnosed with ME/CFS before or after covid infection?

[chillier]

Just for curiosity and in light of the fact DecodeME is not picking up so many long covid derived ME/CFS patients to our current knowledge. In the last update I remember I think DecodeME had far fewer than 1000 ME from long covid patients signed up so I'm wondering whether maybe there isn't anybody who fits these criteria on this forum.

 

[Trish]

To be a bit pedantic, I haven’t had a Covid-19 infection, so although diagnosed over 30 years ago, none of the first 4 options is accurate for me.

 

[chillier]

Good point! I suppose I'm hoping the word 'presumed' would do a lot of the heavy lifting and no one would notice.

 

[alktipping]

Good point! I suppose I'm hoping the word 'presumed' would do a lot of the heavy lifting and no one would notice.

this is not the kind of site that ignores small flaws or any flaws lol also many people here were diagnosed long before covid.

 

[Wyva]

Also, I'm not officially diagnosed since such a diagnosis is quite difficult to get here in general, it is just not really a thing here. Thus if they ever diagnose me, it will be after my covid infection that I had last year. However, my post-viral symptoms started years before that. But if the poll would you like to find out the number of covid long haulers, then I would be in the wrong group of voters.

Anyway, I think the reason for the low number of pwLC in DecodeME may be that probably not many covid long haulers get that diagnosis even in the UK.

 

[chillier]

this is not the kind of site that ignores small flaws or any flaws lol also many people here were diagnosed long before covid.

Myself included I've had ME for something like 13 years and it took me a long time before I found a community (i.e this one) which is actually speaking soberly about ME - it's extremely refreshing.

Anyway, I think the reason for the low number of pwLC in DecodeME may be that probably not many covid long haulers get that diagnosis even in the UK.

Exactly, what I'm really asking is whether there's a single person who actually fits the required criteria for UK ME after covid who also frequents this forum. In my mind if you already have a long covid diagnosis I don't really see why you as a patient would seek out an ME/CFS diagnosis or why a clinician would be inclined to add that diagnosis on top.