Concerns about premature linking of Long Covid and ME

[Forbin]

I realize that everyone's experience with ME is not the same. My onset was post-infectious, but it was not simply a "long tail" failure to recover. I had a really bad upper respiratory infection which had all but resolved. When I returned to normal activities, I felt "recovered" for about a week. Then I got odd initial symptoms of "unsteadiness." For a couple of days, it seemed like that would go away, but it didn't. There was then a cascade of other symptoms that got worse over the next six months or so. Other severe gastrointestinal manifestations appeared in the next couple of years.

All this did not seem like a "long tail." It seemed more like a progressive accumulation of dysfunction. In my experience, ME/CFS has general flu-like symptoms, but with everything else it entails, it does not seem like a prolonged recovery period of the initial infection. It seems like something quite separate and unique that is "triggered" by the initial infection.

 

[alex3619]

Hopefully the right questions will be asked

This is the most crucial thing of all in my opinion. Good answers to a bad question are misleading. Even OK answers to a good question can tell us a lot.

Nothing is yet certain about post-CV19 patients. We have lots of questions. We can put up possibilities, but that is all they are until we have a lot of hard data.

For example, I really hope someone who has recovered from the actual infection does a repeat CPET test. What will that show? What will it show after hundreds have been tested?

 

[Kitty]

All this did not seem like a "long tail." It seemed more like a progressive accumulation of dysfunction.

Same here; I'm not even sure what triggered my ME, but 'progressive accumulation of dysfunction' sums it up perfectly. Mine took many months too.

 

[Snow Leopard]

Most ME or CFS patients weren't ready to accept such a diagnosis after experiencing similar patterns of illness for 3-4 months and the CFS diagnosis is toxic. So I can certainly understand the strong reluctance.

 

[Forbin]

For example, I really hope someone who has recovered from the actual infection does a repeat CPET test. What will that show? What will it show after hundreds have been tested?

As I mentioned before, it would also be interesting to see how post-Ciovid fatigue cases do on Dr. Davis' nanonneedle test. You'd think with the publication in PNAS, and under the current circumstances, the NIH would be able to find some money to help him scale up the test.

 

[NelliePledge]

It must be a bit difficult for anyone with long Covid on social media - not groups open posts - when people with ME engage with them then a bunch of people with ME all want to have their Twopennorth and 57 different angles.

On the other hand people need to realise they are pronouncing to the world at large so they shouldn’t then be surprised that they get back a kaleidoscope of pronouncements from others.

 

[Saz94]

It's essential that they know that it *could* be ME or that it could end up as ME, and that they mustn't overexert themselves, because if it is ME then overexertion will destroy them.