I saw in the Twitter replies that someone mentioned the same thing I just said, and I agree that not everyone with long COVID will get re-diagnosed as ME/CFS, but yes like others here I’m tired of the dance around the subject.
Can someone of prominence please have the courage to discuss long COVID and ME/CFS together, how most of the symptoms overlap, and how,
given the evidence and history with other viruses (like SARS), there is significant likelihood that many with long COVID who never recover will actually turn out to have ME/CFS?
And honestly I don’t care if members of long COVID community get angry about the striking resemblance and association with ME/CFS, too bad you can’t wish away reality no matter how hard you want to. It’s the same with the morons in the US who think the virus is just not serious and will go away, no amount of dumbthink will make it just disappear.
The realization is slowly settling in for long haulers. It mostly depends on individual symptoms, especially those who do not have significant fatigue (but many do have PEM....
sigh) may still reject it, but it's being discussed more openly with time. There's a steady stream of threads on Reddit asking "So is this ME/CFS after all or what?". Discussion is still low because of the... implications... but the advice is very much welcome, especially as it aligns with their experience, unlike medical gaslighting advising to exercise. The understanding of "do not exercise" is viscerally baked in from personal experience.
I think that as long as it's frame accurately, that a subset of Long Covid is ME, it will be received mostly fine. The only question is what % does that represent, but I would be surprised if it's less than half. But by now the average long hauler probably understands PEM far more than the average physician.
But for medical professionals, the main issue remains that most have no idea what ME is and so they can't possibly compare to it. On that we can't do much more than continuing the thankless task of helping accurate medical education being available and spreading the word. This is an issue medicine has to work out by themselves.
A lot will depend on the Long Covid guidelines, whether they include PEM and ME symptoms or leave it all entirely to the ME guidelines. Events so far suggest the latter. I was expecting a bit more curiosity over this draft from long haulers but I think on this front it's them who may feel uncomfortable going onto our domain. Not sure how we can get them involved here but it would be useful, especially with the need to counter the inevitable BPS counter-attacks framing us as deranged lunatics. Long Covid provides the most painfully vivid example of what happens when BPS ideology dominates.
Meanwhile the critics are all jerking each other around over split duality of mind-matter crap. These people are completely lost in philosophical weeds, entirely impertinent. It's so damning that the exact same controversy has existed in full for over a century, unchanged, always saying the same damn things over and over again.
