Rain
Senior Member (Voting Rights)
I do of course see the hope and positive possibilities in this. But I’m starting a thread for discussing concern around it as well.
Please have in mind that we know nothing about long time effect from Covid, nothing about how long it will last. It might become like Mono or lung infections where some patients are set back for up to two years before functioning normal/being able to exercise again.
Being set back for a while after a virus is not that unusual. What happens if most of the cases snap back to where they were before after a while? This is the kind of patients Wyller and others have built their entire career around. It has hurt our case already.
From my personal experience: I have been in this game for quite some time. I have had friends-of-friends getting in touch over long time post-viral ME-like symptoms several times. Some got ME-diagnosis, others not. All of them have become spontaneously better after 1-3 years. Almost none of them/their environment realize their pure luck, often they are seen as clever/an inspiration/doing it right, and the rest of us who is still ill end up in some form of victim blaming.
Edit:
I also think there could be possible benefits from having Long-Covid being researched from scratch without the connection. If they discover something that ME-researchers has not already thought of, it would be easy to test if ME-patients have the same
Please have in mind that we know nothing about long time effect from Covid, nothing about how long it will last. It might become like Mono or lung infections where some patients are set back for up to two years before functioning normal/being able to exercise again.
Being set back for a while after a virus is not that unusual. What happens if most of the cases snap back to where they were before after a while? This is the kind of patients Wyller and others have built their entire career around. It has hurt our case already.
From my personal experience: I have been in this game for quite some time. I have had friends-of-friends getting in touch over long time post-viral ME-like symptoms several times. Some got ME-diagnosis, others not. All of them have become spontaneously better after 1-3 years. Almost none of them/their environment realize their pure luck, often they are seen as clever/an inspiration/doing it right, and the rest of us who is still ill end up in some form of victim blaming.
Edit:
I also think there could be possible benefits from having Long-Covid being researched from scratch without the connection. If they discover something that ME-researchers has not already thought of, it would be easy to test if ME-patients have the same
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