Excellent essay by Covid long-hauler re need for alliance with ME/CFS community

[Mary]

Long Covid, ME/CFS, and the Need for Allyship

This is very well-written. There's really no new information for most of you here, but I think it's a worth a read anyways. Like so many of us with ME/CFS and Covid long-haulers, she was very active, etc. and then basically cut down overnight.

I discovered it in a tweet by @Janet Dafoe -

https://twitter.com/i/web/status/1426087369992671235

 

[TiredBill]

The more I hear about Long Covid--especially from those affected with it--the more the similarities with ME/CFS leap out at me. Especially the experience of PEM.

I ended up having a very long talk with one of my son's teachers who has Long Covid. I initially felt a little reticent about getting "personal" and crossing lines, but I overheard what he was describing (not in detail) to his students about how LC was affecting him--and how he was trying to "push through" (being a hard-charging young man in his 30s) and how he was crashing as a result, which made him want to push harder.

So I shared my story. Explained PEM and suggested he might explore things like pacing and staying within an energy envelope, rather than potentially making himself worse. And he opened up about what he was going through. Sounded like classic symptoms ME/CFS to me.

We'd had a good relationship already, but we really bonded. In the next weeks I hope to have an update on how he is doing.

Bill

 

[sometexan84]

There's really no new information for most of you here, but I think it's a worth a read anyways.

Actually, I learned at least 4 or 5 things I didn't know before. So thx!

- 18% of long haulers in one poll reported contemplating suicide
- a third of medical schools include ME/CFS as part of their curricula
- (I guess I knew this, but I liked hearing this connection) “New theories” such as viral reactivations that suggest that answers for Long Covid are being found are not new theories at all, but have already been described in detail as part of the 9,000 peer-reviewed journal articles in the ME/CFS literature that are being seemingly ignored by the greater medical community
- There is also frequent mention in the news about the $1.15 billion in funding for Long Covid from the NIH, but almost eight months after it was made official just two infrastructure awards have been publically announced and research has hardly begun

 

[Rufous McKinney]

- There is also frequent mention in the news about the $1.15 billion in funding for Long Covid from the NIH, but almost eight months after it was made official just two infrastructure awards have been publically announced and research has hardly begun

this part frustrates me, as I try periodically to figure out whats up with all that and it seems the system is designed to ensure an ill citizen can't possibly find that out......