News about Long Covid including its relationship to ME/CFS 2020 to 2021

https://twitter.com/user/status/1267370491532238848


https://twitter.com/user/status/1267371055204753409


https://twitter.com/user/status/1267371390761648129


https://twitter.com/user/status/1267371519581327360

 

Here's a link to the study that NIH is funding. It's an immunology study of COVID patients. Joseph Breen at NIAID did not give us a dollar figure on this study. https://www.niaid.nih.gov/news-events/niaid-study-examines-immune-responses-people-covid-19

 

So this came up on my twitter feed.

https://twitter.com/user/status/1267565393440395265

 

I like the article, but just sent them the following short note:

The usual claim is that 25% have severe ME. However, that doesn't just include the bedbound, but also the housebound and maybe also the virtually housebound.

 

@PhysiosforME

see also this thread:
https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/

 

Thanks for this Tom - we know we still have lots to learn so always welcome feedback.

Thanks for sharing this - we're really chuffed as it goes out to 59,000 of our physiotherapy colleagues and is the first time we have seen anything about avoiding GET in Frontline!

 

Not sure if this story has been posted yet:

https://apple.news/ApnhrWMlcRC2f0ylfgjtPsg

What struck me is when she attended a&e, she was told her symptoms were just a panic attack, and to get back to work as soon as possible, even tho she can’t sustain anything near normal.

 

I can't see any reference to testing for Covid. Did I miss it?

 

I'm guessing Sophie Wilson may have no awareness of ME/CFS, and the implications of such symptoms.

 

Nor did the doctor who told her just to get back to work!

 

https://www.theatlantic.com/health/...-coronavirus-longterm-symptoms-months/612679/

 

Thanks for posting, @Andy

Here's the twitter thread from the author of the article in The Atlantic:

Code:

https://twitter.com/edyong209/status/1268570212191928320

https://twitter.com/user/status/1268570212191928320

 

The Atlantic article was truly fantastic, the reporter really nailed the basic facts and how they tie together. Best coverage of the issue so far.

Another article, seems like there is some growing momentum, it's written by the founder of Body Politic, which published a patient-lead report a few weeks ago: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-15#post-260891.


No one knows why these Covid-19 patients’ symptoms keep relapsing

https://www.vox.com/2020/6/4/21274727/covid-19-symptoms-timeline-nausea-relapse-long-term-effects

 

https://twitter.com/user/status/1268725503789318145


ETA: He shares links to other articles too

 

It would be interesting to see some stats (might be a bit early) on how many post-covid patients are being directed to IAPT for CBT, no doubt citing 'anxiety' as cause of persisting symptoms (as part of the bPS 'prediction' of 'mental health epidemic').
@Joan Crawford maybe Mike Scott might have an idea if these stats are available anywhere?

 

Don’t know if this should be in a separate thread but.. I recently tested negative for covid antibodies. Im pretty sure I’ve had had the long tail version of it so am pretty annoyed to go through all that and not even got any antibodies out of it!

I’ve seen on Body Politic that a significant number are also testing negative for antibodies.

Leaving aside discussion of the accuracy of tests and whether or not I’ve actually had covid- My question is:-

Is there a scientific reason that the immune system of someone with ME/CFS wouldn’t generate antibodies to the illness that triggered the ME? Whether that be in any post viral illness or any other?

I don’t know if I’m making sense here- feeling like this is an important question to ask I’m even if I can’t quite work out how to ask it!

 

https://twitter.com/user/status/1268954088638574597


https://twitter.com/user/status/1268955234237206529

 

That’s interesting, what antibody test did you get? Abbott or Roche, maybe? Venous blood sample, or finger prick? Did you order online and mail in your blood sample? Long postage delays could affect viability of sample, perhaps.

From the validation studies it appears these tests are >99% accurate, so it’s curious that patients with clinical diagnosis are coming up negative. The antibody test needs to be >3 weeks after developing symptoms.

I think no antibodies is unexpected, but there is so much we don’t know yet about Covid. Perhaps in true immunodeficiency state there would be a paucity of antibodies, but this isn’t the case in ME/CFS.

Thanks for posting this, I’ve been wondering about getting tested myself but would be hopping mad if spent the cash and test was negative lol.