Thread by @exceedhergrasp1

✨ADVOCACY ACTION AHOY!✨

To all those remaining on Twitter in #NEISvoid, #MECFS and #LongCOVID circles... this is a big deal.

Looks like RECOVER is trialing exercise and CBT for #LongCOVID. Guess we have our reason why they were so keen to exclude #MECFS advocates! A 🧵

https://twitter.com/loscharlos/status/1606035471426932736

All along, #LongCOVID and #MECFS researchers, clinicians & advocates warned that RECOVER was going to be a colossal waste of time & money if they tested for values we already know are normal in infection-associated chronic illness, & therapies we already know do not work. (2)

Researchers, clinicians, and advocates begged-- in some cases, literally-- RECOVER researchers to connect more genuinely with the community rather than as a hoop to jump through so they could claim to have done so. (3)

Instead, RECOVER insists on running down the same dead ends as always, looking through the same infuriatingly uninformed and incurious lens.

This is something I have continually worried about-- probably to the bafflement of new #LongCOVID researchers with good praxis. (4)

#LongCOVID folks, understand: the bias runs deep, and we will hang together or we will surely hang separately.

The main ask: retract exercise as a therapy. Retract CBT as a therapy. (5)

Once again, the link: docs.google.com/document/d/1OV…

Just in case there is anybody on my feed who doesn't know, yet.

1) Patients who recover are more likely to recover early. By gathering patients early in disease, any intervention without a well-matched(!) control group will look like a miracle cure. (6)

2) Post-exertional malaise is the cardinal symptom of #MECFS and is experienced by the majority of folks with #LongCOVID. That is a flare of symptoms after overexertion, often disabling for days or weeks. If PEM overlaps it may lower the individual's capacity over time. (7)

3) Individual studies of exercise for #MECFS can be made to look good; but meta-analyses find that patients are MORE likely to be out of work or school and MORE likely to be on benefits after taking on structured exercise regimens in ME, where PEM is a central feature. (8)

4) This is also a powerful example of epistemic injustice. Do researchers believe the average sick & disabled person wouldn't have thought of engaging in activity without their wisdom? When we know it's so often the other way around: (9)

... that patients push themselves in pursuit of normal until they're sicker than ever?

And why is this worth $750M of public money in place of interventions with a higher probability of success? (10)

This was predictable & preventable, every step of the way.

1) Few researchers with infection-associated chronic illness experience were involved. Newbies adopted a "just asking questions" stance to harmful, debunked research. (11)

2) Patient partners have had a disturbing experience with RECOVER researchers by the glow of the gaslight. Even folks with research and clinical backgrounds were talked over if they also had lived experience. Attitude re: patient involvement best described as 'resentful'. (12)

3) Attempts to engage with the broader community were met with hostility. Claims of inclusiveness and lists of involved researchers were padded with folks who came to chat with RECOVER once or had no post-viral experience at all.

(13)

Therefore, we've ended up with an observational project and ONE trial that looks like it's about talk therapy and meditation(?) and exercise. After that, the money is gone.

So, did we get what we citizens paid for?

(14)

You could not have designed a study to discredit #LongCOVID more neatly if you set out to do so.

And it 'only' cost $1B: 0.4-0.5% of what Brookings says is the annual lost wages due to #LongCOVID this year alone.

It's a good deal for minimizers, who already cite RECOVER.

(15)

Once again, the link: docs.google.com/document/d/1OV…

After I've sat with this for a few minutes, let me add: I know we're tired. We have to combat this unscientific, ahistorical nonsense again & again.

And we keep going because if we don't, people get hurt.

Once more unto the breach, dear friends.

Ah it does say they will be trialing “drugs” too— I don’t mean to mis-state or mislead!

We do NOT want exercise and CBT to be part of what they trial.

I have to rest, now! Twitter break