NIH Recover Initiative—petition against bogus treatments

There is a petition—looks like all nationalities can sign. Treatments include CBT, exercise.


https://twitter.com/user/status/1606360331974021120

 

GET and CBT seem very seductive for researchers and practitioners. Part of their appeal is they're cheap. And, negate any further cost or effort from governments, health care workers and the insurance industry.

 

"Please sign our petition to demand that the US National Institutes of Health block plans for Long COVID research studies on debunked, harmful methods and step in to ensure a strategic, well-funded effort to find real answers.

Here's what's going on:

The RECOVER Initiative was funded by the US Congress to find answers on how to treat Long COVID. But we've learned that RECOVER's plans for their first wave of clinical trials includes studies of exercise therapy and cognitive behavioral therapy."

To sign, and read further, https://actionnetwork.org/petitions/tell-nih

 

It seems happy to accept signatures from the UK so presumably people can sign from across the world.

 

Signed. (From Canada)

 

Signed from the US.

 

There has been some discussion on twitter on whether there is an actual planned effort for BPS trials, as if the overbearing presence of BPS framing everywhere is not a giant tell of what's to come. And little solid can be pointed at showing any such plan. But we have zero visibility into what goes on, and BPS stuff always has a lot of cheerleaders and pushers.

I think it's safe to assume it will happen unless challenged, based on precedent and everything happening in secret behind closed doors, which is always how it happens. There is the added pressure to escalate commitment to having decided that the pandemic is over, even though such a thing is actually largely dependent on what we choose to do, or not, and that the choice was essentially made to perpetuate it indefinitely, which is massively embarrassing, but lacking consequences as long as everyone keeps gushing about the emperor's missing clothes.

The fact that BPS stuff continues to be the standard says a lot about this. It's not big bad politicians forcing anyone to do this, or making most of the research so far bad. This is 100% out of choices made by medical doctors, boards and committees, without any input or involvement by anyone who doesn't have a MD. In fact politicians have the option to choose physicians who push the hopium simply because there are so many of them it's the default thinking mode everywhere.

It should be presented as pushing the problem as the solution to the problem, since BPS stuff is the problem, it's what broke everything and is the justification behind every decision. The problem is never the solution to the problem, this is plain silly and it has to be said explicitly: you failed, you are failing, and you choose to continue failing.

 

I worry that there is political pressure in many countries to present the pandemic as being over, so agree this is not promising for funding for Long Covid research or resources, and the BPS approach fits into this narrative presenting a (albeit illusory) perspective of cost effective treatment.

 

There is a disconnect here. Many with LC probably have ME or something related, but probably not all of them. The science debunking the CBT/GET claims, including their own papers, is largely ignored. Some officials, doctors and researchers will claim, I am sure, that while CBT/GET is bad for ME, nobody has proven its bad for LC. They will point to some individuals who did GET or whatever and then improved, as evidence it works. The likelihood that this is probably within the bounds of natural recovery is ignored. I suspect this is going to be a difficult fight.

What absolutely should happen is those being enrolled in studies who fulfil criteria for ME or SEID or strictly defined CFS should be advised of the risks. They should also be identified so we can see the dropout rate, and how this group responded compared to LC patients who do not fulfil criteria similar to ME. I predict they will fail if they use objective outcome measures, and might succeed if they use badly designed studies with subjective outcome measures, and these studies will again provide evidence that CBT/GET and the psychogenic model are bad for anyone with ME.