USA: Congress Approves Over a Billion Dollars to Study Covid-19

Moved from this thread: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19-long-covid.14074/

Based on this set of tweets and the doubt expressed by others, I have deleted my tweet, which contained the information I had got from the Solve ME/CFS Initiative. The NIH wording looks a bit ambiguous so I decided it would probably be best for me to wait until things are clearer.
https://twitter.com/user/status/1342184887575441409

https://twitter.com/user/status/1342184894449926145

 

Merged thread

Cort Johnson's piece

https://www.healthrising.org/blog/2020/12/24/congress-billion-covid-19-long-haulers/

 

Solve ME/CFS Intitiative are sticking by their guns that this really is slated for LongCovid

https://twitter.com/user/status/1342215701520478208

 

Now as we have vaccines, let's start to research the disease. Are they still using Internet Explorer?

 

I could be completely wrong about this but I believe this was part of the Consolidated Appropriations Act, which is now a law (Covid Relief Bill). There was talk about changing it, but I suspect the tiny $1B (the bill itself was $2.3T) remained secure as the bill was not changed last minute.

However, I can not find the text of Long-Term Covid Resarch and other related terms in the CAA's Wiki page. Maybe @Emily Taylor can clarify if it was part of the CAA or seperate.

Re. Vastag's tweet which is no longer available (possibly a deleted account), it looks like Francis Collins would have extreme discretion on how about $1.1B is spent over 3-4 years. If just a tiny fraction of that becomes me/cfs research, it could easily double or triple me/cfs funding per annum for the next 3-4 years.

But, there will also be a lot of fingers in the pie. I think it's reasonable to assume many researchers will be making careers off covid research for the next 10 years. They will always find funding, and social and media support.

 

The congressionally legislated money towards vaccine will go towards vaccines. It's not something the Director can redirect elsewhere. Also, we still have a lot of questions about how long immunity will last, how to lower costs, improve access, etc.. It certainly seems reasonable to keep researching vaccines. There will still be a lot of money available.

 

Sorry. I was just a bit cynical because we have like 50 different vaccines in pipelines when treatment options still aren't really debated with the same urgency when some countries have to triage patients again. Vaccines will not help the patients of this winter season. Just because there is no large randomized placebo-controlled trial yet. Small randomized placebo-controlled trials aren't sufficient evidence to approve drugs in times of urgency? But vaccines get a fast protocol for approval - having no long-term data at all. And why don't we have larger trials? Because there is no large funding. Drugs like Ivermectin and HCQ aren't new. They have been on the table since April as far as I remember. They are already certified and evaluated for their safety.

 

I understand your frustration.

 

From, https://www.ncsl.org/ncsl-in-dc/pub...s/covid-19-economic-relief-bill-stimulus.aspx

https://twitter.com/user/status/1344349353633337347


ETA: Solve's tweet.

 

Sounds like what it promised to be but I will withhold any judgment until every cent is specified. So far I have learned to expect the least effective use of resources, not because I'm a cynic but because it has never failed once.

Really don't mean to be pessimist, but we have been burned too many times. Including by Collins himself, who lied to our faces last year. He will be responsible for determining how this money gets allocated and I have zero confidence in his ability to do so in a way that will be relevant, to ME or LC. Especially as doing the right thing makes Collins' and the NIH's past decisions, including some very recent, look horrible and misguided.

 

We're still being burned.

ME/CFS: lucky to get $12 million per year.
post-COVID: One billion dollars (to be pronounced in Dr Evil voice, finished off by placing pinky finger at corner of mouth).

 

I pretty much assume that any competent research on LC will apply to ME, we will get all the benefits. There are very few aspects of LC that are not relevant to us, if any.

The only question is what % of that $1B actually goes to useful research vs. fools' errands. If it's above 50%, I think we're golden. Even if it gets as low as 20%, at least the massive failure out of 80% will sting a lot. It's not $8M, we'd be talking about 100x. Nobody wants to waste $800M on nonsense. That can't be swept under the rug the way PACE was.

The main worry is how much of that funding will go to acute Covid instead of chronic impacts. I assume this is the main threat, people thinking this is a waste and the only that matters is what kills, everything else is just fluff. It's very easy to repurpose funding. We know. But maybe $1B is too much to succeed here.

 

Just want to say I very much appreciate this thread as I was first excited about the Solve ME announcement and then the doubt set in but hadn't seen the above discussion. Will be watching for developments. Grateful that the long-haulers will be pushing on this. Agree with rvallee that we'll all benefit from any good long COVID research.

 

Code:

https://twitter.com/sonya_lala_/status/1349553791809462276

https://twitter.com/user/status/1349553791809462276

 

So for decades we plead for slightly more than peanuts, and they tell us that the problem isn't enough applications and they can't put any special funding aside to build capacity and encourage applications.

Yet now they are like:

 

Let's not be bitter. Long covid deserves funding and so do we. This will likely help us too.

 

Amazing, wonderful news.. Long covid syndrome likely encompass many conditions including organ damage to lungs, heart etc, but it’s bound to be that much of this will benefit us. Unbelievable.

 

Thread:
https://twitter.com/user/status/1349827581885878272

 

Huh?? Remdesivir, bamlanivimab, casirivimab + imdevimab, baricitinib, dexamethasone, etc, and more coming

https://www.nytimes.com/interactive/2020/science/coronavirus-drugs-treatments.html

Almost as many as the number of vaccines under research and just as many approved if not more already in use.

 

I don't count the NYT a reliable source and what they think is promising and not. At the moment, there is no approved drug that could make a big difference. For dexamethasone, a repurposed drug, to be considered a possibility, the FLCCC had to put a lot of emphasis on the matter, which is independent of a state initiative. This is exactly what I mean. The NYT lists other repurposed drugs as well, Ivermectin, for instance. Evidence on Ivermectin has emerged in April. There was no initiative for a large trial, though. This is what I mean. Only now, after public pressure, they react again. Remdesivir, which they also list, isn't a repurposed drug since its approval was bound to COVID-19. So there can not be any long-term data like for repurposed drugs such as for dexamethasone. There is a lot of reaction and not proaction.