USA: The RECOVER Initiative - Long Covid research

A whole new crop of people entering the field and wasting government money on treatments that have already failed for the last 40 years.

 

It should be called the RECYCLING initiative instead of the RECOVER initiative.

 

One thing can honestly be said about this and these people: they are very talented at wasting public funds. You'd almost think they were trained for it. It would be easy to be confused given the absolute perfection with which they capture, then utterly waste, millions of dollars meant to help people.

 

Copied from the long covid in the media thread

https://twitter.com/user/status/1645584398325276678

 

https://twitter.com/user/status/1650911422019256326

 

Click into the thread with videos posted by Dakota that's being highlighted too

https://twitter.com/user/status/1651023007098470402

 

Ughhhhhh......

 

That panel was a mess, and that Lewis dude has no business being involved in this, a blind lecturing the only people around with 2 working eyes. They don't have a freaking clue what they're even doing over there. Are they even aware that most patients who were given some treatment were given this specific treatment? Doesn't seem so. Are they aware that there have been hundreds of those trials already, going back decades? Who knows at this point?

Do they know that there are currently dozens of this exact kind of trial already under way? None of which will inform anything since they are all merely pragmatic trials with ambiguous results, as is tradition.

It's easy to see how they'll end up blowing through over a billion dollar with nothing to show for it. They are so obviously bored and uninterested in what's happening and have zero stake in the outcome, they'll be content with complete failure and think nothing of it. All that matters on a resume is that they spent a lot of money and that makes them more likely to be tapped to waste large sums of money in the future.

 

Merged thread
Edit: The story's headline has been changed. The old headline sounded a bit like patients did want help, or perhaps patients didn't understand or appreciate scientific studies.

New headline:
An exercise trial for long covid is being criticized by some patients

Old headline:
Some long-covid patients oppose an exercise trial aiming to help them

NIH’s RECOVER initiative plans to study exercise as a potential treatment for long covid. Some long-covid patients say exercise does them more harm than good.

Regular link: https://www.washingtonpost.com/wellness/2023/05/22/long-covid-treatment-exercise-trial/

Gift link: https://wapo.st/43j6duZ

 

Lets expose skin cancer patients to more sun to see if they develop immunity to the sun to find treatments.

 

Relies on this for the "half of LC patients develop ME": Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is common in post-acute sequelae of SARS-CoV-2 infection (PASC) > (S4ME) a whole 140 non selective subjects !

 

Reduced exercise capacity, chronotropic incompetence, and early systemic inflammation in cardiopulmonary phenotype Long COVID > (S4ME)

"Although exercise is unlikely to cure LC, exercise training is the only intervention demonstrated to improve exercise capacity in chronotropic incompetence separate from PASC [47] and may improve symptoms and quality of life. Exercise training is also effective for postural orthostatic tachycardia syndrome, one phenotype of cardiopulmonary PASC. Reports of post-exertional malaise or symptom exacerbation in PASC overlapping with myalgic encephalitis/chronic fatigue syndrome [48] mean that exercise-based interventions should be tested rigorously for safety and efficacy. In PASC, different exercise strategies have supportive preliminary data: a structured pacing intervention improved fitness and reduced post-exertional symptom exacerbation [49], and supervised exercise training may be helpful and safe 50."

 

I literally cannot believe how badly trying to cure ME with excercise can worsen the condition. It was like pouring oil on a small kitchen fire and now my house is ablaze. Before it destroyed my life I had no idea of the risks I was running, even though I was vaguely aware some people said excercise made them worse. Neither can the people who've signed up for this.

I wish there was some way to raise awareness of how dangerous it can be in a highly visible and unignorable way.

 

We need to keep using 'safety' language. We Pace for safety reasons. We prevent PEM for safety reasons. It needs directly addressing rather than everyone tiptoing around as though the issue doesn't matter.

 

Frankly, criticism of the exercise trial is mostly not specifically about the trial, but about what it says about their priorities, or lack thereof. No one who knows what they're doing as part of a large research program would think this is a good idea, and yet they think it's a priority. Despite having delivered absolutely nothing.

And the fact that they have delivered absolutely nothing while making an exercise trial, one that will teach us nothing about any of this, a priority are basically two sides of the same coin. They simply don't know how to figure stuff out. They need to have the first step for free or it all just gets paralyzed in politics and the tradition of failure where chronic illness is concerned.

We know how the trial would be used. Even if it's a failure, evidence means nothing in evidence-based medicine. And either they don't understand that, ineptitude, or do and can't seem to care, also incompetence but with bits of malice stirred into it. They can't seem to care that pouring fuel on the fire will make it worse for us, but pouring fuel on the fire is all they seem able to do. When reality conflicts with their model, they throw away reality and double down on the model. This is just one example of that dysfunction.

It's not just unlikely that exercise would be a cure, it's delusional to think that it's of any use here. Anyone who has failed to notice how motivated to get back to their lives the patients are can see this easily, and it really takes refusing to even look to fail to notice it.

It's the complete lack of adaptation and escalation that is on full display, there is one model with a set of scripts and all they do is mindlessly run the same scripts because they can't think outside of the rote-memorized scripted models. Failure isn't just an option, it's what everyone has clearly decided would be the only acceptable outcome, with the exception of maybe a few dozen people, almost all of which were already working on ME before any of this happened.

Honestly it has to be said but medicine is just plain bad at this stuff, and is unable to admit to any such thing. They're not just lost and refusing to ask for directions, they drove in a backwards loop from the start and just refuse to hear from everyone screaming at them where they should be going. Absurd pathetic failure all over the place.

 

Yes just because it is exercise - and has been done to the point of proving no more trials are needed, but was counter-intuitive in the first place unless your job happens to be in pushing it - doesn't make it any less wasteful than if they were spanking the money at 'eating peanut butter sandwiches twice a day' instead of one of the avenues that is promising but has been desperately underfunded.

Cruel irony of the situation that there is no 'stuck in a rut' kill-switch and yet the exploratory stuff that has more 'significance' potentially being shown gets turned down simply because what more has been done before. Is that a doom-loop or a death-spiral I can't remember which one but as long as individuals want to think making tiny tweaks to something that was wholly investigated for so long and couldn't prove the hypothesis, or not even doing that, and producing a literature that never reaches a decent significance with reliability doesn't eventually mean the null hypothesis is proven then there is an issue. Because the rule of literature is that people seem to have to draw on old stuff even where it is round and drain-circling?

But £1.5 BILLION - I mean given we can't fully work out where the £5m fully went from back in the day with PACE that is a foxing amount. It is also surely an amount that put into a bioscience institute could have made some massive headway towards a serious breakthrough. Of the kind ekeing the odd person who has a certain type of something into a 10% improvement, if any of those exist, can't touch.

For that sort of money into a project you'd surely expect e.g. work towards a treatment for RA/arthritis or lupus rather than 'which topical pain relief helps' and 'should they try swimming once a week' as management strategies. Or are they looking at people with lung damage from COvid or something I've missed and genuinely think exercise could cure without meds or something?

There is also a point to be made that trials with their lowest-common-denominator approach and proper licensing regs on reporting side effects and harms are more appropriately suited for such biomed and not for lumping different bodies under the same thing anyway?

 

Did someone ring?

If they actually screen for PEM, exclude patients who have it and remove those who develop it, it won't be dangerous to pwME. However, I don't trust they will do that in practice because we've been burned so many times before.

Also, our opportunity for learning is pretty small. Best case scenario, exercise helps people a little because it's good for you. But it's still an unblinded trial with subjective outcomes. If most people report they feel a little better, that's no different from homeopathy.

 

and worse you don't even notice it (or don't notice how bad it will be as you think it feels a bit bad, but don't know the half of it until 6months a year later speaking from experience) a the time. Because you can't imagine it and can't know where your body is in the scale vs 'how much' is enough to really tip you over (and you don't know even once you've done it because were you 200 or 300% over) and you might have got away with the odd little bit and then had good recovery time so think your body is different, until the next time you do it when you don't get away with it.

I mean how is it that your body can let you do things, even when you are already ill, that cause so much harm later on is the horrible thing of it all. And that sickening feeling looking back that you thought you were getting away with it, or that particular activity was OK on balance etc.