USA Long Covid Action Project

Hi I wanted to create a thread on the organisation long covid action project to keep up with what they are doing. (A lot of which worries me.)

This organisation says and claims as fact that long covid is a single disease caused by viral persistance. From their front page:

Long Covid is a multi-systemic disease, damaging organs, neurological, GI, and vascular systems alongside AIDS-like immune dysregulation which researchers attribute to SARS-CoV-2 viral persistence.
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They seem to be quite popular in the LC community and are getting a decent amount of donations etc.

Here is a link: https://longcovidactionproject.com/

 

LCAP has started a campaign to try and push Sander’s long covid moonshot bill, to only allow research funding to go into viral persistence.

Senator Sanders' suggested legislation for Long Covid lacks direct focus on viral persistence of SARS-CoV-2, allowing for it to be combined with various conditions under one umbrella, now being sold to Congress as IACC (infection associated chronic conditions). This lack of focus on viral persistence would reduce funding for Long Covid to a nominal amount and mistakenly conflate Long Covid with diseases that are not biomedically the same. Unless SARS-CoV-2 persistence is the focal point for new legislation it will perpetuate a profoundly challenging issue for both current and future people with Long Covid, as well as their families.
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This letter has been signed 5x more than the letter from Solve ME asking to add “associated conditions” (such as ME/CFS and POTS) to the bill. (People with a US address can sign it here).

The LCAP letter is being shared around social media in a potentially misleading manner. Unlike Solve ME’s letter where you sign at the bottom and therefore have atleast skimmed through the letter before signing. LCAP’s letter is signed at the top. It is being shared around social media with captions such as “Sign this letter requesting treatment!! Bernie is requesting billions for us” with no additional context. Which is not really at all what the letter actually suggests. Most people won’t bother to check any further and will simply sign. The above example is a post with 120 upvotes on reddit.

Here is a link to LCAP’s letter if intrigued: https://actionnetwork.org/letters/t...n-proposal-for-long-covid?source=direct_link&

Additionally signing this letter automatically adds you to lcap’s mailing list in quite a sneaky way. Giving them lots of influence over you.

 

This looks suspiciously like something led by those making a living out of selling antiviral services.

 

That is a good shout. Given this is on their front page:

“ANTIVIRALS NOW” a new short film ️ directed by @JoshuaPribanic on SARS2 viral persistence reveals a destabilizing truth about Long Covid. Researchers, patients, activists & science illustrate how no one is safe from the threat of COVID persistence.​

 

LCAP is by far the least serious part of the Long Covid patient movement. It's almost difficult to know where to start with them.

- They have called for $28 billion in funding *a year* for Long Covid. Yes, they think it's realistic to ask for half the NIH's annual budget at a time when the Republican Party is increasingly turning against upping funding for scientific research.

- At the HELP hearing on Long Covid, two LCAP activists shouted "Moonshot kills" in front of the Senators, referring to the far more impressive and effective moonshot initiative. And that's just the tip of the iceberg when it comes to their toxicity. Frankly the only thing they're good at is attacking other Long Covid advocates. Key LCAP allies have doxxed mainstream activists, sent serious misogynistic abuse. After I published an article alongside three other longhaulers on Long Covid and ME, one of LCAP's most prominent allies (who spoke at their recent small protest and who doesn't actually have Long Covid himself) wrote 2 public death threats against us on twitter.

- Intellectually and scientifically, they're fundamentally unserious. Whereas there are a lot of ppl with scientific backgrounds in the mainstream advocacy community, hence organisations like patient-led research collaborative, LCAP is made up of ppl who are not only scientifically and academically ignorant, but are unaware of their own ignorance (I personally have no scientific background). They attack any mainstream activist who dares to suggest that there is some connection between Long Covid and ME while themselves equating Long Covid and AIDS. They are convinced that viral persistence is the be all and end all, and anyone who disagrees is described as saying that Long Covid is "nothing new." Of course, the mainstream position is far more complex than Long Covid being "nothing new," the mainstream positions being something like; there is a large subset that overlaps with ME both in terms of symptoms and underlying mechanisms, though that doesn't discount the importance of viral persistence; viral persistence may well play a big role in Long Covid, but its importance may vary from subset to subset and it may just be one of many mechanisms.

They're not a group that deserves to be taken seriously. Beyond making Long Covid twitter incredibly toxic, the only other big things they seem to have done are a) getting a really poorly articulated letter calling for $28 billion signed about 400k times and sent to politicians (which is child's play compared to what other organisations have achieved) and b) organising a recent protest that got next to no media attention.

 

I looked through their website and nowhere could I find listed who the founders/ceo/employees are. The closest I could find was:

This website is being developed by people with Long Covid who are journalists, professors, scientists and experts to serve as a blueprint for a documentary production that defines Long Covid and shares resources for taking action to establish novel antivirals, legislation and funding to meet the demands of what is now the fastest growing disease in America

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Edit my bad I found their team however none of the people listed are scientists, etc.
They are artists and documentary filmakers.

 

LCAP sounds like ME/CFS group 40 years ago. It's the exhibit A of why patient groups shouldn't line up for/against particular hypotheses.

 

Except when certain hypotheses cause harms that are widely reported by the majority of patients surveyed. That is when it is appropriate to be against those.

 

I don't think it is the hypothesis itself that causes harms; it's the current (past?) treatment prescribed by it. FND as the cause is only as plausible as viral persistence as far as I can see. That is to say that neither is likely. But who knows. There could be something in either that will eventually lead to better understanding of ME/CFS. Patient groups forcing policy makers to make a bet on particular hypotheses will only retard the progress toward the solution.

 

For clarity, I doubt that viral persistence is the issue for folks with Long Covid, or for that matter ME/CFS. However, I would be happy to change my mind if presented with a decent evidence base to support it.

But I am all for patient groups forcing policy makers to abandon hypotheses that have been proven to be, at best, useless, and commonly harmful, as is the case with the hypothesis behind GET and CBT. That particular hypothesis absolutely causes harm by itself; it postulates that we have it in our power to get better, and that their proposed treatments are harmless, and that has led to the exceedingly poor treatment of pwME worldwide.

 

I disagree with the comparison to FND. There have been quite a lot of viral persistence studies at this point, so we do know that viral persistence is a *thing.* Lots of questions remain - why has viral persistence been found in many people who have completely recovered from covid? Is there any evidence of live, replicating virus in patients rather than just viral remnants? Does viral persistence correlate with symptom severity? The 20-30 viral persistence studies done so far paint a mixed picture. A study in the Lancet yesterday for instance found that viral persistence correlated with symptom severity, but that was at 4 months and didn’t look at the most severely debilitated patients. In many studies, viral persistence hasn’t correlated with symptom severity.

Which is all to say - viral persistence is certainly a hot and promising field of study, but we’re at a very early stage of research. I don’t see the need to be dismissive about the hypothesis. Over the next couple of years, we’ll get a lot more data/studies, including studies on potential viral reservoirs throughout the body, which will hopefully elucidate how important - or unimportant viral persistence is. At the moment, there’s just an extraordinary amount we don’t know about viral persistence, so I’d prefer to deal in uncertainty than predict what the research will find. Also there are many gradations - maybe viral persistence is a key driver in some subsets but not others. After all, Long Covid is this huge umbrella containing a tonne of different phenotypes.
Maybe viral persistence is a key driver early on in the illness, but other mechanisms become dominant as the disease progresses.

What I absolutely agree on is the notion that patients shouldn’t force policymakers to pursue a specific hypothesis. Viral persistence should receive funding, but I wouldn’t personally prioritise it over other areas of study. The way it’s been leapt on by LCAP and the fringes of Long Covid Twitter has been utterly infuriating, but imo the best response to that isn’t to reject viral persistence.

Part of the reason I don’t want to be too dismissive is because viral persistence is likely to become the first area in the history of post-viral illnesses where you have lots of well funded scientists exploring a hypothesis from a number of angles and being in dialogue with each other. Outside of the toxic nonsense on Long Covid Twitter, it’s just been quite refreshing to see top scientists engaging with a post-viral hypothesis much as they’d do with an MS hypothesis. Which isn’t to dismiss historical research into ME, but I don’t think it’s ever been on this scale, particularly in regards to a single hypothesis.

 

Do you have any particular group in mind? CFS wasn't invented 40 years ago and the ME groups seemed OK.

 

For reference to how unserious LCAP is, I posted a social media post [not linking for privacy reasons] which got pretty big, which was basically outlining my concerns with LCAP.

I got a response from the founder (which he spammed 16 times), it claimed my concerns were “hateful and false” did not provide a serious explanation as to how. Additionally he praised his organisation for being pro-LGBT, pro-trans etc in his response, which had nothing to do with my post, where I critique the org’s stand on biomedical research.

Apart from his response, the response from LCAP allies (100 or so responses) was mostly claims of “harassment”, “silencing”, or being false without any evidence. Only in one case did a person make an effort to refute my claims without insulting me. Oh and I got a death threat too.

Edit: I forgot to mention more than one doxxing attempt

 

I meant group of people rather than organizations. Osler's Web that starts with Incline Village outbreak 40 years ago, for example, chronicles the history that shows patients' preference for viral theories and treatments. (No, I haven't read the book, just gleamed from the media coverage).

 

I followed this post and it's difficult to understate just how abusive and nasty some of the responses were from members of LCAP and LCAP adjacent figures. You had several people who couldn't string together more than one, maybe two coherent sentences without personally attacking yannik. Over the past few months, I've had several encounters with members of LCAP and they've basically all looked like this - it's always a bit like talking to a rude brick wall. They're incapable of engaging in an actual conversation about something like viral persistence, and the second you mention some connection to ME or suggest that anti-virals are not, in fact, guaranteed to be the cure for Long Covid, the conversation degenerates into name calling.

 

(Here I am, again wading into a topic I promised myself not to )
But FND is a thing too. It's real and it exists. The only question is whether it applies ME/CFS. I don't think it does, like everybody else in this forum, but I can't be 100% certain. Nobody can. And I'm sure viral persistence is hot and promising field, but my basis for the rejection of FND and viral persistence hypotheses for MECFS is the same: neither explains PEM. At least not easily. But that's just my personal opinion. Science often finds clues in unrelated fields, and I have a lurking suspicion that that will be the case for ME/CFS as well. So, like you, I wouldn't campaign against viral persistence (or any other hypothesis for that matter). But I'm all for rejecting GET/CBT. (OK, I'm really signing off on the topic of FND now)

 

If you want to get some sense of what LCAP is like scientifically, this substack from an LCAP-adjacent figure who has fallen out with LCAP is quite informative:

https://www.thepeoplesstrategist.co...g-covid?utm_source=profile&utm_medium=reader2

Highlights include:

- Proposing that Long Covid should get 4x the research funding cancer does because, by a specific disability metric, Long Covid causes more disability than cancer. No mention of the fact that cancer doesn't get a tonne of funding because it causes disability...

- He proposes that Long Covid is degenerative based on... the acute phase being degenerative ?

- He says that we know anti virals and monoclonal antibodies are effective treatments because there of a case study of three patients who went into remission after MaBs. He goes so far as to say "We can match variants to the right infusion treatments and the majority of people are likely to see some type of recovery."

- And of course everything is about viral persistence and chronic infections. He also views the fact that there is viral persistence in fully recovered people who have never had Long Covid as a sign that everyone is about to experience severe health outcomes.

I'm not even going to try and engage with the notion that it's realistic to ask for $28 billion in the current political climate surrounding covid and scientific research funding. In short, unserious.

 

FND is all or nothing in a way that viral persistence isn't. If biological mechanisms drive Long Covid and ME, these conditions aren't FND -or maybe there is a tiny FND subset of Long Covid. If Long Covid and ME are FND, biological mechanisms become largely irrelevant.

Even if viral persistence isn't the main driver of all Long Covid and ME, it can still play a subsidiary role, maybe earlier in the progression of the disease. Maybe there's some interplay with other mechanisms. That's why I'm willing to give viral persistence more time of day - I think it can be an important part of an ongoing academic discussion whereas FND is ultimately a relatively black and white debate. Viral persistence doesn't have to be a totalising way of understanding these illnesses - it can potentially be a smaller part of a much bigger picture, whereas the opposite is true of FND.

sorry for writing so much, I’m coming off arguing with all those bloody LCAP ppl about viral persistence!