Long Covid Action Project is dangerous, and is actively hurting the Long Covid community

Overview: Long Covid Action Project (LCAP) brands itself as an organisation fighting for long covid research. But the organisation is built upon misinformation and distortion of facts (intentionally or unintentionally). Its actions are more harmful to the long covid community than beneficial.

The problem can be summarised as: “They take opinions on what the cause and cure of Long Covid is, before it has been proven by research, and claim them as fact. They try to push governments to only study what they believe causes and cures long covid while neglecting the rest”.

Summary of sections:

• They claim long covid is like AIDS and solely caused by viral persistence. Which is a harmful way to present the disease and not backed by research.
• They disrupted the long covid moonshot and asked it to focus nearly only on viral persistence and no other issue related to long covid, which neglects the majority of patients.
• They claim that antivirals will be the cure (ignoring the heterogenity of long covid and many other promising treatments) and try to make nearly all clinical trial funding go to antivirals.
• They claim to be made up of scientists experts and researchers, but none of the people listed on the website are.
• Their allies have harassed, doxxed, sent death threats, and misogynistic insults to members of the long covid community.

“Viral persistence and nothing else”

Long covid action project claims that Long Covid is a disease with:

“AIDS-like immune dysregulation which researchers attribute to SARS-CoV-2 viral persistence.”

(this is a quote taken straight from the front page). This quote says many things that are untrue and/or unproven and claims them as fact:

• Immune dysregulation has been found in large subsets of long covid patients. This immune dysregulation is not similar to to AIDS. AIDS causes a depletion of CD4+ T-cells, effectively weakening the immune system and without treatment, being a death sentence in the long run. Subsets in long covid has been found to cause multiple immune abnormalities, although not all are corroborated. The most promising of findings is a abnormalities in proteins of the complement system. This is very different from what is found in HIV/AIDS.
• Viral persistence has been found upto a year in a subset of long covid patients. Saying all long covid patients have viral persistence is false. Saying that viral persistence is the cause of all long covid is misinformation as no research has proven this and much research points to other possible factors. It is very likely to be a mechanism in a limited subset, however.
• Long covid is comprised of/can cause many different conditions: from POTS, MCAS, and dysautonomia to ME/CFS, IBS, and autoimmune diseases. (and much more.)

Read more on the biological abnormalities.

Classifying long covid as a single distinct disease caused exclusively by viral persistance is not only contrary to current research, but also neglects the large long covid population presenting diverse symptoms.

Long covid moonshot disruption

But LCAP is sure of what they are doing. Therefore they have made a campaign to ask the Long covid moonshot bill to not put any effort into diseases which are a part of long covid such as Dysautonomia (which affects a large majority of LC patients source) and ME/CFS (which affects around half of long covid patients source ). Claiming the focal point of the long covid bill should be viral persistence. In effect, instead of letting scientists study where there science points to, focalising efforts on viral persistence and ignoring the rest.

This campaign has gone around long covid communities and has received many signatures. It was however presented in a malicious manner. For example in the r/covidlonghaulers reddit community (before moderators removed the post for disinformation) there was a post with 120 upvotes linking to the signature with the title as “Sign this letter requesting treatment!! Bernie is requesting billions for us” with no additional context. Which is not what the letter actually suggests. The actual letter is under the place where you sign so people will sign before reading the letter or won’t read the letter at all. They have managed to gather 8’000 signatures this way.

This letter also suggests 28 billion dollars of funding for LC per year (which is ridiculous, given that that is half the NIH yearly budget.) It would mean long covid gets more funding than all cancers, all mental health diseases, all autoimmune diseases, all forms of dementia, AIDS, heart disease, and ALS put together source. The bottom line is that this is unserious and shows a fundamental lack of pragmatism, which will hurt perceptions of the long covid community. Signaling their opposition to the Moonshot, the HELP hearing on Long Covid, two LCAP activists shouted “Moonshot kills” in front of the Senators.

“Antivirals are the cure”

Another problem is an inherent obsession with antivirals. The scientific literature, although lacking in corroborated findings, points to many biomedical interventions that could be helpful for some long covid patients, anti-virals are among them, but far from the most promising. They should be studied but not focused on solely. There exists many other promising potential treatments such as immunomodulators (ie. Ampligen), BC007 and drugs attacking oxidative stress. However in their proposed changes to senator Sander’s bill LCAP want long covid clinical trials to be nearly solely focused on antivirals to cure and treat long covid. They even made a documentary which is prominent on their front page called “ANTIVIRALS NOW”.

Inconsistencies

The project claims to be “developed by people with Long Covid who are journalists, professors, scientists and experts”. However only three names come up on their website. One of these people is a documentary filmmaker, another is an artist, and a third is of unknown profession, though no university pages or linkedin profiles show anyone with that name being a researcher or professor.

Harassment against fellow long haulers

There have been multiple accusations of harassment from LCAP allies. They have been said to demonise anyone who says that there may be a link between long covid and ME/CFS, while they themselves comparing Long Covid to AIDS. They claim that anyone that doesn’t see viral persistence as the only possible cause and mechanism of long covid, are malevolent people trying to steal from long covid patients (even though many of the people saying this are long covid patients).

I spoke to a longhauler who has been a target of harassment from LCAP and their allies for views that they have published alongside many others in the long covid community. They agreed to let me quote them on the condition of anonymity due to recieving death threats from LCAP allies in the past. Here are some quotes:

• “Key LCAP allies have doxxed mainstream activists, sent serious misogynistic abuse. After we published [redacted for anonymity], 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 people with scientific backgrounds in the mainstream advocacy community, hence organisations like patient-led research collaborative, LCAP is made up of people who are not only scientifically and academically ignorant, but are unaware of their own ignorance.”
• “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/CFS 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 [their main achievement being] making Long Covid twitter incredibly toxic.”

Hoping my fellow longhaulers a wonderful day. Love Yann.

Note: This was originally posted on reddit and is hosted on this website as a backup. There are slight differences in wording with the post, as this backup has been proofread additional times.

Edit: I was informed of an occurrence where LCAP may have been openly misleading. LCAP claimed they sent 500k letters to the government but what actually happened is they got 1’000 signatures. Twitter thread showing this

Edit 2: A small minority of completely new reddit accounts have shown exactly why it was necessary to write this post. I was insulted and called a r**d (slur based on intelectual disability) in one comment. Which was thankfully removed by the moderators for breaking rule three. Another new reddit user reported my account for being suicidal and I got a message from the reddit suicide hotline (minutes after I replied to an argument claiming I was silencing LCAP.) I am not sure how but the founder of LCAP found out my first name maybe I mentioned in past comments. Note on backed up post, in the backed up version, I use my personal name as the founder of LCAP released it.

Reply from the founder of LCAP

This post is hateful & false. As the founder of LCAP, I wanted to clear up that Yann is intentionally spreading disinformation about LCAP & LCAP’s HEAL legislation that will harm pwLC. In no way does HEAL or the research bill “limit” itself to viral persistence, please take a look at the research language in VITAL for more info.

Furthermore, LCAP has a strict no hate policy & will confront any attempts like this one to attack Long Covid activists.

“LCAP invites everyone to join with our non-partisan trans-founded organization, to call for solidarity & actions that are inclusive, diverse, & anti-oppressive in order to take down structural discrimination. LCAP affirms its continued solidarity for anti-racism, & is against discrimination & violence toward lesbian, gay, bisexual, & transgender (LGBTQQIP2SAA+) people who promote their self-affirmation, dignity & equality rights, increase their visibility as a social group, build community, & celebrate sexual diversity & gender variance. We do not tolerate attacks on race or gender. Through non-violent direct action we fight against all forms & expressions of colonial power that divide & destroy solidarity.

Be Loud 💥 Take Power 🔧 Fight Long Covid! 🔥”

VITAL: VITAL INNOVATIVE TREATMENTS AND ANTIVIRALS FOR LONG COVID ACT

My Reply

Hi, Your HEAL campaign states as follows.

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.

In my post I said:

[LCAP] Claiming the focal point of the bill should be viral persistence.

Additionally it is great you have policies against harassment. It would be even better if they were enforced on your allies.

I am not sure why you brought up trans rights, anti-racism, and LGBTQ+ rights. Obviously I support these too, but the discussion here is about your organisation and biomedical research into long covid.

My post was not intended as hate, and I have made special care not to mention anyone by name, or say that your organisation is intentionally spreading misinformation, as I cannot be sure of your intentions. Meanwhile your allies have attempted to dox me multiple times in the comments, provided countless insults, many of which were removed due to violating reddit terms of service. It would help public perceptions of your organisation to condemn these sort of attacks and the individuals perpetrating them.

Kind Regards, Yann

Note: I did not recieve an answer to this post by LCAP’s founder. Although I did recieve a message from an LCAP ally tellng me I will die a slow death.

Addendum by an anonymous commenter

The most remarkable thing about LCAP is how little they’ve actually done. They posted a YouTube video about tinnitus that received a couple hundred views. They shared an incredibly poorly articulated letter and got people to send it to politicians hundreds of thousands of times. They did a recent protest that got virtually no media attention.

If you compare that with patient led research collaborative, or body politic, or CLAP, it’s nothing. These other organisations have worked with major governmental bodies, published papers in top journals, got media attention in high profile outlets, and contributed to global Long Covid guidelines. And the moonshot initiative they [LCAP] hate so intensely? Well their efforts ensured that all 15 senators attended the HELP hearing, which is no mean feat, and their activism played a fundamental role in informing Bernie Sanders’s recent proposed bill, which is by far the most important bit of proposed Long Covid legislation to date. In other words, these other organisations have got on with the job and have done very impressive and effective work.

LCAP by contrast is loud, hateful, and largely useless. They have done a remarkable job of gathering the least intelligent and effective activists out there, which is how you end up with a ridiculous demand like $28 billion in research funding a year or have activists shouting ‘moonshot kills’ in front of senators. In other words, the only reason people talk about them is because of the hate and toxicity they’ve spread on Long Covid Twitter.

In terms of substance vs loud toxicity, patient-led research collaborative, a group that LCAP loves to criticise, has actually done far more concrete things to promote research into viral persistence than LCAP.

• ⁠they are funding a monoclonal antibody trial, one of incredibly few treatment trials targeting viral persistence • ⁠as early as 2021, patient led asked the WHO to include viral persistence as a major Long Covid research direction • ⁠they included viral persistence in hundreds of interviews, including in testimony to Congress • ⁠in early 2023, they called for the FDA to prioritise antivirals in Long Covid clinical trials • ⁠a team from LCRC published a series of case studies on the use of an extended dose of paxlovid to treat Long Covid

A more detailed list here: https://x.com/patientled/status/1719134199943463417

So the organisations LCAP attacks have actually done far more effective work on LCAP’s signature issue than LCAP has.

Some examples of harassment after this page was made

Daniel @dbdugger has openly stated he hopes ME patients starve to death. pic.twitter.com/F9niT7W2pL

— Sue (@inkblue01) May 12, 2024

An example tweet of an LCAP ally who send me with countless tweets (I ignored him and he kept on going for weeks).

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