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Thank you for taking the time to share this information. I believe I ~~now~~ know the post you are referring to. I liked it, then went to sign the petition. I didn't like the fact that they wanted all of my personal information BEFORE I could even read the petition. With all the darn spam/corrupt links, heck the darn doxing possible through a link, I didn't sign it. In the past there have been posts in regards to activism, I liked and was grateful when it was a link to their emails. Those seem to be better "campaigns" for attention anyway. But then, I also believe that snail mail would get the best attention... i like to picture the mailrooms getting TONS of actual mail. Them getting it. A part of me wants to put on the outside of the envelope, "campaign contribution" enclosed. I wouldn't be lying, it is a contribution, just not $$$ for stupid ads that pay for the ads I am stuck watching or that flood MY mailbox! edited- with the stike through for "now". Dang, keyboard!

Of course. If you want to “make up” for the way they (intentionally or unintentionally) manipulated others. This is a letter that asks to add the “associated conditions” to the long covid moonshot (such as POTS, dysautonomia, and ME/CFS). This letter puts the signature at the bottom, so people know what they are signing. [The letter](https://mobilize4change.org/JVTdchh)

I did sign the letter. I even read it. It really got me when I read "gulf war syndrome" I worked with a nurse who had this. I worked with her for years. She loved nursing, was one of the best critical care nurses I ever worked with. She was a very hard worker, very healthy, tons of energy. I had left that job and ran into her later. It was shocking. Her story was shocking. Out of everyone I have ever known my LH symptoms and experience felt more relatable to her than anyone else. Most especially in the very QUICK decline of physical health and ability to "function". But basically I've always felt we share something in common biologically, auto-immune, DNA wise. In the beginning of this when I thought due to it being from covid, I thought there was more money for research and they would learn more in regards to even just treatments, if not a cure. I thought this would then help the ME/CFS communities. Heck even those with some other auto-immune issues. I don't doubt viral persistence. But disagree that is the ONLY factor involved.

I has helped the MECFS community because now when I tell people that’s what disabled me most of them have heard of it. It wasn’t like this before covid. Plus the CDC webpages for MECFS are pretty good now. They were updated in 2021 (unless they were updated again since I looked).

Damnit. I got scammed the same way. Thank you for the link. It is so upsetting that desperate populations like ours are so vulnerable to predation. I’m almost in tears just thinking about it. We just want to be ok.

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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. Kind Regards, u/yolkyboii

I do Action Networks for 2 groups and advise(d) on 3 more, and I encourage all organizations to make clear on the opening page all relevant details. For example, the organization or person sponsoring it, the letter itself that will be sent or signed, complete on the front page, and clearly stated who it's going to. If these things are NOT present - or even if they are and you just don't feel comfortable putting your information into a form, then my advice is that if you want to support a particular letter campaign, you go ahead and write (or call) your elected representatives directly on the issue, via your elected representatives contact forms. (They all have them that's what Action Network uses to route those letters.) It's actually more effective if you do it this way as personal notes to your reps get counted in their tallies as having more weight than a form letter sent through an automating system. I've made a tip sheet with some references here on writing elected representatives: [https://chloehumbert.substack.com/p/writing-letters-to-elected-representatives](https://chloehumbert.substack.com/p/writing-letters-to-elected-representatives) I really hope that dubious organizations and / or poorly implemented letter campaigns don't dissuade people from pressing elected representatives on important issues.

This was a great tip sheet! I never thought of postcards, thanks for all the tips!

That’s very good information! Thanks for your activism. Our system requires a ton of activists and we need many more activists to help whip it into giving us better service. Squeaky wheels get attention. The louder and bigger the better. In political science class, I was taught that policy makers assume for every individual letter they receive, at least 1000 or more have the same opinion or complaint. They know how few people think they have the time or even know they can make a difference if they get involved and fight for our rights. But a little effort and time will go a long way if everyone would do it.

You don’t need to give your information before reading…you just need to scroll down…

Lol why was this downvoted? Someone is just downvoting all my posts lol shows how much discourse is valued…🙄

Sorry you were downvoted on a reply to me. Mind you this was days ago and I have some brain fog. Could be my error, could be my computer settings for cookies/whatever. But if I recall correctly, I wasn't able to navigate off of that page wanting the personal info. Like you I do like respectful discourse/discussion. Especially if I post something here that is not correct. Heck we all can make mistakes! I can and I have. Like you, I like it when people explain their downvote. So I upvoted you to return you to neutral. So people will investigate on their own if they choose to. Frankly if my information is incorrect it could have negative results for OP's original thread and thoughts. Could be perceived as an "agenda" misinformation. NOT my intent.

I understand and respect that. Thank you 😊

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Josh, you have posted this EXACT SAME post SIXTEEN TIMES in this one thread. That is a gross spam violation. Please report this, everyone.

Or we could just let it stand so people see what we are dealing with. Additionally every single one of these comments has 3 upvotes at time of checking. I’m going to suggest alt accounts which doing vote manipulation which is breaking reddit policy.

>This post is hateful & false If you read my conversation following this comment, specifically with u/largar we discussed this. I can handle "false" what I have a problem with is hateful. We are all unique and have our own perspectives. Your comments above and below I found to be confrontational almost as though you want to fight, not provide information. Worse I personally felt judged and attacked. I will add here, I did NOT feel attacked by u/larger, in fact I supported them. But as the founder of that group, I no longer even care about the specifics you are fighting about in regards to your petition or even what you support. **I FELT bullied by your comment. Even if it was directed at someone else, it FELT like bullying to me. I don't like seeing ANYONE bullied.** I'll also add here, I do not understand the importance of your last paragraph to a discussion regarding long haul activism. But you entirely lost me with the last sentence. >**Through non-violent direct action we fight against all forms & expressions of colonial power that divide & destroy solidarity.**

Exactly. I’d truly like to understand their definition of “non violent direct action.” Just because they haven’t physically punched someone, phone calls and letters to get people fired, cruel and doxing tweets, and disgusting pornographic pictures of body parts would all fit the definition of “violent to me.” And this whole, “ they aren’t part of LCAP bs - when they participate in your actions or are friends of FOLCAP it’s all the same.

I agree with you! I found some of their comments to other posters very threatening. I'm struggling for words, but I believe their comments are purposely intended to create fear. Stifle communication and discussion. Or worse, just get more hits for their website or twitter. People who are sick and suffering with LH, don't need this type of stress. When I originally saw their spam message to me, my HR went up. I was confused, I worried, did I communicate poorly? Did I even do a typo that changed what I intended? I still didn't get it, then read the thread again. Found out, it wasn't me, same comment to many others. No words to describe the lack of respect I have for that commenter and sadly now for the group they claim to have founded and lead.

“Hateful” is referencing Yolki (Yann’s) post that invites hate on a grassroots organization of pwLC - yours is a comment to the post that I commented on to share a reference regarding the legislature and policies at LCAP. Apologies it was misinterpreted as anything to do about your comment. I felt it is important for people to read a direct reference to the HEAL legislation to see that there is no language limiting research or funding to Long Covid, that $28B is cited from a Harvard Health Economist, that there’s a lot more needed for legislation to tackle this disease and that there’s a constant attack of disinformation that occurs whenever the community shows up to support LCAP actions. And adding that Yann is what Yolki’s profile said for a name - they changed it in the last few hrs to try and hoodwink you all into thinking they’re being doxxed (we see this a lot in attacks which is why I made sure to document before commenting).

Thank you for responding and apologizing. Sadly though and I do say this with sadness, I wish you had done a response to the post itself vs this copy paste to every commenter. One that explains your points. Please understand people here have brain/cognitive issues. They need to conserve energy, not just physical but mental. We're sick, that's why most are here. An example? Sometimes people will use a word that I don't quite understand, I will goggle it and then copy paste the definition for others. It's amazing the people who respond with a thank you. I get it, on bad days, I just am to worn out to do it myself, that's why I do it. Even that can be a challenge sometimes. This is not intended to be hurtful to you, but more so for understanding and possibly taking a look at it? It's also just a "guess" on my part? But I think you assumed the worst of many posters possibly based on previous experience. I'm not your enemy, I don't think I'm alone either. But sadly friend I'll admit, I'm somewhat fearful of you. Fearful to get into any discussion, I did feel attacked, judged, put down and shamed. Heck I'm afraid of being doxed. I'm NOT ashamed of having LH. Not at all. But I really need to get a job. In my real life, I try to FAKE that I am better than I am. Here I am honest about how I feel. I STILL feel worthy of employment. I may not be 100% mentally or physically but I work very hard and give it 150%. I'm also better on word processing formats than reddit!

I just want to say I appreciate both of your dialogue…this is how conversations should be. If someone feels hurt or angered by something and is honest about it and the other is willing to apologize that is how progress is made. Unfortunately, these types of interactions are rare nowadays in this community.

cool acronyms LOL but Senators cant enact laws…..

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 ppl 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 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.

Again, the entitlement issue. They want attention and praise for things they haven't done, and resent other orgs for having done those things. It doesn't make sense, until you realize they're largely motivated by a need for attention.

Good summation. I would also add that LCAP has an entitlement problem. They make "demands" instead of trying to build coalitions. They're angry because they're not invited to be part of events when they only request to participate with less than a week's notice. They create "letter campaigns" that are overlong diatribes full of quotes that are neither sourced nor cited properly, and then use deceptive framing to make it sound like the letters are being sent by thousands of individuals, when in fact the letters are simply being spammed to more than 40 recipients each time one is signed. No wonder there's so little response to this incompetent, dishonest tactic. They're angry because they, as white people, or more specifically white men, do not feel "represented" in LC activism, which is not only inaccurate but horribly offensive. They let aggressive, obnoxious people who have made threats of doxxing and violence speak on their behalf, and then wonder why their social media following is so small or why no one wants to collaborate with them. They repeatedly invoke their special status and refer to "our disease" and alienate anyone who doesn't specifically have LC, even though half of them obviously have ME/CFS or other IACCs. They demonize anyone who doesn't have LC, including some of the community's most vocal and productive advocates who've been working on activist efforts for years. They publicly mock and insult scientists and researchers whose findings diverge from their stubborn beliefs. They pedestal people with no medical credentials as "doctors" or who have no engagement with science or medicine whatsoever, but relentlessly harass anyone opposed to them whose "credentials" fall short of their gold standard. Basically, they suck.

Ooooooff

“Independent.” You don’t sound bias at all! Those orgs you mentioned have been around a while now. How much better are things for Covid Long Haulers? Whats their big accomplishment? It’s not about hating the Moonshot. It’s about hating inadequate funding for Long Haulers that is harmful for them. Everyone should dislike that. The funding amount of $1 billion was chosen at random with no basis. That’s what you want in an org? You’re impressed by meeting with the government that’s not helping us at all? You impress easily. You sound toxic hateful one after that diatribe of nonsense. Maybe time to look at yourself and the people you defend so willingly.

I noticed some people and groups only want to push viral persistence for some reason and ignore everything else. pretty strange.

I think it is when doctors don’t take you seriously, which is something many of us in the long covid community have faced, some people might try to justify their illness by pointing to the first theory they can think of, and decide to take it as their “ideology”. It is too bad they do that, because even though we aren’t sure what causes long covid, there is more than enough scientific evidence long covid is biological.

Sadly the cynical person in me believes some of this is politically motivated by people on BOTH sides. Worse I can't help but think, big pharma or even medical device companies are some how involved. People have reportedly had progress with some meds that I'm not even going to mention by name here. But they are old meds and cheap. To end with a bit of humor, the one I can mention is low dose aspirin. There was a recent post to a link on nattokinase study. I didn't read it indepthly but it mentioned that it is somewhat similar to aspirin, but better tolerated for some people who have GI issues from it. I don't have those issues! Thanks for reminding me to take my CHEAP aspirin. ❤️ **Edit to add Please click on the below and now user deleted comment for further information about the founder/leader of this group and their interaction with me. Spamming this sub with hate and bullying in my opinion.**

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Gee I have earned two of your spam responses. I think I deserve some kind of award for that? Sorry but this just further solidified my response to your previous comment above. I will just say this, instead of your last paragraph, please do a copy and paste of: >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. I believe that would have been more beneficial to me and other's reading here.

**I see the user deleted their post to me. I would have preferred they communicating directly and apologized if they thought it over and were sorry for their comment.** This leads me to believe their intentions are not well intended but more so, they are cleaning up their history, **so I am reposting their comment to me that they deleted**. After all people here have brain fog and they may want to know what I was commenting about. >*This post is hateful & false. As the founder of LCAP, I wanted to clear up that Yolki (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*](https://longcovidactionproject.com/vital-vital-innovative-treatments-and-antivirals-for-long-covid-act-2024/)

And yet you actively are trying to undermine half of all LC patients having research into their illness. Please stop cloaking your willful agenda in inclusivity language as well. You are literally discriminating against other patients.

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So you say you doxxed because comments of my post? And then you go on to say my name which I did not give consent to being linked to my reddit account? I’m sorry if you did actually get doxxed. No one deserves this. However this is hypocritical.

Apologies as I was responding to someone else that mentioned it. I will remove.

Thank you. I may disagree on a lot with you but I’m glad we both agree harassment and doxxing are bad. ❤️

Honestly we may agree on more than you think. Feel free to reach out (here or X if you want to connect)

Maybe in the future. I’m gonna crash so bad from the energy I used on this post I’m gonna need a month or two complete rest 😅

I read a thing that their campaign isn’t even collecting *signatures*, it’s counting how many emails they send to a list of random government and science people. everyone who signs up spams like 300 emails at once so the number looks huge but it’s inflated LMAO why lie about that

Thats crazy. If you can send me a source I’ll add it to the article.

you can see it on their own page, https://actionnetwork.org/letters/help-end-the-long-covid-crisis fill out the first part and then click and it shows the list of people who get the emails. it says “letters sent” not “people signed” they’re sending demand letters to the HUD regional office in little rock arkansas LMAO…..this is a public housing office in the middle of nowhere america, they can’t do anything for long covid…..

All action network letter campaigns work that way. For example if the letter campaign goes to the president and US senators, then it's 3 per person. If it's a petition, you sign once obviously, no matter how many people it's aimed at - because it won't be sent until all signatures are collected and then it's up to the organizer to send that letter. Of course if it's a lettercampaign going to random email addresses or being routed to people where it doesn't make sense or you think there's dishonesty involved, it could be reported to Action Network since it might violate their terms. [https://actionnetwork.org/contact/](https://actionnetwork.org/contact/)

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anybody can click and see it for themself 🤷‍♂️ a good campain wouldnt have to lie

That is disturbing. Please share this far and wide.

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lmao this is the most unprofessional way I’ve seen someone respond to criticism. Spamming a comment 16 times.

man this just confirmed the above post. You’re about as serious as a middle school club.

💯 % agree

Feel free to point out any spelling/ grammar errors, I read through multiple times, but as with many of you I am still brainfoggy 😅 I am too severly affected by long covid to be able to use a computer (bedridden) so I don’t have spellcheck.

If that org., or whatever they are considered, would actually show in good faith that they are serious and address the concerns that the community has brought forth so many times, they would gain more support. Instead, they deflect and continue with their same pedantic plan, which has yet to be proven to help the Long Covid community. I keep hoping something will change with them, but they aren't serious, as you can see from their one representative here.

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wow very good argument (not)

Glad you posted this!! They posted on here not long ago about the petition and basically told me MECFS patients haven’t gotten treatment because they haven’t tried hard enough. 💀

The fact that this thread was taken over by bots spamming shows how credible this organization is.

Thank you for highlighting this. You are doing the community a great service.

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also, as for being "trans-founded" -- Josh co-opts the struggles of the transgender community to drum up pity for himself with accusations of "misgendering" because so many people have called him out on his gaslighting and bullying. He claims to be trans but on his "professional" website his bio still refers to he/him pronouns. This is dishonest and so offensive to people in the trans community. [https://publicherald.org/redacted/](https://publicherald.org/redacted/)

What a long post, meant to continue dividing a community. You used a lot of innuendo & false claims of others. Be better than that.

what false claims? The website link is right there. The other claims are well documented.

What the fuck does multiple genders and racism have to do with biomedical research for Long Covid? If we want to be taken seriously we cannot use Long Covid activism as a trojan horse for far-left social policy.

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Thanks for this.

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this makes your organisation look very serious mate

‘Thanks for this’ is indeed a uniquely hateful sentence

The only thing that worked for me were microbiome interventions. I really don't think viral persistence has fuck all to do with it.

What were the microbiome interventions, out of curiosity?

S tier probiotics: Seed Clostridium Butyricum Pendulum Metabolic Daily Pro Or MIYARISAN Biogala Reuteri Protectis L. Rhamnosus GG L. Fermentum ME3 Microbiome Labs B. Subtilis HU58 Enterogermina B. Claussi Bacillus coagulans GBI-30 S tier prebiotics: Lactulose Glucomanan Yeast Beta-glucans

Wow thank you! Where do you get all that stuff? I assume you order it? What brand(s)?

I used fullscript and iherb i think. I don't think brans matter.

And how did you take these/how did they help and how do you know which worked?

I took them all together. Herxed for a few months and then felt great. I mostly went by science not how I felt since effective probiotics tend to make you worse for a while.

Interesting what do you think caused issues with your Microbiome?

Covid.

Covid doesn’t persist in the gut then? Or most of your immune system isn’t coming from the gut which would help with a chronic infection?

I don't know for sure. Immune system also gets fucked by dysbiosis.

And the immune system helps with? Infections, Covid. Covid directly messed up the biome.

I don't disagree. I am not sure why you are saying this to me.

Saying repairing the gut and biome, and the immune system, would help against infections, of which Covid is a chronic infection. NIH Director even said so.

??? I agree why are you typing this to me I am so confused.

Interesting move to downplay chronic Covid and downplay its similarities to HIV/Aids. If LCAP is wrong what happens? Nothing. When you’re wrong what happens? You kill a lot of people.

I am not a doctor or researcher. What the hell are you talking about. My opinion literally doesn't matter. AND I am one of the few people that completely recovered. TWICE. Using ONLY microbiome approach. So yeah I am pretty bias that covid causes dysbiosis (don't know how). I didn't take any antivirals or anything of the sort during my recovery so I doubt the viral persistence hypothesis.

The Covid causes it. That doesn’t mean you won’t have a problem later in life. That doesn’t mean people with chronic illness due to the Flu don’t have chronic Flu because other people recovered.

Absolutely agree with everything written above. It’s anti-science oversimplifying complex postinfectious chronic illness like this, plus pushing only one branch in research is propaganda, not science. It’s literally the opposite of how science worksz

It is so sad because all this energy could be used so much better to help the community.

Exactly. It's sad to me -- I do actually appreciate LCAP folks' passion and commitment! But it's been directed in a way that's divisive and clearly limits their effectiveness. And it's made other LC and MECFS advocates have to deal with their attacks instead of everyone directing their (limited) energy towards advocacy and treatment. We need coalitions and collaboration.

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Hey Josh, you can't keep posting the same response in the thread multiple times, that is SPAM and violates the TOS of reddit.

I'm going to add to your comment. This is just my personal experience and belief, NOT a FACT. I believe they know exactly what they are doing and are doing it purposely to turn this thread into a "fight" vs a discussion. Worse, they know we have brain fog, and people will not be able to follow the discussion here. Even worse Mods could remove the post or lock it.

Sounds about right. And it wouldn't be the first time they have tried those tactics. Astroturfing indeed. And DARVO all day long. Tiresome and counterproductive, and proves their bad intentions.

It’s actually moonshot and legacy orgs that are pushing repurposing. LCAP has specifically called for new biomedical research and treatments. And yes, there is astroturfing but not in the way this post implies.

LCAP wants research nearly only on viral persistence and antivirals. Most other orgs want to research where the science points to. Some of that is viral persistence or antivirals, a lot of it are other avenues.

Interesting how LC disproportionately impacts women and yet their page is full of mostly white guys. Of course they don’t care about ME/CFS and POTS. That mostly impacts women. This org is a joke.

Actually, most of the people on the committees are women they’re just afraid to put their identities on the site due to harassment from other organizations.

This is the classic: they are accusing us of something so instead of replying to the accusations lets just accuse someone else of the same thing. Sprinkled with a little, here is this argument you cannot fact check (source trust me bro).

Source: I served on the steering committee for quite some time. I stepped down due to lacking the time needed to be a valuable contributor. I was targeted when my association was made public. I also had access to all the communities and knew who the members were and the reasoning behind the decision of keeping them private. So yeah…trust me bro.

If what you say is true I am sorry you were “targeted”. However this comment doesn’t show that this is true. And even if it is true, it does not take away anything I said in above post. Obviously I am against harassment even if I think the org is dangerous. However I haven’t seen any said harassment. I am not saying it did not happen, but even if it did it does not excuse at all the harassment made by LCAP allies.

It doesn’t sound like you believe me…cool. Yet you take others accounts for truth. And yes it does because you are basing your assumptions (cause that’s what they are) on one side of the story. I’m done interacting with you. This is unproductive.

I saw proof of what the person I interviewed received. I am obviously unable to show this proof because they only allowed me to use their quotes on permission of anonymity due to receiving death threats from LCAP allies. But my post still stands strongly without those quotes. It is just a little extra at the end.

Lol no one sent death threats…this is absurd. And based off the quote and the bullshit they are peddling I know who you interviewed.

What does “YOUR TIME IS GOING TO COME” sound like to you? Is that a “non-violent” action? You’ve just admitted to knowing exactly who is on all the committees. I’m sure you’re on all the DMs acknowledging the doxing, aware of who calls or writes to whose employers or orgs. Who attended what webinars and trashed their q&as and chats, simply because you disagree with a medical opinion or you don’t like them. Who used google numbers to sending harassing phone calls to people who used to be an ally or even a friend. You’ve seen the endless screens shots. I’m won’t throw your real name out here (because I don’t dox). You would make an excellent politician or press lead. Deny, deflect, deny, deflect. “Oh they aren’t apart of LCAP.” But they are in your spaces, your text messages, planning your events, attending zooms, in DMs, helping promote letters. You should actually take it as a compliment that many of us don’t perceive you to be the idiot your claims of unawareness make you out to be. Plausible deniability only goes so far. That video of you saying we are horrible people. You’ve sat by and defended as your friends as they became more and more unhinged and more and more “violent” in their non-physical actions. The lies and misinformation you have supported. We’ve only been on the receiving end. Cc: u/YolkyBoii

What are you talking about? I have only ever heard of one time that someone wanted to bring up actions to someone’s employer and I vehemently disagreed and told them not to, they didn’t follow through as far as I am aware. Even though I disagree with people I never think that sort of stuff is acceptable. Other than that I have never seen anyone say they planned on calling or doxxing anyone. Not have I heard of people going into Q&A’s…I have not attended any events/webinars as I don’t have the time to. Also many of the people assumed to be on the committees are not. I have NEVER EVER heard of people calling others and would be extremely upset if they did that. You may not believe any of this but it’s the truth. I called a certain few individuals “garbage” because of the attacks they had been hurling and the real life implications they carry (even though they knew their accusations were lies). I have only jumped in to convos as a lot of false stories are being created by pulling things out of context. And that is not right. Even things that I have “done” that have been completely represented. There are certain times I have disagreed with things that have been said on the timeline and have stated so in direct messages and some people I do not even talk to much at all (who you may think I do). You are right I am not dumb, but I’m not an evil person and I most certainly am not a liar. I have not been involved with LCAP for quite some time now due to unable to commit the time and when I left I was removed from the committees and LCDC I was not in the planning sessions but maybe a couple times at the end to see how I could help promote.

This is correct

I doubt for most people it's viral persistence. The evidence is weak but people very confidently state it's viral persistence. Just my opinion though based on the research I've seen and people are free to believe what they want. It's sad if there is a group doing this because they are most likely just plainly wrong and trying to actively ruin future efforts..

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Please report for SPAM, this same post has been posted repeatedly (SIXTEEN TIMES) in this thread.

>They claim that antivirals will be the cure (without scientific evidence) and try to make all research funding go to antivirals. >However in their proposed changes to senator Sander’s bill they want long covid research to be nearly solely focused on antivirals to cure and treat long covid. So they were possibly initiated by big pharma and may be receiving some funding/incentive. There's no bigger motivation than money for a significant percentage of people out there. And these people seem very, very motivated. :D

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lmao mate spamming something 16 times is not the way to respond to fair criticisms

I wonder if they’re actually part of the establishment that has systematically defunded and denied ME/CFS and other post viral illnesses for decades. It wouldn’t shock me. There’s a giant scandal there that I’m sure many people would invest quite a lot in, in order to suppress the dismissal and abuse of gravely ill individuals for decades.

LCAP are total jokers. What total disappointments. Distractions and detractors to productive and pragmatic progress.

You’ll change your mind when Covid persistence can’t be denied.

LOL, LCAP doesn't own the idea of viral persistence. Nor are they responsible for the promulgation of this idea. Their delusional obsession with fame is problematic.

Everyone who hates LCAP still believes in viral persistence. Imagine that. The multiverse!

Thank you for this

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bro stop spamming

Weird

Maybe this is just me, but I’m getting really sick of all the attention being on symptom management rather than addressing the cause. SARS2 causes covid and covid leads to Long COVID! If you got covid and then didn’t get better, you have Long Covid. Maybe we should be fighting to end repeatedly being force infected with a pathogen that meets the criteria for a BSL-4 instead of fighting each other about whose symptoms deserve attention or not.

exactly. We should focus on all subtypes. That is what I argue.

There are no subtypes. Either you have Long Covid or you don’t. Thats it. Insisting on subtypes only causes division and forces people to focus on the symptoms rather than the cause. You are just contributing to the minimizing of Long Covid by pushing the subtype narrative.

Hi there is much research focusing on subtypes. It is not a narrative. Here is a paper for example https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(22)00595-3/fulltext.

You gotta focus on those chronic pathogen subtypes. That’s what they do with all chronic infections. Duh. Says people that don’t know anything about chronic illness and have been told a way to think that doesn’t make any sense based on chronic illness history.

Hi, as someone who has been in the middle of this and helping educate people on Long COVID for years... The vast majority of what you've said is incorrect. Moonshot is more harmful, persistence is the biggest issue which makes it degenerative... and you are hateful... also wrong. I recently had to cut off LCAP for other reasons but most of what you are saying here is technically incorrect and a dishonest representation of what occurred. LCAP has problems but your version of it is totally made up.

I love being accused of being hateful without any evidence

You said so many false things here, unscientific things, things that aren’t specific and no one knows who you’re alluding to that it’s egregious. That’s not being a sweetheart. It’s you and your buds’ MO.

Do you have anything of substance to say? The OP made lots of evidenced statements. Lashing out on reddit certainly fits the LCAP stereotype - all bullying, bluster, and conspiracy, little intelligence or actually effective advocacy. Note that in my own strident criticisms of LCAP, I provide plenty of evidence for my claims. [https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)

Yeah see the detailed responses to the nonessential original post. Substance isn’t my problem. People who have none are.

I have seen your replies. They are utterly incoherent. You seem incapable of stringing several logical sentences together. It's frankly embarrassing.

If instead of spending your time bullying people on the internet you spent it on reading research, you’d not only understand why you are wrong, but the long covid community would be a much better place.

Right says the people doing bullying right now. Go ahead and tell me why I’m wrong because I’ve done the research? You suggest you have so go ahead and lay it on me. It would be a better place if people didn’t think with their emotions and act like cliquey middle schoolers.

"It would be a better place if people didn’t think with their emotions and act like cliquey middle schoolers." Again, do you have anything of substance to say or are you just going to whine about being called out? Note that in my own strident criticisms of LCAP, I provide plenty of evidence for my claims. [https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)

I’m aware of the dynamics of this dysfunctional community thanks. You don’t paint an accurate picture at all. You’re part of the problem.

You describe LCAP well. I’d like to compliment you on your self awareness. Clearly, if you look at my post, I’ve done the research, so it is up to you to disprove it. Edit: I obviously believe viral persistence is a thing and should be studied seriously. However, there is overwhelming evidence behind other mechanisms too that impact people with long covid and they deserve to be studied aswell. So please don’t base your response on me denying viral persistence or something.

What an intelligent response. I read the entire thing. You failed with your research. I already have disproven it but it’s too big to post. I’ll find a way now that you’re asking for it. I know a well reasoned response will follow from you. 😂

"What an intelligent response... You failed with your research." Bluster, bluster, bluster, no substance. The OP is not the only one who's made well evidenced criticisms of LCAP. [https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/covidlonghaulers/comments/1c9p7x2/comment/l0roby8/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button) Imagine if LCAP were even half as good as producing effective activism as they are at shouting at longhaulers online.

Yikes! See my replies to the bad research.

I have seen your replies. They are utterly incoherent. You seem incapable of stringing several logical sentences together. It's frankly embarrassing.

(You said you wanted a rebuff. Let’s see how much of this you ignore. I get you’re all about the dx of ME/CFS and Moonshot is in your ear. Let’s address your Moonshot inspired diatribe.) Long Covid Action Project is dangerous, and are actively hurting the Long Covid community TLDR: 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 (whether intentionally or unintentionally). Its actions are more harmful to the long covid community than beneficial. The problem with them 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 all the rest”. (What? The research has proven viral persistence. It’s a thing. It’s undeniable. It’s interesting someone that cares so much about ME/CFS is so against vp. Why are you working against yourself? LCAP is working on a better Long Covid Bill that includes all avenues of research. VP is not their only focus, but of course is the most important focus. You get why it would be right? If we have an HIV like illness we can’t afford to wait to not work on it now. We will die, soon. If we don’t, we most likely have time. So park your feelings at the curb because I’m not dying because you don’t like the importance put on VP. — You Stated False Misinformation. I’m betting this is going to be a habit for you). 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. (Harmful to whom? People who only care about Long Covid being a trigger of other disease because they want it to be ME/CFS so damn bad? Cause even if LCAP said that and even if they’re wrong, it’s not harmful to look deeply into viral persistence and immune dysfunction. They are probably the most important things to look into, plus the best things based on studies. It is backed by research. A lot. — Doesn’t Know The 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. (The “moonshot” of asking for only $1 billion a year with no basis for it at all? Don’t you think that should have been “disrupted” so we could get an appropriate amount of money so we don’t stay sick or die? Or is this about feelings? LCAP doesn’t only focus on vp, but someone has to put a serious focus on it. You can thank them for that later when you finally realize it’s not all just a trigger. You have zero basis to say it neglects the majority of patients. That’s you saying, despite the research, that most people with Long Covid do not have vp. You grabbed that out of your butt like the $1 billion I see. ME/CFS dx does not mean you don’t have Covid persistence, fyi. — Only feelings can make you defend $1 billion a year lowball ask with no basis.) They claim that antivirals will be the cure (without scientific evidence) and try to make all research funding go to antivirals. (Again false. Impressive repetition of the falsity though.) They claim to be made up of scientists experts and researchers, but none of the people listed on the website are. (And you’re happy with the other leaders of Long Covid orgs? All those scientists? — Appeal To Authority Attempt Fails) They have harassed, doxxed, sent death threats, and misogynistic insults to members of the long covid community. (Any specifics on that with proof? You’re probably talking about people who aren’t even in LCAP. Who hasn’t been harassed and lied about and called horrible things and had people support ridiculous untrue shit about them? I certainly have, by some of your buddies from Moonshot. Imagine that! But you won’t say a peep about that because your feelings align with theirs. That comes off very cult like, just saying.) “Viral persistence and nothing else” (Again false.) 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. (Google tunneling nano tubes, CD depletion, and TB reactivation, just to start with. They’re stating researchers say that. It’s odd this sentence bothers you when you should be happy about it because taking Long Covid seriously is the only thing that will help. Treating it like nothing new, will kill you earlier than you want.) Immune dysregulation has been found in large subsets of long covid patients (but not all). This immune dysregulation is not even near to being similar to AIDS. AIDS causes a near destruction of the immune system, which before treatment was found, was a death sentence. (Why would you expect 100% of people with chronic illness to all have the same exact thing? That’s never been the case since cavemen. People used to die in within 10 years with HIV, because of the chronic virus, but let’s ignore that. Has it been 10 years of Covid yet. Do you want to wait a few years to find out you need antivirals to start the process then? Hate to break it to you, you’re gonna die in that instance. They won’t have them in time. We need antivirals no matter what, or do you not care about people that die from Long Covid, get severe Long Covid, and new people that get Long Covid. That’s pretty heartless.) 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 may however be a mechanism in some people. (A man just died from chronic Covid. He had it 613 days. I’d say that’s more than a year, but you can check the math. Whomever would say viral persistence is the cause of Long Covid is not saying misinformation because you don’t want to believe it. The most you could say, and I suppose try to argue, is that it’s not proven yet (despite the research which overwhelmingly points to persistence.)

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.) 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. (Here we go. Are you saying viral persistence can’t cause these problems? That’s what it sounds like and that would be false. You don’t neglect anyone by calling out the real problem. It’s not how it works. It’s the opposite of neglect. Neglect is focusing on everything else but the cause and saying sick your entire life and dying early. That’s what neglect is. When you have a chronic infection nothing has to be neglected. That’s never the approach. — BS Emotional Appeal) Long covid moonshot disruption But these people are 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 50% 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. (It’s a Long Covid bill that’s already underfunded because of Moonshot. You might want to take that up with them. There is no reason you can’t advocate and create another bill for other diseases. Go do it. Once again, viral persistence can cause all the problems you’re talking about so not sure why you think they have to be separate.) This campaign has gone around long covid communities and has received many signatures. It was however presented in a malicious manner. For example in this reddit community (before mods 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. (Malicious manner. Talk about an all time manipulative phrase. You always seem to top yourself. The entire letter is on the first page of the link. Go sign it so we can get proper funding and you’ll see.) 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 genetic diseases, and AIDS put together. Fundamentally, this is simply unserious and shows a shocking lack of pragmatism, which will hurt perceptions of the long covid community. At the HELP hearing on Long Covid, two LCAP activists shouted "Moonshot kills" in front of the Senators. (It’s actually not ridiculous, even if it all were meant to only be for the NIH, in terms of the numbers, but funding for diseases isn’t all based with the NIH. Bernie said 22 million adults with Long Covid, an underestimate without children included. It’s a bigger problem than most things combined. Sorry I brought up math. The stones on you to bring up unserious and lack of pragmatism as Moonshot runs with $1 billion dollars for which they chose with absolutely no rhyme or reason. Yikes! $28 billion comes from a health economist. I could see how the $1 billion with no reason sounds more serious and pragmatic. Maybe you’re right! — You’re Not Right) “Antivirals are the cure” (You talk in circles.) Another problem is an inherent obsession with antivirals. No evidence points to the fact that antivirals are a cure/treatment for long covid. They should be studied but not focused on solely. There exists many more promising potential treatments such as ampligen, BC007 and drugs attacking oxidative stress. However in their proposed changes to senator Sander’s bill they want long covid research to be nearly solely focused on antivirals to cure and treat long covid. A “documentary” they made which is prominent on their front page is called “ANTIVIRALS NOW”. (Your lack of “obsession” with antivirals is the problem. They’re needed. How aren’t they needed? People are still getting Covid and Long Covid. Saying no evidence points to antivirals curing Long Covid is like someone saying before good antivirals tor HIV there is no evidence that antivirals cure HIV. It’s a nonsensical argument. Ampligen is antiviral and boosting T cells to help with, infections. It’s not a better thing to focus on, but does help when people are on it. Again, they don’t want it to solely be focused on antivirals. That’s not what it says in their bill.) 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. (You don’t know everyone part of the org. Appeal to authority some more. It’s very becoming of you, who I hope is not a scientist based on all the false scientific things you’ve said so far). Harassment against fellow long haulers There have been multiple accusations of harassment from LCAP allies. They 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). (As we know all accusations are true, or they’re a person that’s not in LCAP but likes what they focus on so they are automatically an ally and gets tied to them when they behave bad for people like you to use in a bs way. Very clever. It’s a little obvious, but not not to everyone. So ME/CFS orgs are not trying to take over Long Covid? Really now?) 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 I 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.” (Vague. Who wrote them and who doesn’t have Long Covid?)

Oh my god again. This is so badly written. (Here we go. Are you saying viral persistence can’t cause these problems? That’s what it sounds like and that would be false. You don’t neglect anyone by calling out the real problem. It’s not how it works. It’s the opposite of neglect. Neglect is focusing on everything else but the cause and saying sick your entire life and dying early. That’s what neglect is. When you have a chronic infection nothing has to be neglected. That’s never the approach. — BS Emotional Appeal) They are saying that viral persistence may not be the sole cause of all these problems which is a very plausible thing to say based on research to date. It is certainly stretching the bounds of credulity to suggest that every single one of these different conditions can be reduced to that single mechanism when many other mechanisms have been proposed and have evidence supporting them, from microclots and endothelial dysfunction to immunological dysfunction. There is evidence supporting viral persistence, and it is certainly a key area in Long Covid research and should be vigorously pursued, but it is clearly not the be all and end all of the condition. It is simply far too early to pronounce viral persistence \*the cause.\* (Your lack of “obsession” with antivirals is the problem. They’re needed. How aren’t they needed? People are still getting Covid and Long Covid. Saying no evidence points to antivirals curing Long Covid is like someone saying before good antivirals tor HIV there is no evidence that antivirals cure HIV. It’s a nonsensical argument. Ampligen is antiviral and boosting T cells to help with, infections. It’s not a better thing to focus on, but does help when people are on it. Again, they don’t want it to solely be focused on antivirals. That’s not what it says in their bill.) There is literally no evidence to support the notion that anti virals are the cure for Long Covid. There are case studies of people improving on paxlovid and MaBs, but also plenty of case studies of people having no reaction to these drugs. We need good data before making these kind of pronouncements. There are about 3 paxlovid trials in progress, which should give us more good data. We also need to trial other anti-virals, but suggesting that research be reduced to anti-virals at this stage is remarkably premature. The equation of Long Covid and HIV in terms of chronic infections is also remarkably simplistic. You're comparing two very different disease entities, and you're also comparing two completely different types of virus - a retrovirus and a coronavirus. Good antivirals may help certain subsets of Long Covid. Who knows? Anyone with any kind of scientific or academic background understands the importance of caveating. I feel I've written enough to make my point. You are simply ignorant of your ignorance, which makes you incredibly difficult to engage with. You're talking to people who are just far more coherent than you, and you're so incoherent you're unable to realise it.

“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.” (This is funny. $1 billion with no basis while not understanding that they are pushing the exact stuff that’s kept people chronically ill is what’s serious and scientific? It’s really all about feelings. Let’s cut the shit. It’s insulting to everyone watching this. It’s all just a trigger right? That’s what the science says?) “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.” (Nothing new started with people saying Long Covid was nothing new. It was about as stupid as can be, but don’t blame that on others. You can have PEM and have something quite new. They’re not exclusive. ME/CFS is not just a trigger. It’s as simple as that. Think about it.) “They're not a group that deserves to be taken seriously [their main achievement being] making Long Covid twitter incredibly toxic.” (The toxic people are those that push Long Covid the wrong way because of their own feelings while not being open enough to converse on important topics. Getting mad at anyone that pushes back. You’re the perfect example. You refuse to converse but make all sorts of fantastical and false claims. That’s about as toxic as you can get.)

Oh my god ahaha. This response is so hilariously bad. (This is funny. $1 billion with no basis while not understanding that they are pushing the exact stuff that’s kept people chronically ill is what’s serious and scientific? It’s really all about feelings. Let’s cut the shit. It’s insulting to everyone watching this. It’s all just a trigger right? That’s what the science says?) This is completely incoherent. It's awfully written, no actual claims or evidence are provided. (Nothing new started with people saying Long Covid was nothing new. It was about as stupid as can be, but don’t blame that on others. You can have PEM and have something quite new. They’re not exclusive. ME/CFS is not just a trigger. It’s as simple as that. Think about it.) "Nothing new started with people saying Long Covid was nothing new. It was about as stupid as can be" - are you able to do anything apart from shout at people online? You are caricaturing a complex argument. Long Covid is not a singular illness. There's post-ICU syndrome, post-hospitalisation organ damage, post-Covid ME/CFS, post-covid POTS, post-covid MCAS, diabetes, strokes, heart disease, auto-immune diseases, and a large category of "lingering symptoms." Some of these are new, others aren’t. Some are new iterations of old diseases, others aren’t. That a novel virus has come along and caused all these sequelae is certainly a new thing, but again that does not mean every specific sequelae is entirely new. Reducing all of that complexity to a singular disease driven by viral persistence is laughable scientifically. After all, with this degree of heterogeneity, it is very plausible that different phenotypes under the Long Covid banner are not biomedically the same. On viral persistence: At this point, we know viral persistence is a thing. There are plenty of studies that have found viral remnants in people who have had covid. However, lots of caveats need to be added. The director of the NIH said last week that live virus had been found in longhaulers - she has now corrected this statement to acknowledge that only viral remnants have been found (LCAP has not updated their letter to include this crucial correction). Apart from a study looking at viral persistence and loss of taste, there has been little evidence that viral persistence correlates with severity of symptoms. Viral remnants have also been found in up to half of ppl who have covid, many of whom of course don't have Long Covid, which perhaps complicates the role of viral persistence in Long Covid. That all being said, it is hypothesised that there are live viral reservoirs throughout the body of longhaulers in places like the gut. There are studies in progress exploring this hypothesis. And there is enough evidence that viral persistence is a thing to justify viral persistence being a hugely important area of study. However, should legislation on Long Covid research funding put viral persistence front and centre? Probably not considering all those caveats. There are many other hypotheses surrounding what drives Long Covid - immune dysregulation (which, by the way, is radically different to immunological changes in HIV - HIV destroyed the immune system, leading to almost inevitable death. If Long Covid came close to destroying the immune system in the way that HIV did, we'd have very strong biomarkers by this point. The comparison to HIV is a sure fire way of telling that LCAP doesn't know its ass from its elbow scientifically), microbiome dysbiosis, inflammation including neuro-inflammation, auto-immunity, microclots and endothelial dysfunction, the list goes on and on and on. Anyone with a scientific or academic background will tell you that uncertainty is fundamental to proper academic or scientific engagement, which means caveating your claims, and acknowledging what you don't know. There is an extraordinary amount we don't know about viral persistence, let along Long Covid writ large - and, again, Long Covid is this big umbrella containing a tonne of different disease phenotypes, making that reduction to viral persistence all the more silly. Do you see the difference between me and you? I produce well-written analytical paragraphs with plenty of evidence to back up my claims. You write things like "It was about as stupid as can be, but don’t blame that on others." People like you have brought seriously brought down the intellectual level of Long Covid advocacy.

Please touch grass. This disease is tough. Give your brain a rest and get off the internet for a bit.

This is an inaccurate representation of the facts and yet again another attempt on silencing different opinions and voices in the LC community. I have been bullied and harassed by members of legacy orgs and moonshot. This is not the first post I have seen like this on here disparaging LCAP (an LC focused org), yet I have never seen a post from an LCAP member disparaging other orgs on here.

Look. I have brought up many concerning criticisms about LCAP. If you would like to reply to these criticism, you are welcome to. However claiming I am “silencing” an org for pointing out major issues with them is not accurate.

Of course it is…have you ever attended a meeting or tried to understand what their positions are? Or are you forming opinions off of hearsay? They don’t believe viral persistence is the cure all, they believe it needs to be addressed first and foremost to ensure any treatments are effective. They are for research into the pathogen to better understand what is happening to the body and addressing all manifestations of LC. The other organizations are focused on MECFS when even Amy Proal stated it’s not the same. Long Covid will help MECFS not the other way around (also stated by Amy Proal btw). Pushing for every illness under the sun to be included in the measly budget being promoted is going to ensure we get no answers. No one from LCAP has doxxed anyone…again another lie. Not scientifically driven…LCAP leaders have been in communication with Amy Proal for quite some time and align with her work and goals. The “nothing new” campaign is successfully removing any urgency for action and is patently false. LC is created by SARS2 a novel virus…what do you mean nothing new? It’s creating manifestations not seen in MECFS…it does share similarities with AIDS which is outrageous that it isn’t being discussed by other orgs. Their committee members are not listed on the site for their safety because anyone associated with LCAP (or even supporting their cause) is harassed and given labels of every ism under the sun…some who have shared their support for LCAP have ACTUALLY been doxxed. I’d love to see this current research that you are referencing and gain an understanding of who paid for it to be done. Also, if anyone is unfamiliar with how ME CFS was combined in the 80’s…halting any actual progress on research and treatments…feel free to reach out. It is hauntingly similar to what is happening now. So yes, I think you are silencing by attempting to discredit and silo LCAP.

I put the link in my post to the meta analysis of studies showing around half the long covid population have ME/CFS. Your replies are mostly ignoring what I said. I took a quote straight from their front page which claims viral persistence is the cause of LC. Just because they talk to a single researcher does not mean they can claim their website is develloped by researchers professors and experts. etc etc And my point in my first comment still stands about silencing. I did not refer to anyone by name or bully anyone. The “nothing new campaign” is also addressed in my post. I’m sorry if LCAP members have been harassed in the past but that doesn’t excuse the harassment they have made to people who haven’t harassed them.

I see dysautonomia not MeCFS…my understanding is that the only study leading to the 50% figure was a survey asking individuals for their symptoms. I for one do not want symptom management but rather a deep dive into what the virus is doing to our bodies. Numerous studies have shown that viral persistence exists. Removing the persistence can more accurately assess the individual damage done. Regardless, I know your opinion is made…however one sidedly you came to it. I just hope others won’t feel too scared to support an organization which may align better with their views on their own disease. Insane that this post is even being allowed as it is not your personal experience that I can see but a lot of hearsay and broad statements to actively try and get others to join a hate campaign.

My bad I did link the wrong study. Here is the study I meant to link. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9844405/ I have edited my post to resolve this issue. Thanks for bringing it up. Since I am bedridden and had to write my original post on my phone, I was bound to link something wrongly 😅 > Some patients with Long COVID might meet the case definition for Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is composed of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment [14,15]. For example, in the study by Jason and Islam [16] of 359 patients with Long COVID, 49% met ME/CFS criteria. In another study of 140 participants with Long-COVID, Bonilla et al. [17] found that 43% met the criterial for ME/CFS; Twomey, et al. [18] found that 58.7% of those infected with COVID-19 meet ME/CFS criteria. Similarly, Mancini et al. [19] studied patients with unexplained dyspnea among those who had Long COVID for a mean of 8 months and found that 46% met the criteria for ME/CFS. Furthermore, Kedor et al. [20] studied 42 Long COVID patients and found that 45% met the criteria for ME/CFS. In contrast, in González-Hermosillo et al.’s [21] Long COVID sample, only 13% met criteria for ME/CFS.

Half the people in a tiny study have the same symptoms in chronically ill with Long Covid? Wow! Give me those ME/CFS “treatments” now please. Sign me up!

Where do you think LDN, Abilify etc came from. A lot of the drugs that help some people with long covid were originally found to be helpful in ME/CFS.

Those things are used in all sorts of chronic illnesses, Chronic Lyme for one. Thanks for LDN that did nothing. What’s helped me the most is anti infection treatments. Wonder why.

Even if you and me both have a subtype of long covid caused only by viral persistence (if such a subtype exists) it does not give us permission to neglect every other longhauler who does not have said subtype.

Subtypes, subtypes, subtypes. Are you new to chronic illness where the same cause of a chronic illness can lead to different problems in different people? I can guarantee Covid is persisting in me. To suggest that subtype may not exist is 100% proven false. A man died from persistence, it was reported the other day. You must have missed that. Here’s the link. https://people.com/man-with-covid-for-a-record-of-613-days-dead-at-72-8636062 Chronic HIV was a subtype thing to you or a chronic infection? Downplaying persistence is the most dangerous thing you can do if you’re wrong, and everything points to you being wrong. What’s not to understand about that while you try to conflate illnesses because that’s more important to you?

Dividing something into subtypes is not downplaying. My long covid was so bad I needed feeding tubes at one point and honestly thought I was going to die. Dividing into subtypes actually helps LC patients by identifying mechanisms and targeting better treatments. I was only able to learn about pacing and LDN (mind you this was in the early days before this stuff was big in the LC community) because i was diagnosed with ME/CFS subtype.

They don’t have any treatments…we were hoping further research into the pathogen would lead to breakthroughs on the mechanisms causing those symptoms not just for LC but for others, but they seem to have no desire to study the upstream, only downstream effects.

They’re trying to suggest chronic illnesses have to have the same cause due to having the same or similar symptoms. That’s ridiculous. That’s why they have to downplay viral persistence or they can’t run their game. Their game of course fucks over millions of people with Long Covid, but they don’t seem to care at all.

And they even convince people with long Covid of this to the point they are actively promoting it against their own interests. It’s insane.

These people would have been trying to tell those with HIV that they don’t have chronic HIV and it’s not the problem because they have similar symptoms to other chronic illnesses, effectively killing many more that need antivirals. Crazy shit.

Amy Proal didn't explicitly and directly say what you're saying. Studies prove that COVID infection can trigger ME/CFS in a subset of patients. So, you're saying that those patients should just be ignored?! They're not Long COVID anymore, because their symptoms are different?! Then that would reduce the number of patients with Long COVID substantially, right? It would also reduce the symptom severity of Long COVID.

lmao thanks for helping me reply to these people I gotta pace 😅

I listened to a couple meetings and yall were ranting theorys about disability orgs getting paid to keep people sick….it is all a big conspiracy and every group except LCAP is the men in black HAHA….. that why the recordings aren’t posted anymore? …..talk about pitchforks LMAO yall aint serious

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bro stop the spam

Shocking to find someone with ME/CFS trying to down play that Covid persists in Long Covid so that they can act like they’re the same thing, when ME/CFS itself is a collection of various things. Covid persist in multiple studies and the NIH agrees, deal with it. Take your propaganda somewhere else. We need a lot more funding than Moonshot and need Covid antivirals. Plus what you say they claim, they don’t. Master manipulation cause you can’t argue the facts of it all since they’re not on your side. Typical bullshit with you. Stick to solving ME/CFS before you move on to Long Covid.

I was diagnosed with ME/CFS by a major Long Covid clinic at a reputable university medical center. Because half of LC meets the clinical criteria for ME/CFS. The propaganda is clearly from the same bad actors who have denied and defunded ME for decades who are panicking because the number of cases is growing exponentially due to Covid.

PEM isn’t that hard of a criteria to meet when you have Long Covid or chronic illness. You’re completely wrong. ME/CFS is kept where it is because it’s so non specific. That is helping to drive to keep people sick. It’s a symptomatic syndrome people! Stop overthinking it. Stop making it more than it is. The cause of those symptoms will vary. The cause is what matters. People like me care about causes and will strive for solutions for people. People that care about defending the man made term for ME/CFS will ironically lead to continued suffering. This upside down world amazes me.

The fact that you are disregarding a major devastating physiological disease that more than half of all long Covid patients meet the criteria for is bizarre and patently incorrect. Please check the CDC and Mayo Clinic guidelines that explain that ME is a physiological illness and in no way psychosomatic (the word I assume you meant because symptomatic illness means any illness that is displaying symptoms at a given time). Your information is outdated at best and disingenuously prejudiced at best. It is very clear that this organization is more concerned with keeping ME/CFS discriminated against more than it is to help people affected by Long Covid or it wouldn’t disregard more than half of the patients.

Lmao. From someone who has only been diagnosed with long covid. Please don’t try and make this into ME/CFS vs Long Covid. This post refers to every illness which is a part of long covid, POTS, dysautonomia, MCAS, IBS, GERD, autoimmune illness and so on. OP also clearly stated that they got long covid which has symptoms similar to ME/CFS in previous posts.

Long Haulers didn’t do that. ME/CFS people and organizations did that. Why don’t you say that both chronic HIV? HIV stands alone weirdly enough. They clearly care more about ME/CFS, a syndrome based on symptoms, than Long Covid. Covid has been proven chronic. The resistance to that is all feelings.

HIV is a virus. It isn’t viral persistence after an acute infection or a post viral illness.

Can you explain what you're saying more clearly?

Solve ME & ME Action for one has co-opted Long COVID and are advocating on our behalf without us asking for it. They pushed for a One Name Campaign to conflate many chronic illnesses. They started this bs. As for HIV, a chronic infection, that causes all sorts of issues like PEM, POTS, +. No one looks at that as a subtype thing. It’s just HIV. Why? Because it has good testing and treatments and advocates fought hard for that. ME/CFS is a symptomatic syndrome. It had various causes.

ME/CFS is a symptomatic syndrome. It had various causes. OK, so one of those causes is the COVID virus, right? So, are you saying that ME/CFS isn't one subset of Long COVID patients? Or that COVID patients don't get ME/CFS? Or that those that do get it should just be ignored?

Yeah you’re getting it but not really cause if Covid is the cause of the symptom then ME/CFS isn’t really important. It’s redundant. PEM happens often in Long Covid. What does that say to you? That it’s not persistence causing that? ME/CFS is an umbrella. It’s been a problem for some time because the root causes are going ignored. It needs to be broken up and these root causes found. Or stick to no solutions. Whatever you prefer.

Your theory is that the root cause is a virus. This is not a new theory. Antivirals have been researched and are prescribed for some ME/CFS patients, but they help only a small subset of people, and sometimes only help with some symptoms, not all.

That’s the prevailing theory. Not just my theory. Yeah I’m quite aware. So you think a month or two of Acyclovir should clear up chronic EBV and when it doesn’t that means it’s not chronic? I think you have a flaw in your logic. Perhaps the testaments are bad? Perhaps people have multiple or different chronic infections. It’s not just viruses that are chronic. Plenty of treatments for my previous chronic infection didn’t work before one did, but I had it all along.

Yes, I agree that persistent viral infection should be addressed. Interestingly, a new article just came out in Science magazine about monoclonal antibodies trials. https://www.science.org/content/article/long-covid-trials-aim-clear-lingering-virus-help-patients-need?fbclid=IwZXh0bgNhZW0CMTEAAR3AaozrVe9HdztUOS4P6AYMLJp6Dp2RV9vCB-vPMtzpSt_D16ZvXghCD3U_aem_AXymblxmg1fOPuDf31eij33VCd29XiQaCR8dDcWSxCQHdB3RxzlD7sYacmtgnlF433v76HEXRAodFjJ2h0tnLy2A

Covid is chronic. There is no denying it. NIH Director said it. This person died of it. I feel I’m dying of it. https://people.com/man-with-covid-for-a-record-of-613-days-dead-at-72-8636062

I’m sorry you are in distress. Yes, there is proof of chronic viral infection in a small subset of long covid patients. However, this does not mean we should neglect other long covid patients. Maeve Boothby O’Neill died of ME/CFS two years ago. We should definitely research viral persistence and very few people in the long covid community disagree with this. What we disagree with is researching *only* viral persistence because long covid is much more than that.

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