Can vaccines cure ME/CFS or Long Covid?

Some posts on this thread have been moved from the vaccination experiences thread and the long covid thread. Note also there is a separate thread here for discussing the science of the vaccines.

We've also retitled the thread to broaden its scope from just Covid vaccinations.

https://www.timesofisrael.com/some-long-haul-covid-patients-say-vaccine-helped-alleviate-symptoms/

 

Long-COVID nurse whose symptoms improved after Pfizer vaccine. I've been hearing these testimonials quite a bit lately.

 

BBC: Health Check: Could vaccines help cure long Covid? (3:25m)

BBC: Health Check: Do vaccines cure Long Covid? (0:24-7:25m; in the whole episode)

The New York infectious disease doctor's anecdote is that he and his colleagues are seeing a third to a half of LC patients reporting alleviation of symptoms within two weeks of receiving a vaccine. And Professor Lord reports that they are hearing of it too, but "it doesn't seem to be a really common thing as far as we can find out". She reports that one hypothesis is that perhaps it "perks the immune system up again". She, however, favours the view that it "resets the immune system" by initially stimulating it but then the pro-inflammatory systems are "settled down". If the pro-inflammatory systems are over-active, they could make you "tired" or "a little depressed".

Better than "rebooting", I suppose. But still not a thing, so far as they can demonstrate; except that it does seem to have become a media thing. And they are to add a question about it to their questionaire at Birmingham.

Edit: Corrected H.C. item title and added link to the longer edit of the item in the whole episode.

 

Given that many cases of post-viral illness seem to resolve naturally over time, it's possible that there will be recoveries that coincide with receiving the vaccine. They should do a proper controlled, blinded trial rather than hyping this up in the media.

To add another anecdote, I've been watching LongCovid forums for ages and most are saying that their LC symptoms temporarily worsen after the vaccine. I've yet to see one report of recovery.

 

There was an article yesterday in The Atlantic also titled: Long-Haulers Are Pushing the Limits of COVID-19 Vaccines. Haven't been able to read it yet, but the author, Katherine J. Wu, PhD, wrote the following summary of the article on twitter. (Tweet nr. 5 really worries me)

 

Yep, had a phone chat with my elderly neighbour yesterday. Her daughter and son in law were quite badly affected by covid but not quite ill enough to be hospitalised.

It took them a few months to get over it. The vaccine made them feel like they'd contracted the virus again. They had a miserable couple of days and then their symptoms disappeared again.

 

Another ad for the vaccine cure, this one from Will Stone at "All Things Considered":

NPR: ATC: 'Long-Haulers' Are Finding Relief After Getting Their COVID-19 Vaccine (4:01m)

It has a compelling anecdote from a woman who was cured only after only reluctantly getting the second injection, after having a bad reaction to the first. But a nurse told her that they were seeing some people who feel better after the second one:

And they had an immunologist using the word "cure". Two explanations are proffered:

But, being NPR, they know how to cover themselves. Mileage may vary:

Apparently, with LC, anecdote is allowed to become science almost immediately, because they are "desperate".
Whereas with ME/CFS, science has been dismissed as anecdote for decades. Because it wasn't the right sort of people who were desperate?

 

This touting of LC patients improving from the vaccine is deeply irresponsible considering many seriously deteriorate and how often it is short-lived, nobody is even following up yet.

This is blatant cherry-picking of the same type as using the passage of time and natural recovery to tout CBT/GET or healing crystals or whatever BS treatment. Sure, in some cases there seems to be notable improvement, but only reporting improvements is massively misleading, regardless of the "greater good" of not giving ammunition to vaccine deniers.

It's super interesting from a research perspective but using it this way to give false hope is reckless. I am endlessly amazed and disgusted at how irresponsible some people in medicine are. Present both, tell the damn truth as it plainly is and stop interpreting everything to carve a narrative, dammit. This is people's lives, not pawns on a chess board.

 

NPR Mysterious Ailment, Mysterious Relief: Vaccines Help Some COVID Long-Haulers (March 31)

Quotes:

There are several leading theories for why vaccines could alleviate the symptoms of long COVID: It's possible the vaccine clears up leftover virus or fragments, interrupts a damaging autoimmune response, or in some other way "resets" the immune system.

...

This self-destructive immune response happens in a subset of COVID-19 patients while they are ill, and the autoantibodies produced can circulate for months later. But it's not yet clear how that may contribute to long COVID, says John Wherry, director of the Institute for Immunology at the University of Pennsylvania.

Another theory is that the infection has "miswired" the immune system in some other way and caused chronic inflammation, perhaps like chronic fatigue syndrome, Wherry says. In that scenario, the vaccination might somehow "reset" the immune system.

 

In other words, they don't have a clue.

Despite all the media hype, the vaccines don't seem to have much effect for most LongCovid recipients. I'd argue that most of the anecdotal remissions are due to natural recovery (regression to the mean) and in those few that have a chronic SARS-CoV-2 infection, the vaccine may help.

 

Apologies, I cannot locate a non-commercialized article at the moment.

Tonight I heard on CBC Radio (unable to find article) that about 40% of COVID Long Haulers are improving after getting COVID vaccinations.

Researchers' explanations are that it's possible the virus was still lurking in the body, and the vaccinations have boosted a more robust immune response to the COVID virus.

This is very interesting. And, something that was thought to be going on with ME, but was dismissed very early on by the NIH.

Promising for pwlongCOVID.

Perhaps examination of this phenomenon will assist pwME.

I will keep looking for a non-commercialized article.

If anyone can locate a non-cluttered article re this, that would be very helpful, and appreciated.

Thank you very much for your comments.

 

It opens possibilities but without a controlled trial we need a robust finding to be sure. Still requires a trial, and strong results. The comparison group would probably be a matched not vaccinated group of recovered covid patients. Not sure if that might be unethical though, as they deserve to be vaccinated anyway if medical advice is to do so. So this is more a message of hope than robust evidence.

ETA This was in response to a comment in another thread on vaccination of long Covid patients.

 

All of these claims in the media are speculation, rather than being based on published studies. The one published study showed a fairly weak response and had limited sample size (66 participants).
People want to believe there is a simple and easy solution, but reality is usually more complicated.
Many of the anecdotal recoveries are probably natural remissions and might not have any greater association with the vaccine, than claims of recovery to longCOVID from becoming more active/exercise.

 

Yes, @Snow Leopard that is the frustration with this info - it's anecdotal, not unlike what some BPSers are holding up as an important anecdote/case study that supposedly supports their theory of CBT/GET as a cure.

I'm hoping good research could come from the reports of COVID vaccines improving long COVID symptoms, but as you say, these could be just spontaneous recoveries etc.

 

I'm seeing some push back from long haulers over the wild claims. The improvements seem to be short-lived for most and many journalists are explicitly seeking out only people who improved, not interested in knowing the denominator. Sadly, the same with the few physicians amplifying those claims, they focus exclusively on improvements, ignoring the whole picture.

To be clear it's obvious that some people do have significant improvement, but the claims of a cure are seriously misleading. Some people have reported one or a few symptoms disappearing, with no change to others, hardly a cure. Some do report just that, a full recovery, or at least remission, but with explicit efforts to ignore the denominator it's impossible to tell how common or rare it is.

Because those claims of the vaccine curing Long Covid are spreading so fast they have traveled the world many times already. It's all over the place.

 

https://twitter.com/user/status/1384385605644296193


Also one of the replies, this is the WSJ reporter who wrote many of the good articles on LC, in blatant opposition to the editorial side that featured Dr Mass Hysteria:

https://twitter.com/user/status/1384490814018146307


For some balance, one of the larger communities, I think it's Survivor Corps, reported significant rates of improvement of some symptoms. So sampling may be a factor, patients still being seen in a LC clinic may by simple definition be more impaired, or feature whatever circumstances perpetuate the illness, or maybe it's just natural wax-and-wane that happens to be caught by some polls.

So reports are pretty much all over the place, ranging from little to no improvement all the way to something like 1/3. Rigorous research is very needed, fortunately it seems to be but hard to say whether toxic positivity will try to tip the scales.

 

Moved post

'I feel alive': COVID-19 long haulers report recovery after receiving vaccine
https://www.kshb.com/news/local-new...ulers-report-recovery-after-receiving-vaccine

 

Uplifting to see this twitter thread from prof. Akiko Iwasaki on them launching research into understanding how vaccination may help improve Long Covid, particularly the last tweet where she says:

Ultimately, our hope is to learn about the underlying disease pathogenesis, sex differences in immunity and vaccine responses. Our dream is to come up with rational treatment approaches for #longCOVID and other post-acute viral syndromes #MECFS. Please spread the word

 

'Vax-induced antibodies can eliminate the viral reservoir, and/or vax can reprogram autoreactive lymphocytes.'

This doesn't look good immunology to me. I cannot see any reason why vaccine should eliminate viral reservoir through immune response if virus does not generate the immune response. I do not know of an example of immunity working like that with a virus. And reprogramming auto reactive lymphocytes does not mean anything. Autoreactive lymphocytes need to be got rid of if they are there and the chances that they are are pretty much zero. Moreover, vaccination would be expected to expand auto reactive lymphocytes if they are cross-reacting to virus. It would be a bit like deliberately giving a second dose of dengue and making hypersensitivity much worse.

The fact that there are no reports of vaccination making Long Covid worse is a pretty good indication that Long Covid is not a problem with an antigen-specific immune response. A persistent innate signalling mechanism seems much more likely anyway, given that similar post-infective illness seems to occur with lots of different agents.

It all sounds terribly helpful and keen but sadly an awful lot of 'immunologists' really don't know what they are about.

 

That's because no one wants to know. There are plenty, I have seen way too many to count. Fewer than there are improvements, but many deteriorate soon and others improve, then deteriorate significantly, sometimes from the first shot, sometimes the 2nd.

Same issue with no reports of harm from GET in ME: no one wants to know so no one's counting. But there are many out there, impossible to say without an actual count. That's toxic positivity for you. In accounting we call that fraud. In medicine, it's just being hopeful, I guess.