Some people are reporting worsening. (though this still doesn't imply anything specific about the pathology) https://twitter.com/user/status/1386304648869416963
Moved post A rather unhelpful piece from the Guardian today https://www.theguardian.com/society...-symptoms-ease-after-vaccination-survey-finds suggesting that vaccination helps LongCovid on the basis of a questionnaire survey. David Strain seems to be involved. I cannot see how this is likely to be meaningful information. Some dubious immunology is also quoted.
Some of the researcher comments weren't bad, but I agree it should be emphasised that such surveys are always of low-quality and not generalisable.
At the very least this would set a requirement that any explanation for Long Covid would have to account for why a small subset have their symptoms improve after a vaccine, which obviously excludes any of the BPS nonsense. Which sets the stage within the immune system. This also makes it a requirement to explain brain fog, which in some cases the vaccine made go away, and completely contradicts the widespread belief in "brain wiring" and "neuroplasticity" and all that voodoo, which obviously can't happen suddenly. Except who am I kidding facts don't matter here and nearly everything is made up, I actually saw this being "BPSplained" as basically the vaccine making the underlying worry go away. Which is obviously insane but, again, facts don't matter and evidence is entirely irrelevant in evidence-based medicine. Of course still zero discussion that in many cases the symptoms worsened or even come back. That inconvenient truth is dismissed because magical lies are apparently fair game in medicine, a desirable thing in itself. The systemic bungling of LC has really not helped lower my cynicism... but dammit do they keep proving it right without fail.
A new discussion thread has been created for discussion of worsening following vaccination: Experience of worsening following vaccination - discussion thread
Merged thread I want to see a study on vaccination as an ME treatment Let's pretend to be scientists. A subset of pwME (including myself) or LC have anecdotes of positive vaccine side effects. We could recruit only "responders" who've felt better after routine vaccination. Non-responders and people who get crashes from vaccines would obviously be excluded. I'd use IOM as the ME criteria. We'd do a blinded trial with actimetry and SF-36 as primary outcome measures. A purpose-built PEM-focused scale would be ideal but this doesn't exist yet. We'd make it accessible for most severity levels. Perhaps the initial visit could be telehealth and the shots could be given at home if requested. I'd like to see the trial done in an area with few other opportunities to participate in ME research, as not living near specialists/researchers has always frustrated me. If it works, it would drive further research by strongly implicating the immune system. Anecdotally, vaccination is the only thing that's ever influenced my PEM. The effect is significant (e.g. having PEM for 24 instead of 48+ hours after the same activity) repeatable, and not specific to one vaccine.
Good idea, have another vaccination coming up. Have done some basic clinical research for my college fellowship, and after, used evidenced-based medicine for practice I think we would expend a lot of time and energy on creating a reliable PEM questionnaire that pleases everyone. Perhaps take a vote on one used in research for PEM in ME currently e.g. DePauls
Good idea! Would be great to have that effect from vaccinations. An EBV vaccination is being worked on, i believe. I'd get in line for that. None of my 5 COVID shots have had that effect.
I have a Master's degree in medical science, although my understanding has deteriorated considerably in the last few years. But my first thought is that excluding non-responders wouldn't be very scientific.
From a recent review on LC: The impact of vaccination on long COVID symptoms in people who had already developed long COVID differs among patients, with 16.7% of patients experiencing a relief of symptoms, 21.4% experiencing a worsening of symptoms and the remainder experiencing unchanged symptoms180: [180] Tsuchida, T. et al. Relationship between changes in symptoms and antibody titers after a single vaccination in patients with Long COVID. J. Med. Virol. 94, 3416–3420 (2022). https://onlinelibrary.wiley.com/doi/abs/10.1002/jmv.27689
Since we are in a new thread, no, in my lifetime (say 20-30 years), I do not think vaccines will “cure” ME/CFS or LC as a lot of damage has likely to have already be done and I will not get that back with a vaccine and it’s “stimulation” or cancellation of viral effects or whatever is happening in the the immune system. Very interested in knowing what determines different vaccination effects in individuals with ME and additional co-morbidities or associated illnesses.
I'm like you, DokaGirl. None of my 5 vaccines (or Evusheld injections, though I don't understand the prophylactic monoclonal antibodies mechanism well enough to know how that compares with the vaccines) have helped or worsened my ME symptoms.
I don't have any such degree so am ignorant about all of this, but I was wondering that about excluding non-responders also.
Merged thread Can the Japanese Encephalitis Vaccine Reduce Symptoms of Long COVID? Blog by LC patient on Cort’s site. https://www.healthrising.org/blog/2023/03/17/japanese-encephalitis-vaccine-long-covid/
Great that the author of the Blog has had such a positive recovery: However, this is illustrative of the problems generalising from just one case. Anecdotally with ME we see enormous variation in responses to novel infections and in responses to vaccinations. We desperately need more understanding of the behaviour of people with ME and Long COVID’s immune systems in a range of situations, but I won’t be rushing out for a Japanese Encephalitis vaccine without proper research.
It seems that 'trained immunity' was invented after I retired - in 2011 - by some people working in a company called Trained Therapeutix. The Wikipedia entry does not fill me with any enthusiasm.
again, how long had he been ill? cant have been more than 2-3yrs, this could easily have been a coincidental timing & actually be simple natural recovery surely? Crikey can you imagine it... 2 injections & we all recover, its the stuff of my fantasies, but like Peter i wont be rushing out to get it without some serious research, especially given how horribly ill covid/flu vaccines make me for a couple of wks or so.
