I thought this was an interesting story. Various ideas are floated for why some long-Covid patients improve following post acute illness vaccination with Covid-19 vaccine. Could be coincidence, or some kind of placebo effect, of course. Some explanations are proposed, such as the possibility of a viral reservoir or viral fragments that the immune system is continuing to react to. https://www.usnews.com/news/health-.../can-a-covid-vaccine-help-long-haul-sufferers
I have little clue about immunology but here are some links to save time. InvestinME posted the Medium article of their FB page a couple of days ago. Specific mention of MECFS at the end. https://elemental.medium.com/how-vaccines-might-improve-long-covid-c1f41c4d7378 https://www.dailymail.co.uk/news/ar...ng-Covid-patients-beat-crippling-fatigue.html "Experts say this could be because the jabs 'reset' the immune system, or due to a 'psychological boost' from receiving the shots" https://www.medpagetoday.com/special-reports/exclusives/91476 "One week after their first dose, 9% of patients said their long COVID symptoms had improved, and by 2 weeks, 16% said their symptoms were much better. Among all people who had their vaccine 2 weeks ago or longer, 27% said their long COVID symptoms are slightly better, while just 14% said their symptoms were slightly worse. About 5% felt completely back to normal and only 3.8% felt much worse than previously." https://www.nature.com/articles/s41577-021-00504-3 Mrna vaccine shows promise in autoimmunity
Yes, I wonder if this is a temporary thing (the same way some people with ME/CFS report feeling better during pregnancy / after getting covid / etc) or what. I also wonder if this would work on people whose ME/CFS started with other infectious triggers after getting vaccines for those specific viruses. There's no such thing for EBV but some people's illness was triggered by certain influenza strains for example. And maybe this is why an antiviral seemed to lessen the symptoms for certain herpesvirus-triggered ME/CFS patients? (I remember there was a study about that somewhere, maybe not even one.)
FWIW, my ME often improves a bit after vaccines. It was especially noticeable after the Covid one. Cognitive function, which in my case is more impaired than physical function, improves so drastically that other people comment on my sudden ability to come out with witty ripostes. I'm usually struggling so much that I often don't notice when someone else makes a joke, reading what they've said at face value instead. The effect's short-lived, though, never more than a few days. It's similar to the additional energy I get prior to developing the symptoms of a cold.
When I get an actual virus I often feel significantly better ME-wise in the first day or two usually before the actual virus symptoms start. I've always thought it was because my immune system was too busy fighting the actual bug to bother attacking me but, obviously, I have no evidence to back that up and I don't know if it makes any scientific sense at all! (I know personifying the immune system and attributing busy-ness and bother to it is not very technical!) But maybe it's a similar process that's happening when people get the vaccine?
My ME onset was initially associated with the EBV virus, but after a number of years was in apparent remission. However a major relapse was associated with a bad dose of influenza over the millennium New Year, which with some fluctuations has left me moderately to severely effected since. I used to have the annual flu jab, but this resulted in a three week worsening of my ME symptoms, so after several years I stopped having it and rather just sought to avoid possible sources of infection during the flu season. Interestingly the few vaccines I have had relating to travel had no impact (can’t now remember what I have had other than I did not have any malaria jabs because of possible side effects). I had the first injection of the Covid AstraZeneca vaccine a few weeks ago which was associated with a very marked worsening of all my symptoms lasting just three days. My reaction to this jab was worse than I expected, but shorter lived. However given it was the first time I had left the house in over six months I can not rule out PEM being a contributing factor.
I have never read anything that convinced me the placebo effect exists but an assault on the body like making a hole and removing blood could induce repair systems that help with ME in the passing. There is also an effect, which I think of as adrenalin induced but may be caused by something else, that lets me do more than usual. On the journey home when I have managed to visit my grandchildren I sit in the car thinking about all the things I can do then I remember that it always happens but the effect soon wears off and I ma worse for a few days rather than better. It is fun while it lasts though
@Mithriel That small adrenaline dose does give a temporary rush and boost of energy. I feel the same way after a hair cut, it's like all that extra 'weight' was removed.
Seems similar to how some pwME have their symptoms improve when they have a cold. Evidence would point towards the innate immune system, nothing specific about any pathogen, or even lack thereof.
Given that some people with Long Covid are improving following the vaccination injection and others are not, are we seeing a similar pattern of variation between individuals to that we see in ME?
I am reluctant to put my recent downturn in symptoms to the vaccine. It's hard to believe, as I had a mild case of Covid in Dec followed by only a day of feeling unwell with the vaccine just over 2 weeks ago. I could understand it if I had been really unwell with both in the shorter term. My energy levels post Covid (along with other symptoms mostly gone) have been poor, and I stupidly pushed myself 6 weeks after as I was recovering and feeling better, and did too much one day which took days to get over. Now I am struggling badly again post vaccine and feel brainfoggy and fatigued almost continually. I am not used to feeling this bad so it's hard to take on board. Is one allowed to call it Long Covid I wonder if you also have ME/CFS or will people just assume it's the same thing? The name doesn't really matter to me, but will I get to go to the new shiny LC clinic? I think I am just about at 12 weeks post Covid now.
Twitter polls of longcovid patients suggest most are not improving after the vaccine. Still, if there is genuine improvement in a minority, it does suggest immune system involvement in the perpetuation of the illness.
