Covid-19 vaccines and vaccinations

Thank you very much for this @Snow Leopard.

It's all quite confusing for me as a non scientist.

 

@Jonathan Edwards A family member (not ME) was supposed to take the vaccine shortly, but her appointment has now been re-scheduled to May (6 months after last Rituxumax). I understand the concern of immunosuppressant giving lower protection, but would not even a low percentage extra protection increase the chance of survival if infected before May? I’m thinking maybe Pfizer now and Oxford in a few months (my country has bought enough for some groups to take more than one vaccine) would be relevant?

This document also mention other immunosuppressants that are taken daily. Do you know if any other patients groups on Immunosuppressant will have to prepare themselves for disappointment?

https://www.sps.nhs.uk/articles/using-covid-19-vaccines-in-patient-taking-immunosuppressive-medicines/

 

a bunch of questions that might or might not be relevant. idk if any can be answered, but it seems worth starting a list.

apologies for fog and lack of brevity. anybody is welcome to summarize or make several posts if desired.


it seems that at least some vaccines can make m.e. worse. do we have science on this? are some worse than others?

do we know what makes a vaccine worse than others for pwme? do we have better than anecdotal data?

do we know whether pfizer, moderna, etc. are similar to the vaccines that can disproportionately worsen m.e., assuming this is the case?


can we answer this question? is it dumb/groundless logic?

1] the disease the vaccine protects against can possibly disproportionately cause m.e. [lc]. presumably it can worsen m.e.

2] viral vaccines, and possibly the body's response to them, are similar [at least in some epitope] to the viruses they protect against [that being the principle behind vaccination]

3] could that similarity disproportionately worsen m.e.?


many pwme are vulnerable to insults to the body, which then worsen m.e. is the insult to the body of the vaccines that are thought to trigger or worsen m.e. [e.g. hep b] known to be worse than from safer vaccines?

can this be measured or established for the vaccines that we are discussing? please note that some pwme are harmed by colds and flu [some improved too at least by colds].


some pwme seem to have very high inflammatory cytokines. some literature [i have not looked into it] seems to suggest that this, or related factors, could increase cytokine storm and fatality in sars2.

thus, if true, some pwme could be especially vulnerable to sars2. could that also apply to any possible worsening from the vaccine?


m.e. can have enormous numbers of comorbidities or sequelae [autoimmune, allergy, vascular, neuro, primary immune, autonomic, hormonal, etc.]. can it be seen as /predisposing/ for them? if so, then does a pwme face risk from vaccination over and above the risk from having m.e. itself and over and above the risk from having those diseases themselves, because predisposed to those diseases?


finally, it seems not completely unreasonable to speculate that the incentive is high to cut corners or misreport or withhold efficacy or harms data. m.e.'s historical experience with the medical industry suggests that such corner cutting etc. could be strong when it comes to vulnerable or despised groups like lc and m.e. (e.g. "they don't count because they are pond life" or "we have skeletons in the closet we have to keep in the closet").

some pressures include 1) profit motive 2) political pressure 3) pressures related to public health and medical nsystems. what has been done to mitigate these pressures on science?

triage rules have been changed via emergency bills due to the third type of pressure in some jurisdictions (including mine). for example, if i get the virus i suspect i will likely be triaged out and be left to die. this possibly applies to a lot of pwme. can we be reasonably assured that decisions have not been made behind closed doors to e.g. not release data that could be relevant to pwme for fear that it could affect vaccine takeup or for some other purpose?


of course, it might still make perfect sense to vaccinate after balancing risk with reward -- i'd sure like to get vaccinated if i can get answers. but i ask these questions in case they contribute to different pwme's decisions.


i hope pwme who get vaccinated will be monitored for worsening -- globally -- and those normals who get vaccinated get monitored for development of m.e.

 

I know we all may react differently, but, for what it's worth, I want to share that I had the first shot (jab for you Brits) of the Moderna vaccine on Jan 6. I have to say I was a little afraid as I do not do well with many medications and supplements. Even changing the brands of something can send my body into turmoil. Because of this I am very hesitant to try new medications or change current ones. It almost never works out well and can set me back for quite some time. For this reason I have never opted to get any flu vaccine. But, facing this COVID pandemic, I opted to receive the Moderna vaccine. I was so surprised to find that I experienced no negative side effects whatsoever. Nothing, nada. No fatigue, headache, nausea, fever, muscle aches. Nothing. The only thing I experienced was that shortly after getting the shot, I could taste something of its ingredients as it circulated through my body. It was quite strong and lasted for many hours gradually diminishing by the next day. It was not unpleasant, just something I had never experienced before. Even any soreness at the injection site was very minimal, and that was it. There was no worsening of my ME. I am scheduled to get the second injection on Feb 3. It remains to be seen whether or not the same will hold true after that one.

From reading the discussion it seems as though it may be a little more complicated in the UK with your having a few other vaccines besides the Moderna. I wish you well with whatever decisions you end of making. And I sincerely hope that if you do go ahead getting vaccinated, that you will have a good outcome as well. Take care, everyone.

 

Hilda Bastian has noted that many of the reported acute side effects (soreness, fever etc) follow the second dose, rather than the first dose. There may be an age effect as well (younger people more prone to fevers).

But I'm glad the side effects have been minimal and anecdotally, I've seen many people also report minimal side effects after the second dose (of any of the vaccines so far approved).

 

Samuel, the problem is that most of your questions have no answers because there is not enough known about ME. The differences in people with ME means it is likely that something is broken in ME which can cause random problems through many systems so there may never be a single answer.

The main reason the vaccines have been made so quickly is that the red tape was reduced and money was available. The results may be hyped, or at least the best possible interpretation put on them, but it is not in the interests of the companies for them to have a lot of side effects as it would become apparent quickly with so many doses being given. The virus will be with us forever and booster shots will be needed so the companies will be wanting a long term product.

One doctor said that the good vaccines do can't be seen because it prevents something but the side effects are apparent even if they are very rare. Many people with ME get vaccines with no problem at all.

For myself, I weigh up the consequences I have had with flu in the past, the risk of getting the virus, then risks of covid for everyone against the problems of physically getting the virus and the risk of consequences of getting the virus.

It is always going to be a gamble where either you win, no problem or lose. If it helps, I think most people who have a bad reaction to a vaccine find it leads to a relapse rather than a permanent deterioration.

One of the links to advice from US doctors gives ways to prepare for vaccination that is useful. I think it is on Health Rising.

It is all just another that ME makes life so hard for us.

 

Those aren't actually side-effects, rather it is the immune system reacting to the vaccine. A friend who is a nurse said that you actually want to get a reaction to the vaccine as it shows that your immune system is reacting to the vaccine. It's the people who don't get a reaction that it is questionable whether or not the vaccine is working for them.

 

Thank you @Snow Leopard for your thoughts on this. I'm surprised that the optimum timing for a second dose of vaccine isn't something that has already been well established with previous vaccines. Is this because the optimum timing varies depending on the type of vaccine and there is therefore uncertainty with the new vaccine technologies?

 

My understanding is that it depends on the type of vaccine. For instance the flu vaccine is a one time shot (each year), however, with covid-19 the vaccine works better in divided doses. They are still trying to determine how long to wait in between doses. You have to remember that everything has been done in a very short period of time for this vacccine. Normally a new vaccine takes in the neighbourhood of 10 years before it sees the light of day and by then they have the timing worked out.

 

I'm told that a batch of health professionals who recently received their second Pfizer dose largely found they ran a fairly high fever for 24 hours, after which all symptoms ceased. It was wondered whether they'd previously been infected without realising it.

 

High fevers, headaches, arm pain at the injection site that last for an hour up to about 24 hours are apparently all signs that the vaccine is triggering the immune system. The second dose reaction is supposedly more pronounced than the first injection.

 

In infants, the optimum timing of boosters depends on a trade-off between the effectiveness, given the immune system is still developing and the risk of exposure to the infection.

In adults, additional boosters nearly always increases antibody titre, however the optimum timing depends on when (on average) an individual will actually need to boost that titre. Note that this is mostly more of the same, namely clonal expansion of memory B-cells, rather than development of new B-cell linages.

The purpose of the ~3 week second dose isn't exactly as a booster, since it can provide more antigen and allow for another round of refining the quality of the B-cell receptors in germinal centres in the lymph.

The viral vector vaccines have a problem in that after ~3 weeks, there is a strong immune response directed against the vector itself, so that the vector can't infect cells and produce the antigen (spike protein in this case) required to produce the desired immune response. The process is also less efficient, because the immune system is spending energy in creating antibodies against the vector, rather than the spike protein.

Waiting 12+ weeks means the initial high titre of highly reactive IgM antibodies directed against the vector is diminished and the vector has a bit more chance of actually producing spike proteins. It's effectiveness will still be diminished by the immune response directed against the vector, but if you have high enough dose, then some of the vectors will still manage to do their job.

 

That isn't necessarily true. Vaccines for many (but not all) other diseases are effective without causing fever, or significant inflammation at the injection site.

The high rate of acute side effects after COVID vaccines is due to the high dosages used, in comparison to other types of vaccines.

 

I'm basing this on what a friend who is a hospital RN told me. I also read an article a few weeks back that basically said the same thing. Some vaccines affect the immune system by provoking a reaction. Others vaccines don't do that.

 

All vaccines provoke an immune reaction (else they do not work), but that doesn't necessarily lead to significant symptoms.

 

Norway cautions against the frail getting vaccinated
https://www.bloomberg.com/news/arti...atKz_S_L0atYO34Bif4v7iFyFjluSTdLcxCpI2YTN6Ot8

https://legemiddelverket.no/english...pected-adverse-reactions-of-covid-19-vaccines

https://legemiddelverket.no/nyheter...d-with-deaths-in-elderly-people-who-are-frail

 

I’m getting it as soon as I can. ATM I’m pregnant and not eligible, but by the time they get to my age/risk group I should be at least 2 months post birth and they do recommend it for women who are breastfeeding. By that time I’m sure we’ll also know more.

I get the flu shot every year and made sure to update all the childhood vaccines before i got pregnant and I have never had any issues beyond what can be expected (sore arm, etc.)

For this reason I think I should contribute by getting vaccinated to help protect those who can’t risk it, as well as to reduce the risk to my own health. With a newborn, even if they generally seem to tolerate COVID well, I would also feel more comfortable knowing he would have some protection through me.

 

Which vaccine will you get @andypants ? Is there a choice in Norway and what determines which one you may be offered?

 

I don’t think there will be a choice but who knows by that time maybe there will be. Right now it’s mostly Pfizer, but as far as I know the first Moderna batch just arrived and there are others lined up I think.

 

Carers added to Group 6 (England) for priority vaccination:

https://www.justintomlinson.com/news/article/unpaid-carers-included-priorty-list-covid-vaccine