Covid-19 vaccination experiences

You + ME surveyed 208 ME patients regarding the vaccine. 15% said they are "somewhat worse" or "significantly worse". Nova Southeastern also expressed that Dr. Klimas is aware something has gone amiss in a subset of patients, and would be "making a statement soon". Not sure what that entails exactly, but wanted to share.

Vaccine setbacks were also discussed on a Long COVID Alliance call last week. If I interpreted correctly, it's on the NIH's radar that not only a subset of ME patients are inadvertently suffering vaccine injuries, but also those who were previously healthy. This isn't a minor deal. The individual on the call said "I can't provide specifics because of contractual obligations, but there are at least 40,000 enrolled in a NIH study who have suffered severe health consequences following these new vaccines." From what I gathered, this is unlike any vaccination rollout or development they've seen in regard to the sheer number of adverse reactions.

It's become a difficult topic to discuss, because of so much pro vs. anti nature - but it's just an open discussion that something seriously has gone wrong for many. They should be heard. I hope those conversations can be made publicly without fear.
 
Dakota15 said:
You + ME surveyed 208 ME patients regarding the vaccine. 15% said they are "somewhat worse" or "significantly worse". Nova Southeastern also expressed that Dr. Klimas is aware something has gone amiss in a subset of patients, and would be "making a statement soon". Not sure what that entails exactly, but wanted to share.

Vaccine setbacks were also discussed on a Long COVID Alliance call last week. If I interpreted correctly, it's on the NIH's radar that not only a subset of ME patients are inadvertently suffering vaccine injuries, but also those who were previously healthy. This isn't a minor deal. The individual on the call said "I can't provide specifics because of contractual obligations, but there are at least 40,000 enrolled in a NIH study who have suffered severe health consequences following these new vaccines." From what I gathered, this is unlike any vaccination rollout or development they've seen in regard to the sheer number of adverse reactions.

It's become a difficult topic to discuss, because of so much pro vs. anti nature - but it's just an open discussion that something seriously has gone wrong for many. They should be heard. I hope those conversations can be made publicly without fear.
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Thank you so much for sharing. Do you have a link for the You + ME data, please?
 
ringding said:
My only suggestion is to be patient. I was really ill for the first 36hrs after my 2nd Moderna (no real side effects after the first), had a fever, a lot of muscle aches and was very weak. Most of it went away after 36hrs, although over a week later I'm definitely not back to my normal baseline regarding stamina (as far as that ever goes!).

I think, like with any worsening of symptoms, there's that worry of whether it will improve again, which is completely understandable! I was a bit nervous with it. Hopefully her experience will be similar or better than mine.
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Quoting myself just to add that I had the results of my antibody test this evening and have very high levels. Very pleased as it was low after one shot. Took about 3wks to get back to my normal baseline after vaccine, so on balance, for me, it was worthwhile.
 
@Brian Vastag has tweeted, retweeted by @dave30th



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Brian Vastag
@brianvastag
·
4 Aug

"Note to other immunosuppressed folks: Just got word from my doctor that I have no antibodies to SARS-CoV-2 despite getting the J&J vaccine in April. If you want to know if you're protected, you can ask your doc to order this blood test from Igenex.



Covid-19 Vaccine Response Test Panel
COVID-19 VACCINE RESPONSE TEST PANEL Fast, accurate testing to determine the immune system’s response to the SARS-CoV-2 vaccine.INTRODUCING COVID-19 VACCINE RESPONSE TEST PANEL NEW! IGeneX is now...
igenex.com"


I don't tweet but occasional tweets arrive in my inbox as did this. There were more tweets in the thread but they are difficult to reproduce.

I am interested because I too have produced very few antibodies in response to my AZ jabs and a ' borderline' T cell response.

I had mine checked because we were due to spend a holiday with grandchildren coming in and out, after they had been playing with other children. I believe CDC does not recommend testing but it helped me decide that the planned holiday was not wise.

I contacted local private facilities to get prices for antibody testing and went to the closest/cheapest which is actually linked to my NHS GP practice. My results were sent to my GP who rang me to say I was 'immunosuppressed' - first time that expression had been used. He said I would need the booster Pfizer. I will need to think about this because I was very ill after vs 1 and 2: it feels a bit like Russian roulette. But I can't imagine turning down a v.

@Wits End- hope this gives you the info you wanted. I believe that many do not believe testing is useful currently and I think @Snow Leopard has written on here to this effect but I'm not sure if I've misremembered this.
 
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Binkie4 said:
@Wits End- hope this gives you the info you wanted. I believe that many do not believe testing is useful currently and I think @Snow Leopard has written on here to this effect but I'm not sure if I've misremembered this.
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My main concern is about the reliability of the tests that are used. There is still a great deal of variation between tests and samples from the same individual.
 
Mij said:
Does anyone know if Brian Vastag got sick at all from the J&J vaccine?

He wrote that he is 'immunosuppressed' and not 'immunocompromised". What makes someone immunosuppressed?
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The tweets I read didn't say but I don't think I had access to the whole thread. I have appreciated those with ME sharing their response because I think our immune systems may differ from patients in the trials.

I think I've been using 'immunosuppressed' and 'immunocompromised' interchangeably which is no doubt wrong. I'll have a zoom with Dr Bansal in September and ask him then, also discuss the booster. Maybe @Jonathan Edwards can clarify?
 
Mij said:
[Brian Vastag] wrote that he is 'immunosuppressed' and not 'immunocompromised". What makes someone immunosuppressed?
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I have no personal knowledge about immunosuppression, but I can copy what Brian wrote in the second tweet on that thread:

I should note that I fall into the category of 'immunosuppressed,' not 'immunocompromised.' I take methotrexate, an immunosuppressant. Transplant patients, for instance, are immunocompromised.

Tweet included in this quote section:
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URL for those who have trouble with embedded links:
Code: 
https://twitter.com/brianvastag/status/1422697125276577792
 
ahimsa said:
I have no personal knowledge about immunosuppression, but I can copy what Brian wrote in the second tweet on that thread:

I should note that I fall into the category of 'immunosuppressed,' not 'immunocompromised.' I take methotrexate, an immunosuppressant. Transplant patients, for instance, are immunocompromised.

Tweet included in this quote section:


URL for those who have trouble with embedded links:
Code: 
https://twitter.com/brianvastag/status/1422697125276577792
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eh? that doesnt make sense to me.
I'm not a doctor, but
Organ transplant recipients are immunosuppressed... they take drugs to suppress their immune systems to prevent organ rejection.Living With Immunosuppression After an Organ Transplant (webmd.com)

Immunocompromised just (afaik) means your immune system is not working optimally - for whatever reason.

So a transplant recipient would be immunocompromised because they are immunosuppressed, whereas others might be immunocompromised due to an innate problem/poorly functioning immune system for whatever reason.
 
Just had 2nd AZ, and holding my Certificate of Vaccination in my hot little hand.

No problem so far, but only been a couple of hours.

Now looking forward to a booster to improve coverage for variants, especially Delta and Peru-Lambda (name?).
 
I had my 1st Pfizer last Friday. Only very trivial and expected side effects of a sore arm and a mild headache for a couple of days. I realise the side effects are likely to be more with the 2nd jab.

I can uncross my fingers now I think. I hadn't had any vaccinations in 16 or 17 years and was concerned it might rev up my ME but apparently not.

My sympathy to members who have not been so lucky and are suffering after their vaccinations (or infection).
 
I can't tell if my pounding heart, chest pain, exhaustion, weakness and malaise is due to a ME/CFS flare or due to the 2nd dose.

There was a lot of traffic and traveling to the vaccination center took longer than anticipated. The current trajectory of my illness is also a slow decline from my previous plateau of high functioning so maybe I'm just becoming more sensitive again to being upright, sensory stimulation and exertion. Speaking of which, the time around and after the 1st dose were some of the best weeks in years in terms of functioning.

Edit: it improved after some rest so it was probably mostly exertion related.
 
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