HealthRising: "ME/CFS and the Coronavirus Vaccine: Is There a Better Way?"

Messages
2,284
Likes
7,537
Sharing for visibility for our community.

https://www.healthrising.org/blog/2...-vaccine-chronic-fatigue-syndrome-better-way/

"Some people are eventually recovering after 6 weeks, some after 12 weeks, but many aren’t recovering at all."
Thanks for sharing. Important topic. A friend of mine lost 90% of her energy in her legs after the vaccine and contacted Professor Iwasaki and forwarded her to Ron. They now collaborate. So I think this will be a topic we will hear more about in the near future.

I think the most shocking in this article is that some went from mild to severe after the vaccine.
 

Revel

Senior Member
Messages
630
Likes
3,446
A friend of mine lost 90% of her energy in her legs after the vaccine
Within 12 hours of receiving the AstraZeneca vaccine I experienced "transient limb paralysis". I was unable to move my legs at all or sit upright, and my upper body became extremely weak.

Over the following 4 months, I recovered almost to my original baseline, but this then stalled and I began going backwards again.

I only weighed about 85lb to begin with (less now), have poor tolerance of medications and would have much preferred attempting a lower dose regimen, had it been on offer, and despite it's efficacy being an unknown.

I have gone from a pre-vaccination 10% on the Hummingbird Physical Ability Scale down to 5%. I really miss that precious 5%.
 
Messages
2,037
Likes
4,702
Location
United Kingdom
Interesting you mention the legs, my legs went incredibly weak post jab (probably didn't happen until 10 days in though, once the t cell response had calmed down possibly?) anyway I lost the use of them for about a week. I only just started to feel better recently but today had a bit of a set back again. Was totally stable at 80% pre covid jab, it's really messed me up.

Still think I might get back there but not really sure yet feels like a 3 monther possibly, the dizziness is also not great and that had been gone for a very long time, months.

Really sorry you had to loose even more than me though, that's truly horrible.
 
Messages
2,037
Likes
4,702
Location
United Kingdom
It would be so intriguing to know what it breaks. Both times it was after the t cell activation period that I crashed or relapsed. Although with the second dose I felt worse literally the day after and that gradually got worse (felt it in my neck) - while it could be a reactivation it almost points to ingredients in the vaccine, as those are out of the body within 24 hours I think.

The other thing was my injection site from the first jab really hurt and seemingly never healed properly, a week after I got my second jab that pain disappeared and has never come back. So what was all that about? Weird symptom that one was.
 

WantedAlive

Senior Member
Messages
158
Likes
761
Oh crap…I’m due to get a vaccination in 3 weeks (Pfizer). A flu vaccine triggered my ME, so undeniably I‘m anxious, but I view the vaccine as the best of a bad choice. Reading these experiences though, and knowing my bad luck I’ll be one of these bad responders, it’s putting me off. So what are we supposed to do? We can’t hide forever. This is like Russian roulette!

For now, I’m lucky to live in NZ which is still virus free presently, but that luck won’t last indefinitely. My preference is to be vaccinated before any outbreak. But I’m severe already, so I’ve got no room for further deterioration. I’m sorry for you @Dakota15 , @Revel , @godlovesatrier - did you all get the Astra vaccine? What about you @Martin aka paused||M.E. , are you getting a vaccine?

I think I’ll pause a month or three, but frankly I don’t see anything changing this year, except for an ever looming risk of infection. I feel I’ll just be postponing an inevitable and only choice.
 
Messages
2,284
Likes
7,537
Oh crap…I’m due to get a vaccination in 3 weeks (Pfizer). A flu vaccine triggered my ME, so undeniably I‘m anxious, but I view the vaccine as the best of a bad choice. Reading these experiences though, and knowing my bad luck I’ll be one of these bad responders, it’s putting me off. So what are we supposed to do? We can’t hide forever. This is like Russian roulette!

For now, I’m lucky to live in NZ which is still virus free presently, but that luck won’t last indefinitely. My preference is to be vaccinated before any outbreak. But I’m severe already, so I’ve got no room for further deterioration. I’m sorry for you @Dakota15 , @Revel , @godlovesatrier - did you all get the Astra vaccine? What about you @Martin aka paused||M.E. , are you getting a vaccine?

I think I’ll pause a month or three, but frankly I don’t see anything changing this year, except for an ever looming risk of infection. I feel I’ll just be postponing an inevitable and only choice.
I'm vaccinated (BiontechPfizer) and had no side effects.
 
Messages
2,037
Likes
4,702
Location
United Kingdom
Really @Martin aka paused||M.E. ? That's so odd compared to the rest of us. Especially with your very low immune cell numbers. I wonder why we all react so differently.

@WantedAlive yes it was AZ. Honestly I hate the fact this govt ended up giving us the cheapest option. I would have much preferred an inactivated virus. I am completely 50/50 as to whether I'll get a booster in sept. Which should be Pfizer. But I probably will. Mrna in my opinion should be better. Corts poll seemed to bear this out.

Sorry for your predicament though. But as Martin didn't react and is severe that may bode well for you possibly. I think it's Russian roulette how we all react :(

Honestly if I wasn't doing Josh's protocol right now I'd be lost. Lost to being housebound I mean and getting bad PEM with any sort of exertion. Not to mention breathless doing almost any task. One thing I did though was come off his protocol to get my second shot. Purely because it was a live vaccine. With an inactivated vaccine I don't need to do that nor will I be!

Good luck!
 

Marylib

Senior Member
Messages
999
Likes
1,210
Really @Martin aka paused||M.E. ? That's so odd compared to the rest of us. Especially with your very low immune cell numbers. I wonder why we all react so differently.

@WantedAlive yes it was AZ. Honestly I hate the fact this govt ended up giving us the cheapest option. I would have much preferred an inactivated virus. I am completely 50/50 as to whether I'll get a booster in sept. Which should be Pfizer. But I probably will. Mrna in my opinion should be better. Corts poll seemed to bear this out.

Sorry for your predicament though. But as Martin didn't react and is severe that may bode well for you possibly. I think it's Russian roulette how we all react :(

Honestly if I wasn't doing Josh's protocol right now I'd be lost. Lost to being housebound I mean and getting bad PEM with any sort of exertion. Not to mention breathless doing almost any task. One thing I did though was come off his protocol to get my second shot. Purely because it was a live vaccine. With an inactivated vaccine I don't need to do that nor will I be!

Good luck!
@godlovesatrier and @Martin aka paused||M.E. what exactly are you referring to with low immune cell numbers? I am thinking about how those who aren't able to mount an immune response would be likely to have very little reaction..but most of us don't have access to that kind of testing. Anyway, it would be helpful to know exactly what that testing panel looks like - for those of us who haven't yet spun the wheel of chance and have an aversion to Russian roulette. I'm very sorry to hear of everyone's troubles.
 
Messages
2,284
Likes
7,537
@godlovesatrier and @Martin aka paused||M.E. what exactly are you referring to with low immune cell numbers? I am thinking about how those who aren't able to mount an immune response would be likely to have very little reaction..but most of us don't have access to that kind of testing. Anyway, it would be helpful to know exactly what that testing panel looks like - for those of us who haven't yet spun the wheel of chance and have an aversion to Russian roulette. I'm very sorry to hear of everyone's troubles.
Very low B cells and low nk cells
 

Marylib

Senior Member
Messages
999
Likes
1,210
Thanks..sounds like the low capacity for immune response? But I have no idea. How did you manage to get the testing? Good private insurance in the US?
Do you get tested regularly? And I guess you have had the spike proteins to Covid measured now that you have been vaccinated? Hopefully the vaccines did their job.
 
Messages
2,284
Likes
7,537
Thanks..sounds like the low capacity for immune response? But I have no idea. How did you manage to get the testing? Good private insurance in the US?
Do you get tested regularly? And I guess you have had the spike proteins to Covid measured now that you have been vaccinated? Hopefully the vaccines did their job.
Im German and my GP visited me. Yes I’m quite concerned bc of my low B cells that I don’t make sufficient AB
 

Revel

Senior Member
Messages
630
Likes
3,446
@WantedAlive, even though I had a bad reaction I am still pro-vaccination.

I think the issue for me is likely adenovirus vector vaccines (AstraZeneca and J&J). If my GP is able to procure Pfizer for me later in the year, I would certainly consider having it, despite my unfortunate experience with AZ.

Do you know what type of flu vaccine you had that triggered your ME?
 

Revel

Senior Member
Messages
630
Likes
3,446
Honestly I hate the fact this govt ended up giving us the cheapest option. I would have much preferred an inactivated virus.
In hindsight, so would I!

Hopefully things will be learned from our collective vaccine reaction experiences.

My GP says that every vaccine reaction experience is important, be they nil, mild, moderate or severe, so that in the future, vaccines can be tailor-made to accommodate the needs of each individual patient.

I think we're some way off this goal, but I have to admire his optimism!