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

[judyinthesky]

@Rufous McKinney maybe this is something to discuss with a specialists in immunology
But I suppose a lot of advocacy to do
I don't want to scare anyone but people like me do exist even in the minority
When you're the minority of the minority it's getting tough!
It's a contested subject

 

[judyinthesky]

I also would like to add that there was not any negative or anti v thinking when I got it. I was looking forward to it.
It's never been expected from anyone and I'm not a much pain or negative persona.
I say this because subconsciously we might say oh it's those very severe ones or oh it's those negative ones... who get hit harder. Like ME, also the v doesn't discriminate, I know now.

 

[Tammy]

Still working on the HHV6 - I've seen that these vaccines have also reactivated shingles, and I imagine they can trigger reactivation of EBV, too, though I'm PCR negative on that so far....

https://webmd.com/lung/news/20210630/could-the-mono-virus-be-driving-long-haul-covid#1

 

[Riley]

I want a lessor dose, or doses spaced out more. Where is this service?

There is no ethical provider who is going to do this at this juncture. It would be pure medical experimentation with potentially deadly consequences.

 

[Rufous McKinney]

It would be pure medical experimentation with potentially deadly consequences.

I think thats an artificial argument , but of course nobody is going to help us do that.

If you get a lessor dose, and break the dose up into smaller doses over more time- figure your not vaccinated until all thats completed. So that is on the patient. Stay home longer, your still not protected. And whomever is agreeing to give you smaller doses over more time- can wait to fill out the CARD until you've achieved the full dose.

But none of that was in the trials, so we might as well live on Mars.

 

[Marylib]

There is no ethical provider who is going to do this at this juncture. It would be pure medical experimentation with potentially deadly consequences.

I know what you mean, I think. The big problem is Do No Harm. Does the physician consider it their duty to be as sure as possible that someone doesn't come down with the disease, or do they take the high road and say "I don't know. It's up to you. " @judyinthesky I'm very sorry this has happened and am hoping to get a statement from Solve ME on a proposal to fund a clinical trial with alternative dosing. They'll probably say, "It's up to you and your doctor." It's an incredibly frustrating merry-go-round. The previously healthy people who are experiencing all kinds of horrible symptoms from the vaccine are getting the same "No comment."

 

[Rufous McKinney]

They'll probably say, "It's up to you and your doctor." It's an incredibly frustrating merry-go-round.

my doctor stated he did not agree with receiving a lessor dose. He has his reasons which are likely valid and likely tied to: you might not generate a sufficient response if the dose is very low. (my husband asked him).

GPs also don't have vaccines at their offices. Mine doesn't. Few clinics offer Pfizer and Moderna due to the storage temperature issues. Delta is getting around J and J......not good.

 

[hapl808]

There is no ethical provider who is going to do this at this juncture. It would be pure medical experimentation with potentially deadly consequences.

Yes, but to a degree any physician who treats ME/CFS with anything besides GET and CBT is engaging in medical experimentation with potentially deadly consequences. The properly 'ethical' provider would wait until proper clinical trials are run on ME/CFS patients (which would also likely require proper diagnostic tests for ME/CFS to be developed). Then when the drug is approved by the FDA for ME/CFS, they could ethically rx it. Any provider who has rx'ed a drug off label is engaging in medical experimentation. And most of us desperately look for doctors like that because the alternative is to get nothing, or to get the easily received psychiatric diagnosis and be treated with a panoply of psych cocktails.

Personally, I think it depends on the justification. If someone has mast cell (unlikely to have a totally inactive immune system) and weighs 90 lbs, then a half dose might not be crazy or have deadly consequences. But yes, anything is a risk, INCLUDING getting vaccinated as performed in the trials as Judee and many others have sadly experienced.

Life is risks - hopefully we minimize them and make good choices. Some like myself are here because we listened to too many doctors who gave us the medically appropriate advice (push through, take some NSAIDs if you're in discomfort, don't worry about making things worse long term).

 

[hapl808]

There is no ethical provider who is going to do this at this juncture. It would be pure medical experimentation with potentially deadly consequences.

Also, giving vaccines to ME/CFS people was medical experimentation with potentially deadly consequences because of course we are not included in any trial cohort. Same with pregnant women - there were no miscarriages, but no one had carried to term when the vaccines received EUAs. So they were going by the theory that the vaccines should have no effect on pregnancy, but it was not tested as an endpoint.

Double blinded RCTs are great, but not always practical. We need ethical providers who actually care for the patients, rather than think their higher calling is the precepts of Western medicine that often erase a large number of people who don't have the proper test results to be seen.

 

[Marylib]

my doctor stated he did not agree with receiving a lessor dose. He has his reasons which are likely valid and likely tied to: you might not generate a sufficient response if the dose is very low. (my husband asked him).

GPs also don't have vaccines at their offices. Mine doesn't. Few clinics offer Pfizer and Moderna due to the storage temperature issues. Delta is getting around J and J......not good.

My GP has it. But I guess the reasons for not entertaining an alternative dosing schedule is not having access to the tests to find out if the alternative dosing did the trick.

 

[Arius]

I got 3 jabs of COVID-19 vaccine. It didn't worsen my CFS/ME, thankfully, but I did end up with lichen planus - a painful, itchy, auto-immune skin condition commonly triggered by vaccines - immediately after my third jab. Of the known causal factors, the only one that applied to me was vaccination, so I'm quite confident that was the cause. I'd never had any auto-immune issues before that 3rd vaccination. The lichen planus should eventually clear up on its own, but I've already lived with it for over a year. Still, a small price to pay compared to dying of COVID or infecting others, IMO.

 

[Mouse girl]

I got 3 jabs of COVID-19 vaccine. It didn't worsen my CFS/ME, thankfully, but I did end up with lichen planus - a painful, itchy, auto-immune skin condition commonly triggered by vaccines - immediately after my third jab. Of the known causal factors, the only one that applied to me was vaccination, so I'm quite confident that was the cause. I'd never had any auto-immune issues before that 3rd vaccination. The lichen planus should eventually clear up on its own, but I've already lived with it for over a year. Still, a small price to pay compared to dying of COVID or infecting others, IMO.

If you have cfs/me, you have auto immune issues. Who told you that it has anything to do with vaccines? If you look at credible sources, you won't find vaccine shots as a cause. Have you ever heard of correlation does mean causation? It might help. Good luck!

 

[hapl808]

Who told you that it has anything to do with vaccines? If you look at credible sources, you won't find vaccine shots as a cause. Have you ever heard of correlation does mean causation? It might help. Good luck!

I think there's a good amount of evidence and anecdotal reports that vaccines can serve as a trigger for a number of autoimmune conditions. Whether it's causal or a trigger is a bit semantic, but ignoring any correlation entirely is a bit dismissive.

 

[Renata]

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.

after Covid I had enery. I had some other LC problems. I took phizer 3 months after Covid and since then I have CFS symptoms. First 2 years I was hoping that time will heal me. From bed and housebounded to walking took me 2 years. But one month ago I went to road trip and got massive PEM tha same like 2 years back after V . And I am again in bed without energy…I blame Phizer. I am trying to get to Stanford to long Covid clinic but my insurance doesn’t agree. I am exemple from mild to Severe after v. V gave me CFS.

 

[brenda]

Being extremely sensitive to everything, I chose not to get va xxed and asked my surgery to give me exemption which they did, but only for a year when I would have to ask again.

Therefore I joined the control group and have to fill in a form online every month to say whether I have been ill that month etc. They sent me a vaccine pass.

I have had the virus 2 x I believe but use natural remedies for all my ailments. I have not taken pharma's even pain killers, for over 20 years.

 

[Seadragon]

@brenda Why did you need exemption from your surgery? The vaccines are not compulsory. Did you need it for work purposes or a vacation abroad?

I'm not vaxed either. Never had Covid that I know of but I haven't had a cold in five years anyway. Immune system batters everything that comes its way these days. Unfortunately I am much more ill ME-wise since I stopped having colds.....anyway I digress!

 

[brenda]

@brenda Why did you need exemption from your surgery? The vaccines are not compulsory. Did you need it for work purposes or a vacation abroad?

I'm not vaxed either. Never had Covid that I know of but I haven't had a cold in five years anyway. Immune system batters everything that comes its way these days. Unfortunately I am much more ill ME-wise since I stopped having colds.....anyway I digress!

At the time, it was looking like it was going to be compulsory and it's not over yet .It was a 'just in case'. I never get colds either but came down with covid.