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.