Alternative and delayed vaccination schedule for people with ME/CFS

Marylib

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There are a few people talking about negative effects from the Covid vaccine, so some of us are interested in pursuing some kind of alternative. There is information from Alison Bested (a few years ago) suggesting patients request something along the lines of a paediatric flu vaccination for example. This would require that the doses be administered differently, and the doses are tracked. For example the Pfizer needs to be kept frozen so advocating for this might mean alternative packaging, as opposed to the standard dose, which comes in a glass ampoule. Parents can request a delayed vaccination schedule for newborns, for example. Please put this post where it needs to be, admins. Thanks. It's pretty sad that some areas in the US report that there is now medical waste being created from vaccines no one wants. This could be because of unfounded concern on the part of healthy people, but who knows?
 

Learner1

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There are a few people talking about negative effects from the Covid vaccine, so some of us are interested in pursuing some kind of alternative. There is information from Alison Bested (a few years ago) suggesting patients request something along the lines of a paediatric flu vaccination for example. This would require that the doses be administered differently, and the doses are tracked. For example the Pfizer needs to be kept frozen so advocating for this might mean alternative packaging, as opposed to the standard dose, which comes in a glass ampoule. Parents can request a delayed vaccination schedule for newborns, for example. Please put this post where it needs to be, admins. Thanks. It's pretty sad that some areas in the US report that there is now medical waste being created from vaccines no one wants. This could be because of unfounded concern on the part of healthy people, but who knows?
It's not clear what you're looking for. The ME/CFS Clinician's Coalition has come out strongly in favor of getting the vaccine and some of them have publicly provided thoughts/suggestions of minimizing the side effects.

If one feels that one's situation is particularly special beyond the issues of most of us, talking to one's doctor is the best idea to find an individual plan that is appropriate.

I have MCAS, autoimmunity and Immunodeficiency, so it wasn't clear how I'd be impacted. But I followed the advice of my doctor and Nancy Klimas, and took supplements, mast cell stabilizers and antihistamines before, during and after and had normal side effects each time - sore arm, fever, fatigue for a week which all went away after 3-7 days. Some patients have had improvement from the vaccines.

Fanning the flames of doubt and fear just serves to get websites and fora in trouble these days. Please arm yourself with facts, and if you really want to get into it further, there is a very active FB group for ME/CFS patients and COVID vaccines where you can find a caring audience for your concerns.
 
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pamojja

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Fanning the flames of doubt and fear just serves to get websites and fora in trouble these days.
Honestly, it's rather the suppression of potential treatments from the beginning, like ivermectin. As well as the attempts to silence so many scientists even from within the vaccine-industry voicing safetey concerns about those still experimental vaccines - which is really fanning the flames of doubt and fear, than anything else ever could.
 
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Learner1

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Honestly, it's rather the suppression of potential treadments from the beginning, like ivermectin. As well as the attempts to silence so many scientists even from within the vaccine-industry voicing safetey concerns about those still experimental vaccines - which is really fanning the flames of doubt and fear, than anything else ever could.
There is a FB group to discuss this. Lots of discussion on it.

There is a lot of health information that is suppressed, which is unfortunate. It does make it even more important to find the facts on any potential treatment for anything and to look for alternatives, researching those as well.

Unfortunately, this virus has managed to evade the wishful thinking of many political leaders, medical people and regular folks and survived to infect and kill millions, and leave millions more damaged.

Many of us are immunocompromised, and are at the mercy of the behavior of others to not spread this disease, which is increasing by many tens of thousands each day, while people continue to underestimate its strength.
 

Marylib

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It's not clear what you're looking for. The ME/CFS Clinician's Coalition has come out strongly in favor of getting the vaccine and some of them have publicly provided thoughts/suggestions of minimizing the side effects.

If one feels that one's situation is particularly special beyond the issues of most of us, talking to one's doctor is the best idea to find an individual plan that is appropriate.

I have MCAS, autoimmunity and Immunodeficiency, so it wasn't clear how I'd be impacted. But I followed the advice of my doctor and Nancy Klimas, and took supplements, mast cell stabilizers and antihistamines before, during and after and had normal side effects each time - sore arm, fever, fatigue for a week which all went away after 3-7 days. Some patients have had improvement from the vaccines.

Fanning the flames of doubt and fear just serves to get websites and fora in trouble these days. Please arm yourself with facts, and if you really want to get into it further, there is a very active FB group for ME/CFS patients and COVID vaccines where you can find a caring audience for your concerns.
I'm not looking at doubt and fear and actually the idea was hatched on the page you mentioned. I have the facts quite clearly from every source you mentioned. Alison Bested is now working with Nancy Klimas and she made a recommendation to her own patients. Perhaps Nancy will follow up on it.
 

Gingergrrl

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There is information from Alison Bested (a few years ago) suggesting patients request something along the lines of a paediatric flu vaccination for example.
I am not familiar with Alison Bested but I was curious if you had a link re: this info? I apologize if you posted it and I missed it.
 

Learner1

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I'm not looking at doubt and fear and actually the idea was hatched on the page you mentioned. I have the facts quite clearly from every source you mentioned. Alison Bested is now working with Nancy Klimas and she made a recommendation to her own patients. Perhaps Nancy will follow up on it.
Well, if that was your intent, this wasn't clear from your post. Definitely please share the link for Allison Bested's approach. Thank you.
 

Marylib

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This is what a friend shared with me that sparked a conversation about possible alternative vaccine measures. I'm hoping someone might investigate this in the future. Obviously it would require testing to find out if spike protein and other immunological measures hold out. I find immunology to be way too complex. I've tried to sit in on a few lectures, but I can't seem to hold on to much useful information about how it all works. (All I know is that some parents chose delayed vaccination schedules for their babies rather than doing them all at once).

I've spoken to two doctors and a PhD immunologist about my own situation, and I've been told there is just not enough information to make an informed recommendation - because of my own personal circumstances. It's up to me.

https://www.ei-resource.org/news/ch...ccination-and-chronic-fatigue-syndrome-mecfs/
 

Learner1

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The choices we make about vaccines impact other people, not just us. The immune system is complex and it's impossible to predict how any treatment or environment factor of any kind will affect our immune system. We can learn from others experiences and there are things we can do to minimize the risks.

The Bested article is 11 years old. There have been many immune system developments in the past 11 years, and there are the current recommendations of ME/CFS specialists, which are different, based on more current information.
 

Marylib

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The other interesting thing I have noted is that one person is doing so well with her reaction to the vaccine that she is hoping to get them on a regular basis, as an immune modulator. My personal friend with ME, from real life, is on the other hand, now finding it difficult to taper off the prednisone she was given by her doc to quell the systemic inflammatory response to the vaccine that put her back into a severe state, after having achieved remission. My biological sister's doc told her to hold off on a second dose for now, though she has pretty much recovered from her pulmonary inflammatory response. I shared all this with my own GP a couple of days ago. Am very grateful to this GP who assumed I had a covid infection in February- April of 2020, though I could not get tested at that time, because the entire country was soon locked down tight as a drum. Had it not been for a kind volunteer from the local Sikh community, I would not have been able to get my Rx refills at all. Am also grateful to a friend originally from South China who drove over to see me in January 2020 to tell me what was happening, to double-mask, wash my hands and face frequently and go into isolation immediately.
 

Marylib

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I am not familiar with Alison Bested but I was curious if you had a link re: this info? I apologize if you posted it and I missed it.
@ It is from some years ago, when Dr Bested was in Canada, I think. It was guidance around the influenza vaccine, which some people prefer to avoid altogether. Some people were originally triggered into ME by a flu vaccine. Some one captured this on the internet.
 

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