Given the worsening that some people report after getting the coronavirus vaccine, Brendan asks if there is a better, safer way to get vaccinated.  

coronavirus vaccine

Is there a safer way for people with ME/CFS to get vaccinated? (Image by Arek Socha from Pixabay)

The choice has been a difficult one: protect oneself from a potentially dangerous virus but risk a relapse by getting the coronavirus vaccine, or not get the vaccine and hope that you don’t come down with the virus. Health Rising’s poll suggests that many people with ME/CFS/FM are indeed having a hard time with the virus: about 40% reported they were still trying to get over it three months later. While some ME/CFS experts and clinicians were wary at first, most over time advised that people with ME/CFS get the vaccine.

Most people with ME/CFS appear to get through the vaccination process fine and a surprising number of people reported they benefitted from the vaccine. A significant percentage of people, though, also report having a difficult time with the vaccines. From 27% (Pfizer)  to 36% (Moderna) of people with ME/CFS/FM reported experiencing severe side effects from second shot of the coronavirus vaccines on Health Rising’s polls. Fifteen percent (Pfizer) and 22% (Moderna) reported that their symptoms lasted more than 30 days.

(Too few people reported how they fared on the second Astra Zeneca shot to count. Thirty-six percent, however, reported having severe symptoms after the first shot which usually produces far fewer symptoms than the second shot.  Compare that to 12% of people reporting severe symptoms after the first shots of the Pfizer/Moderna vaccines. Therefore, it appears that the Astra Zeneca vaccine is causing more problems.)

The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia

Hundreds of anecdotal reports of severe worsening can be found on the Facebook group ‘ME/CFS and the COVID Vaccines’. Some have gone from mild ME/CFS to severe, others have been bedridden for 14 weeks and counting, and others have gone from working to housebound.

Common complaints include swollen glands for weeks on end, dizziness, extreme exhaustion, muscle pain, shifts in an inability to regulate temperature, new flu-like symptoms, feeling hungover, or worsening of existing symptoms. The prolonged reactions seem to be mild to a severe worsening of ME/CFS itself – not an added new condition.

Some people are eventually recovering after 6 weeks, some after 12 weeks, but many aren’t recovering at all. Some get the second shot and feel better, but others get it and worsen more. It all seems incredibly random and unpredictable.

AstraZeneca is easily the least tolerated vaccine, Moderna is next, and Pfizer has the least amount of complaints. (This generally tracks with what Health Rising’s polls have found.)

It’s not clear why AstraZeneca is causing so many more problems, but one article suggested that AstraZeneca may have more impurities (human proteins/heat-shock proteins) that may be causing an extra inflammatory response.

It should be noted that the vaccine trials included people all ages and degrees of health but did not include immunocompromised patients. (Dr. Klimas has reported that people with ME/CFS are “modestly immunocompromised”.) Since no studies were specifically done on people with ME/CFS, we don’t know what the results of those studies would be. Perhaps if they had been done, it would have been a warning. We just don’t know.

Most people who have wrestled with the vaccine decision have probably come to the conclusion that it’s safer to get the vaccine than to risk an infection. The benefits of a successful vaccination are significant. The need to isolate oneself drops substantially. What a great relief not to have to worry about the virus. Life can approach normality again. Some may feel satisfaction from knowing that they’re doing their part to stop this pandemic.

A Safer Vaccine Approach?

What if you could have the benefits of vaccination without much of the risk attached to it?

A vaccination regimen used with other vaccines does just that. It involves a ‘lower dosing regimen using neonatal dosages”, in which half doses separated by several weeks are given in an attempt to protect infants’ less robust immune systems.

This same staggered protocol using lower doses has been used by ME/CFS experts in the past for other vaccines. Back in 2014 Alison Bested, M.D., now the Clinical Director for the Institute for Neuro-Immune Medicine (INIM) made this recommendation regarding the flu vaccine for ME/CFS sufferers…

If you decide you would like to be vaccinated, then I recommend starting with an injection of one third the usual adult dose. If there are no side effects, then the same dose can be repeated in a month’s time, and the same again after one further month. The reason for this is that physicians specializing in ME/CFS, including myself, have reported cases of flu symptoms in some patients with ME/CFS for 4 or more weeks after the full dose of flu vaccine has been given.”

Lower dosing could be as effective, would be safer and it would reduce the vaccine hesitancy among ME/CFS sufferers. The fact that worries about the current vaccine offerings are leaving some patients hesitant to vaccinate is another reason to provide a safer vaccine strategy. The medical mantra “Primum non nocere” Latin for ‘First do no harm’ comes to mind.

It comes with some hurdles. Patients might need to have antibody testing to be sure they are in fact getting enough dosage to trigger the production of antibodies. A recent study that indicates that even a ¼ dose of the Moderna vaccine is enough to elicit a strong immune response suggests this not to be a problem. It could suggest, though, that some people with ME/CFS might need to use an even lower dose. Finding a dose that elicits an antibody response while not causing a severe reaction might take some work.

Using a lower dose regimen could mean it would take more time to acquire immunity. That might not be a worry for the many ME/CFS sufferers who are already well adjusted to waiting, and in isolation already.

While it’s important to note that people who’ve never had a bad response to a vaccine have reported having one with the coronavirus vaccine, people who’ve previously had a bad experience with a vaccine, or who have specific symptoms, might be prime candidates for a staggered vaccine approach. MEPedia reports some people with some symptoms may be more prone to relapsing from the flu vaccine.

“some doctors‘ believe/suggest a symptom list of a subgroup who may worsen from the flu vaccine [as relapse] “may be more likely to occur in those with ongoing flu like/infection symptoms, such as enlarged glands, sore throats, problems with temperature control”.

It’s surprising to me, at least, that lower vaccine dosing isn’t being embraced as an option in ME/CFS/FM. Staggered dosing seems – coming from the patient perspective – like a fair request and a good idea considering the long-term worsening that has already happened to some people with ME/CFS/FM.

The logistics of physically preparing reduced doses have improved dramatically after the announcement that the Pfizer vaccine can now be stored in the fridge for longer.

Both the Pfizer and Moderna vaccines often come in overfilled vials with useable extra vaccine in its bottles. Pooling is used to make more doses available by collecting leftover vaccine residue after each bottle has been drawn down. Pooling could make it easier to provide staggered doses to ME patients.

The fact that some countries have found that putting off second shots for months, and mixing/matching vaccines works, suggests, though, that the vaccines are very robust, and that simply staggering lower doses should not be a problem.

It is possible, though, roadblocks exist that I’m not aware of. Because the vaccines have not been tested in this manner, it’s possible that physicians may be worried about legal liabilities. Because the coronavirus is much more lethal than the flu virus -the consequences of making a mistake are much greater. Stricter guidelines may exist around the coronavirus vaccines vs the flu vaccines. Physicians may not have access to coronavirus vaccine vials. There may be other concerns that I’m not aware of. One of the reasons for doing this blog is to find out what they may be.

Given the severe consequences some people with ME/CFS have been experiencing after getting vaccination – and the potentially severe consequences of not getting vaccinated – if there is a better, safer way to get vaccinated, let’s employ it.


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