+100%-

A year later, vaccinations are causing the coronavirus to recede in much of the U.S. Worldwide, though, the pandemic just had its worst week.

This blog contains:

  • the race between the vaccines and the variants
  • wrap-ups of the 1st Coronavirus Vaccine and the Severely Ill Vaccine polls,
  • ME/CFS/FM experts’ second take on whether or not to take the vaccination
  • a Vaccine Improvements Poll.

The Race Between the Vaccines and the Variants

With 24% of its population fully vaccinated, and 42 percent partially vaccinated, most of the U.S. appears to have threaded the needle in the race against the coronavirus variants. While over 60,000 people are still infected daily, the numbers are dropping and the pandemic appears to be on the wane. The vaccines have worked.

It’s not so elsewhere. Lower vaccination rates have resulted in more contagious and dangerous variants taking hold. Almost unbelievably, more than a year after the virus appeared, the world just experienced its worst coronavirus infection week ever.

India is setting almost daily records for new coronavirus infections – the most recent – a staggering 346,000. Toronto is creating hundreds of new critical care units, and transferring nurses from across its health care system to try to keep up with its load. Doctors report more young people are being hospitalized and dying.  It just reported its highest number of ICU cases ever. Germany is in partial lockdown; France is coming out of a lockdown.

Nineteen variants are being tracked with potentially dangerous ones coming from the U.S., the U.K., South Africa, India and Brazil. A Brazilian variant is able to re-infect people who’ve been infected before, and may be able to evade the vaccines.

Given how fast the virus is mutating, and how slow the vaccination rates are worldwide, it wouldn’t be surprising at all to see another round of vaccinations needed when a vaccine-resistant variant pops up.

Vaccinations have been the key to stopping the virus, but anecdotal reports suggest that for some people they may be having an unexpected result – helping with ME/CFS/FM.

Health Rising’s Vaccine IMPROVEMENT Poll (For Everyone Who Has Been Vaccinated)

We made a mistake with the first side effects poll – we neglected to provide for the possibility that some people with ME/CFS/FM might get better after getting the vaccine. Who knew?

The oversight was understandable. After all the worries about vaccines, who would have thought the vaccine might actually help? Reports have circulated, though, which suggest that some people’s ME/CFS/FM symptoms are actually improving after getting vaccinated.

That was actually never outside the realm of possibility. While some trace their illness back to vaccinations, vaccines have also been used to treat both ME/CFS and FM. Gottfries treated his own and his patients’ ME/CFS for years with a staphyloccocus vaccine and the BCG vaccine has been proposed for fibromyalgia.

Carl-Gerhard Gottfries: A Swedish Chronic Fatigue Syndrome Vaccine Treatment Success Story

This poll attempts to help determine whether these are isolated incidences or if the improvements are happening to a substantial number of people. If the answer is the latter –  then the vaccine effects should be studied.

In order to tell that, we need everyone who has been vaccinated – whether they have improved or gotten worse – to take this short poll. Only then will we have an idea what percentage of patients the vaccination has been helpful for.

Before we get to the ME/CFS/FM experts’ coronavirus vaccine recommendations (Take II), check out an update on Health Rising’s first coronavirus vaccine side effects poll.

First Coronavirus Vaccine Side Effects Poll Wrap-Up

With so many countries having severe outbreaks, and the more dangerous variants percolating across the globe, the question of whether or not to get vaccinated has taken on even more significance for many.

With the number of participants doubling (almost 3,500) since since the March update, it’s time to look anew at the poll results. The results have been consistent throughout the poll’s duration.

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

Most people are recovering from the side effects within a week (Pfizer – 1st shot – 73%; 2nd – 67%. Moderna – 1st shot – 77%; 2nd – 70%. AstraZeneca – 1st shot – 60%; 2nd shot – too few respondents). With just about 100 people reporting, Johnson & Johnson vaccine results thus far are similar, with 75% reporting they were over the symptoms within a week.

As expected, the second shot is producing more symptoms. While 10-15% of participants reported having a severe reaction to the first Moderna or Pfizer shot, about a third are reporting having a severe reaction to the second shot. Still, most (60-70%) are getting over the side effects from the shot within a week.

People with ME/CFS/FM still appear to be having more trouble with the AstraZeneca shot. Thirty-seven percent report having a severe reaction to the first shot, and 16% reported they were still having symptoms a month later. Not enough data was available for the second shot.

While most people are doing okay, some people are having real trouble with the vaccine. Depending on which shot is received, from 5-16% of people reported still having symptoms a month later.

Severely Ill Vaccine Side Effects Poll Wrap-Up

About 230 people have taken the severely ill vaccine side effects poll. The polls suggests that the severely ill are largely tolerating the vaccines well, with a somewhat higher percentage having trouble with it compared to the general ME/CFS/FM population.

Thus far, 67% and 74% report getting over the side effects of the first Pfizer /Moderna shots within a week. Twenty-four percent and 16% (Pfizer/Moderna) reported still having symptoms 2 weeks later. Twelve and 16% reported that their side effects were severe.

As expected, the second Pfizer/Moderna shots were more troublesome. Still, a majority, 59 and 57% (Pfizer/Moderna), reported they were in the clear a week after getting the shot. Thirty and 37% reported still having symptoms two weeks later. Eighty and 65% reported moderate or less symptoms and 20 and 35% (Pfizer/Moderna) reported having severe side effects.

As did the general ME/CFS/FM population in the first poll, the severely ill fared far worse with the AstraZeneca vaccine than the Pfizer/Moderna vaccines. Only 36% of the participants reported they were over the side effects of the first shot within a week. Fifty percent and 28% were still dealing with side effects two weeks and a month later. Thirty-eight percent described their symptoms as severe.

Too few people had taken the second AstraZeneca shot (or the Johnson & Johnson shot) to attempt a summary, but the symptoms are expected to be worse.

The ME/CFS/FM Coronavirus Vaccine Side Effects Poll Update + the New Severely Ill Vaccine Side-Effects Poll

Risks From Catching the Virus

Deciding whether or not to get vaccinated requires balancing the risk of getting infected versus the risk of relapsing from the vaccine. Getting infected with the virus carries the risk of being hospitalized, or even dying, or suffering from a significant relapse.

Sixty percent of ME/CFS/FM patients in the first Health Rising poll reported that they were still not back to baseline three months after coming down with what they believe was the coronavirus. Twenty-five percent reported they were still much worse off. Since most of the people took the poll before the more dangerous variants were widely present, the poll may understate the risks of getting ill now.

ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine – Plus The Vaccine Polls

ME/CFS/FM Experts’ Vaccine Recommendations – Take Two

Several months later, ME/CFS experts chime in again on whether or not to take the vaccine.

Almost three months and millions of vaccinations later, this blog updates the doctor recommendations featured in the January 28th blog. Three health practitioners returned the survey (and I took information off Dr. Stein’s website).

They were asked about their experiences with the vaccine, if they endorse getting vaccinated, which patients, if any, they believe should not take the vaccine, which vaccines they recommend, and suggestions about how to get through the vaccination process.

The results were unanimous. All four practitioners now endorse people with ME/CFS/FM taking the vaccine (with a few provisos), including two who were on the fence on the 28th.

Dr. Chheda

Dr. Bela Chheda MD (Mountain View, California)

Dr. Chheda recommended taking the vaccine before, and recommends taking it now.

If you have experience with your patients getting vaccinated, can you say how that’s going?

I have had several patients – guesstimate ~30-40 – who have been vaccinated with the first dose so far. The majority of patients have done very well. Two-thirds of patients are flaring with mast cell/dysautonomia symptoms but are recovering anywhere from 2-3 days to 2 weeks. I have 2 patients who are still flaring a month out.

Do you recommend that people with ME/CFS/FM get vaccinated?

Yes – I am recommending that ME/CFS/FM patients get vaccinated. Based on the current data – the risk of getting complications from getting Covid seem higher compared to potential side effects from the vaccine.

Are there any people with ME/CFS/FM that you do not recommend getting vaccinated? 

I am recommending to my patients that if you are still flaring 4 weeks after the first dose – do not take the second dose. Make an appointment with me, and then discuss on a case by case basis.

For any patients who have MCAS and are still not well controlled – I am recommending they wait till their MCAS is under better control.

I have another patient who is still flaring from a pneumovax vaccine she took in December – I am asking her to hold too. So if a patient is still flaring from any vaccine they may have taken – then I am asking them to hold off.

If you do recommend people with ME/CFS/FM get vaccinated, are there any specific vaccines that you recommend?

I am recommending the mRNA based vaccines for now (Pfizer, Moderna) based on the current available data – if a patient has a choice.

Getting any of the vaccine as soon as possible, though, remains a higher priority compared to which one you get. We have very little data on how patients are doing with J and J, and likely won’t know more until some patients get it.

Do you have any suggestions about ways to best get through the vaccination process?   

I am asking them to take MCAS meds and supplements the day of, and then for a few days to a few weeks until they are back to baseline.

(She recommended a list put together by another doctor).

The day of:

  • 25 mg Benadryl (4 hours before)
  • 1200 mg NAC
  • 40 mg famotidine
  • 800 mg quercetin
  • 1g vit C
  • 200 mg riboflavin

Days after: (for a few days based on how you flared from the vaccine – take until you feel that you are back to baseline )

  • 50 to 75 mg Benadryl
  • all supplements listed above
  • lots of rest

Dr. Eleanor Stein MD (Calgary, Canada)

“The benefit/risk ratio is decidedly in favor of being vaccinated.”

Dr. Eleanor Stein was taking a “wait and see” approach in the first vaccine survey. Three months later, her assessment of the benefit/risk ratio has put her firmly in the “take the vaccine camp”.

On the March 8th update on her website, she listed several reasons why:

  • High risk of infection – in Canada 2.4% (noting that people who rarely go out have a reduced risk). 2.5% of those infected have died, with the highest risk among the frail elderly.
  • Significant risk of long-term ME/CFS-like effects from getting the virus, with women at the greatest risk.
  • Very high vaccine efficacy rate in preventing death and hospitalizations.

She concluded: “The benefit/risk ratio is decidedly in favor of being vaccinated.”

The exceptions – if you have had an anaphylactic reaction to any of the ingredients of a vaccine (see lists on her website), you should not take it without consulting your physician. If you are on a strong immune suppressant, such as some cancer chemotherapies or rituximab, you should discuss the timing of the vaccine with your prescribing doctor to ensure it is given at a time when you are able to mount an immune response.

Stein noted that of the 2,255,174 people vaccinated in Canada, only 214 serious side effects had been reported. That’s about 93 per million.

Dr. Stein reported that the Pfizer (and mostly likely the Moderna) vaccine was “95% effective for all severities of symptomatic illness (mild, moderate and severe).” The AstraZeneca vaccine was 63% effective for all severities of symptomatic illness, and the Johnson and Johnson vaccine was 66% against moderate and severe illness.

In March, Dr. Stein reported that she personally was waiting to take an mRNA vaccine.

  • She cited Dr. Klimas’s recommendations on how to get through the vaccines.

Check out much more on Dr. Stein’s take on the vaccines here.

Theresa Dowell FNP (Flagstaff, Arizona)

If you have experience with your patients getting vaccinated, can you say how that’s going?  

Ninety percent of my patients are getting vaccinated. Typically, they will get Pfizer or Moderna unless they have a history of anaphylaxis and then they get J&J.

 Do you recommend that people with ME/CFS/FM get vaccinated?

Yes.

Are there any people with ME/CFS/FM that you do not recommend getting vaccinated? 

History of angioedema or anaphylaxis.

If you do recommend people with ME/CFS/FM get vaccinated, are there any specific vaccines that you recommend?

Pfizer and Moderna because of the increased protection.

 Do you have any suggestions about ways to best get through the vaccination process? 

Three days prior to the vaccine, increase antioxidants. Depending on which antioxidants you are taking, consider these doses: Vitamin C 1,000 mg twice daily, Ubiquinol 200 mg twice daily, Curcumin 200 mg twice daily, Glutathione 250 mg twice daily.

On the day of the scheduled vaccination, make sure you are at baseline. In other words, not flared. After getting the vaccine, REST for 2 days. Avoid stressors.

Dr. Natelson MD (New York, New York)

Dr. Natelson recommended taking the vaccine before, and recommends it now.

If you have experience with your patients getting vaccinated, can you say how that’s going?  

No apparent problem; one had marked reduction in Covid-related CFS after vaccination.

Do you recommend that people with ME/CFS/FM get vaccinated?

Absolutely!!!

Are there any people with ME/CFS/FM that you do not recommend getting vaccinated?

Only for those who may be allergic to something in the vaccine. I had one highly allergic patient who decided not to get the vaccine due to this issue. (See Dr. Stein’s page for a list of materials in the vaccines).

If you do recommend people with ME/CFS/FM get vaccinated, are there any specific vaccines that you recommend?

Any one they can get.

Do you have any suggestions about ways to best get through the vaccination process?   

Take advil and tylenol after the vaccination if uncomfortable.

Plus, Dr. Nancy Klimas on what to do if you are getting vaccinated

Dr. Nancy KlimasYou can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on.

Before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10.

The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days, the mediators mast cells release can drive a classic ME/CFS relapse.

So, take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice).

There are many mast cell stabilizers; watch Dr. Maitland’s excellent lecture from out recent CME Workshop: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS, if you want to know more: http://bit.ly/NovaDysCME

There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas.

If you have been diagnosed with mast cell activation syndrome, it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID-19 vaccines.

I suspect we will know fairly quickly, with millions of doses already administered. So you may want to wait (taking all of the COVID-19 precautions very seriously).

If you do take the vaccine, plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance, premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.

 

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THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL

Coronavirus vaccines

Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.

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