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Vaccine injury

Some people with ME/CFS have been reporting for decades that vaccines have triggered or worsened their condition. The coronavirus pandemic is finally bringing attention to this issue.

For decades, some people in the ME/CFS community have been reporting that a vaccine triggered their condition – yet little work has been done – and the scientific community has been skeptical. Except for the HPV vaccination syndrome, the question of whether vaccines can trigger diseases like ME/CFS, POTS and fibromyalgia has been virtually ignored.

The coronavirus, though, presents something new. With the pandemic exposing millions and millions of people to vaccines at the same time, the idea that vaccines can trigger an ME/CFS-like condition is starting, not without reluctance, to catch on.

With vaccines dramatically reducing hospitalizations and deaths from COVID, and even being able to reduce the risk of coming down with long COVID, researchers have understandably been hesitant about touching the idea that vaccines actually be producing long COVID as well. The number of long-vax patients showing up in doctors’ offices, however, has made ignoring the issue increasingly difficult.

Anne Louise Oaklander, a Harvard neurologist and fibromyalgia researcher, told Science:

“You see one or two patients and you wonder if it’s a coincidence, but by the time you’ve seen 10, 20….Where there’s smoke, there’s fire.”

Harlan Krumholz, a highly published cardiologist at Yale University, said he was reluctant to bring the subject up, but was “persuaded that there’s something going on”. Noting that the entire government would like this issue to go away, he stated, “It’s my obligation if I truly am a scientist, to have an open mind and learn if there’s something that can be done”.

He warned against lumping the long vaxxers in with anti-vaxxers – as the long vaxxers believed in the vaccines enough to take them. He and Akiko Iwasaki at Yale have begun a large vaccine-induced illness study.

Dr. Bernard Schieffer – a German cardiologist who has seen over 350 long-vax patients – fully endorses vaccine for long COVID but would have made changes in their rollout.

“I strongly believe that the Covid vaccination is the best thing that could have happened to us, but if we did it today, we would raise it very differently.” (Google translation).

The Mysterious Ups and Downs  of Vaccines – Health Rising’s Vaccine Polls

Health Rising began tracking responses to the coronavirus in the ME/CFS/FM and related communities about a month and a half after the coronavirus vaccines were introduced. Our first coronavirus vaccine poll found that from 20% (Pfizer/Astra Zeneca) – 35% (Moderna) of poll respondents were still experiencing symptoms a month after the second shot of the vaccines.  From 30 to 37% of people reported having severe symptoms.

Our improved November vaccine poll, which included longer time frames, found that between 7% and 10% of people reported symptoms up to 6 months, and after 6 months after the second Pfizer shot. The figures for Moderna were 3 and 8%.

On the other hand, our vaccine improvement poll found that 29% percent of the approximately 1,100 people answering the poll reported improving after the vaccine, almost 30% of them “dramatically”. Thirty-three percent reported their improvements lasted at least a month.

Health Rising’s Coronarvirus Infection and Vaccine Side Effect Poll: Take II

Multiple studies indicate that getting vaccinated actually reduces the risk of coming down with long COVID. A recent study found that long-COVID patients who had not been vaccinated were significantly more likely to experience headaches, joint pain, and problems with blood pressure than those who had been vaccinated.

We also know that other vaccines can be quite helpful when matched with the right immune system. Several of Health Rising’s recovery stories feature people who recovered after taking one vaccine or the other. For many years, Carl-Gerhard Gottfries treated ME/CFS patients with a staphylococcus vaccine.

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

All of which points to how complex the immune system is. The vaccines can apparently give or take depending on your immune status.

“Long Vax” Slowly Gaining Acceptance

“They are actually identical symptoms to those we know from post-Covid patients after an infection.” Professor Bernhard Schieffer University Hospital Marburg, Germany on Post Vax Syndrome.

Thus far, the symptoms appear identical to long COVID and ME/CFS. React19, a non-profit created by medical professionals who’d experienced vaccine injury, provided a long list of symptoms.

“nausea, weight loss, heartburn, diarrhea/constipation, sleep disturbances, chest pains, headaches, facial and sinus pressure, dizziness, severe weakness and fatigue, painful paresthesias, throughout the body, severe painful paresthesias focused on the face, tongue and scalp, internal vibrations and tremors, muscle twitching and muscle spasms, brain fog and mental status changes, memory loss, tinnitus, impaired/blurred vision, elevated blood pressure and heart rate, bulging veins, heart issues and weakness.”

Lawrence Purpura, an infectious disease specialist at Columbia University who is also a partner to someone with post-vaccination illness, could have been talking about ME/CFS or long COVID when he called it “a long, relentless disease”.

The condition – now called “long vax” – has only slowly been gaining acceptance in the medical profession. REACT19 put the matter plainly:

“The Covid-19 vaccine injured have often been abandoned by the current health care system. We have been ignored, misdiagnosed, and often censored. We have struggled to find adequate healthcare. While there have been some advances in research regarding long Covid and there are some similarities between long Covid and some Covid vaccine injury syndromes, there is little ongoing research regarding the Covid-19 vaccine events.”

React19, which represents over thirteen thousand COVID-19 vaccine-injured people, isn’t waiting for the feds to show up. Stating, “We have little faith that our governmental agencies such as the FDA, NIH, CDC, and HHS will prioritize and support the research that we need”, the group is creating its own research network and beginning to fund small pilot studies. It’s also created a doctor’s network and allows vaccine-induced illness patients to tell their stories.

THE GIST

  • For decades, some people in the ME/CFS community have been reporting that a vaccine triggered their condition – yet little work has been done.  Except for the HPV vaccination syndrome, the question of whether vaccines can trigger diseases like ME/CFS, POTS and fibromyalgia has been virtually ignored.
  • With vaccines dramatically reducing hospitalizations and deaths from COVID and even being able to reduce the risk of coming down with long COVID, researchers have understandably been hesitant about touching the idea that vaccines actually be producing long COVID as well. The number of long-vax patients showing up in doctors’ offices, however, has made ignoring the issue increasingly difficult.
  • Our first coronavirus vaccine poll found that from 20% (Pfizer/Astra Zeneca) – 35% (Moderna) of poll respondents were still experiencing symptoms a month after the second shot of the vaccines. From 30 to 37% of people reported having severe symptoms.
  • Our improved November vaccine poll, which included longer time frames, found that between 7% and 10% of people reported symptoms up to 6 months, and after 6 months after the second Pfizer shot. The figures for Moderna were 3 and 8%.
  • On the other hand, our vaccine improvement poll found that 29% percent of the approximately 1,100 people answering the poll reported improving after the vaccine, almost 30% of them “dramatically”. Thirty-three percent reported their improvements lasted at least a month.
  • The condition – now called “long vax” – has only slowly been gaining acceptance in the medical profession. REACT19 – a non-profit created by medical professionals with vaccine injury – stated: “The Covid-19 vaccine injured have often been abandoned by the current health care system. We have been ignored, misdiagnosed, and often censored. We have struggled to find adequate healthcare.”
  • React19 is creating its own research network and is beginning to fund small pilot studies. It’s also created a doctors’ network and allows vaccine-induced illness patients to tell their stories.
  • Few studies have been done but the “LISTEN” (Listen to Immune, Symptom and Treatment Experiences) which was by respected researchers from Yale, currently contains over 750 people with post-vaccination illnesses. Its results will hopefully spur more research funding.
  • Little data on treatment is available but Dr. Bernard Schieffer in German is trying an entirely new treatment – which he said helped in a small unpublished pilot trial – and could have relevance to both long COVID and ME/CFS.
  • Schieffer’s novel treatment approach targets the RAS-bradykinin axis (ACE-2 dysregulation), cholesterol metabolism (to support the blood vessels and reduce inflammation), and the gut (histamine-reduced diet to tame the mast cells.)
  • Schieffer spent much of his recent paper on treating long COVID explaining how he believes ACE-2 receptor dysregulation could result in cardiovascular (increased clotting), neurological, dermatological, gut, and autoimmune problems. Some interesting possible outcomes are chronic increased sympathetic hyperactivity, pain, anxiety, and cognitive problems.
  • ACE-2 receptor problems have been found in long COVID, POTS, and ME/CFS. Until Wirth and Scheibenbogen integrated RAS system dysregulation into their ME/CFS hypothesis, this system was virtually completely ignored in ME/CFS research circles.
  • For a while, it seemed like vaccine-induced ME/CFS-like illnesses were going to get swept under the rug in the same way that ME/CFS was for years. With at least one large study underway though by respected researchers, though, it appears it will get its day in the sun.
  • Once again, long COVID is triggering research into areas that have long been of concern in ME/CFS but received little study.

Studies

The few long-vax studies that have been done have piqued some interest – and media coverage – but what’s really needed are large, rigorously done studies that grab researchers’ attention. At least one is underway.

Most of the focus thus far has been on vaccine-induced postural orthostatic tachycardia syndrome (POTS) and small fiber neuropathy (SFN). Nath’s 2022 preprint study of 23 women experiencing new onset neurological symptoms after COVID-19 vaccination found a high incidence of dysautonomia, POTS, and small fiber neuropathy.

A much larger electronic health record (EHR) study (n=297,000 adults) found that the risk of being diagnosed with POTS increased by a third after vaccination. The same study, suggested, though, that a coronavirus infection increased the risk of coming down with POTS fivefold. Thus, while both vaccination and a coronavirus infection increased the risk of getting POTS, the authors initially interpreted the findings to mean that getting infected with the coronavirus was more dangerous.

Vijay noted that a correction was made to that interpretation and that it was actually impossible from the data to tell if that was so and better studies are needed to answer that question. Thankfully, they are underway.

Vijay also pointed out that because the study was done before a dedicated ICD-10 code was established for POTS it may have undercounted its prevalence. He noted that “from a medical (and pharmaceutical) point of view, ~1 in 1000 is far from a rare event or small subpopulation. It’s also noteworthy that POTS sign/symptom onset occurred 50-75x more often than myocarditis, given how much the latter has been discussed.”

The Iwasaki/Krumholtz study underway – aptly named “LISTEN” (Listen to Immune, Symptom and Treatment Experiences) – is the one to keep an eye on. Created by respected researchers from Yale, the study currently contains over 750 people with post-vaccination illnesses. Its results will hopefully spur more research funding. They hope to release results later this summer.

Check out Harlan Krumholz talking about his and Iwasaki’s long-COVID and long-vax study here.

Cause

The top explanations for long vax are familiar (immune overreaction, autoimmune reaction) but are more specific than we’ve seen in ME/CFS, with a focus on the ACE-2 receptor the virus uses to gain entry into the cell. Schiffer, the German cardiologist, proposes that an autoimmune reaction leads to immune exhaustion in both long COVID and long vax.

  • An immune overreaction to the spike protein in the vaccines leads to blood vessel leakage, disruption to the blood-brain barrier, and others.
  • An autobody/autoimmune reaction to the ACE-2 receptor that coronavirus uses to enter the cell. This receptor affects blood flows, blood pressure, heart rate, and even potentially the small fiber neuropathy and mitochondrial problems in ME/CFS. A few small studies suggest the ACE-2 receptor is messed up in POTS and ME/CFS. An autoantibody response could also activate inflammasomes.

Treatment

Three patients who received IVIG 5-9 months after getting sick recovered fully. Plasma exchange dramatically helped one long-vax patient – for a time.

Schieffer in Germany, however, is trying an entirely new treatment – which he said helped in a small unpublished pilot trial – and could have relevance to both long COVID and ME/CFS.

Schieffer believes it will take more than one treatment to take on such a complex disease. His novel treatment approach includes  AT1R-antagonists (AT1RB) to block angiotensin II and affect the RAS-bradykinin axis (ACE-2 dysregulation),  statins to affect cholesterol metabolism (and support the blood vessels and reduce inflammation), and the gut (a histamine-reduced diet to tame the mast cells). He proposes using – a potent vasoconstrictor.

RAS and Bradykinin: Where COVID-19 and ME/CFS Meet?

 

Since the ACE-2 receptor appears to be messed up in all three diseases (ME/CFS, long COVID, and POTS), Schieffer’s attempt is welcome and potentially helpful. Schieffer spent much of his recent paper on treating long COVID explaining how he believes ACE-2 receptor dysregulation could result in cardiovascular (increased clotting), neurological, dermatological, gut, and autoimmune problems. Some interesting possible outcomes are chronic increased sympathetic hyperactivity, pain, anxiety, and cognitive problems.

The Renin-Angiotensin-Aldosterone Paradox in Chronic Fatigue Syndrome (ME/CFS) and POTS

Until Wirth and Scheibenbogen integrated RAS system dysregulation into their hypothesis, this system was virtually completely ignored in ME/CFS research circles. Schieffer brings in the same bradykinin upregulation into long COVID that Wirth/Scheibenbogen did in ME/CFS.

Hypothesis Predicts Major Failure Point in Chronic Fatigue Syndrome (ME/CFS)

He’s hoping to start a 500-person clinical trial.

Questions, Questions

The big question why this is immune response is happening to some people and others could tell us more than about the vaccines. Krumholz said he believes these studies will provide insights into other mysterious diseases.

Why, for instance, does long vax at least anecdotally appear to be more likely in ME/CFS, and what does it tell us about that disease? Why do some people – particularly people with ME/CFS – appear to be vulnerable to vaccines in general? How is it that vaccines modeled on one part of the coronavirus – the spike protein – essentially duplicate long COVID? Are some vaccines more or less likely to produce long vax or ME/CFS, and why?

For a while, it seemed like vaccine-induced ME/CFS-like illnesses were going to get swept under the rug in the same way that ME/CFS was for years. With at least one large study underway, though, by respected researchers, it appears it will get its day in the sun. Once again, long COVID is triggering research into areas that have long been of concern in ME/CFS but received little study. It’s another unintended and unforeseen gift from the coronavirus to the ME/CFS community.

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