As the pandemic continues, patients with ME/CFS are still wondering how the vaccine will affect them. There are no firm answers to that question. Like everything with ME/CFS, the side effects can be unpredictable. Some patients have reported a surge of energy after getting the vaccine, others have reported feeling much, much worse for extended periods of time.
ME/CFS patients with allergies, multiple chemical sensitivities, concurrent autoimmune diseases and who are otherwise immune compromised should consult with their physicians before getting the vaccine. England’s National Health Service has issued a warning that people “with a history of a significant allergic reaction to a vaccine, medicine or food” may experience serious allergic reactions (anaphylaxis).
Both the Pfizer-BioNTech COVID-19 and the Moderna vaccine contain messenger RNA (mRNA) of the virus. The mRNA encodes the viral spike glycoprotein of SARS-CoV-2. The vaccines do not contain viral fragments. Nor do they contain preservatives. In addition to the active ingredient, the vaccines contain salts and sucrose. To protect the mRNA, the vaccines also include lipids. Of those lipids, polyethylene glycol may prove to be problematic to individuals sensitive to petrochemicals. (Polyethylene glycol is the main ingredient in anti-freeze.) The amount of polyethylene glycol in the vaccine is tiny, but people with chemical sensitivities can react to miniscule amounts of any chemical.
What do ME/CFS doctors say?
Dr. Bateman, from the Bateman Horne Center has issued the following statement:
“We [the world] certainly need COVID-19 vaccines desperately and everyone who is healthy enough for the vaccine should get vaccinated, starting with those at highest risk of COVID exposure. This includes healthy family members of vulnerable people. For the ME/CFS/FM population, my advice is to stay safely quarantined and wait a couple of months while the vaccine is distributed and broadly administered. Because of the large numbers and close monitoring, we should know fairly quickly how people do with the vaccines.This advice will apply as each new branded vaccine is approved and rolled out. In general, the people who should be most cautious are those who have previously had allergic reactions to vaccines or are prone to severe allergic reactions in general. If you decide to get the vaccine, be rested and stable prior to the vaccine, and plan on resting/relaxing for at least 72 hours afterward. Supportive care will include anything you usually do for flu symptoms, PEM, allergy flares, worsened orthostatic intolerance, etc. If anything, including a vaccine, makes you sick enough that you are unable to maintain adequate fluids and nutrition, or results in fluid and electrolyte losses (sweating, diarrhea, etc), it is always appropriate to seek IV fluids as a primary intervention.”
Here is Dr. Lapp’s thoughtful and informative response to the question:
Should I take the COVID-19 vaccine when it becomes available?
Nancy Klimas has also issued a statement on how to mitigate potential risks for ME/CFS patients:
ANZMES (New Zealand) has asked several experts for their recommendations on whether people with ME/CFS should get the vaccine, including Ros Vallings:
MEAction has posted advice from several ME/CFS physicians regarding how to prepare for getting the vaccine:
Cort Johnson has written a blog post about ME/CFS patients who experience long-term symptoms after the Covid vaccine – and explains why
“Long Vax” (Coronavirus Vaccine-Induced Injury) Starting to Make Inroads in the Medical Community
Dr. Nancy Klimas, Director of NSUINIM, shares her expertise on answering a popular question: “How do I safely take vaccines if I have ME/CFS?”
What do ME/CFS patients say?
Cort Johnson has run two extensive polls of vaccine side effects among ME/CFS Patients on Health Rising.
The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia
“Over 375,000 people have viewed Health Rising’s first vaccine poll and over 7500 people have taken it. The results have been pretty consistent over. The vast majority of respondents (70-80%) reported they were over the effects of the first Pfizer/Moderna shot within 2 weeks while fewer did 65/66% did for the Johnson & Johnson/AstraZeneca shot. The 2nd shot, as expected, produced more severe symptoms, but 70 and 72% still reported they were over its effects within 2 weeks. Again, AstraZeneca produced more symptoms with only 59% of AstraZeneca recipients reporting they were over the side effects of the second shot within 2 weeks.”
Health Rising’s Coronarvirus Infection and Vaccine Side Effect Poll: Take II
You can take the second poll on Cort Johnson’s site. Interesingly, “Health Rising’s “vaccine improvement poll” found that 29% percent of the approximately 1100 people answering the poll reported they’d improved, almost 30% of them “dramatically”. Thirty-three percent reported their improvements lasted at least a month.”
ANZMES Preliminary survey findings
ANZMES has issued a survey relating to reactions experienced by the community to the COVID-19 Pfizer BioNTech vaccine. ANZMES also sought to ascertain prevalence of Long COVID and COVID-19 infection in the community.
- 395 respondents identify with an ME/CFS diagnosis
- 144 with Fibromyalgia (some overlap with ME/CFS)
- 19 with COVID-19
- 5 diagnosed with, and 32 suspect, Long COVID
After Covid-19 Vaccination, Health of People with ME/CFS More Likely to Worsen Compared to Controls
In a recent survey by the You + ME Registry, which gathers research data on ME/CFS, found that the health of people with ME/CFS is significantly more likely to worsen after Covid-19 vaccination compared to controls. About five months after receiving their first or only shot of Covid-19 vaccine, 19% of survey participants with ME/CFS indicated their health had worsened, 9% reported that it had improved and 73% responded that it had not changed. This compares to 4% of controls (people who did not have ME/CFS) who said their health had worsened, 7% who indicated it had improved and 89% who reported it had not changed.
ME Association December Poll – continuing throughout January
The ME Association is running a survey on reactions to the vaccine.
Protecting the Most Vulnerable: Complexities of Vaccines and Chronic Illness
ME Action has a concise summary of the ways in which the covid vaccine affects people with ME/CFS.
What about ME/CFS patients who come down with Covid-19?
Dr. Bateman has put together some tips for doctors whose ME/CFS and FM patients contract Covid.
MORE INFORMATION
THE ME/CFS COMMUNITY AND COVID-19 – Solve ME has a page of information and FAQs addressing important concerns for the ME/CFS commmunity.
Long COVID Patient Fact Sheet – The American Thoracic Society has put together a useful fact sheet for people who suspect they have long covid.
New Template Letter to support ME/CFS COVID Vulnerability – The ME Association has produced a new template letter to help people with ME/CFS to be considered clinically vulnerable from COVID-19. This letter can be used to send to any party (medical, employers etc) to help them understand why people with ME/CFS are more vulnerable from the COVID-19 virus and should receive special consideration.
PODCAST: TLC Sessions – Living with Long Covid– A weekly podcast featuring clinicians and researchers.
RESEARCH
The AMMES library includes a number of abstracts and articles about long Covid. You can find a list HERE. (For articles and research directly addressing overlap between ME/CFS and Long Covid, you can search on the tag “Long Covid vs ME/CFS.”)
Novel Coronavirus Information Center – Elsevier’s free health and medical research on the novel coronavirus (SARS-CoV-2) and COVID-19
IACFS/ME Conference: Summary of Long COVID & ME/CFS Talks
NSU Only Institution to Receive $4 Million From CDC for ‘COVID Long Haulers’ Study
Solve Long Covid Initiative – A repository of Long Covid research and information.
RECOVER: Researching COVID to Enhance Recovery – The National Institutes of Health (NIH) created the RECOVER Initiative to learn about the long-term effects of COVID.
C19- Longhauler Advocacy Project
Our mission at COVID-19 Longhauler Advocacy Project is to advance the understanding of Long COVID and its associated conditions, and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research, and support.
TREATMENT
Chronic COVID Treatment Center™
Research, Prediction, Diagnosis and Treatment for Chronic COVID-19
The Long-COVID Treatment Trials Thus Far: Winners, Losers and the In-Betweeners
Cort Johnson summarizes the clinical trials that have been conducted so far, organized in a handy list.
RELATED NEWS
Medscape’s Covid-19 News page – Latest news about the Covid-19 pandemic, includes articles from various sources.
How Long COVID and Chronic Fatigue Syndrome (ME/CFS) Exhaust the Body
Excellent blog post by Cort Johnson discussing the research into the various mechanisms underlying the fatigue produced by ME/CFS and long Covid.
Need for COVID-19 vaccines create dilemma for fibromyalgia and chronic fatigue syndrome patients
“What if you had a condition where medications and vaccines have the potential to trigger long periods of debilitation? The need for COVID-19 vaccines has created quite a dilemma for these patients.”
Nearly half of all long COVID patients may have chronic fatigue syndrome
A new study has found abnormal breathing patterns and chronic fatigue syndrome is common in people living with long COVID.
HCWs with Long COVID report doubt, disbelief from colleagues
A number of healthcare workers (HCWs) suffering symptoms of long COVID have been surprised at the difficulties they have faced seeking treatment.
For patients with long COVID, chronic fatigue syndrome may offer a guiding star
“The deep fatigue Fisseha experiences is one of the most frequently reported long-term effects of COVID-19. It’s known as “post-exertional malaise,” a worsening of symptoms such as pain or fatigue after physical or mental exertion.”
The long and short of it – ‘Long-Covid’ is not unique in viral illnesses
Prof Akiko Iwasaki is an immunologist at Yale University. She views long-Covid as not unique and sees clear parallels with chronic fatigue syndrome. “It is very difficult to diagnose chronic fatigue syndrome and it is very difficult to treat it, because we don’t understand the underlying disease mechanism,” she explains. “It is one of those diseases that have been dismissed and patients have been mistreated in some cases.”
Medical science has an opportunity here to reject the psychologisation of illnesses it doesn’t understand.
How COVID-19 Could Reveal the Secrets of Chronic Fatigue Syndrome
Columbia scientists say the pandemic may offer valuable insights.
After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis
“I would wake up in the middle of the night with burning hands and feet, and I would look down and my feet would be bright red,” Minhas says. In addition, she continued to feel a tightness in her chest, and the brain fog was so intense at times, she says, she couldn’t remember a four-digit code for her phone.
Could long covid unlock clues to chronic fatigue and other poorly understood conditions?
Now, as millions of people nationwide are suffering from long-haul covid, Sbrana and an army of patient advocates are cautiously hopeful that new research may unlock clues to other conditions that appear to crop up after infections, including myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.
Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost
A Solve Long Covid Initiative White Paper
Predictions, Predictions: Swiss Model Predicts Who Comes Down with Long COVID
“This study – one of the first to employ predictive modeling – produced some interesting possibilities including that an immune deficiency found in a subgroup of ME/CFS patients (IgG3 deficiency) might open the door to long COVID as well. That finding, if validated, could provide a relatively easy-to-access test that could assess the risk of coming down with long COVID. It could also open the door to immune enhancement strategies such as IVIG that have shown to be helpful in a subset of people with ME/CFS.”
Increasing Data Link ME/CFS, Long COVID, and Dysautonomia by Miriam E. Tucker.
Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long COVID by Miriam E. Tucker – Treatments discussed in the article are:
•Pyridostigmine (Mestinon, Others)
•Oxaloacetate (benaGene)
•Inspiritol
•Stellate Ganglion Block
•Transcutaneous Auricular Vagus Nerve Stimulation
COVID-19 may be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
ALBANY, N.Y. (July 25, 2022) – UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19.