A reader ask me to do a post on the COVID vaccines and people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis. The risk of death is a significant factor in making a personal decision. This is different than most vaccinations; we need to look afresh at this decision and not run off pro forma decisions for things like measles or extremely low risk-of-infection diseases (polio)
- Measles risk of death 2 in 10,000 or 0.02%
- For flu: [cdc]
- 18-49: 0.02%
- 50-64: 0.05%
- 65+: 0.85%
There are possible side-effects, which appear to be transitory for typical people.
A review of unblinded reactogenicity data from the final analysis which consisted of a randomized subset of at least 8,000 participants 18 years and older in the phase 2/3 study demonstrates that the vaccine was well tolerated, with most solicited adverse events resolving shortly after vaccination. The only Grade 3 (severe) solicited adverse events greater than or equal to 2% in frequency after the first or second dose was fatigue at 3.8% and headache at 2.0% following dose 2. Consistent with earlier shared results, older adults tended to report fewer and milder solicited adverse events following vaccinationPFIZER AND BIONTECH CONCLUDE PHASE 3 STUDY OF COVID-19 VACCINE CANDIDATE, MEETING ALL PRIMARY EFFICACY ENDPOINTS 18 Nov, 2020
I did a prior post on POTS as a consequence of vaccination. Fortunately, that is moot since most people with ME/CFS already have POTS! It is important to note that positive benefit can happen with some vaccines: Effects of vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome. that “Fifty percent [of ME/CFS] were rehabilitated successfully and resumed half-time or full-time work.”
There is concern on aluminum in vaccines and ME/CFS as documented in this 2016 post. With subsequest studies
- Myalgia and chronic fatigue syndrome following immunization: macrophagic myofasciitis and animal studies support linkage to aluminum adjuvant persistency and diffusion in the immune system 
” Instead of being rapidly solubilized in the extracellular space, injected aluminum particles are quickly captured by immune cells and transported to distant organs and the brain where they elicit an inflammatory response and exert selective low dose long-term neurotoxicity.”
- Aluminum in vaccines: Does it create a safety problem?  “The only problem that deserves attention is the suggested relationship between Al oxyhydroxide-containing vaccines and macrophagic myofaciitis or myalgic encephalomyelitis/chronic fatigue syndrome. Currently, definitive conclusions cannot be drawn on these risks and further studies must be conducted. Until then, Al remains the best solution to improve vaccine efficacy.”
- Aluminum adjuvants of vaccines injected into the muscle: Normal fate, pathology and associated disease Although generally well tolerated on the short term, it has been suspected to occasionally cause delayed neurologic problems in susceptible individuals. In particular, the long-term persistence of aluminic granuloma also termed macrophagic myofasciitis is associated with chronic arthromyalgias and fatigue and cognitive dysfunction.
More Recent Studies
- Neuroimmunology: What Role for Autoimmunity, Neuroinflammation, and Small Fiber Neuropathy in Fibromyalgia, Chronic Fatigue Syndrome, and Adverse Events after Human Papillomavirus Vaccination?  which states “Finally, we analyze the molecular mechanisms underlying the neuroinflammatory background in the development of adverse events following HPV vaccination and suggesting neuroinflammation, which could exacerbate the development of symptoms following HPV vaccination (though this is hotly debated), as a model for fibromyalgia pathogenesis.”
- Like POTS, FM already has this side-effect.
Which Vaccine has Aluminum?
For people in the US, we have a list of all vaccines and their ingredients here. You will see Human Papillomavirus (HPV) (Gardasil 9) cite above, contains amorphous aluminum hydroxyphosphate sulfate.
- Prolonged exposure to low levels of aluminum leads to changes associated with brain aging and neurodegeneration 
- Low levels of aluminum can lead to behavioral and morphological changes associated with Alzheimer’s disease and age-related neurodegeneration 
- Aluminum induces neurodegeneration and its toxicity arises from increased iron accumulation and reactive oxygen species (ROS) production 
The key issue is whether there is aluminum in the vaccine. If there is, it may worsen existing symptoms (especially neurological issues). The bad news is that appears that the current COVID-19 vaccines some contains aluminum (alum) and others do not.
- COVID-19 vaccines: neutralizing antibodies and the alum advantage 
- …Sinovac – PROFISCOV  does contain it.
- Pfizer’s covid-19 does not appear to contain it.
- Moderna vaccine does not appear to contain it either.
So the traditional and documented issue with vaccines (the aluminum in it) does not apply to two of the Covid vaccines. This implies that for FM, CFS/ME, there is not a supportable evidence-based reason to decline it.
For all ages, the risk of death is significantly higher than for the flu: [see cdc numbers above]
- 18-49: 0.02% vs 0.1 to 0.4% i.e. 20x greater risk
- 50-64: 0.05% vs 0.5 to 3.6% i.e. 72x greater risk
- 65+: 0.85% vs 6.3% to 20%, i.e. 24x greater risk
The side effect risks are low and appear to be transient. “Long Covid” – the name given to a CFS-like syndrome after a COVID infection is likely to make any existing ME/CFS or FM much worst. This is estimated that 10% of people are prone. The probable model is that long covid has resulted in a stable gut bacteria dysfunction (for a similar documented-over-several-years similar scenario see this post)
One study of people hospitalized with COVID-19 in Italy found that 87.4% reported experiencing at least one symptom, often fatigue or shortness of breath, 2 months after discharge. Among people with milder infections, however, the prevalence of long COVID has been unclear. Data from the COVID Symptom Study app suggest that 1 in 10 people with the illness experience symptoms for 3 weeks or moreCOVID-19 Symptoms: Longitudinal Evolution and Persistence in Outpatient Setting 
Get the vaccine — there is no evidence-based reason not to (especially if there is no aluminum in it). Not taking the vaccine means significant risk of death and likely more severe CFS/ME or FM.
Post Script – I had COVID… Should I get the vaccine?
Answer is a simple yes. Protection with the vaccine is expected to last longer… Think of it as a booster shot!