ANZMES asks experts for their recommendations on whether people with ME/CFS (pwME/CFS) should get the COVID-19 vaccine or not.
Dr. Ros Vallings, Howick Health & Medical Centre
COVID-19 can be a severe and debilitating disease which can lead to multi-organ damage and death in some people. If someone with ME/CFS catches COVID-19 it is likely to cause a significant exacerbation or relapse of their ME/CFS symptoms, as has been shown in the UK. Yet those experiencing a heightened immune system may be protected against catching viruses – although there is no guarantee. The Pfizer vaccine that is being administered in New Zealand is well studied and exceptionally safe and provides a high degree of protection. However, as with any vaccine some people with ME/CFS have an exacerbation of symptoms which overlap with the commonly reported side effects of the COVID-19 vaccines. A small percentage of people may have a more severe exacerbation of symptoms. I have many of my ME/CFS patients immunised now and not one has had a bad reaction to date. This may be because they used Dr. Nancy Klimas’ antihistamine suggestions which I recommend. I also provide a prescription for prednisone for patients to use if they get sicker, but it is not to be used long-term, and so far only one patient has needed it. For more information please read the recommendations on Dr. Vallings’ website: http://www.drvallings.co.nz/news-items/covid-19-vaccines
Emeritus Professor Warren Tate
I’m a strong advocate for vaccination of any family household member who is not health compromised as this provides protection for the unvaccinated, however I propose a cautious approach for all people with ME/CFS. This is because although the predictive analyses of immunologists might suggest the risk of ongoing relapse (of ME/CFS symptomatology) is small, the patient self-reporting suggests the risk is significant. For example if the person with ME/CFS experiences severe food allergies, chemical hypersensitivities, is prone to frequent debilitating relapses and has a significant compromised level of activity, then I would suspect a much higher risk in comparison to pwME/CFS who do not have these extra dimensions of the illness. In two international studies that came across my desk in regards to the Pfizer vaccine (administered here in NZ) after one dose, 10% reported severe effects on ME/CFS, 40% had mild-moderate effects and 50% had no effects. After the second dose, again 50% had no significant effects, yet nearly 30% had severe effects for at least one month, and 20% had moderate effects. Another study has reported 30% severe effects after the first dose. Anecdotally, of the three women in my university group who had the vaccine, one required hospitalisation for IV fluids after 2 weeks of being severely affected, another had two weeks of a moderate relapse and the third woman had no significant side effects. This seems to mirror the international patient reporting of the much larger groups, and made their results seem genuine to me. I believe therefore that I cannot provide a blanket recommendation for or against the vaccine, but rather believe that each individual should weigh up the decision based on their personal ME/CFS history. If pwME/CFS decide to vaccinate then I would suggest following Dr. Klimas’ antihistamine protocol.
Dr. Nancy Klimas, Nova Southeastern University
COVID kills people. It kills people with over-activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk for an ME relapse with these hyper reactive vaccines, you have to weigh the possibility of an ME relapse against the risk of death from COVID-19. For more information and for advice for people with mast cell activation syndrome visit: https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
In conclusion from our experts
There is not a definitive answer about whether pwME/CFS should or should not get the COVID-19 vaccine. As the condition is highly individualised, so too, is the response to the vaccine. Some have no effects, some only the expected immune response, some experience improvement of symptoms, and some a worsening of symptoms or a relapse. So what is appropriate for the individual is best considered in conjunction with your GP or specialist who has access to your personal medical history.
Should you choose to vaccinate
Center for Disease Control (CDC) states that people with ME/CFS or fibromyalgia should rest for several days before and after the vaccine, as anecdotal information shows that symptoms can resurface while the immune system is activated. The CDC provide information on what to expect before and after your vaccine: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html
Dr. Lucinda Bateman, Bateman Horne Center states that pwME/CFS should 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.
|Dr. Klimas suggests that before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10. Take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. Please note: that if you take the vaccine you should take the whole recommended dose, and the current vaccine Pfizer should be administered twice.
As always when dealing with medications and supplements please only do so under the direction of your General Practitioner or Medical Professional to ensure correct dosage administration and to avoid contraindications with your existing medications and personal medical history.
ANZMES is currently running a self-reporting survey of vaccination effects for pwME/CFS in NZ and will produce the results as soon as possible. We hope many will participate. If you require a survey sent by post, please let us know. https://forms.gle/BYEGhGMuaVoPVTrH6