ME and the COVID-19 vaccine

Across Leeds and the UK the ME commuinity has raised understandable concerns regarding the COVID-19 vaccine and whether it is safe to get.

Various experts including the Center for Complex Diseases, the ME Association, the Institute for Neuro-immune Medicine and Dr Charles Shepherd have offered their recommendations.

General consensus is that most clinicians are recommending that people with ME get a COVID-19 vaccine at the earliest available opportunity, but take every precaution they can to offset possible side effects that may result in relapse.

Dr. Charles Shepherd, of the ME Association, summarised that: “taking a risk of having an exacerbation of existing ME/CFS symptoms (from the vaccine) is a small price to pay for having a high degree of protection against a life threatening infection that we are all going to have to live with, just like flu, for the foreseeable future.” You can view his guidance in full here.

The ME Association and Action for ME have created template letters for sufferers to send to their GP requesting to be added to group six of the JCVI’s priority list.

#MEAction UK and Dr Charles Shepherd have also written to Professor Chris Whitty and the JCVI asking for people with ME to be officially added to group 6, rather than patients having to individually contact their GPs.

Many people are having great success when contacting their surgerys, such as Samantha Cook, from Huddersfield, who said:

“I requested a template letter to send to my GP along with the letter and information on ME sent to Chis Witty.

Having a template letter made the process stress free and easy to approach my GP. Within two days I had a text from GP practice inviting me to go for the vaccine the following week.

My husband will now also be getting his vaccine early due to being my registered Carer. Many thanks to Charlie Wainwright and ME action for the support given.”

Clare Hall, from Leeds, also recieved a positive response:

“I sent the ME Association template letter and followed it up once they started on group 6. I was told that all patients with “chronic fatigue” (their term) were being put in the level 6 group despite not being on the official list… and to bear with as its a big group. I’m really happy my surgery has included us but it still feels like a shun when we technically are on the list.”

You can access the template letters here: The ME Association / Action for ME.