To be clear, we are not anti-vaccine and welcome the Covid19 vaccines as part of the pandemic solution.
In this blog, we ask how patients can give ‘informed consent’ when so little is known about the long-term effects of the Covid19 vaccine and how the vaccine will affect patients already diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Within the ME/CFS patient community, there is anecdotal evidence of previous vaccines occasionally triggering ME/CFS, however medical science has not yet proven this to be the case. In a perfect world, the medic administering the Covid19 vaccine will talk the patient through the possible risks and the fully informed patient will make their own decision whilst acknowledging these risks. However, how does this work when ME/CFS is widely misunderstood by the medical profession? This blog is in reaction to an image that has been circulating widely on social media today. We researched its origin and it comes from this website – https://www.ukmedfreedom.org/. On the homepage, the organisation states:
We are an alliance of UK medical professionals, scientists and lawyers who believe that the Government’s response to COVID-19 is misguided and not based upon the best available scientific evidence. We are campaigning for Medical Freedom, Informed Consent and Bodily Autonomy to be preserved and protected.
The image below comes from a https://www.ukmedfreedom.org/resources/vaccine-documents:
COVID-19 Vaccine – Informed Consent Form 01/12/2020 (from the abovementioned webpage)
Purpose: This form has been designed to support the Informed Consent process for Covid-19 vaccinations.
FOR THE LEGAL ADMINISTRATION OF ANY CV19 VACCINE, BOTH PARTIES MUST READ AND SIGN THIS
• Doctors (or their delegated Health Care Professionals)
• Patients receiving Covid-19 Vaccine
This document is based on the Montgomery Judgement and GMC Guidelines.
We understand that this document was sent to GPs in England this week.
The notion that ME/CFS can occasionally be triggered by vaccines is not new and is a view that is widely accepted amongst the ME/CFS patient community. As the vaccines are being rolled out quickly due to necessity, long-term implications are not known, as acknowledged by the document above. Potentially, ME/CFS could be triggered by both the Covid19 virus and Covid19 vaccines so it is for the individual to weigh up the risks. ME/CFS is triggered by an immune response, unfortunately, that’s how vaccines work. They trigger an immune response to fight off the virus.
We have a few thoughts about the suggestions contained within the screenshot above.
- How can medics make patients aware of the risk of ME/CFS as a result of the vaccine if they don’t understand what ME/CFS is?
- If some GPs consider ME/CFS to be psychosomatic, will they understand why it is contraindicated?
- How can consent be given with so many false beliefs surrounding ME/CFS?
Since our very inception, we have highlighted that only around 10% of medical professionals worldwide have received any training on ME/CFS. This means that misinformation and stigma have flowed unchecked for decades. In a recent survey , 71.4% said they had had no prior teaching on ME/CFS, 39.4% of GPs in the UK said they believed ME/CFS to be psychosomatic/psychological, and only 11.7% were confident in diagnosing ME/CFS. We would ask how these medical professionals could inform patients what ME/CFS is before asking for their consent to have the Covid19 vaccine? We should point out that, of those who have had training, many will have been told that ME/CFS is psychological as medical training often has a psychological bias where ME/CFS is concerned.
This leads on to our point about understanding why ME/CFS is contraindicated. It is common sense to assume that GPs and other medical professionals who believe ME/CFS to be psychological/psychosomatic would not understand that the vaccine could trigger serious symptom exacerbation for ME/CFS patients. The ME Association has stated –
….. there is also a possibility that they [vaccines] could trigger a more significant exacerbation of ME/CFS symptoms.
ME/CFS symptom severity can be affected by a range of factors including viruses and vaccines, over time patients learn how their own body reacts to external factors. It is for individual patients to weigh up the risks of having the vaccine over the damage the virus could cause to their already chronically sick body. Most ME/CFS patients will have already researched the pros and cons and contacted their preferred ME/CFS charity for advice before booking a vaccine appointment. They do this because they know that the medical professional administering the vaccine will probably not know much about ME/CFS or the possible implications of having the jab on their ME/CFS symptoms.
In terms of vaccinating the general public against Covid19, achieving ‘informed consent’ will be exceptionally difficult. There are widespread stigma and misunderstanding of ME/CFS and many believe that it is ‘just tiredness’. We know this from the thousands of conversations we have had with ME/CFS patients and from speaking to members of the public at educational events. Very few fully understand that it is a complex neurological disease. Will they give the decision adequate weight? Will they see avoiding Covid19 as more desirable than preventing ‘just tiredness’?
Given that all of the Covid19 vaccines have been specifically made to prevent severe Covid19 to reduce hospitalisations and decrease the risk of global healthcare systems being overrun, ‘mild’ covid19 will not be eradicated. ‘Mild’ Covid19 is triggering ME/CFS in some Long Covid patients. Post-Viral Fatigue Syndrome (PVFS) is one of the four Long Covid ‘syndromes‘. PVFS develops into ME/CFS if symptoms persist longer than 4-6 months after acute infection.
It is a bit of a rock and hard place situation. Both the virus and vaccine have the potential to trigger ME/CFS in a minority of patients. However, we believe that patients should be fully informed of the risks before being vaccinated so they are able to give ‘informed consent’. Patients cannot give consent if they have no idea what they are consenting to, this is the case for every vaccine, not just Covid19. ME/CFS can be triggered in anyone regardless of age, race, gender, or previous physical fitness. Transparency is needed….urgently, due to the sheer number of people who are going to be part of this mass vaccination programme in the UK and worldwide.