Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine

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ME (or CFS as some still call it) is a chronic neurological condition that affects around 250,000 people across the UK, 75% are too unwell to work or study, 25% are completely housebound or bedbound. It has a worse quality of life score than other common conditions like cancer, but only gets 5% of the research funding that similar conditions like MS receives. There are no effective treatments available, and patients are left trying to manage symptoms often with little medical input.

When the Joint Committee on Vaccination and Immunisation (JCVI) published the 9 priority groups for the Covid19 vaccine rollout in the UK in late 2020, chronic neurological conditions were listed under group 6. However, when the small print was published, ME was not specifically listed, and therefore when ME patients checked with their GPs that they were on the list, many (including me) were told “the computer system has not flagged you as someone who is vulnerable and in group 6”. The ME Association, Action for ME, and ME Action UK have been clear that there is good evidence that people with ME are vulnerable to Covid19 and should be included in group 6 (some of which is listed below).

The ME Association has been writing to the JCVI for many weeks, only to be told that it is a matter of clinical judgement for GPs as to whether people with ME are added to the list for vaccination. This leaves it up to the decisions of individual doctors as to whether people with ME are vaccinated, creating a postcode lottery where only those who have the capacity to write to their doctors, and who have supportive doctors who have the time to do the research about the risks that Covid19 poses to ME patients, are able to get the vaccine under group 6. Although some ME patients have been successful in gaining their GPs support, many have not been and are worried that they will need to continue to isolate for the best part of another year until the vaccine is rolled out across the healthy population. With the publication of the ONS statistics showing people with disabilities are much more likely to die from Covid19 this week, it seems even more farcical that people with such a disabling illness should be left off the list.

Therefore, with groups 5 & 6 being offered the vaccine in the coming days, it is essential that the JCVI do the following as soon as possible:

1.  Apologise to ME/CFS patients for the distress they have caused during the past few weeks.

2. Immediately amend the guidance so that ME/CFS is listed under the list of chronic neurological conditions in group 6.

3. Speak to the NHS IT department to ensure that the coding on the computer system reflects this change so that people with ME/CFS are flagged as being in group 6.

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The medical grounds for this are listed below (from Dr Shepherd of the ME Association):

https://meassociation.org.uk/2021/02/latest-covid-19-me-cfs-and-the-jcvi-priority-vaccination-list/


1. Infections are the main trigger factor for ME/CFS.

This is well recognised, and I can supply supportive research evidence if required.

We also know from previous published research that the SARS outbreak in Toronto back in 2003 resulted in cases of an ME/CFS-like illness:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071317/

2. New infections are a very common cause of relapse or exacerbation of ME/CFS. 

Again, this is well recognised by doctors who are involved in managing people with ME/CFS.

Chu et al (2019) carried out an epidemiological study into the outcome of ME/CFS and reported that infections are the commonest factor for having a deleterious impact on the course of ME/CFS:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/

The fact that new infections can cause a significant exacerbation or relapse of ME/CFS is also referred to in both the CMO Working Group Report on ME/CFS and in section 1.6.4 of the new (draft) NICE clinical guideline on ME/CFS:

CMO Working Group Report:

https://meassociation.org.uk/…/uploads/CMO-Report-2002.pdf

New NICE guideline (draft):

https://www.nice.org.uk/…/gid…/documents/draft-guideline

3. Evidence from people with ME/CFS who contracted COVID-19 infections.

The ME Association has been collecting patient evidence since April last year from people with ME/CFS who have suffered a significant and/or permanent relapse of their ME/CFS symptoms after catching Covid-19.

We can supply anonymised examples if required.

4. It has been estimated that around 10% of people who catch Covid-19 develop Long Covid – a post-viral condition that is very similar to, and in some cases the same, as ME/CFS

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Photo credit: https://www.susanelainejones.com/
Used with permission.

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With thanks to members of the Cambridge ME support group for help with proof reading and distributing.
https://cambridgeme.org.uk/
https://www.justgiving.com/fundraising/cambridgeshireme