From the petition page:
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 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.
The medical grounds for this are listed below (from Dr Shepherd of the ME Association):
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:
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:
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:
New NICE guideline (draft):
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
LATEST: COVID-19, ME/CFS and the JCVI Priority Vaccination List.
This MEA blog includes a MEA template letter for you to download, amend and send to your GP (v2).
The blog explains that the MEA had received a reply from the JCVI (Joint Committee on Vaccination and Immunisation) to the two emails that were sent in January and February. The MEA had sought clarification as to whether people with ME/CFS are included in Group 6 of the JCVI priority list for vaccination against COVID 19.
The reply from the JCVI is available in the blog - followed by Dr Charles Shepherd’s response which includes some of the recent feedback received from people with ME/CFS who have now managed to obtain a priority vaccination or are awaiting one.
The JCVI are not currently willing to state that ME/CFS should be included as a specific disease in Group 6 as an underlying health condition and neurological disease.
However, they have repeated an important statement from the ‘green book’ and clearly said it only contains examples of neurological diseases and that they are not exhaustive.
More importantly, the JCVI has emphasised the green book statement which says that GPs should (not can) apply their clinical judgement when it comes to patients who have underlying health conditions that are likely to be exacerbated by COVID-19 infection.
As ME/CFS is very likely to be exacerbated by COVID-19 infection, this means that doctors cannot simply state that they are unable to place someone with ME/CFS into Group 6 because the JCVI does not allow them to do so.
Covid Vaccinations and ME/CFS: Community Feedback!
The MEA feedback blog includes -
1. Summary of Covid vaccination feedback.
2. MEA Trustees describe their vaccine experiences.
3. Feedback from people re: ME/CFS priority vaccination.
The COVID-19 immunisation programme
Extracts from of “COVID-19 - SARS-CoV-2” sections in The Green Book Chapter 14a. ('Coronavirus (COVID-19) vaccination information for public health professionals'.)
The COVID-19 immunisation programme
12 February 2021
Provisional recommendations for the use of the vaccine
The objectives of the COVID-19 immunisation programme is to protect those who are at highest risk from serious illness or death. The Joint Committee of Vaccination and Immunisation (JCVI) have set out a prioritisation for persons at risk. JCVI ranked the eligible groups according to risk, largely based on prevention of COVID-19-specific mortality.
Evidence from the UK indicates that the risk of poorer outcomes from COVID-19 infection increases dramatically with age in both healthy adults and in adults with underlying health conditions. Those over the age of 65 years have by far the highest risk, and the risk increases with age. Residents in care homes for older adults have been disproportionately affected by the COVID-19 pandemic. Table 2 sets out JCVI advice on priority groups for COVID-19 vaccination. Table 3 sets out JCVI advice on clinical risk groups for COVID-19 vaccination.
Covid-19 News from the Worcestershire County Council.
Extra testing to monitor and suppress spread of COVID-19 variant. Extensive surveillance of COVID-19 has identified a small number of cases of the COVID-19 variant first discovered in South Africa, in localities across England, including the WR3 area of Worcestershire that cannot be traced back to international travel.
Working in partnership with NHS Test and Trace, every person living in the affected area over the age of 18 is strongly encouraged to take a PCR COVID-19 test as soon as possible, even if they are not showing symptoms. Testing will take place from midday Saturday 6 February and continue for two weeks. Find out if your address is in the affected area.
For local Coronavirus (Covid-19) vaccination information see the Worcestershire County Council news items, and for information specifically for people affected by ME/CFS see further posts on the blog.
Take care, and stay safe everyone.
• Coronavirus (COVID 19) • Government U.K. • Local News • M.E. Association • N.H.S. • N.I.C.E. • Worcestershire
• Worcestershire County Council • Worcestershire M.E. Social Group