by Dr Charles Shepherd, Medical Adviser, ME Association
This is a very brief update on all the actions we are taking to try and ensure that people with ME/CFS are included in group 6 of the JCVI priority list.
If you have ME/CFS and have had the vaccine, then we’d like to hear how you got on with it.
Please send a summary email to: Feedback@meassociation.org.uk and let us know why you had it and which vaccine you received.
1. ME Association Template Letter
We are receiving plenty of reports from people throughout the UK who have sent this letter to their GP surgery and have been placed in JCVI group 6 as a result.
But not all GPs and GP surgeries are willing to do so.
Whilst it is important to make sure that your GP knows that ME/CFS is classified as a neurological disease by both WHO and NHS England, the important point to make is that ME/CFS should be included in group 6 of the JCVI list because ME/CFS is a condition that is very likely to exacerbated by any new infection, especially COVID-19.
Supporting and referenced evidence for this is contained in the MEA template letter, which CAN BE DOWNLOADED HERE as a Word document (V3).
We have also reproduced the template letter in full below, so you can copy and paste the parts you feel are most relevant into your own letter or email:
- Please modify the letter template to suit your individual circumstances.
- Then copy and paste to your own letterhead or email.
- Make sure it’s dated and signed, contains your home address and date of birth – then either email it or send by royal mail.
Dear [YOUR GPs NAME],
Request to be included in Group 6 for Covid vaccine priority.
I have a diagnosis of ME/CFS, and I believe I should be included in ‘Group 6’ on the Covid vaccination priority list.
The ME Association (MEA) has suggested that I should make this request because ME/CFS is a recognised neurological condition and there is an increased risk that Covid infection could cause a significant relapse and additional complications.
The MEA has provided the following information for you to consider and has confirmed that ME/CFS is being included in Group 6 by other GPs, Covid vaccination centres and at least one health authority in Wales – with more expected to follow throughout the UK.
1. People with a chronic neurological disease are listed as having an underlying health condition in Group 6 in the JCVI guidance. See page 9 in Chapter 14a of the ‘Green Book’ on Covid vaccine priority: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/955548/Greenbook_chapter_14a_v6.pdf
2a. The World Health Organisation (in ICD10 section G93.3) recognises ME/CFS as a neurological disease (as it does in ICD 11 which will become effective in Jan 2022):
- ICD 10: https://icd.who.int/browse10/2019/en#/G93.3
- ICD 11: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314
2b. SNOMED CT, the NHS electronic classification system, has accepted the WHO ICD classification for ME/CFS: https://termbrowser.nhs.uk/
2c. NHS England acknowledge ME/CFS as a long-term neurological condition: https://www.england.nhs.uk/ourwork/clinical-policy/ltc/our-work-on-long-term-conditions/neurological/
2d. The Scottish Government accepts the WHO definition for neurological diseases: https://www.gov.scot/publications/neurological-care-support-scotland-framework-action-2020-2025/pages/4/
3a. The JCVI ‘Green Book’ guidance (page 10) states that:
“The examples above are not exhaustive, and, within these groups, the prescriber should apply clinical judgment to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself.”
3b. The Secretary of State for Health and Social Care, Matt Hancock, has commented on this guidance and said that it should also be applied to people with ME/CFS: https://meassociation.org.uk/2021/02/matt-hancock-on-me-cfs-covid-vaccine-priority/
4. Even though ME/CFS does not feature as a named example of a neurological disease in the ‘green book’ list of neurological conditions, the guidance makes it clear that the examples are not intended to be exhaustive.
5a. New infections are probably the commonest cause of exacerbation or relapse of ME/CFS – as noted in section 3.3.2 of the Chief Medical Officer’s Working Group Report on ME/CFS: https://meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf
5b. This is also noted in section 1.6.4 of the new (draft) NICE clinical guideline on ME/CFS which will become operational in April 2021: https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
5c. Chu et al (2019) in an epidemiological study examining outcomes in ME/CFS reported that infections are the most common factor for having a deleterious impact on the course of the condition: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/
6. Patient evidence to the MEA also indicates that almost everyone with ME/CFS who has caught COVID-19 has had a significant and/or prolonged relapse of ME/CFS. This is not surprising given the considerable degree of clinical overlap between ME/CFS and Long Covid.
7. The MEA has now received information from Dr David Hefin, Member of the Welsh National Assembly for Caerphilly, that the Aneurin Bevan University Health Board has accepted people with ME/CFS into Group 6 of the JCVI priority list. Other health authorities in Wales have also been contacted.
I would therefore be very grateful if you could confirm that I have been added to the Group 6 list.
[You might like to include a brief paragraph here about your own situation and ME/CFS severity especially if attending a vaccination centre would prove too difficult. We have heard that some people with ME/CFS have received the vaccine at home.]
To ensure that I can be contacted as soon as I am eligible, please add my mobile number to my file as a primary means of contacting me.
Thank you very much in advance for your time and indeed for everything you and your other NHS colleagues are doing during this pandemic.
With kind regards,
Your Full name. Address. Contact phone number. Date of birth. NHS Patient Number.
Information we have received from Dr David Hefin, Member of the Welsh National Assembly for Caerphilly, makes it clear that the Aneurin Bevan University Health Board accepts that people with ME/CFS should be included in group 6 of the JCVI priority list (see below).
The board employs 14,000 staff in Blaenau Gwent, Caerphilly, Monmouthshire, Newport, Torfaen and South Powys.
I am writing to the other six Welsh Health Boards today to ask them to confirm that they are applying the same policy.
In view of the very clear statement from the Aneurin Bevan Board in Wales, we are writing to the Scottish Chief Medical Officer and Jeanne Freeman, Cabinet Secretary for Health, to ask them to clarify their official position on group 6 and ME/CFS.
Now that GPs are being asked to actively identify and inform all patients that should be included in group 6, I will be following up my correspondence of last week with Professor Chris Whitty, the Chief Medical Officer for England, and Professor Stephen Powis, the medical director for NHS England.
Read my correspondence HERE.
This will include concerns about the way in which the NHS coding system for group 6 eligibility is causing problems in relation to ME/CFS.
5. Clinical Commissioning Groups (CCGs)
If you are not having any success with persuading your GP to include you in group 6, you could also write to your local CCG.
This is a response from a CCG in Salford:
“Salford CCG wrote to one of our members (whose GP had said they had no power to move her into group 6) that, if the GP wrote, they will recode her in 6.”
We will continue to provide regular updates on the situation on MEA social media.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, campaign, and invest in biomedical research, then please donate today.
Just click the image to the left or click here for one-off donations or to establish a regular payment.
You can even establish your own fundraising event on JustGiving.
ME Association Registered Charity Number 801279