Update: 01 February 2021 P.M.
We have just received a rapid response from the CMO/Chris Whitty:
Dear Dr. Shepherd,
Many thanks for your email.
I am keen this goes through JCVI in the normal way.
Best wishes
Chris
Dr Shepherd's reply:
Thanks Chris,
The only response I am receiving from the JCVI is as follows:
Thank you for your email which has been noted. The Secretariat are dealing with a large volume of queries concerning the advice of JCVI on priority groups for COVID-19 vaccination and will endeavour to respond queries on this. Your patience is gratefully appreciated.
The JCVI are holding their next committee meeting on Wednesday 3rd February.
I hope this matter can be added to the Agenda.
BW
Charles
Summation
Reading between the lines, a very rapid response from Chris Whitty suggests to me that he has been in touch with the JCVI today and told them to respond to my previous email. I understand that there is a JCVI meeting on Wednesday this week – where amendments to the JCVI list may well be on the Agenda.
Original Blog: 01 February 2021 A.M.
Our medical adviser, Dr Charles Shepherd, this morning sent the following email to Professor Chris Whitty and the Joint Committee on Vaccination and Immunisation seeking an urgent reply to our questions about their failure to prioritise people with ME/CFS for Covid vaccinations.
Here is the text of his email:
I have not received a reply to the email that was sent on 4th January (as below) regarding the inclusion of people with ME/CFS in the JCVI group 6 category covering neurological diseases.
The situation is becoming far more urgent because we are now being regularly informed that people with ME/CFS are being told by their doctors, many of whom are not aware that ME/CFS is classified by NHS England as a neurological disease, that they cannot be included in group 6 – even though they are likely to suffer an exacerbation or significant relapse of their ME/CFS if they contract COVID-19.
The problem for people with ME/CFS is largely arising because GP surgeries are not taking proper note of the information on Covid vaccine priority in the “green book”.
Included in the group 6 list is “chronic neurological disease”.
The green book then details some examples of chronic neurological diseases and clearly states that it is not an exhaustive list:
“This includes individuals with cerebral palsy, severe or profound learning disabilities, Down’s Syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neurone disease and related or similar conditions.”
While ME/CFS is not specifically mentioned, it is important to note that epilepsy is specifically listed and that on the NHS England website for neurological conditions it lists “ME” next to “epilepsy” under the sub-category of “Intermittent and unpredictable conditions”, thereby categorising them as a similar type of condition.
Furthermore, and most importantly, underneath the list of underlying health conditions which put individuals in priority group 6, the green book also states the following:
“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.”
This is in addition to the JCVI guidance which also states that:
“other groups at higher risk, including those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should also be offered vaccination alongside [priority group 6].”
This problem could easily be solved by either including ME/CFS in the list of neurological conditions in the green book information, or by an announcement from the CMO or JCV!
I look forward to receiving an early response
Yours sincerely
Dr Charles Shepherd, Hon Medical Adviser, ME Association
Copies to:
Carol Monaghan MP – Chair, All Party Parliamentary Group on ME
Countess of Mar, Forward ME group
Baroness Rosalind Scott
Baroness Ilora Finlay
Professor Sir Stephen Holgate – Chair, CFS/ME Research Collaborative
Sonya Chowdhury, CEO – Action for ME
___________________________________________________________________
January 4th 2021
JCVI COVID VACCINE PRIORITY LIST AND ME/CFS
Dear Professor Whitty and the Joint Committee on Vaccination and Immunisation
The ME Association is starting to hear from people with ME/CFS who are being told by their GP that ME/CFS is not an underlying health condition in relation to group 6 in the COVID-19 vaccine priority list that has been drawn up by the JCVI.
I believe this is incorrect because:
1 Both the World Health Organisation (in ICD10 section G93.3) and NHS England classify ME/CFS as a neurological disease:
2 People with a chronic neurological disease are listed as having an underlying health condition in group 6 in the JCVI guidance:
3 New infections are 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
and in section 1.6.4 of the new (draft) NICE guideline on ME/CFS:
https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
4 Patient evidence to the MEA indicates that almost everyone with ME/CFS who has caught COVID-19 has had a very significant and/or prolonged relapse of their ME/CFS.
I would therefore be grateful if you could confirm that people with ME/CFS should be regarded as having an underlying neurological health condition which makes them more vulnerable to COVID-19 infection in relation to the JCVI COVID-19 vaccine priority list.
Regards
Dr Charles Shepherd
Hon Medical Adviser, ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks MK18 4DF
Website: www.meassociation.org.uk
Tel: 01280 818 963
Copy to:
Carol Monaghan MP – Chair, All Party Parliamentary Group on ME
Countess of Mar, Forward ME group
Baroness Scott
Baroness Finlay
Carol Monaghan MP – Chair, All Party Parliamentary Group on ME
Countess of Mar, Forward ME group
Baroness Rosalind Scott
Baroness Ilora Finlay
Professor Sir Stephen Holgate – Chair, CFS/ME Research Collaborative
Sonya Chowdhury, CEO – Action for ME
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 opposite or click here for one-off donations or to establish a regular payment.
You can even establish your own fundraising event on JustGiving.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279