Dr Charles Shepherd, Hon. Medical Adviser, ME Association
We have now received a reply from the JCVI (Joint Committee on Vaccination and Immunisation) to the two emails that were sent in January and February. We 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 below – followed by my response which includes some of the recent feedback we have 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.
They should be applying their clinical judgement in this situation and taking your own circumstances into account.
- The MEA has prepared a template letter than you can amend with your own details and send to your GP to request priority vaccination. The letter can be DOWNLOADED HERE (when you reach the next page, click on the blue link provided to download the letter).
Letter received from JCVI – 08 February 2021
Dear Dr Charles Shepherd,
For this first phase of the COVID-19 mass vaccination programme, JCVI has advised that, the first priorities should be the prevention of COVID-19 mortality and the protection of health and social care staff and systems.
Accordingly, the order of priority was based on estimates of the risk of dying from COVID-19. The priority order for Phase 1 reflects the estimated number of persons needed to vaccinate to save one life. It is estimated that the Groups prioritised represent around 99% of preventable mortality from COVID-19.
Phase 1 is largely prioritised by age due to the very strong association of older age and increased mortality from COVID-19. Persons aged >16 years with underlying health conditions that put them at higher risk of dying from COVID-19 are also included in Phase 1 of the programme. The Committee has not identified any robust data to indicate that, as a Group, persons with ME/CFS are at higher risk of dying from COVID19 (see references below).
The Green Book immunisations against infectious disease (weblink included below) provides the details of the clinical risk Groups in persons 16 years of age and over who should receive COVID-19 immunisation in Phase 1. The examples included are not exhaustive, and the advice states that 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.
The Committee has started the process for the development of advice for the second phase of the immunisation programme. Identifying the remaining preventable morbidity burden from COVID19 is part of the considerations for phase 2 of the programme. If you have specific scientific evidence related to ME/CFS and the risk of increased morbidity from COVID-19, and can share these with JCVI, please let us know. The Committee will review these as part of its considerations for phase 2 of the programme.
Dr Charles Shepherd’s reply – 09 February 2021
Dear Professor Lim and Dr Crofts
Thank you for confirming that the examples of specific diseases in Group 6 of the JCVI list are not exhaustive and that doctors should be applying their clinical judgement in relation to the inclusion of people who have an underlying health condition that is likely to be exacerbated by Covid-19.
The MEA is already highlighting these two important points in a pro forma letter that I have prepared for people with ME/CFS.
This letter also explains the reasoning as to why someone with ME/CFS should be able to qualify under Group 6 criteria in relation to having a condition that is likely to be exacerbated by Covid-19 infection.
We are now receiving regular feedback from people who are been placed in Group 6 and vaccinated as a result of them using this letter.
A few examples:
“I have just had a lovely phone call from my doctor after contacting them to ask if I was in Group 6. Apparently, I am not but she agrees that this is a mistake and ME clearly should mean inclusion into Group 6. They are now trying to get my Group changed as it is not the doctors who set the Groups.”
“I emailed the letter to my GP practise yesterday and I’ve had a positive response today. My vaccine is now booked for this Friday. Many thanks to Charles Shepherd.”
“Thanks so much I used the pro forma letter and have been advised today I will now be in Group 6. Really appreciate all the support you have given.”
“Thank you for all your help and support. I emailed my go practice on Friday with your letter and today invited for a vaccination on Friday.”
“Thank you for this letter. I sent it to my GP and have heard back today that I am being classified as Group 6.”
“I contacted my GP surgery using part of the letter (I was limited to the number of characters I could use but said I would send additional info if they needed it) and they confirmed that I am in Group 6 – thank you for all your advice and support with this. I’m so relieved!”
“I know someone who works in vaccination centre. They had some vaccine spare that would go to waste, they looked up whether ME is eligible and said it was, so I got my vaccine today. Such a relief for my family. I am very lucky.”RECENT FEEDBACK FROM PEOPLE WITH ME/CFS
As far as supportive medical evidence in relation to the role of infection in both triggering and exacerbating ME/CFS in concerned, the case for doing so is made on the following basis:
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.
However, we are also hearing from people who have been told that their doctor or GP surgery cannot add ME/CFS to the Group 6 list (even where they want to do so) because it is not listed in the green book as a specific condition.
And as a result, it appears that ME, CFS or ME/CFS are not included in the NHS coding system for Covid vaccination status.
The simple solution would be to use ME/CFS as a specific named example of an underlying health condition (on page 10 of the green book) where Covid-19 is likely to cause a significant exacerbation or relapse of symptoms.
I appreciate that NHS coding is not the direct responsibility of the JCVI.
However, please you can draw this to the urgent attention to whoever liaises between JCVI and NHS coding – because this is almost certainly going to become a problem that is not restricted to people with ME/CFS.
And please could you seriously consider the proposal above to use ME/CFS as an example of a condition that is going to be exacerbated by Covid-19.
Dr Charles Shepherd,
Hon Medical Adviser, ME Association.
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
Image credit: 123RF/SasirinPamai