Russell Fleming, Content Manager, ME Association
Today, we share the correspondence between a person with ME/CFS and Matt Hancock the Secretary of State for Health and Social Care.
The MEA template letter created by Dr Charles Shepherd has been updated (V4) for you to use in order to try and get yourself into Group 6 on the vaccine priority list and receive a Covid vaccine sooner.
“In all cases, you should speak with your GP if you feel you should be vaccinated sooner. I want to assure you that we are committed to vaccinating according to need, and you will not be left out or forgotten in this process.”
Matt Hancock, MP, Secretary of State for Health and Social Care
Feedback to the ME Association tells us that the situation across the UK is far from ideal, with some finding their GPs and vaccination centres are quick to put them into Group 6 when asked, while others are being refused or told to try again later.
We will continue our efforts to try and get ME/CFS accepted and will be having more discussions with the Chief Medical Officer in England and the Joint Committee on Vaccination and Immunisations (JCVI). We have also written to the CMO in Scotland, and to the health authorities in Wales.
Keep an eye on the MEA website and social media for more updates.
Feedback
If you have any experiences you would like to share – about vaccine priority or about the vaccines themselves and your reaction to having them – then please leave your comments on MEA social media, or send an email to: Feedback@meassociation.org.uk
Hi, I'm a member with M.E.
I commented recently on MEA Facebook about Group 6 priority vaccinations and how hard I found it to get booked in for one; even using the letter template that the ME Association has provided.
In my quest to get a vaccination I also contacted Matt Hancock as he is my local MP as well as being the Secretary of State for Health and Social Care.
I shared his reply with my GP and have now been placed in Group 6 and will be having a vaccination today. I wanted to it with you in case it might help anyone else…
Matt Hancock MP, Secretary of State for Health and Social Care
Dear XXXXX,
Thank you for your email.
I am so sorry to hear of your anguish, and that you feel that you are suffering alone. I realise how hard this pandemic has been, especially for vulnerable people such as yourself who have ME.
The expert Joint Committee on Vaccination and Immunisation's (JCVI) advised prioritisation list for the initial phase of the COVID-19 vaccination programme was specifically aimed at the prevention of COVID-19 mortality and the protection of health and social care staff and systems.
I understand that currently ME is not listed as a specific condition in the priority list, and that those with “chronic neurological disease” are included in priority group 6.
However, the JCVI has recently clarified that the examples of clinical risk groups listed in the “Green Book: Immunisations against infectious disease” are not exhaustive.
Their advice states that within these Groups, clinical judgment should be applied 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.
In all cases, you should speak with your GP if you feel you should be vaccinated sooner. I want to assure you that we are committed to vaccinating according to need, and you will not be left out or forgotten in this process.
More information and support, including advice on contacting your GP, can be found on the ME Association website here:
LATEST: COVID-19, ME/CFS and the JCVI Priority Vaccination List
I also know that many people such as yourself have observed similarities between the long term impact of coronavirus, sometimes known as long Covid or post viral fatigue, and the symptoms of ME.
Given these similarities, I agree that it would be extremely useful for researchers to share knowledge and best practice for treating these two conditions and I know this is something that is being looked at.
Once again, you are not alone in this pandemic. I care very much, and if there is anything I can do to help you, please don’t hesitate to let me know.
Thank you again for taking the time to write to me.
Regards,
Matt
Rt Hon Matt Hancock MP
Member of Parliament for West Suffolk and Secretary of State for Health and Social Care
Email to Matt Hancock MP, from a constituent with ME/CFS
10 February 2021
Dear Mr Hancock ,
My name is XXXX and I am one of your constituents, here in West Suffolk.
I am a 38-year-old mother of 3. I was diagnosed 16 years ago with M.E. a chronic neurological condition. There is no treatment, and no real help.
I would like to ask why people like me have to suffer alone in this pandemic? Why people like me can't be recognised by you, NHS England and the JCVI on the list for vaccinations as clinically vulnerable?
People like me who shield from the world to protect themselves with zero help from GPs who state they are sent lists and will stick to them even though our condition is recognised.
Surgeries who are swamped by people with Long-Covid which is basically M.E . Thousands now realising that the condition that can't be treated is actually real and debilitating.
I read that you contracted Covid Mr Hancock. And I see you are now working again and doing your duty for our country. Could you imagine trying to do this with my condition or with Long-Covid?
Or do you think you could prevent someone having exacerbated symptoms on top of already having a Long Covid-type illness?
I'm battling this condition and this system alone, fighting for any little thing that could improve my physical symptoms and my mental health.
As our health secretary and my M.P. I wanted to draw your attention to people like me who are suffering all over the country.
We need help! We should no longer feel ignored.
Kind regards.
XXXXX
The ME Association
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