Continuing pressure on NHS to vaccinate people with ME in light of survey results

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Photo credit: Andrew Parsons No10 Downing St

As reported last week, the preliminary findings from the joint survey between #MEAction and Action for M.E demonstrated that most respondents with ME experienced an exacerbation of their underlying disease and  prolonged illness from Covid-19 itself.

The survey is still live for people who with ME who have had Covid-19 to take part.

In light of this new evidence of exacerbation, #MEAction UK have again written to Matt Hancock and Stephen Powis to make them aware of the risk to people with ME in not being able to access the Covid-19 vaccine as a priority.

This is a follow up to our email to Mr Hancock and Professor Powis in March, when we highlighted the omission of advice to vaccination centres and GPs that they were able to use their clinical judgment to include people with underlying health conditions in group 6. An issue that was causing people to be refused the vaccine as part of the group 6 roll out, despite the use of a template letter to contact their GP.
We have urged Mr Hancock and Prof Powis to take urgent action to protect people with ME.

Read our letter:

Dear Professor Powis and Mr Hancock,

I previously wrote to you both in March, regarding the difficulties people with ME are having with getting their GP to classify them as being in group 6 for the vaccine roll out.

During this pandemic you have repeatedly assured the public that you are “Following the science”.

With this in mind, we are writing today to update you with the preliminary findings from a joint survey between #MEAction and Action for M.E. The main finding indicated is that people with ME are both at risk of Covid-19 exacerbating their underlying disease and are at risk of prolonged  illness from Covid-19 itself.

More than three quarters (76%) of respondents said that Covid-19 made their ME symptoms worse and 72% reported new symptoms. Not only that, but this impact appears to be long lasting with worsening in symptoms lasting more than 6 months.

While this is only a preliminary report, it is important to share the information we have now during what is an ongoing and evolving situation.

While the vaccine is being rolled out to progressively younger age groups, people at serious risk from Covid-19 are still not being vaccinated as a priority group. This is important not only now during the initial roll out but going forward when boosters may be required later in the year as the classification currently used is still excluding these groups.

When a constituent wrote to you about this situation in February, you replied advising:

“I want to assure you that we are committed to vaccinating according to need”

This still does not appear to be happening for people with ME. 

Despite ME/CFS being defined as a neurological disorder by the World Health Organisation (WHO) (G93.9) it has been omitted from the group 6 table in the Green Book.

GP’s are still unaware that they are able to use their clinical judgment to place patients in group 6. As advised in our previous communication with you, this appears to be because the full advice in the Green Book was not included in the letter from NHS England sent to all Local Vaccination Sites and copied to CCG’s, GP’s and Regional leaders in February.

That advice states:

“The examples above are not exhaustive...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.”

We previously asked that you ensure that NHS England update their advice to include this crucial information to all Local Vaccination Sites, CCGs, GPs and Regional leaders

We now urge you to take action as a matter of urgency before more patients are needlessly put at risk.

Yours Sincerely,

S. Louise Beaton

On behalf of #MEAction UK

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1 thought on “Continuing pressure on NHS to vaccinate people with ME in light of survey results”

  1. GRAHAM KEATESMAY 13, 2021 AT 7:10 PM from survey page:
    These are not vaccines. That said I developed ME after a flu vaccine. ME is neurological and these so called vaccines can cause severe neurological side effects. It took me 10 yrs to discover how to manage my ME and in part never taking another vaccine. It was my path as MLmedics have no idea. I see the stigma is still there. Make yourself fully aware of what these so call vaccines can do and how they work. They are totally experimental. Note, the number of reports of persistent symptoms/PVFS all labeled as Long Covid. Another name for ME? Buyer be aware. I use to subscribe to MEAction but never found it to be of help just an extension of MLmedics although a place to share and seek support, not helpful for me. I lost 10 years of my life to ME, and still limited to a degree but have learnt by myself how to recover and manage in the long term. Thank you. Graham.

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