UK government should add ME to vaccine priority list

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After receiving increasing reports that people with ME are being told they will not be prioritised for the COVID-19 vaccine, #MEAction has written to the Chief Medical Officer Professor Whitty, and the Joint Committee on Vaccination and Immunisation to call for clarity.

We hope that by adding to the pressure other ME organisations are already exerting, Professor Whitty will give a clear direction that people with ME should be included in priority group six.

Read #MEAction’s open letter

Dear Professor Whitty and the Joint Committee on Vaccination and Immunisation,

We are appealing to you to raise concerns on the priority of people with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, during the COVID-19 vaccination process.

We welcome the prioritisation of the UK’s most vulnerable people and health care workers. However, we must express our concerns about the absence of ME from the list of clinical conditions which are included in priority group 6. 

While we recognise that this list is not exhaustive, we are seeking urgent clarity on the categorisation of ME in the clinically vulnerable categories. The World Health Organisation (WHO) classifies ME as a neurological illness in ICD10 section G93.3, and NHS England classifies ME as a neurological disease in SNOMED. However, people with ME are receiving conflicting advice as to which priority group they fall into. 

#MEAction are hearing from concerned patients who are being told by their GP that their ME does not put them into group 6 of the priority list for the COVID-19 vaccine. This is contrary to the government’s classification of ME as neurological, and ignores the the major risk of relapse that COVID-19 poses for people with ME.

New infections are the most common cause for relapse and exacerbation of symptoms of ME - as noted in section 3.3.2 of the Chief Medical Officer’s Working Group Report on ME. This is also supported in section 1.6.4 of the new (draft) NICE guidelines for ME.

Finally, reports from people with ME suggest that most of them who have caught COVID-19 have had a significant and/or prolonged relapse of their disease, subjecting them to further suffering.

We are not only concerned about the immediate ramifications of COVID-19 on ME patients' health but also the implications of the absence of ME from the clinical conditions list; including their ability to access support such as access to supermarket slots to limit possible contact with COVID-19.

There are 250,000 people in the UK who suffer from ME/CFS, 75% of those affected are unable to work and 25% are homebound. We do not wish to see the level of debility this disease causes increase if there is a chance to mitigate this risk.

Dr Charles Shepherd, Medical Advisor for the ME Association said: “The priority list is followed by a group of people (in group 6) who have what are termed by the JCVI as ‘underlying health conditions’ that make them vulnerable in relation to COVID-19. This list includes people with chronic neurological conditions. ME/CFS should be included in the ‘underlying health conditions’ list – as it is classified as a neurological disease by both the WHO (in ICD10, G93:3) and NHS England.

In addition, COVID-19 will almost certainly exacerbate pre-existing ME symptoms and/or cause a relapse of ME.”

We would be hugely grateful if you could confirm that people with ME are included in the JCVI COVID-19 vaccine priority list under group 6 as persons with an underlying neurological health condition.

Many thanks, 

Charlie Wainwright, on behalf of #MEAction UK and #MEAction Scotland
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3 thoughts on “UK government should add ME to vaccine priority list”

  1. Due to the total incompetence of the NHS my daughter has had sever ME for 15 years. At her worst she scored 5 on the functional scale, today she hovers around 30. Its still a long way to go before she can even leave the house, for something other than hospital visits.
    My 89 year old father lives with us and unfortunately he has needed hospital visits. We have lived in terror for 10 days after each visit. We have been holed up here for a year and the vaccine has given us hope and also fear.
    As an ME sufferer she has to be very careful about what she takes into her body. So the vaccine holds anxieties about any reactions she may have; but then not too have it holds terrors too. What matters most is that she is one of250,000 that still hardly exists to this day.

  2. ME/CFS has always been overlooked. Some GPs don’t take it seriously and there is still stigma attached to it.
    It has taken six years for me to be diagnosed due to GP’s lack of knowledge and not following the NICE guidelines proceedure.
    During Covid I’ve had no support from my GP.
    I asked for a ‘shielding letter’ and although the GP wanted to give me a shielding letter he had to refuse because he could not find anything that said ME/CFS patients are classed as vulnerable. He spent a good deal of time looking and phoned me the next day to tell me this.
    I did not realise at the time that it might have come under ‘neurological disorders’.
    It should be clearer for GPs and not just written as ME, but written as ME/CFS which is it’s current description as ‘they’ cant agree on a name for this Multi System Disorder.
    (They should call it MSD, Multi System Disorder). It does affect all systems.
    GPs should have ME/CSF information more readily available?

    I had the flu vaccine for the first time ever in October. I went into mild shock. Shivering, and freezing cold. I hope the covid vaccine goes alright. But as ME/CFS is still overlooked and misunderstood, I’m not expecting any extra medical monitoring following my jab. Though I think we should be monitored for at least an hour after the jab.

    Kind regards

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