A message from course author, Dr Nina Muirhead
BA (Oxon), BMBCh (Oxon), MRCS HOHNS, MEd, PGCipDerm
ME/CFS is one of the most fascinating and important diseases of our time. In writing this module I have started from scratch. I drew on the international peer reviewed literature and emerging international ME/CFS educational resources and have been fortunate to receive significant contributions from medical experts, scientists and patients
As many of you are aware our advocacy worker, Helen Baxter, has been assisting people with severe and very severe ME to participate in the DecodeME Study by completing the questionnaire over the telephone with participants who can’t complete it online/on a paper copy. Helen was invited, by the DecodeME Team, to provide a quote for ME Awareness Week as to why DecodeME matters. Decode ME Study | Facebook
We have been made aware of two fantastic fundraising events taking place for ME Awareness. You can join in if you wish and raise money for the 25% ME Group at the same time. If you would like to donate to the 25% Group for these events, simply use our Donate button at www.25megroup.org and mention “Blue Sunday” in the Donations Comments section. Please see events details below.
In October I did a presentation entitled ‘Avoiding Preventable Malnutrition in severe ME’ at the Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focuses predominantly on elderly people and I was asked to reflect that in my presentation. I drew on the comparison between the nutrition and care needs of elderly people and those with severe ME and went on to talk about weighing someone who is bedbound and also tube feeding. My talk is now available on the Malnutrition Task Force website and on YouTube
It gave me the opportunity to educate professionals who may not have come into contact with anyone with severe ME and hopefully they will be more aware if they do treat someone with severe ME.
There were other talks about hydration, starting conversations about malnutrition etc from a variety of professionals including researchers and clinicians from a range of specialisms. All the talks can be found at
UKMAW22 Conference Report | Malnutrition Task Force.
On a separate note I was invited to the All Parliamentary Party Group on ME AGM to talk about severe ME and I have recorded a video for it.
And remember if you haven’t taken part in DecodeME yet there is still time to sign up.
https://www.decodeme.org.uk/ or telephone 0808 196 8664. If you are having difficulties completing the questionnaire please do contact me; I can help you. Helen Baxter, Advocacy Worker
Hospital update Alice Barrett’s tube feeding plan
Alice Barrett who is an inpatient at Royal Devon and Exeter Hospital was unable to lie at 30 degrees to be tube fed in line with hospital policy. The hospital have now amended Alice’s tube feeding plan to factor this in.
The Times 27.02.23
ME patients ‘risk dying of starvation’ under NHS care
Times Article 27.02.23 ”ME patients ‘risk dying of starvation’ under NHS care”
An interview with the sister of Alice Barrett who needed urgent tube feeding
The sister of Alice Barrett has been interview by BBC South West about Alice’s need to be urgently tube fed lying flat. Our medical advisor, Dr Weir is also on the interview. You can watch the interview here