ME Awarenes 2023

We Live With A Monster: A Myalgic Encephalomyelitis (M.E.) Story
Sharon Tiday said on Twitter: 
For a while now people have told me that I should get this short story/poem published so I sent it off and Edge of Humanity Magazine has now published it ūü•≥please share it for #MEAwareness¬†

ME/CFS CPD | Module

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.‚ÄĮ 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

Flyer for CPD Module .pdf

DecodeME: the largest study into the causes of ME/CFS ‚ÄstAdd your voice!¬†

DecodeME launched in September 2022, and over 18,000 DNA participants have already taken part, but the study still needs many more people to get involved. Sign up and complete the questionnaire about your symptoms and experience, to share vital information and help us understand more about the disease.

Taking part in DecodeME has two stages, both can be done at home. Some participants may only need to complete the first stage. Others may also be asked to provide a saliva sample, so their DNA can be studied. If so, you will be sent a kit so you can provide your sample and post it back for free. 


The DecodeME questionnaire is shining a light on the ME/CFS community by collecting a wealth of information. This covers many important aspects such as common symptoms, length of illness, severity, simultaneous health conditions, and age. It takes about 15 minutes to complete the questionnaire and when you need a break, you can save and return to your answers later. Alternatively, if you prefer, you can request a paper copy instead by contacting the team. 


The study has been designed in collaboration with scientists, people with ME/CFS and carers.

The strong involvement from the patient community has been vital to making the process as accessible for and representative of the community as possible.


By also studying DNA, DecodeME is providing hope of finding biological causes of ME/CFS. This aims to direct future research and treatment development.

The study has also recently updated its methods so that it is inviting more people to provide a DNA sample. You can read more about this on the blog page of the DecodeME website.


Sign up for the study via the DecodeME website

Or spread the word to help us reach more people by visiting the Ways to share  page. 


Every participant counts

Contact details

0808 196 8664 (Mon-Fri 9am-5pm)

#DecodeME Matters

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 and mention ‚ÄúBlue Sunday‚ÄĚ in the Donations¬† Comments section. Please see events details below.

fundraising ME Awareness 23

In October I did a presentation entitled ‚ÄėAvoiding Preventable Malnutrition in severe ME‚Äô 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. 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 ‚Äėrisk dying of starvation‚Äô 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