Latest MEA news

Coming up in 2022 

  • DecodeME – the largest ever genetics study into ME/CFS – will begin recruiting later this month. If you haven’t already signed up, then please do so now. It will help determine if there are any genetic clues to this condition and if people who have it are genetically more susceptible. 

  • We have been supporting the ME Biobank since its launch in 2011 because we believe it to be such a vital project. We’ll be delivering some exciting news later this month, and the Biobank will be reporting the results of its 8-year longitudinal study into ME/CFS in July. It is the first long-term study to include both ambulatory and severe cases, comprehensive clinical data, and in-depth immunological profiling. The results could provide much-needed insights into the perpetuation of this disease. 

  • The ME/CFS Priority Setting Partnership will be reporting results before summer, revealing the top 10 unanswered questions for future research. When the PSP process has been completed by other disease groups, like epilepsy or multiple sclerosis, the work has resulted in renewed research interest and funding. If we can take these results forward then there is no reason to think it can’t stimulate the same interest for ME/CFS. 

  • ME Awareness Week: Monday 9th – Sunday 15th May. We’re gearing up for a new campaign, but if you have any thoughts about what you’d like to see us do this year or in subsequent years, then please let us know: 

Free NICE Guideline Summary Booklet

The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee (2019 – 2021).

Science Focus: Nearly half of all long Covid patients may have ME/CFS

Dr Shepherd, Honorary Medical Adviser to the MEA says: “This is a small pilot study but one that is very interesting and continues to attract media attention. It seems to confirm what has been suspected for some time and it was good to see the use of CPET exercise testing and assessment of Long Covid patients for ME/CFS.

“However, it would have been better had patients been tested using CPET over several days to see if post-exertional malaise was also an issue – this being a key symptom of ME/CFS”

Read more and see a link to the article here.

New video from “Dialogues for a neglected illness” charting the “Tangled Story of ME/CFS”

The Dialogues for a neglected illness (Dialogues for ME/CFS) website has another excellent video charting the recent history of the illness and how it has been poorly treated. The video is titled “The Tangled Story of ME/CFS – Controversy, Ignorance and Denigration”.

December & January Poll

Don’t forget to take part in our poll here, if you haven’t already.

How did the Covid-19 booster affect you? Please submit your vote using the definitions above the poll.

MEA 2022 Calendars

It’s not too late to buy your 2022 calendars! Get your beautiful calendar full of images by the photographer Angi Wallace who has had ME for over 15 years and kindly gave us permission to use her stunning work.
Support the MEA and let the images adorn your wall. You can Choose from Flower Power or Animal Magic (£6.50 each) with lovely quotes to read throughout the year too! 

  • Animal Magic 2022 Calendar
  • Flower Power 2022 Calendar

Leave a Reply