ME Association

This week, ME Connect Officer, Alison, has been raising awareness of ME/CFS and the support which The ME Association can provide at a Primary Care Centre in Birmingham which is home to 3 GP Surgeries as well as some local community services.  We hope the conversations she has with the service users and healthcare professionals will help to further understanding and awareness in the local area - thanks so much, Alison!  #pwME #MECFS #MEConnect #MEAwareness #MEAwarenessWeek #MEAwarenessWeek2026 #MEAW2026 #MEAW

The Sick Times: Breaking the vicious cycle: How two German scientists seek to solve ME  "A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding."  Read more: thesicktimes.org/2026/05/14/bre…  #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MyalgicEncephalopathy

2/2: You can learn more about ME/CFS in our free booklet: What you need to know about ME/CFS Download now: meassociation.org.uk/1n2w

1/2: ME/CFS is a multi-systemic illness, meaning it can affect many parts of the body — including the immune, nervous, endocrine, and metabolic systems. This graphic highlights some of the symptoms and changes people with ME/CFS experience every day. #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

You can also read the ME Association's booklet on Sleep Management here: meassociation.org.uk/wr86

Journal of Clinical Sleep Medicine: Sleep in ME/CFS shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study "Using week-long wrist accelerometry, this study shows that under free-living conditions sleep in ME/CFS is characterized not only by impaired sleep efficiency but also by pronounced night-to-night variability, despite relatively stable bedtime compared to controls." Read more: link.springer.com/article/10.100… #MECFS #pwME #MyalgicE #Sleep #UnrefreshingSleep

Support the ME Association by nominating us for a Movement For Good £5000 award!   "To support the incredible work that so many charities do to support health and wellbeing, our first special draw of the year will award £5,000 each to 10 charities working in this area."   The draw is only open for 14 days, from Monday 11th of May to Sunday 24th of May, so if you would like to nominate us for the award, please head on over the their website: meassociation.org.uk/ol0w   #MECFS #pwME #MovementForGood #MyalgicE #LongCovid #MEAwarenessWeek

Dr Charles Shepherd interviewed for ME Awareness Week on UCB Radio - Listen in! Listen in to the interview on Catch Up (available for the next 30 days) via the link in our blog: meassociation.org.uk/0fwy #MECFS #SevereME #MyalgicE #MEAwarenessWeek #MEAwareness

The Sick Times: Thousands “lie in” for German ME protests  "To mark International Myalgic Encephalomyelitis (ME) Awareness Day, advocates participated in marches and “lie in” protests in 42 cities across Germany. The demonstrations, which organizers say drew over 12,000 people in person and 700 people virtual participants, took place on May 8 and 9 to recognize the debilitating, multi-systemic disease."  Read more: thesicktimes.org/2026/05/12/tho…  #pwME #MECFS #MEAwarenessWeek #MEAW2026 #MEAwarenessDay

On 26th May, @actionforme are hosting a webinar on Sequence ME and Long Covid, including a Q&A session with Professor Chris Ponting, lead researcher.  When: 26 May, 14:30-15:30pm GMT Sign up to join here:  us02web.zoom.us/webinar/regist… The webinar will be recorded and AfME will share the recording afterwards. #pwME #MECFS #LongCovid #DecodeME

ME/CFS Research Review: DNA sequencing study to help pinpoint biology of ME gets £4.7m "Using the Oxford Nanopore Technologies approach, Sequence ME & Long Covid will be able to sequence almost all of the 3 billion chemical ‘letters’ in the human genome.” Read the full article: tinyurl.com/yc5f45fc #MECFS #pwME #MyalgicE #DecodeME #SequenceME

We're investing in a world-leading study helping scientists understand Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The research will created a detailed picture of ME, a debilitating condition that affects hundreds of thousands of people. gov.uk/government/new…

Wow! Our morning total has come in another 10 orgs have signed and 175 peeps 🔥 💐 Thank you everyone! Signing link 💌 forms.gle/UCNpAs2d43ydaF…

The Star: Meadowhall to Light Up Blue for International ME Awareness Day "Meadowhall Shopping Centre in Sheffield will illuminate its roof lighting in blue in recognition of International ME Awareness Day on May 12, helping shine a light on the realities of living with Myalgic Encephalomyelitis (ME). Read more: tinyurl.com/3wh4m5te #MECFS #pwME #MyalgicE #Sheffield #MEAwarenessDay #MEAwareness

Chartered Society of Physiotherapy: Do no harm: supporting people with ME/CFS The CSP have published a new article for physiotherapists on providing effective therapies while ensuring patients with ME/CFS are safe and supported. Read more: csp.org.uk/frontline/arti… #MECFS #pwME #PhysiosForME #Physiotherapy #MyalgicE

Sign the letter: forms.gle/UCNpAs2d43ydaF…

The ME Association have signed an open letter, written by the group @LongCovidAdvoc to the Royal College of Psychiatrists, urging them to align with current evidence. Read more: meassociation.org.uk/2c77 #RCPsychIC #MECFS #pwME #LongCovid #MEAwarenessDay

The MEA have signed this Open Letter: Please read more about it below or on our blog: meassociation.org.uk/2c77 #MECFS #pwME #LongCOvid #MEAwarenessDay

2/2: Building on the findings from DecodeME, the new SequenceME study should provide a deeper understanding of the underlying disease process, in particular how the immune and nervous systems respond to a triggering infection in ME/CFS.   For people with ME/CFS this provides real hope better understanding, earlier diagnosis, and targeted treatments for this serious biomedical illness. Find out more: meassociation.org.uk/xa0z

1/2: For more than 45 years, The ME Association has been at the leading edge of education, research, and advocacy for people with ME/CFS, consistently pressing for meaningful government investment in biomedical research.   Today, we welcome the Government’s decision to invest £4.75 million in new research funding to support vital work into the role of genetics in ME/CFS.   #pwME #MECFS #MyalgicE #MEAwarenessDay #MEAwareness #MEAW2026