Tessera

ME Association

@meassociation.org.uk

A UK registered charity for people with #MECFS and Long Covid (and Post Covid ME/CFS). We inform, educate, raise awareness, fund medical research and campaign for positive change. RPs do not necessarily mean endorsement. https://linktr.ee/meassociation

1862 Posts888 Follower 142 Folgt

ME Association @meassociation.org.uk · 5h ago

The MEA now provides a poster showcasing the new NHS e-learning CPD modules on ME/CFS. Please download (for free) & share with healthcare professionals, GP Surgeries, & NHS Trusts to spread awareness & ensure patients with ME/CFS are receiving the best possible care https://meassociation.org.uk/6k05

IMAGE DESCRIPTION: Photo of the MEA's NHS e-Learning modules poster on a purple background.

ME Association @meassociation.org.uk · 9h ago

"As my symptoms worsened, I needed a mobility scooter to help me get to the shops, but even that was too much and I became bedbound and relapsed into severe ME." Read about Hailee's experience with Severe ME on the blog: https://meassociation.org.uk/eded #SevereMEAwarenessWeek

Photo of Hailee lying in bed in a pink top, with sunglasses on her head. Quote: "Hope is what keeps me going. It is what helps me face each day. Without that hope, it would be much harder to endure the challenges that severe ME brings."
Wording below: "Read Hailee’s story this Severe ME Awareness Week over on the blog"

Photo of Hailee, with Quote: "One of the things I want people to understand is that severe ME is almost impossible to fully explain unless you live through it. A specialist ME doctor once described it to me as being like waking up with a phone battery that is already almost empty, except your body starts the day already in the negative – it’s a description that resonates with me."

Photo of Hailee and quote: "One of the hardest parts of living with severe ME is feeling invisible, and like a second-class citizen. I want healthcare professionals to see me, believe me and support me, but I have had to fight for appropriate care, even when I was too ill to advocate for myself."

Photo of Hailee.
Wording: "Read Hailee’s story this Severe ME Awareness Week over on the blog"

ME Association @meassociation.org.uk · 10h ago

ME Connected is our online community for people affected by ME/CFS and Long Covid: including carers, friends and family, as well as those with these conditions. #pwME #MECFS #LongCovid

IMAGE DESCRIPTION: Photo of a young woman lying in bed in the dark, with her duvet covering her head, on her phone.
Wording reads: 'Feeling alone? Try ME Connected, our online community for people affected by ME/CFS and Long Covid'.

ME Association @meassociation.org.uk · 2d ago

WAMES met with Health Minister to discuss ME and Long Covid services in Wales Last Tuesday (28.07.26), @wamesmecfs.bsky.social representatives met with Welsh Minister for Health and Care, Mabon ap Gwynfor MS (Plaid Cymru). https://meassociation.org.uk/6xnx #MECFS

ME Association @meassociation.org.uk · 2d ago

The HERITAGE study aims to address an urgent question in NHS healthcare: how to deliver effective, equitable, and evidence‑based care for people living with Long Covid and ME/CFS? Could you help HERITAGE by taking part? Find out more: https://meassociation.org.uk/k28p #MECFS #LongCovid

Wording: "Have you had Long COVID or ME/CFS for over 2 years? We want to hear from adults (18+) across the UK who: - Have Long Covid and/or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome symptoms lasting 2+ years - Are not currently receiving specialist NHS Long COVID or ME/CFS Care." QR Code: right

ME Association @meassociation.org.uk · 2d ago

Naomi’s story: lived experience of Severe ME “I want to share my lived experience of severe ME as I want people to understand just how life-changing, debilitating and disabling it is...” Read Naomi's story: https://meassociation.org.uk/2kon #SevereME

Photo of Naomi, a woman with brown hair wearing dark glasses and smiling at the camera in a half-lit room.
Wording: "I want to share my lived experience of severe ME as I want people to understand just how life-changing, debilitating
and disabling it is. This is an illness that has turned my life upside down and brings me to tears, but I have also built a new life for myself and I’m happy with what I’ve built."
Read Naomi's story this Severe ME Awareness Week over on the blog.

Wording: "Most of my day is spent in bed. Severe ME means that even the smallest tasks require careful planning and pacing. Simply getting washed and dressed with support from a PA can trigger Post-Exertional Malaise (PEM), which occurs hours or even days after physical, cognitive or emotional exertion."

Wording: "One of the hardest aspects of severe ME is its unpredictability. I wake up exhausted every morning, but I never know when my energy will suddenly crash. I spend most of my day in bed. My symptoms can change from hour to hour. Pain levels fluctuate constantly, and I never know when PEM will hit, how severe it will be or how long it will last."

Photo of Naomi, with the following text below: "Read Naomi’s story this Severe ME Awareness Week over on the blog"

ME Association @meassociation.org.uk · 2d ago

It's Severe ME Awareness Week 2026 It is estimated that at least 404,000 people in the UK have ME/CFS and around 25% of these people may have severe or very severe symptoms for prolonged periods. Find out more: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/ #SevereME

IMAGE DESCRIPTION: Photo of a woman lying in bed with her eyes shut. Wording: "Around 25% of people with ME/CFS in the UK are severely or very severely affected. The severity and intensity of ME symptoms means that people can be housebound / bedbound for years often needing 24 hour care to maintain activities of daily living."

Photo of a man lying in bed, staring at the ceiling.
Wording: "They often lay in dark rooms due to hypersensitivity to light as well as others sensitivities to sound, smells, and touch.
People with severe ME often mention they feel they are existing, not living, and as a consequence, the disease can have a devastating impact on their mental well-being."

Photo of a man lying in bed, with his wheelchair sat next to him. Wording: Patients have suffered decades of misunderstanding and misconceptions, which has further compounded the effects of this life changing illness.

ME Association @meassociation.org.uk · 5d ago

Sharing for information: NHS Greater Glasgow and Clyde: Long Term Conditions Expert Patient Reference Group: First meeting Thursday 20th August, from 2:30pm-4pm To register please email: emma.olson@nhs.scot #MECFS

My Health – Living Well with Long Term Conditions
‘My Health-living well with Long-term Conditions Service’ helps individuals to manage their long-term health conditions using practical skills and strategies. We are an Allied Health Professional (AHP)lead service, consisting of Occupational Therapists(OTs), Physiotherapists and Health Care Support Workers..."

Your experience matters – help us improve services for people living with long term conditions.
Meetings will be held on MS Teams.
First Meeting Thursday 20th August, from 2:30pm-4pm
To register and receive your MS Teams link please email: emma.olson@nhs.scot

ME Association @meassociation.org.uk · 5d ago

1/2 Parliamentary Questions (PQs) on ME/CFS & Long Covid: July 2026 We've listed the PQ's for July which mainly relates to 3 questions from Sir Julian Smith asking for an update on the NHS Specialist service for patients with very severe ME. July Q&A: linktr.ee/MECFSLC.Parl...

@MELC.PQs | Linktree

Linktree. Make your link do more.

linktr.ee

ME Association @meassociation.org.uk · 5d ago

Forward ME Briefing Paper on Clinical assessment of people with very severe ME/CFS This was prepared for the DHSC and NHS England to explore the creation of a national specialist referral service for people with very severe ME/CFS who require hospital admission. https://tinyurl.com/56k3dmu2 #pwME

FME Briefing Paper on Clinical assessment of people with very severe ME/CFS. – Forward ME

FME Briefing Paper on Clinical assessment of people with very severe ME/CFS. July 24, 2026 • Updates This Forward ME briefing paper on the clinical assessment of people with very severe ME/CFS was prepared for the DHSC and NHS England in relation to an action point in the DHSC Delivery Plan to exp...

tinyurl.com

ME Association @meassociation.org.uk · 6d ago

Research: A large international study on Fibromyalgia has identified potential risk factors across patients' genes Nature has published a research study entitled The genetic architecture of fibromyalgia across 2.5 million individuals (July 2026) Read more: meassociation.org.uk/dqoo

Research: A large international study on Fibromyalgia has identified potential risk factors across patients' genes - The ME Association

Discover how a landmark Nature study strengthens the biological evidence for fibromyalgia. Read the key findings.

meassociation.org.uk

ME Association @meassociation.org.uk · 6d ago

1/3: BBC Radio 4 Inside Health: Is inflammation behind all chronic disease? This 28 minute BBC Inside Health programme discusses new research into inflammation, and how this could change the treatments for many chronic diseases. Listen in: https://www.bbc.co.uk/sounds/play/m002zggr #MECFS

Inside Health - Is inflammation behind all chronic disease? - BBC Sounds

How understanding inflammation could transform treatments from cancer to Alzheimer’s.

bbc.co.uk

ME Association @meassociation.org.uk · last wk.

1/3 NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake In January 2026, and repeated in June, Lucibee [social media username], an advocate for people with ME/CFS submitted a Freedom of Information (FOI) request to NHS England

IMAGE DESCRIPTION: An image of healthcare professionals. Title: NHS England’s ME/CFS e-Learning Modules FOI Results reveal lack of uptake. The MEA's H4ME and ME Association logos (left-hand side)

ME Association @meassociation.org.uk · last wk.

Can you help us to support people with ME/CFS by fundraising for the ME Association at this year's Dundee #KiltWalk2026? Click the link to find out more and book your place! https://meassociation.org.uk/2026/06/kiltwalk-dundee-16th-august/ #MECFS #pwME #Fundraising #KiltWalk

IMAGE DESCRIPTION: Photo of the Kiltwalk event, with people walking in kilts while playing bagpipes. Wording: "Join Team MEA at the Dundee Kiltwalk 2026! 16th August 2026."

ME Association @meassociation.org.uk · last wk.

1/2: Calibre Audio has announced the return of Inclusive Voices, its nationwide short-story and poetry competition designed to spotlight creativity, accessibility, and diverse storytelling. We are sharing here in case anyone from the ME/CFS/LC communities may be interested in taking part. #MECFS

IMAGE DESCRIPTION: Poster advertising Calibre Audio's short story competition - see website for more info: https://www.calibreaudio.org.uk/news/inclusive-voices

ME Association @meassociation.org.uk · last wk.

Yorkshire Live: Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care Read the article: https://tinyurl.com/yckfp9xx #MECFS #pwME

Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care

Myalgic Encephalomyelitis (ME) is a complex, long-term neurological disease

tinyurl.com

ME Association @meassociation.org.uk · last wk.

1/2: The ME Association has recently been in touch with the Derbyshire CFS/ME Service, and we can confirm they are still open. #MECFS #pwME #MyalgicE #SpecialistService #NHS

IMAGE DESCRIPTION: Photo of a GP assessing medications. Heading - "Derbyshire ME/CFS Service - share your feedback"

ME Association @meassociation.org.uk · last wk.

Please help us improve the information we provide via our social media, email newsletters, website, and free literature by filling in our survey: https://meassociation.org.uk/d90v The deadline for submissions is end of day on 31st July 2026, this Friday. Thank you! #MECFS

IMAGE DESCRIPTION: Cartoon graphic of a person looking at a survey, with tick boxes and charts. Heading: "MEA Information Survey: Share your thoughts!"

ME Association @meassociation.org.uk · last wk.

Kent Live: 'I've been crying since 9am' Motability July change update as users hit out "New rules came into place on July 1 which meant people driving their Motability vehicle more than 10,000 miles would face an additional bill of 25p a mile." https://tinyurl.com/4exwze2k #MECFS

'I've been crying since 9am' Motability July change update

Motability users have said they are ‘losing sleep’ over mileage changes after new exemptions published

tinyurl.com

ME Association @meassociation.org.uk · last wk.

BBC News: Heatwave Warning "Another UK heatwave could be declared next week as temperatures are once again forecast to intensify across England and parts of Wales." Read more: https://www.bbc.co.uk/weather/articles/c07rz2r121no #MECFS #pwME #LongCovid #Heatwave

IMAGE DESCRIPTION: Graphic of a person in bed looking unhappy, with the sun shining down on them. Next to them are icons representing a fan, sunglasses and bottled water, representing some ways to manage a heatwave. Heading: "How to cope with hot weather and heatwaves if you have ME/CFS"

ME Association @meassociation.org.uk · last wk.

1/3: ME/CFS Service Closures Without Consultation: What You Need to Know. There's growing concern about the recent closures of specialised ME/CFS services in the UK, particularly the lack of public consultation beforehand. #MECFS

“NHS organisations, including Integrated Care Boards (ICBs), have a legal duty to involve patients in the planning and development of healthcare services, including when changes to services are being considered” Section 14Z45 of the National Health Service Act 2006 (as amended by the Health and Social Care Act 2012).
Logos: ME Association and Healthcare 4 ME.

ME Association @meassociation.org.uk · 2w ago

DHSC Delivery Plan on ME/CFS – One year on Dr Charles Shepherd, MEA Hon. Medical Adviser provides an update one year on from the ME/CFS Delivery Plan meassociation.org.uk/vckc #MECFS

DHSC Delivery Plan on ME/CFS - One year on - The ME Association

One year on from the ME/CFS Delivery Plan, read the latest progress, delays and what may happen next. Find out more via the blog

meassociation.org.uk

ME Association @meassociation.org.uk · 2w ago

1/3 In June, Harvey who rode a 50-mile bike ride in honour of his mum with ME/CFS. Harvey's current total is nothing short of amazing, and this deserves a special thank you from everyone at the MEA!

ME Association @meassociation.org.uk · 2w ago

ME Association comments on a report containing unsubstantiated claims regarding ‘brain retraining’ as a cure for ME/CFS and Long Covid Dr Charles Shepherd, MEA Hon. Medical Adviser was interviewed by the journalist and has been quoted in the article. Read more here: meassociation.org.uk/nzdc

ME Association comments on a report containing unsubstantiated claims regarding 'brain retraining' as a cure for ME/CFS and Long Covid - The ME Association

ME Association challenges claims of 'brain training' as a cure for ME/CFS and Long Covid. Read Dr Shepherd's comments about the report.

meassociation.org.uk

ME Association @meassociation.org.uk · 2w ago

1/3 The ME Association funds its medical research via the Ramsay Research Fund (RRF). The ME Association is currently funding the following studies: meassociation.org.uk/research/ram...

ME Association @meassociation.org.uk · 2w ago

Calling friends and family of the MEA! Fancy raising money for the ME Association by joining #TeamMEA to walk the Dundee #KiltWalk2026 on the 16th August? If so, please click here for more info: meassociation.org.uk/2026/06/kilt...

Kiltwalk Dundee: Sunday 16th August - The ME Association

Raise money and awareness for the ME Association whilst having fun participating in the Kiltwalk in Dundee 16th August

meassociation.org.uk

ME Association @meassociation.org.uk · 2w ago

Medical Matters: Non-restorative/unrefreshing sleep Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA. Q: What is non-restorative/unrefreshing sleep? A: https://tinyurl.com/mtpk8rc4 #pwME #MECFS #NonRestorativeSleep #UnrefreshingSleep

ME Association @meassociation.org.uk · 2w ago

The Sick Times: How to interpret clinical trial results for Long COVID: This interesting article explains how to critically interpret clinical trial results, emphasising that some headlines may cite "positive" studies, however these headlines could be misleading. thesicktimes.org/2026/07/21/h...

How to interpret clinical trial results for Long COVID - The Sick Times

With no proven treatments or cures, many people with Long COVID are turning to off-label medications, supplements, and medical devices to treat their symptoms. There are numerous options — and some of...

thesicktimes.org

ME Association @meassociation.org.uk · 2w ago

Over half of everything we do is only possible because of people who remembered the ME Association in their Will. An incredible gift of generosity. Thank you. https://meassociation.org.uk/get-involved/legacy/

ME Association @meassociation.org.uk · 2w ago

ME Association's statement on the appointment of Yvette Cooper as Secretary of State for Health & Social Care Dr Shepherd, MEA Hon. Medical Adviser lists a number of key issues from the DHSC Delivery Plan on ME/CFS which require ministerial action. meassociation.org.uk/whki #MECFS

ME Association's statement on the appointment of Yvette Cooper as Secretary of State for Health and Social Care - The ME Association

meassociation.org.uk