ME Association

We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.

[ME Association @MEAssociation]

1/2: House of Lords Debate: Treatment and research into severe myalgic encephalomyelitis (ME) - Thursday, 18 June 2026 

N.B. It starts at 11am, however this is the penultimate debate on agenda, and it is likely to take place later in the afternoon.

You can watch the debate via either of the following links:

Parliament TV: https://t.co/AYzEcsMjhf

BBC coverage:
https://t.co/Uewll2Wr22

#MECFS #SevereME #pwME #MyalgicE #Debate

[ME Association @MEAssociation]

Become a member of The ME Association and receive copies of our quarterly magazine - full of exclusive articles, medical and scientific developments, Ask the Doctor, stories and opinions from people living with ME/CFS or Long Covid, and keeps members apprised of recent news.

https://t.co/j2grcPahVr 

#pwME #MECFS #LongCovid #MEAssociation #BecomeAMember

[ME Association @MEAssociation]

Did you know that over the last few years, the ME Association have put over £2million in to funding ME/CFS and Long Covid research? 

The main way we do this is through the Ramsay Research Fund, our restricted fund dedicated to research investment. Learn more: https://t.co/TnqYpu8tnu 

#pwME #MECFS #MyalgicEncephalomyelitis #MyalgicEncephalopathy #LongCovid #MECFSResearch #LongCovidResearch #RamsayResearchFund

[ME Association @MEAssociation]

Preprint Research: Mapping the Symptom Profile and Burden of ME/CFS: Insights from the TIMES Survey

The ME Association funded a study led by Prof Sarah Tyson from the University of Manchester to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services. 

As part of Phase I of the project, Prof Tyson and team conducted an online survey – The Index of ME Symptoms (TIMES) – and the result from 1028 adults with ME/CFS helped produce this preprint paper.

Read more: https://t.co/fiSAyFtw2P

#pwME #MECFS

[ME Association @MEAssociation]

University of Lancashire (In Person Event): Cognitive Fatigue, Brain Fog and Functional Performance Stakeholder Workshop

📅 Wednesday 22nd July 2026
🕙 10:30–13:30 
📍 DB247, Darwin Building, Preston Campus, University of Lancashire

"You’re invited to a half-day stakeholder workshop bringing together charities, patient representatives, clinicians, researchers, and relevant organisations with an interest in conditions where cognitive fatigue and brain fog are prominent concerns.

This will be a chance to share your priorities and unmet needs and identify future research and funding opportunities. We want to build collaborations and networks with service users and those with lived experience for future research, practice, and policy development."

Register Now: https://t.co/mqmGjLoD5h

For more information, contact: [email protected]

#MECFS #pwME #MyalgicE #Research

[ME Association @MEAssociation]

Please help us improve the information we provide via our social media, email newsletters, website, and free literature by filling in this quick survey: https://t.co/9k0gDM0iXa

It should take around 15 mins to complete, and your answers can be saved so you can resume the survey later if you need to take a break. 

#pwME #MECFS #LongCovid #MEAssociation

[ME Association @MEAssociation]

Join ME Connected, our online community on Discord for people affected by ME/CFS and Long Covid - whether you're a person with ME, carer, family member, or friend, you are welcome in our supportive and friendly space.

Join via this link: https://t.co/RwUVUmkQ7F

Guidelines on how to join: https://t.co/ypG3uTeA3y

#pwME #MECFS #LongCovid #pwLongCovid #OnlineCommunity #MEConnected #DiscordChannel

[ME Association @MEAssociation]

International ME/CFS Conference 2026 - Video's now available to watch!

This years International ME/CFS Conference took place in Berlin in May, organised by Charité – Universitätsmedizin Berlin and ME/CFS Research Foundation (@MECFSResearch).

You can now watch the video recordings of a number of presentations on their website, including from Prof Chris Ponting of DecodeME, with more videos being added throughout June. 

Watch now: https://t.co/4brEr8qSrL

#MECFS #pwME #MyalgicE #InternationalMECFSConference2026 #Research

[ME Association @MEAssociation]

Did you know that we sell ME/CFS awareness ribbon pin badges?

Perfect for coats, jackets, and bags - wear yours to raise awareness or stand in solidarity with the ME/CFS community.

Only £3.80 with free UK shipping.

https://t.co/30N5foGBuQ 

#MECFS #pwME #MylagicEncephalomyelitis #MyalgicEncephalopathy

[ME Association @MEAssociation]

3/3: Length - 1 hour - 1 and half hour. We will aim to keep the workshop to an hour, but want to be realistic that it may last slightly longer. 

Any questions, or if the above workshops are full and you would like to attend one, please email: [email protected] 

Workshop designed by DWP, facilitated by MELN UK. To read more about the 'workshop in a box' visit the government page:
https://t.co/lBCfqEOUtB

[ME Association @MEAssociation]

1/3: Timms review of PIP: Take Part in Online Workshop 

ME Local Groups Network (MELN UK) will be hosting an online workshop to gather evidence to submit to the Timms review of PIP. They will be hosting two online workshops to provide to opportunity for people with ME/CFS to have their say on the PIP review.

#MECFS #pwME #MyalgicE #LongCovid #PIP #TakingThePIP

[ME Association @MEAssociation]

2/3: Friday 26th June at 11:00am - to register please click the link below: https://t.co/0mskh9MpCH

Wednesday 8th July at 16:30 - to register please click the link below: https://t.co/0mskh9MpCH 

To attend the workshop you will need to fill out the "About You" questionnaire: https://t.co/npnl7TkZfg

[ME Association @MEAssociation]

Dr Charles Shepherd, MEA Hon Medical Advisor, has compiled a list of tips on coping in the hot weather with ME/CFS. You can read them over in our Medical Matters database here: https://t.co/rAFU9VDjmG

#MECFS #pwME #MyalgicE #LongCovid #Heatwave

[ME Association @MEAssociation]

Scottish Parliament: Helen McDade Question on ME and Long Covid Specialist Clinics

Read the question and further information on the blog: https://t.co/3izqwVe2sW

#MECFS #pwME #MyalgicE #LongCovid #Scotland

[ME Association @MEAssociation]

MDPI have published a systematic review of Transcutaneous Auricular Vagus Nerve Stimulation for Long Covid. This review included five studies (n = 154 participants) (three randomized controlled trials (RCTs) and two single-arm studies) that met the inclusion criteria.

Read more: https://t.co/g4NDM4pVVJ

#LongCovid #PostCovid

[ME Association @MEAssociation]

The ME Association have signed Scope's open letter, calling for Work Without Barriers.

Scope are calling on the government to to make employers publish their disability pay gap data. This would hold big employers to account and put pressure on them to make the workplace fairer for disabled people.

If you would like to support the campaign, you can add your name to the open letter using the link below.

Find out more: https://t.co/dN2SeHIgkf
Sign the open letter: https://t.co/LVEyWvbSYb

#MECFS #pwME #MyalgicE #LongCovid

[ME Association @MEAssociation]

A Shropshire patient-led advocacy group is running an anonymised survey to better understand patient experiences accessing NHS services commissioned locally.

If you are local to this area, please consider filling out this 10 minute survey: https://t.co/3pHTmcLROD

#MECFS

[Todd Davenport @sunsopeningband]

I am looking forward to speaking at the @Dysautonomia International Conference in July. My talk will be: "When Should We Push the Energy Envelope? Individualized Rehabilitation Approaches for ME/CFS and POTS." https://t.co/Sj2s984OlH

[ME Association @MEAssociation]

House of Lords Debate: Treatment and research into severe myalgic encephalomyelitis (ME) – 18 June 2026

See our blog for a link to watch the full debate and to read Dr Charles Shepherd, MEA Hon. Medical Adviser's, comments:

https://t.co/x0K4nt8hLf

#pwME #MECFS #SevereME

[ME Association @MEAssociation]

DRUK: PIP Survey - closing date 25th July

"@DisRightsUK (DRUK), Toynbee Hall and the Commission on Social Security have created a survey co-designed with Disabled people on state benefits.

This survey is for people living in England, Wales and Northern Ireland who receive #PersonalIndependencePayment. This is because in Scotland, PIP has been replaced by the Adult Disability Payment (ADP).

Responses collected before the 28th May will be part of a separate submission to the Timms Review, and all responses will be used to support MPs and our organisations campaign for a fairer system."

https://t.co/pnzZpUiAhW

#PIP #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #PostCovid

[ME Association @MEAssociation]

2/2: The debate has been secured by Baroness Scott of Needham Market, and we are pleased her efforts have brought this important issue before Parliament. The discussion provides an opportunity to highlight the pressing needs of people with severe and very severe ME.

The ME Association has been providing background information to Baroness Scott in relation to the action points regarding severe and very severe ME/CFS that are in the DHSC Delivery Plan.

[ME Association @MEAssociation]

1/2: House of Lords Debate: Treatment and research into severe myalgic encephalomyelitis (ME) - Thursday, 18 June 2026 

N.B. It starts at 11am, however this is the penultimate debate on agenda, and it is likely to take place later in the afternoon.

You can watch the debate via either of the following links:

Parliament TV: https://t.co/AYzEcsMjhf

BBC coverage:
https://t.co/Uewll2Wr22

#MECFS #SevereME #pwME #MyalgicE #Debate