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.
Gawcott, Bucks, for all UK
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- Likes 8,692
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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: parliamentlive.tv/Event/Inde…
BBC coverage:
bbc.co.uk/programmes/m002xz7…
#MECFS #SevereME #pwME #MyalgicE #Debate
ALT IMAGE DESCRIPTION: Photo of a hand stick out from under the bed covers in a dark room. Photo of the Houses of Parliament. Heading - "House of Lords to debate treatment and research into Severe ME, tomorrow 18th June - Listen in"
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Stop prescribing exercise for ME sufferers, doctors told | The Times | 10 November 2020 (cutting attached).
#NICEdraftguideline #mecfs #cfsme #MyalgicE #pwme #gradedexercise
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The truth about the welfare concessions
The government says existing claimants are protected. But if your condition improves and you have to reapply — or if you become disabled in future — you’re out of luck.
That’s not reform. It’s rationing.
People with fluctuating conditions like ME/CFS are especially at risk.
A two-tier system is being created:
Protection for current claimants
Harsher rules for everyone else
MPs must reject this deal.
Use our template to email your MP: meassociation.org.uk/bszz
Tell them: #TheConcessionsArentEnough
It’s time to #ListenToME
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ME Association demands instant corrections to article that appeared in 'The Observer' today (29 November 2020): theguardian.com/world/2020/n…
Full text of our letter appears below.
#mecfs #cfsme #MyalgicE #pwme #TheObserver
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. @itvnews Dragons' Den: ME charities criticise BBC show for 'promoting unproven treatment'
"ME charities, including the ME Association, have criticised Dragons' Den for promoting an "unproven treatment" for the condition."
itv.com/news/2024-01-23/me-c…
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #BBC #DragonsDen #AcuSeeds
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Protein found that disrupts energy levels in ME/CFS
Catherine Offord, Science
Researchers have identified a protein that’s present at unusually high levels in the muscles of people with ME/CFS and that disrupts cells’ ability to generate energy.
meassociation.org.uk/t5dy
#MECFS
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Graded exercise therapy is not the right way to treat people with ME or long Covid, argue Dr Charles Shepherd and Rachel Harding | letters, The Guardian | 14 March 2021: theguardian.com/society/2021…
#GETlost #longcovid #gradedexercise #mecfs #cfsme #MyalgicE #pwME
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Graphic - Living with ME/CFS: 'Out of Reach'
A graphic that accurately represents the losses that many people with ME/CFS endure due to this awful disease and its debilitating symptoms.
Thank you to LuBaker Art for allowing us to share with our followers.
Credit: instagram.com/lubakerart/
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEWeek
ALT IMAGE DESCRIPTION: A black and white cartoon-style image with a person in bed with the following things on a shelf out of reach. PLANS HOPES & DREAMS, FITNESS, KIDS, CAREER, GET DRESSED, EAT or SHOWER. Lu Baker - LIVING WITH ME/CFS Credit: https://www.instagram.com/lubakerart/
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New Scientist: “We’ve shown definitively that it’s a fault in mitochondria,” meassociation.org.uk/2017/11… @meassociation #MECFS #Mitochondria
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In a first-time test of public opinion, Britain’s oldest charity for people with the energy-sapping disease Myalgic Encephalomyelitis will today start asking hundreds of thousands of sufferers whether they’re satisfied with the support they’re getting from the National Health Service.
Martine Ainsworth-Wells, campaigns director at the ME Association, said: “We know the picture will be patchy – but we want to hear directly from people with the illness, or from those still without a diagnosis, how well or indeed how badly they think the NHS is performing.”
meassociation.org.uk/qb74
#PressRelease #pwME #MECFS
#MyalgicE #MyalgicEncephalomyelitis
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Always worth sharing, and especially during #DisabilityPrideMonth
Credit: @chronicluvclub
#MECFS #MyalgicEncephalomyelitis #LongCovid #HiddenDisabilities #InvisibleIlness #Disability #DisabilityPride
ALT IMAGE DESCRIPTION: A graphic made by @ChronicLuvClub which shows a row of people with disability aids and a row of people underneath. Wording - Some disabilities look like this: and others look like this: This means you never know who has a disability that you can't see. The Chronic Love Club logo (bottom right)
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"Gaslighting from doctors is a huge thing for people with chronic illnesses; it is traumatic to believe that you are causing your own symptoms, and to realise that no one in the medical community is willing to help."
Read @littleworldofliv blog here: bit.ly/3cmO2vn
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BBC pulls Dragons’ Den episode after ‘unfounded claims’ of curing ME
theguardian.com/society/2024…
#pwME #MECFS
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. @DailyMail @BBCDragonsDen entrepreneur who was the first to get 6 offers for device that 'cured' her ME is reported to advertising standards for 'selling snake oil' as doctors slam BBC show for 'misleading desperate patients'
The ME association has reported Acu Seeds to the Advertising Standards Agency and written to the BBC and Chair of the Culture, Media and Sport Committee and Chair of the Health and Social Care Committee."
dailymail.co.uk/femail/artic…
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #BBC #DragonsDen #AcuSeeds
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Cutting from The Times today, Saturday 20 July 2024 (see below):
Emma Barnett will interview #TimesONeill Sean O'Neill about his daughter Maeve's death in the next hour or so on BBC R4 Today programme.
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“There has to be a complete rethink of the medical advice given to sufferers of M.E. as even gentle exercise can set them back for weeks and, in some cases, months.” @CMonaghanSNP
meassociation.org.uk/2018/02… @meassociation #MECFS #PACETrialDebate #NHS #NICE #DWP
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We need to talk...
This statement is completely untrue and is not only just upsetting for those with ME, but could be detrimental to their health.
People with ME, we hear you. We will not stand by this statement.
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The ME Association and ME Research UK are jointly funding a new 12 month study using nano electronic testing which could produce a diagnostic marker for people with ME/CFS.
Read the full article here: meassociation.org.uk/r2ua
#pwME #MECFS #research #biobank @MEResearchUK
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1/3 Symptoms of ME/CFS
ME/CFS is a complex multisystem disease with a wide range of disabling symptoms.
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1/2 @thetimes NHS told to stop blaming ME patients for being ill and improve care (behind a paywall)
"The NHS has been told to stop dismissing and stigmatising patients with myalgic encephalomyelitis (ME) under a government plan to overhaul care for the debilitating illness."
It continues:
"The interim plan, led by the Department of Health, is the first government strategy aimed at improving the lives of people with ME and is open to consultation for eight weeks. It acknowledges that ME patients struggle to access care, treatment or to get a diagnosis."
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. @BBCNews Chronic fatigue is not in your head, it's in your blood - experts (not an appropriate title)
Prof Chris Ponting said: "For so long people with ME/CFS have been told it's all in their head. It's not. We see it in their blood"."
bbc.co.uk/news/articles/cy8k…
#pwME #MECFS #MyalgicEncephalomyelitis #Research
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Breaking News: NICE decides to Fully Update its guideline on ME/CFS! meassociation.org.uk/2017/09… @meassociation #MECFS #Advocacy #NICE
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Today is International ME/CFS Awareness Day!
ME/CFS is a complex multisystem disease with a wide range of disabling symptoms.
Factsheet: What you need to know about ME/CFS is available to download for free via the link below:
meassociation.org.uk/1n2w
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEAwareness #MEAwarenessDay #MEAwarenessWeek #MEAW2023
ALT IMAGE DESCRIPTION: A blue/pink toned image with a blue awareness ribbon with the wording: International ME/CFS Awareness Day. The title reads: Myalgic Encephalomyelitis with the hashtag #MEAWARENESSDAY underneath. The ME Association website URL (bottom left) and the ME Association logo (bottom right)
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1/3 @AdvSciNews First ever diagnostic test for chronic fatigue syndrome sparks hope
This important research into finding a diagnostic biomarker is being funded by the #MEAssociation (MEA) #RamsayResearchFund (RRF) and is using blood samples from the @mecfsbiobank - which is also funded by the MEA RRF
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BBC presenter on ME debate: 'Surely it's not beyond the wit of man to say there are millions affected by ME, let's get together and figure it out...' 'what is the block stopping people getting around the table and sorting it out?'
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BBC News: Long Covid patients gaslit by GPs, study finds
Dr Jayadeva, who co-authored the study, said: "We found that people with long Covid are often led to fend for themselves in a system that isn't adequately informed about their condition and doesn't offer them appropriate medical support."
Read more: bbc.co.uk/news/articles/c0r7…
#LongCovid #PostCovid #PostCovidSyndrome
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The ME Association’s Position Statement on the Proposed Welfare Reforms
The ME Association strongly opposes the series of reforms set out in the government’s Pathways to Work Green Paper.
Read more here: meassociation.org.uk/meap
#pwME #MECFS #LongCovid #DisabilityBenefits #BenefitsCuts #WelfareReform #TakingThePIP #FightTheCuts
ALT IMAGE DESCRIPTION: An image of the Houses of Parliament with a document (with paperclip) document. Title: The ME Association's Position Statement on the Proposed Welfare Reforms. The ME Association Logo (bottom right).
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'THE Government are to be asked to do more to help ME patients who have spent the last seven years suffering as a result of bad science.' thenational.scot/news/160336…
@CMonaghanSNP
#PACETrialDebate #MECFS #Scotland #WestminsterHall
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HUGE congratulations to our very own ME Champion, Jessica Taylor-Bearman, who won the People's Book Prize last night!
Jessica's book, 'A Girl Behind Dark Glasses', shares the harrowing story of the highs and lows of ME.
We are so proud of you!!
@jayletay
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It's Severe ME Awareness Day - 8th August 2021
Please let's take some time to remember those who have sadly lost their lives to this devastating disease.
Show the Severe ME community support & solidarity by commenting below or adding a heart
#pwME #SevereME #SevereMEweek2021
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. @DrNighatArif Thank you for speaking about #MECFS this morning on @ThisMorning The ME Association and the ME/CFS community really appreciate it!
Please do consider returning to the topic of ME/CFS, as we estimate that more than 1.25 Million people in the UK live with a diagnosis of ME/CFS and Long Covid (many of which may have #PostCovidMECFS)
The ME Association has been pointing out the pathological and clinical overlaps between the two conditions since May 2020.
#ThankYou #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #PostCovid
. @ThisMorning Earlier today they covered ME/CFS and Ear Seeds - Starts at 49.25
@DrNighatArif speaks with @radioleary and @sianwelby speak about ear seeds, @BBCDragonsDen and #MECFS
Watch the segment here: itv.com/watch/this-morning/1…
#pwME #MyalgicE #MyalgicEncephalomyelitis #BBC #DragonsDen #EarSeeds #AcuSeeds
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Dr Muirhead says:
"It's important to make the point that patients are laying down because they feel that ill."
She continues:
"These people aren't ill because they are laying down, they are lying down because they are ill"
#pwME #MECFS #MEAwareness
A Conversation About #MyalgicEncephalomyelitis with Dr. Nina Muirhead - Please share to help raise awareness of #MECFS
Watch here: piped.video/watch?v=ilcben3s…
#pwME #MEAwareness #MyalgicE
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1/2 Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!
In early October, the ME Association sent a major mailing to all GP surgeries.
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"If I don't look sick to you, it's because you don't see me on my bad days."
Can you relate?
Image Credits: Beth Wilson [@doodlebeth]
#MECFS #PWME #ChronicIllness #InvisibleIllness #InvisibleDisability #ButYouDontLookSick #CodewordPineapple
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Oslo Chronic Fatigue Consortium 'New Hope' is "More Unhelpful Nonsense"!
ME Association Statement.
After the appalling GP learning module from New Zealand last week, which was recommending graded exercise therapy and the Lightning Process for people with ME/CFS, we now have more unhelpful nonsense from the 'Oslo Chronic Fatigue Consortium' aimed at health professionals in Norway.
meassociation.org.uk/xbx4
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Information on ME/CFS for GPs in New Zealand - Definitely not recommended
The information and guidance in this training module for GPs in New Zealand on the treatment of ME/CFS is really awful
Not only does it state that the recommendations in UK NICE guideline have been 'severely discredited by world experts in the condition', it goes on to recommend graded exercise therapy (GET) and the Lightning Process (for children age 12 to 18) and claims that pacing 'has not been shown to be effective'!
If a doctor here in the UK were to prescribe two specific treatments that were not recommended by NICE, and a patient then suffered harm as a result, the doctor could then face legal consequences
However, the UK NICE guideline recommendations do not form part of official guidance on ME/CFS in New Zealand
I hope that the New Zealand ME/CFS charities will call for the immediate withdrawal of this learning module
The MEA would be willing to support any such action
Dr Charles Shepherd
Hon Medical Adviser, MEA
meassociation.org.uk/pqyk
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Funding for the world’s largest genetic study into myalgic encephalomyelitis (M.E.), led by a partnership of patients and scientists, has been announced today.
#MECFS #DecodeME #DNA #Genetics #MEResearch #PwME
theguardian.com/society/2020…
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We see you. We hear you. We care.
@spoonie_village nailing it in one!
#Coronavirus #ChronicIllness #MECFS #Isolation #PWME
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Significant changes need to be made to how people with conditions like ME/CFS are being assessed by the DWP.
Today Dr Charles Shepherd and Carol Monaghan MP will meet with senior representatives from all companies conducting these medical assessments.
#MECFS #DWP #Disability
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We love you @mermhart 🥰 Thank you for your continued advocacy and I hope you can join in with us in campaigning during ME Awareness Week and Month! 🌟
The whole 5 mins of this video on chronic illness on my insta or FB page. It would mean a lot to me if you listened. It’s an important time to raise awareness for all those living with chronic illness as their personal lockdown will continue long after the global one lifts.
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MEA Statement: Graded Exercise Therapy is not a safe and effective treatment for ME/CFS or Long Covid.
meassociation.org.uk/2021/03… #pwME #MECFS #LongCovid #TheGuardian
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1/3 BLOG: Let’s drop Chronic Fatigue Syndrome
The ME Association has often said: "That chronic fatigue syndrome is like calling dementia, chronic forgetfulness syndrome, and feel it is totally inappropriate and does little to reflect the lived patient experience.
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1/2 Thank you to @SajidJavid for meeting to discuss ME/CFS research. Dr Shepherd was happy to attend along with researchers, charity and patient representatives and representatives from the government bodies who fund research (MRC, NIHR....) A very constructive meeting.'
I met with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) experts alongside @LucyChappell2 to discuss what needs to be done to better understand the condition.
Those affected have been neglected for too long. I am committed to more research & a cross-govt plan.
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“The message is clear – CBT and GET are not effective ways of treating a serious neuroimmune disease. The sooner this message gets across to health professionals the better.” Dr Charles Shepherd. meassociation.org.uk/2018/03… @meassociation
#MECFS #PACETrialDebate #CBT #GET
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Long segment about #MECFS on BBC Breakfast (15 mins) includes interviews with Dr Binita Kane, Dr William Weir, Karen Hargrave and Oonagh Cousins Mentions symptoms, severity, history, Melvin Ramsay, psychological framing, NICE guidelines, problems receiving care for severe patients, debunked Graded Exercise and pacing.
piped.video/watch?v=AuqthHAD…
#MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid
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Mayo Clinic removes harmful GET and CBT as a treatment for ME/CFS from their website.
Let's hope that changes like this, although not in our own country, will push for the much overdue change in our own update of the harmful NICE guidelines.
mayocl.in/32EgRzZ
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"No-one with this condition has an easy ride. Not one person. Those with ‘mild M.E.’ lose 50% of their function."
@theslowlane_ME is a blogger & we have published one of her pieces on our blog titled "Caution and Controversy"
Read here: meassociation.org.uk/2020/06… #MECFS #PWME
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1/3 The ME Association raises concerns about new research promoting CBT as a treatment for ME/CFS
Dr Shepherd, Honorary Medical Adviser to the ME Association comments:
"This is another desperate attempt to persuade patients and their doctors that ME/CFS can be successfully treated using CBT."
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Research: Myalgic Encephalomyelitis is clear to see in the blood - By @sjmnotes
"In a huge study, researchers at Edinburgh University analysing blood biomarker data have found many differences between people with ME and healthy controls. "
Read more here: meassociation.org.uk/favr
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Research #Blood
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We are very concerned about a resource by Oxford Health NHS Foundation Trust which had inaccurate & potentially harmful information in it. We signed an open letter to call for the leaflet to be withdrawn.
It has now been removed from their website.
meassociation.org.uk/2020/04…
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Statement from the MEA social media manager: We are aware that a woman has started threads/posts/etc claiming we say exercise cures ME. This is completely not the case. Unfortunately, our comments keep getting deleted, but the MEA do not recommend GET.
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MAGENTA Trial: #GET is not an effective treatment for ME/CFS
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association says:
The key findings are:
- GET is not an effective treatment for ME/CFS.
- GET is not a cost effective treatment for ME/CFS.
- GET can cause harm in ME/CFS.
Read Dr Shepherd's comments in full here:
meassociation.org.uk/brge
#pwME #MECFS #MyalgicE #GradedExerciseTherapy #MyalgicEncephalomyelitis #Research
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** TW: Upsetting Content **
The Press Awards 2025: Senior Writer at @TimesONeill wins Campaign of the Year for his coverage of ME/CFS and the sad death of his daughter Maeve Boothby-O'Neill.
The judges praised “a compassionate and powerful piece of public service journalism”.
The ME Association would like to echo what the judges have said and pass on our sincere thanks and congratulate Sean on winning this award.
Read more here: thepressawards.com/winners-2…
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #PressAwards #MaeveBoothbyONeill #MaeveInquest
ALT IMAGE DESCRIPTION: An image of an award ceremony rope barrier. Title: The Press Awards 2025: Senior Writer at The Times, Sean O'Neill wins Campaign of the Year for covering ME/CFS. The ME Association Logo (bottom right).
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The ME Association writes to Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert
Dr Charles Shepherd, Hon Medical Adviser, MEA has urged Oxford NHS Trust
" to urgently remove the offensive language in this advert that puts the communication blame on patients rather than health professionals"
meassociation.org.uk/zwib
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid #jobadvert
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Digital Spy: Dragons Den episode 'damaging'
"If a tiny stick-on seed featured on Dragon's Den can cure everything, why are we not whacking them all over our pressure points and skipping off to do a full day's work followed by an ultra marathon?"
meassociation.org.uk/1wst
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"We're closing in on understanding how this disease works," says W. Ian Lipkin, MD, director of CII and the NIH Center for Solutions for ME/CFS, and the John Snow Professor of Epidemiology at the Mailman School. sciencedaily.com/releases/20…
#MECFS #Metabolome #Microbiome #Biomarkers
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**TW: Upsetting Content** Guardian: Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen?
"Chronic fatigue syndrome [ME] is as physiological as a broken leg. For the sake of those who have it, we must learn all we can from this tragic case"
"Last week, the coroner at the inquest into the death of Maeve Boothby O’Neill published her damning report on the prevention of future deaths. Maeve was suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition afflicting hundreds of thousands in the UK. ME/CFS robs those who have it of energy. Severe cases can shut down every aspect of their lives."
Read in full:
theguardian.com/commentisfre…
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #MaeveInquest
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Severe ME Awareness Day - 8th August 2023
Please share a heart to show your support for those who are severely or very severely affected by ME.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #SevereMEWeek #SevereMEWeek2023
ALT IMAGE DESCRIPTION; A burgundy background with an image of candles burning on a black background. Title: Severe ME Day - 8th August 2023. Wording - Please join us in solidarity to show support for those who have severe ME and to remember those who are sadly no longer with us.The ME Association logo (bottom right).
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"The Spoon Theory"
🥄 The Spoon theory is a useful analogy to explain your limited energy levels and the effects of fatigue or other symptoms to other people.
🥄 It may not represent the impact of all symptoms of ME/CFS, but many people find it useful
🥄 Do you use this?
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Dr William Weir and Dr Charles Shepherd are both involved in helping Millie and her family.
The ME Association shares the Secretariat for the APPG on ME with Action for ME and we support the work of the APPG and its upcoming focus on severe ME. The group will be reviewing the lack of specialist care available to people with severe ME and identifying opportunities to improve the availability of support.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #BringMillieHome
We have issued a statement in response to the concerning reports surrounding Millie's care.
Full statement available on our website: actionforme.org.uk/news/brin…
#BringMillieHome
#pwME #MyalgicE #SevereME
ALT Orange border encases text "#BringMillieHome - Our Statement. We will continue to take action to ensure that people with severe ME receive the treatment and care that they require, including supporting individuals directly when requested, whilst reducing the stigma and misunderstanding that still surrounds the condition. Full statement available on our website." Action for M.E. logo follows to the right.
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"Chronic illness doesn't have an end date"
Perfect quote from @mermhart who has been an incredible advocate for us all lately. Thank you for using your platform to spread awareness!
#chronicillness #PWME #MECFS #isolation
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Disputed therapies for myalgic encephalomyelitis abandoned
The Times has an article covering the new NICE guidelines on ME/CFS and states that GET and CBT will no longer be recommended as a treatment to Doctors.
meassociation.org.uk/uk3w
#pwME #MECFS #MyalgicE #NICEguidelines
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Today is ME Awareness Day. The day we come together, raise awareness and share with the wider world what a debilitating illness ME is.
We have been campaigning all month long and we cannot do all of this without your amazing help, so we thank you all so much.
#MEAwarenessDay
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Happy New Year! We hope 2020 brings better health and happiness, and ultimately, brings us closer to finding a cure for ME. Thank you for your ongoing support, from all at the ME Association.
#MECFS #PWME #MEAssociation
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Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid meassociation.org.uk/2020/10…
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"There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate."
thecanary.co/discovery/analy…
@TheCanaryUK #MECFS #MEDebateParliament2019
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“The data used in the PACE trial is flawed and we are grateful to Ms Monaghan to securing this important debate...” Dr Charles Shepherd.
heraldscotland.com/news/1598… …
@CMonaghanSNP
#MECFS #PACETrialDebate
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The ME Association refutes the letter regarding graded exercise therapy (GET) as a treatment for ME/CFS published in the Guardian
Read more:
meassociation.org.uk/ttqt
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #NICEGuideline #GET #CBT
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"People living with M.E. have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. One SNP MP, though, is making moves for people living with M.E."
thecanary.co/discovery/analy…
@TheCanaryUK @CMonaghanSNP #MEAwareness #MEDebate2019 #UKParliament
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This morning, the MEA had a very successful meeting with @_ukactive .
After the organisation shared a tweet by Professor Chris Whitty which was both upsetting and potentially harmful for those with ME, they engaged with us to learn more about ME... P1/2
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The Guardian: NHS wards not capable of treating ME patients, doctor tells Exeter inquest
Professor @DocStrain said: “This is a disease that has been tremendously stigmatised mainly because it doesn’t have a diagnostic test. Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease.
That’s a travesty and something that if this hearing can address, then that will be a massive step forward. This is a physical disease.”
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #MaeveInquest
The @Guardian NHS wards not capable of treating ME patients, doctor tells #Exeter inquest
"Speaking at the inquest of a woman who died with ME in 2021, Dr @DocStrain also expressed concern at aspects of the treatment Maeve Boothby O’Neill received at the Royal Devon and Exeter hospital."
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #MaeveInquest
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Dr Charles Shepherd has written a ‘To Whom It May Concern’ letter that can be given to GPs, employers etc explaining why ME/CFS is a vulnerable medical condition in relation to COVID-19. This is a free download from the MEA website:
meassociation.org.uk/wp-cont…
#PWME #MECFS
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The @DailyMirror Dragons' Den ear seeds scandal hopeful 'likely' broke advertising rules claims watchdog
mirror.co.uk/tv/tv-news/drag…
N.B. The ME Association also submitted a complaint to the Advertising Standards Agency (ASA) and has received a similar response from the ASA.
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #BBC #DragonsDen #EarSeeds #AcuSeeds
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Official transcript of yesterday's #PACETrialDebate now available:
"Finally, I thank the Countess of Mar and the ME Association for helping me to prepare for today. I also thank those living with ME, whose voices are not being heard."
hansard.parliament.uk/common…
@CMonaghanSNP #MECFS
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“People often tell me I don’t look sick. I know these people mean well and their intentions are good but that doesn’t make it any easier. I know full well I look healthy when I’m out in public with makeup on and my hair washed".
metro.co.uk/2019/04/28/dont-… #InvisibleIllness
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Asthma and ME sufferers miss out in database chaos | The Times | 3 March 2021 (see image attached)
#asthma #mecfs #cfsme #MyalgicE #pwME #vaccinepriority #group6chaos #covid19
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MAGENTA Trial: GET is not an effective treatment for ME/CFS
Dr Charles Shepherd, MEA Hon. Medical Adviser says:
The key findings are:
- GET is not an effective treatment for ME/CFS.
- GET is not a cost effective treatment for ME/CFS.
- GET can cause harm in ME/CFS.
Read Dr Shepherd's comments in full here:
meassociation.org.uk/brge
Also, the following blog - @davidtuller1 Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’? - may be of interest:
virology.ws/2024/03/10/trial…
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #GradedExerciseTherapy #GET #Research
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Well done Katie, and well done to her school!
"They let me take my exams at home and very kindly some teachers came to invigilate. I wouldn't have been able to do it without them and their support."
bbc.com/news/uk-england-york…
@BBCNews #MECFS #ExamsatHome #Education #Schools #York
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Invisible Disabilities Week. Where we discuss, debate and inform others on what life is like with a disability that you cannot see.
There are certain challenges that we face due to our ME being invisible, what do you find is the biggest challenge that you face?
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"ME/CFS is a serious neurological condition which can be fatal." Dr Nina Muirhead — Royal College of Surgeons.
rcseng.ac.uk/news-and-events…
#MECFS #PwME #MEAwareness #MEDiagnosis #MESymptoms #LivingwithME #MedicalEducation #RCS #DrNinaMuirhead
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Article from @statnews 'Long Covid is a new name for an old syndrome
Dr Charles Shepherd, Hon Medical Adviser MEA comments
"Nothing new here but it really is astonishing to witness how long it is taking most of my medical colleagues (and most health journalists) to realise that there is a very large clinical and pathological overlap between Long Covid and ME/CFS and that people with Long Covid could benefit from what we know about the management of ME/CFS"
meassociation.org.uk/6joe
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More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
meassociation.org.uk/2020/06… #MEAwareness #MECFS #PWME
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“I cannot recall a parliamentary meeting where we have had so much genuine interest in ME/CFS” meassociation.org.uk/2017/10… @meassociation #MECFS
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Labour government commits to publishing the final delivery plan on #MECFS
"The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final #DeliveryPlan, which we aim to publish in the winter of 2024/25."
meassociation.org.uk/dplg
#pwME #MyalgicEncephalomyelitis #DHSC
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We are excited to announce the funding of a new research study that will examine the feasibility of measuring various physiological data during daily activity in people with M.E. Funding for this new study has come from the MEA Ramsay Research Fund.
meassociation.org.uk/2020/05…
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“My daughter Merryn had Very Severe M.E. and died on 23rd May 2017, aged just 21. She spent months in hospital and was totally bed bound for the last 3 years of her illness.”
#TheRealME
Our #GoBlue4ME campaign: buff.ly/2uZU5Rq. #MEAW2019 #VerySevereME #MECFS
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We are delighted to announce BBC News will be featuring 'M.E. and me' throughout the bank holiday weekend, and beyond! 😀
More people will get to hear about M.E. in the UK and around the world!
bbc.co.uk/programmes/p065b4l… …
@BBCNewsbeat @BBCNews @BBCWorld #MEDocumentary #MECFS
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#PETITION: #MECFS: Changing the Definition - Please consider signing and sharing this petition
"Elsevier (publisher) - Petition to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook."
We have worked alongside the Grace Charity for M.E. and the 25% ME Group , @TymesTrust, Dr. Nina Muirhead, and @DoctorswithME to help bring this petition to fruition.
change.org/p/me-cfs-changing…
#pwME #MyalgicE #MyalgicEncephalomyelits #MedicalTextBook #medicaleducation
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Rest in Peace Jennifer Chittick. ME sufferer, campaigner, beloved daughter and sister. It is with much shock and sadness that we report Jennifer died on Tuesday after a ten-year battle with M.E.
meassociation.org.uk/2019/05…
#MECFS #PWME #MEAwareness #ScrewME
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1/2 NICE pauses publication of updated guideline on diagnosis and management of ME/CFS
The ME Association says: "We have just received this very unexpected news from NICE. We know nothing more at the moment other than what is in the press release."
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“Now that the study has established that it’s inflammatory, we can look for those drugs that treat inflammation,” Montoya said. “I could die happy if I knew that was the door that was opened.” #MECFS #Inflammation #Cytokines #Research
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An early day motion has been launched by Carol Monaghan MP, and she needs your help in asking other MPs to sign the motion increasing the chance it will lead to an actual debate in parliament.
meassociation.org.uk/2018/05… @meassociation @CMonaghanSNP #MECFS #EDM1247 #MEAwarenessWeek
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ME Association receive apology from @OUHospitals regarding 'offensive’ job advert
We have now received an apology from the Oxford University Hospitals Trust NHS Foundation Trust and Dr Shepherd will be writing to thank them for taking this action.
meassociation.org.uk/6s4y
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It's #SevereME Awareness Day
Severe ME Day aims to raise public awareness of this illness and show solidarity with those who have severe #MyalgicEncephalomyelitis and remember those who have sadly passed away.
#pwME #MECFS #MyalgicE #SevereME #SevereMEDay #SevereMEWeek #SevereMEWeek2023
ALT IMAGE DESCRIPTION; A burgundy background with an image from our library of Real ME images (i.e Real people with ME). Title: Severe ME Week Wording 8th August is Severe ME Awareness Day. The ME Association logo (bottom right),
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