Adam

“People with ME have sadly had to endure far too much disbelief and delay.” Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @investinmeresearch.bsky.social 2026 International ME Conference #IIMEC18.

Highlights from BBC Radio Gloucester. Helen Stout, who has lived with ME since 2020, and Clare Ogden from @actionforme.bsky.social say the UK government’s £4.75m research investment is welcome, but a ‘drop in the ocean’.

“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.” Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS

“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.

The CDC made a public awareness ad about #MECFS in 2007. I’m not aware of a similar public health campaign since, despite increasing numbers linked to long Covid and the lack of awareness that exercise can make people worse.

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

“It made me much worse… Most people I know with ME have exactly the same experience with it.” Annette Barclay, a patient with #MEcfs describing her deterioration following Graded Exercise Therapy.

“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

“Waking up, it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.” Rhi has had #MEcfs for over 20 years.

“They’ve had their lives completely demolished by this illness.” Millions are living with #LongCovid while society has moved on. Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

Karen Quinn spent most of the 1990s bedbound with #MECFS. “We didn’t have Sky, we didn’t have computers, we didn’t have internet… I just laid there.” (Highland Radio, Ireland)

BBC Morning Live covered the new £4.75m UK government funded #MEcfs genetics study yesterday, which will sequence 6,000 DNA samples as part of the wider DecodeME project. Unfortunately, Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.

“These people have been not only severely affected, but severely neglected by the National Health Service.” Dr Charles Shepherd speaking on UCB Radio about the lack of NHS care for people with severe ME/CFS during ME Awareness Week.

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

TW: Jon Stewart recently joked about hantavirus coverage and said: “this virus can cause Chronic Fatigue Syndrome, mostly amongst the experts who have to repeatedly answer the same questions.”

Channel 4 coverage of the new £4.75M UK government funding for SequenceME. “For decades, many people with ME have been told it is in their heads… But now, a new project will look for the answer in our very DNA, with the world’s first genomic study into ME.” #MECFS

What is #MECFS? A brief overview of symptoms, diagnosis and management based on the 2021 NICE guideline. It’s not being tired all the time, patients have an energy impairment that dramatically limits their activity.

“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.

Wes Streeting wants GPs to stop writing so many sick notes and send people to the gym. Worth remembering Brynmor John MP had #MECFS and died on Westminster Bridge in 1988 after exercising in the House of Commons gym. He had been advised to exercise his way back to fitness.

“To fight for ourselves is dangerous.” @maggieboxey.bsky.social has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.

Short German TV clip. Kalea, 17, has lived with #MECFS since 2019. Post-exertional malaise means she must carefully ration her energy, even small activities can trigger a drastic deterioration in symptoms, leaving her unable to see anyone, in a dark, quiet room.

Natasha Devon raising concerns about Simon Wessely being involved in the government’s mental health review. Wessely has “already said that he thinks that mental illness is overdiagnosed. So he's not coming from a place of impartiality”. 25 April 2026.

I’ve just donated to @DavidTuller1.bsky.social’s crowdfunding campaign again. I really hope his work investigating #MECFS, #LongCovid can continue. These highlights sum it up… Everything they’ve done for 30 years is not only “bad science” it’s actually been “really harmful” to people.

Short German TV clip. #MECFS cases have doubled since 2020, many linked to #LongCovid. Patients describe lives wiped out overnight, years housebound or bedridden, and having to choose between showering or playing with their child.

Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness. Dr Nina Muirhead, interview in The Times (2020)

Jo Platt MP, who lives with #MECFS and #LongCovid, told UK Parliament the COVID-19 Inquiry found Long Covid was repeatedly dismissed despite affecting nearly 2 million people. She asked the Government what steps it will take to act on the Inquiry’s findings, 23 April 2025.

“She actually asked me a couple of times, you know, am I going to die? She felt so unwell.” Isla is 10 and developed #MECFS after a COVID infection. She is 95% housebound and just wants to “have fun and do things with her friends”. From BBC Lifeline: Action for ME

Hearing the stories of people with #MECFS who took the Decode ME results to their doctors and for the first time were believed is incredibly powerful. Sonya Chowdhury CEO of Action for ME on BBC Lifeline and how they are building on this work to move closer towards treatments.

“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.” Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled. From BBC Lifeline: Action for ME

“They’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. From BBC Lifeline: Action for ME

Olympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS

Brief clip: Whoopi Goldberg raises concerns about #LongCovid on The View. She says one of her employees’ mothers has the condition and can no longer go out to do her job, so now works from home. She also raises concerns about the CDC.

As George Monbiot says in this clip @davetuller1.bsky.social’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article. I’ve just donated to David’s crowdfunding campaign to help keep his work going.

Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.

Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from Hope 4 ME & Fibro NI 2026

Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from Hope 4 ME & Fibro NI Collaboration for Change 2026

#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.

With Suzanne O’Sullivan claiming a ‘large proportion’ of #LongCOVID is psychosomatic on the Amol Rajan podcast, I’m resharing this clip from 2021 of Dr Xand van Tulleken on BBC Morning Live “You can always find some doctor, some professor to give a quote to a paper saying it’s all psychosomatic…”

Clip from German public broadcaster ZDF’s science programme MAITHINK X – Die Show discussing claims made by the Gupta Programme, a brain-retraining approach for ME/CFS.

Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCovid #MECFS #Fibromyalgia and #POTS. “I'm gradually getting worse and it just scares me that if it continues to decline, life is going to get even smaller.”

Darren Parkinson (@greendarrenshipley.bsky.social) says #LongCovid has “completely devastated” his life. His body feels “poisoned”, the fatigue is 24-7 and overwhelming. He spends most of his time lying down and can only shower once a week.​​​​​​​​​​​​​​​​

Emma has #LongCovid and slowly built up to working 30 hours a week over 3 years but had to take sick leave. She then got COVID again and is back to square one. Reinfection risks making Long Covid worse.

Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Clip from German TV science program.

#MECFS mentioned briefly in yesterday’s parliamentary debate on EDS. Liz Twist MP highlights EDS overlaps with ME/CFS, MCAS and PoTS, and Minister Sharon Hodgson says the NIHR is already expanding its work on overlapping conditions including ME/CFS and post-viral syndromes.

Dr Charles Shepherd (@meassociation.org.uk) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed from NICE guidance in 2021.

Powerful clip @johnthejack.bsky.social on the BPS model for #MECFS It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently, they thought they knew what he needed better than him.

6 years since the first UK lockdown. #LongCovid hasn’t gone away. ONS estimates from 2024 suggest ~2 million people in England & Scotland. Every infection carries a ~1 in 50 chance of developing long Covid that could last anything from four weeks to being effectively permanent.

Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCOVID #MECFS #Fibromyalgia and #POTS. Her husband had to give up his job as a policeman after a Covid infection as well ”it has ruined our lives”.

BBC Wales Today. Carer and campaigner Rob Messenger, who has two children with #MECFS in their 30s, says there are no specialists to turn to and describes care for Severe and Very Severe ME in Wales as a ‘desert’.

Tomos is bedbound with Severe #MECFS. His mother says at his worst he looked as if he was “paralysed”, “a dead weight”, unable to open his eyes, talk or move. Clip from BBC Wales Today.

Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

Clip from Radio New Zealand: A former city councillor describes the impact of #LongCOVID. Going from a busy, active life to, at her worst, living on her couch unable to walk, using a commode beside her.

In response to a question from @ZackPolanski.bsky.social on #LongCovid @DrAmirKhanGP.bsky.social says “I feel really helpless when I see them.” People who were healthy just a few years ago, a lot of them have lost their independence & ability to earn and there’s nothing in place to look after them.

People with #LongCovid, #MECFS and similar conditions don’t get the recognition and funding they deserve — @DrAmirKhanGP.bsky.social Unless decision makers have been personally affected, it’s almost as if they think ‘it won’t happen to me’ — @ZackPolanski.bsky.social

Clip #MECFS 1993: Many believed it was psychological or simply depression, as many still do today. A patient also describes her frustration at appearing well but “paying for it for weeks” afterwards. An early description of post-exertional malaise.

“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.

12-yr-old Aveline loved trapeze and sports. Long Covid changed everything. “Within a day my entire life was flipped around… it’s been a constant battle against my own body.” “It’s really isolating. All my friends go to school together and I would give anything to be there.”

Patients with #MECFS in Living Hell (1993) describe their interactions with doctors. “Drug addict” “Alcoholic” “School phobia” “210 doctors told me I was crazy” Patients still report similar experiences today.

NICE committee member Adam Lowe says one person left for personal reasons. It’s not clear why the other two left, but Adam suggests it could be due to external pressure. For example, one member was asked to account for a patient refusing GET because of the draft guideline.

#MECFS “is a real hidden illness and it can shrink lives” Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association. They are taking on the challenge for their daughter, who lives with #MECFS

6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.

Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

Clip 3 BBC Politics North: Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

Clip 2 from BBC Politics North: Dr Margaret O’Hara of Long Covid Support warns the condition is being “swept under the carpet” as clinics in the North East are set to close. Long Covid expert Dr Rae Duncan says Covid is not over and cases of long Covid are rising.

Clip from BBC Politics North: A GP describes how #LongCovid ended her career after she needed a wheelchair within a year of contracting the virus. She says patients are being forgotten by politicians and the NHS as the last dedicated clinic in the area prepares to close.

Intro to a 1993 documentary on #MECFS When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.

TW: Assisted Suicide Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound. At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

Edited clip from German TV: 14-year-old Philipp developed ME/CFS following a Covid infection. He hasn’t been to school in a year and barely sees his friends. His mother says we have never felt so helpless in our entire lives. #MECFS #LongCovid

NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.

Edited Clip from BBC inside science ME/CFS diary: Jo @therealmecfs.bsky.social talks through a week with #MECFS: showering once a week, rationing mental and physical energy, pacing carefully, and experiencing post-exertional malaise if she exceeds her limits.