Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
- Tweets 6,697
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- Followers 8,159
- Likes 17,222
Pinned Tweet
My #MECFS scandal explainer video has just passed 200,000 views.
Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.
medium.com/@abrokenbattery/m…
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"For years and years I've been passed from doctor to doctor with me saying I'm so fatigued I've got all this pain... and noone could give me any answers."
Miranda Hart talking about her diagnosis of ME caused by Lyme Disease on the Graham Norton show. #MECFS
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Highlights Baroness Brinton speaking at the Long Covid debate in the House of Lords 17 Nov 2022. She describes a study that is only looking at psychological factors as "breathtaking". #longcovid #mecfs
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BBC Look North. Dr Becky Williams, who has long Covid, and meets the criteria for ME/CFS has joined over 200 other healthcare workers calling on the government to provide better support. #ThereForME campaign
BBC Look North segment on #MECFS and #LongCovid (3 mins)
A doctor from Leeds who developed long Covid and the debilitating effects of ME has said NHS patients like her have been “left to rot” and calls for better NHS care
piped.video/vRZTZdnHb-0?si=EAEC…
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Clip from The Golden Girls (1989): Before being diagnosed with #MECFS, Dorothy tells her doctor she’s had months of exhaustion, fevers, muscle weakness, memory problems, and more. Her tests are normal, so he dismisses it as loneliness or depression.
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"I spoke to the GP about it [Long Covid] & he advised me to do this thing called Graded Exercise... when I looked it up loads of people who had ME/CFS or anything like this was saying this is the worst idea, you must not do this"
Skys technology correspondent @rowlsmanthorpe
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New Video: Post Exertional Malaise is the hallmark symptom of #MECFS and is also common in #LongCovid.
Video explains the abnormal response to exertion, triggers, symptoms and management.
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Full article from today's Times
"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."
archive.li/2023.08.09-064549…
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Highlights from today's BBC Breakfast Interview with @BinitaKane and Sarah Boothby (@swastrosarah) about Severe #MECFS and doctors who have had no training not understanding/listening when they see severly ill patients with #MECFS
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Highlights segment about #MECFS on BBC Breakfast. Dr William Weir and @BinitaKane talk about the history of #MECFS how it has been psychologised and the frustrating lack of progress. There are now millions of patients with Long Covid and we have no treatments.
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New video: What is ME/CFS?
A brief overview of symptoms, diagnosis and treatment based on the 2021 NICE guideline. Its not being tired all the time, patients have an energy impairment that dramatically limits their activity.
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“It wasn’t science it was misogyny”
George Monbiot, talking about #MECFS and the influential 1970 McEvedy/Beard paper on Double Down News in 2021.
They didn’t interview any patients and concluded an outbreak of ME was mass hysteria because the majority of patients were women.
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Clip from BBC Look North - Dr Alexis Gilbert (@alexis___me) who is almost entirely bed bound with #LongCovid and has been diagnosed with #MECFS feels "abandoned by the government... Its taken away all my dignity, all my joy its been devastating".
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Today marks...
10 yrs sick with #MECFS
9.5 yrs housebound
7 yrs bedbound
I was diagnosed after just 6 months but was told Graded Exercise would cure me. Following this advice dramatically worsened my condition and left me housebound.
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A nurse who worked with #MECFS patients commented on my Facebook post calling it a mental health issue. She dismissed the CDC, NICE & the IOM report because it didn’t match her and her colleagues’ views.
Outdated beliefs override evidence.
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George Monbiot described the treatment of #MECFS as "one of the greatest medical scandals" & "this is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism." #GreatestMEdicalScandal
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The #MECFS Community were the first people to say "there is a wave of disability coming [Long Covid] & these people will be told there is nothing we can do for you & their symptoms will be attributed to psychological causes.#LongCovid @oonagh_cousins from #ThereForMe campaign
Highlights from tonight's Sky News segment on #MECFS and #LongCovid @oonagh_cousins from the #ThereForME campaign talks about the obstructive influence of the theory that #MECFS is psychological. And how a generation of doctors have been trained on this outdated approach.
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Trigger Warning: This thread documents harmful portrayals of #MECFS on TV. I don’t enjoy sharing these, but it’s important to record how the condition has been misunderstood, trivialised and stigmatised.
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New Video: @GeorgeMonbiot describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". Watch the introduction to a new 27 minute explainer video about the scandal from reframing a recognised neurological illness to the withdrawal of harmful treatments.
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New Video: Very Severe #MECFS is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.
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Highlights of @ahandvanish speaking at todays @COVIDOversight hearing.
"Over half of #LongCovid patients will develop #MECFS, dysautonomia or both. ME/CFS is one of the worlds most disabling Illnesses..."
Link to the start of the 5 min speech.
piped.video/DL9AmIqL488?t=1729
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Highlights of Dr Asad Khan talking about #LongCovid on AlJazeera.
"It is not psychological, just in the same way ME and Fibromyalgia and POTS are not psychological. What we do know is that exercise and talking therapies are not going to fix this."
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#MECFS is often referred to as neglected, under-researched and poorly understood. However this doesn't even scratch the surface when it has been described as one of the biggest medical scandals of this century.
#MEAwarenessDay
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🧵Gulf War Syndrome & Simon Wessely
"For 30 years they have been disowned, ignored and lied to by consecutive governments, with no positive answers to their questions about exposure to toxic substances and gases & the affect it had on them"
bbc.com/news/health-61398886
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"You had your illness [ME/CFS] in the late 70s and 40 yrs later I've had something pretty much Identical [Long Covid] and in the intervening time span almost nothing has happened, we know almost nothing more about these diseases."
Skys technology correspondent @rowlsmanthorpe
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🧵ME/CFS is often referred to as neglected, under-researched and poorly understood in the media. This is obviously welcome but feels like a disservice when it has also been described as one of the biggest medical scandals of this century.
- Explainer -
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Darren is one of about 2 million people living with #LongCovid in England and Scotland, he is too ill too work and talks about losing his job, and the lack of investment into research for treatments to help people back to work,
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Thank you @krishgm @JaneDodgeC4
Doctors have been taught to gaslight patients with #ME for decades. This video from the 90s teaches GPs that patients are frustrating to work with because they are mistaken about the cause of the illness and can often engage in arguments.
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Highlights from today’s Independent Sage on #LongCovid. Mentions overlaps with #MECFS, PEM, importance of pacing, lack of education & lack of acceptance of the underlying biology.
Long COVID clinics are not enough and not enough research looking at the underlying pathology.
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Clip from The Golden Girls (1989): Dorothy confronts the doctor who dismissed her. She says he made her feel crazy, that a man might’ve been taken more seriously — and patients need to be listened to.
Michael Moran | APC Injury
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The recent media coverage about Maeve Boothby O'Neill is definitely having an impact. I saw a new GP today, the first doctor i've seen in a few years. He had read about Maeve and asked me how I felt I had been treated and if I thought I was believed.
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George Monbiot talking about ME/CFS on Owen Jones podcast, calling it "One of the greatest medical scandals of the last century" also mentions McEvedy and Beard, DWP, Insurance companies, Science Media Centre
piped.video/DRbigmBSX3Y?t=2090
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Clip: On Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
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"We worship exercise, and exercise is good for most people, but when you have a post viral illness, it is the worst thing you can do... If you make people exercise they only get worse." @doctorasadkhan on Talk TV discussing #LongCovid, also mentions #MECFS.
Was interviewed by @TrishaGoddard about #LongCovid
Listen from 1:26:00
#MECFS #Lyme #LongCovidKids #WeAreNotATarget #MedTwitter #TeamGP #POTS #CleanAir #Ventilation #Schools #COVIDisAirborne #CovidIsNotOver
piped.video/live/3HNXHJzpRKo…
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Thread 🧵
After an extensive 3 year review NICE were going to stop recommending Graded Exercise for ME/CFS, due to lack of evidence and possible harm. The day before it was due NICE decided to halt publication after medical bodies were refusing to endorse it.
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Full article about #MECFS in today's Times
"Only 28 per cent of NHS trusts and integrated care boards (ICBs), the bodies responsible for health and care services in a local area, have implemented the Nice guidelines published two years ago."
archive.is/2023.05.29-060835…
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Highlights - Tom Minton, a former BBC Look North director and his wife BBC reporter Cathy Minton talk about Tom's #LongCovid - Its like a mobile phone battery, the best charge he can hope for is 10 maybe 15%. He can do things but then the batteries flat and he needs to rest.
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Highlights from today’s debate on PIP: Tessa Munt MP says changes will disproportionately affect people with ME and long Covid. Diane Abbott MP references the NEF report, which links long Covid and other factors to rising disability and increased PIP claims.
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Highlights of @DrSarahJarvis on BBC Breakfast talking about Long Covid and it being "very like ME" also mentions the delay of the NICE Guidelines for ME/CFS.
Thank you for highlighting this.
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Full article: My child died of ME’: a scandal waiting for its Post Office moment
Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS
archive.ph/2024.07.19-150917…
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🆕 Full article in the Sunday Times
"I didn’t know that doctors wouldn’t believe you and think that it’s in your head,"
“I didn’t know that there was a lack of funding. Until you actually experience it, you don’t realise how alone you are with it all."
archive.ph/2025.02.23-010056…
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A fantastic segment on the #GreatestMedicalScandal
Full segment (44 mins edited)
LBC call in with Natasha Devon discussing #MECFS, Simon Wessely, George Monbiot's recent article, the history of ME and the impact of Graded Exercise and CBT.
piped.video/g8jYj7dIM7w?si=Lrue…
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Ten years after getting #MECFS, I sold my drums. I could play a bit when I was mild but it’s unlikely I’ll play again. In a nice twist though, I sold them to the same guy I bought them from 20 yrs ago — after he saw them on eBay.
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#LongCovid "is not a psychological illness this is not a psychosomatic illness... the immune system has become very dysregulated as a result of the virus and its leading to these highly debilitating symptoms..."
@PutrinoLab on PBS News Hour
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Long segment about #MECFS and #LongCovid on BBC Breakfast (15 mins) includes interviews with @BinitaKane Dr William Weir @KarenLHargrave @oonagh_cousins
Mentions symptoms, severity, history, Ramsay, NICE guidelines, problems accessing care and more
piped.video/AuqthHADSWw?si=OQTw…
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New: @GeorgeMonbiot talks about the "Massive journalistic failure" where the media prioritised a story a few scientists receiving a few rude emails over patients with #MECFS who have been "mistreated on a grotesque scale" and harmed by treatments promoted by these scientists.
Important thread from @GeorgeMonbiot on how harassment has been used in the press to discredit #MECFS patients and divert attention away from valid concerns about research. Examples of these articles can be seen in these images.
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#ThereForMe campaign gets national TV coverage.
Highlights from today's BBC Breakfast. Features previous segment of Dr Becky Williams and the letter signed by over 200 other healthcare workers calling on the government to provide better support. #MECFS #LongCovid
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Clip of @GeorgeMonbiot "gobsmacked" by the shocking and outrageous treatment of #MECFS patients, from outright medical neglect, to threats of being sectioned or put in psychiatric wards.
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Trudie Chalder (PACE trial) is training health professionals on Long Covid. Describes Post Exertional Malaise as "Health anxiety" and an "Extreme behavioural response" states "Exercise is clearly not damaging" and recommends "Increasing exercise"
#LongCovid #MECFS
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Highlights of @doctorasadkhan talking about his experience of #LongCovid on BBC News "it is a myth that Long Covid and other invisible illnesses such as ME are psychological just because certain tests are normal."
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Jonathan Ross gives an update on his daughter who has #MECFS, #Fibromyalgia and #POTS which she developed following COVID.
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Highlights Baroness Scott speaking at the Long Covid debate in the House of Lords 17 Nov 2022.
Mentions similarities with ME, How ME has been ignored, the use of dangerous treatments, and how some Long Covid researchers are not using what has already been learnt from ME.
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Clips from The Golden Girls (1989): Dorothy sees a neurologist after months of #MECFS symptoms. He tells her there’s nothing wrong, it’s just ageing — and suggests a psychiatrist. She begins to doubt herself—until Rose comforts her saying “Doctors don’t know everything.”
Clip from The Golden Girls (1989): Before being diagnosed with #MECFS, Dorothy tells her doctor she’s had months of exhaustion, fevers, muscle weakness, memory problems, and more. Her tests are normal, so he dismisses it as loneliness or depression.
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Sky News segment @oonagh_cousins from the #ThereForME campaign talks about the debilitating effects of #LongCovid, similarities with #MECFS, the debunked psychological approach, and lack of biomedical research.
piped.video/EkcqdVATKZU?si=QQ6T…
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Sophia Mirza was wrongfully sectioned in 2003 because doctors didn't understand #MECFS. This caused a deterioration which ultimately led to her death. 20yrs later and it happened to Millie. It has been lifted but Millie continues to be mistreated.
#BringMillieHome #DontLetMEDie
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Clip from BBC Midlands Today 18-year-old Tilly Galloway has battled #LongCovid since she was 12. It was Initially dismissed by medics. "They all just blamed it on anxiety and mental health and said I needed counselling."
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Highlights @ahandvanish talking about #LongCovid on CP24 News.
• causes significant number of cases of #MECFS
• post viral research has not been funded
• there are no treatments for #MECFS
• post viral illness not taught in med school
I spoke to @CP24 about our paper, the vascular nature of LC, overlaps with ME/CFS & dysautonomia, & the need for immediate funding, clinical trials, & doctor education.
I truly believe within a few years, every family will have a member with #LongCovid.
cp24.com/video?clipId=261372…
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Highlights from tonight's Sky News segment on #MECFS and #LongCovid @oonagh_cousins from the #ThereForME campaign talks about the obstructive influence of the theory that #MECFS is psychological. And how a generation of doctors have been trained on this outdated approach.
Sky News segment @oonagh_cousins from the #ThereForME campaign talks about the debilitating effects of #LongCovid, similarities with #MECFS, the debunked psychological approach, and lack of biomedical research.
piped.video/EkcqdVATKZU?si=QQ6T…
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Clip from today's BBC Morning Live segment on #LongCovid
Dr @xandvt talks about a new study that found #LongCovid has a greater impact on quality of life than some Cancers.
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Hi @ellapickover, @eblackburne, I have put together a quick thread in response to your recent article 'New hope for 'incurable' disease that leaves sufferers shattered'. There may be some things you are not aware of.
walesonline.co.uk/news/uk-ne…
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"Illness post viruses is not new its been around for decades we've got a condition called #MECFS... its been a very neglected area of research."
ITV Meridian Facebook discussion - @StaceyPooleITV interviewing @BinitaKane about #LongCovid in Children.
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The episode was written by Susan Harris, acclaimed comedy writer and creator of The Golden Girls. Diagnosed with chronic fatigue syndrome herself, she brought her experience to the show, making this one of the earliest TV portrayals of #MECFS.
More: me-pedia.org/wiki/Susan_Harr…
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If you say something bad about the PACE trial three times in a mirror an author pops up to defend it.
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Highlights Radio 5 Live phone in about #LongCovid Rachel a GP in Plymouth and Nicky a psychologist with a PhD in CBT who says "I can categorically say you cannot think your way out of #LongCovid" Paul Garners message is a minority view.
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🧵 of clips from #BBCBreakfast about #MECFS
@KarenLHargrave's biggest fear is that her husband who has #MECFS following #Covid will deteriorate and need to go to hospital.
"I can't think of many other diseases where the more severe your symptoms are the worse your care is"
Long segment about #MECFS and #LongCovid on BBC Breakfast (15 mins) includes interviews with @BinitaKane Dr William Weir @KarenLHargrave @oonagh_cousins
Mentions symptoms, severity, history, Ramsay, NICE guidelines, problems accessing care and more
piped.video/AuqthHADSWw?si=OQTw…
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Andrew @GwynneMP at yesterday's #MEdebate talking about how half of people with #LongCovid have symptoms that mirror #MECFS and his personal experience of #LongCovid. "I was in bed for all of today, and I have only come in to give this speech."
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Full segment (12 mins) Channel 4 News - Sean O'Neill (@TimesONeill) and Clare Norton discuss the death of their daughters from #MyalgicEncephalomyelitis and the negative culture and attitude from healthcare professionals that #MECFS doesn't exist.
piped.video/wQwr67H_X0E?si=7DIe…
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Highlights of a #DragonsDen episode where @dragonjones explains why he didn't invest in a back pain reliever because there was no clinical research to back up their medical claims.
Would be interested to know if/why this level of scrutiny wasn't applied to acuseeds?
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Highlights from today's BBC Points West segment on #LongCovid mentions overlaps with #MECFS, fatigue being a "misnomer", relapses aka symptom exacerbation from exertion, believing patients & how the government should have anticipated these post viral complications.
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Clip: BBC Scotland - Professor Chris Ponting explains why large-scale genetic research into #MECFS didn’t happen sooner — despite its prevalence. He says the field was “hugely stigmatized” and “held back… in part because this disease is very strongly female biased.
Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.
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New Trailer for the #MECFS Scandal Explainer Video.
It highlights the stigma, abuse, bad science, and harm in the treatment of #MECFS, which has been described by George Monbiot as the #GreatestMedicalScandal of the 21st century.
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The treatment of ME/CFS patients has been described as one of the biggest medical scandals of this century.
To understand why people are protesting today please read this thread including short explainer videos.
#ProtestNICE4ME
🧵⬇️
Thread 🧵
After an extensive 3 year review NICE were going to stop recommending Graded Exercise for ME/CFS, due to lack of evidence and possible harm. The day before it was due NICE decided to halt publication after medical bodies were refusing to endorse it.
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Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”
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Highlights from the #LongCovid debate in Parliament - Impact of #LongCovid on the workforce.
Mentions lessons from #MECFS, the importance of rest, setbacks from going back to work to early, don't exert yourself on a good day as you might be knocked out for a few days #PEM.
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Additional clip of Hannah responding to a question.
"Post viral illness happens after almost every virus from Mono to Ebola to West Nile... we should have expected this..."
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This GP training video from the 90s highlights Wesselys model.
It downplays the severity dismisses a viral cause & claims that symptoms are due to a fear of activity and excessive rest.
It says patients are frustrating because they are mistaken and can get into in arguments.
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Shocked and saddened to hear of the horrific death of David Ammes MP. He attended the debate on ME in Jan 2019 and spoke compassionately on behalf of his constituents. He seemed such a gentle and genuinely caring man. May he Rest in Peace.
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Excellent article
- Long Covid, ME/CFS, and the Need for Allyship
"Imagine a chronic illness [ME/CFS] so horrific that a mild case might mean not being able to work ever again. A moderate case could mean rarely being able to leave your home for years at a time,"
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Today is #SevereMEDay
Very severe patients “are similar to a critically ill patient 24 hours before they die, except they live like that for years and years,” - Professor Ron Davis of Stanford
Watch this video to learn more...
CW - New Video - Severe and Very Severe ME/CFS
Experts discuss PEM, pain, Orthostatic Intolerance, severity, relapses, poor access to services, lack of medical education, problems with nutrition and common psychological misdiagnosis like FII.
piped.video/CTxwlf7LSrA
#SevereME
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Doctors who share “misleading” information on social media could face regulatory action, according to planned new guidelines.
theguardian.com/uk-news/2022…
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Trish Greenhalgh, Eric Topol and Julia Vogel discuss the claims that #LongCovid is in the mind at todays Independent Sage.
Julia Vogel said "this is building on decades and decades of dismissing disorders that are similar to this like chronic fatigue syndrome."
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Letter from Prof. Jonathan Edwards (Expert Witness for the NICE ME/CFS Guideline) sent to Drs Flottorp, Brurberg, Knoop, Fink, Wyller and Garner about the "attempts to discredit NICE in the Comment on the ME/CFS Guideline in the Lancet and associated messages on social media".
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Sarah Boothby on the BBC Breakfast segment about the new delivery plan
"The way Maeve was treated while she was in hospital was she was constantly being referred to psychiatric services because the conception has been that ME is a mental illness. It isn't a mental illness."
BBC Breakfast segment on the UK government's new #MECFS Delivery Plan (12 mins)
Features Sarah Boothby and Dr Binita Kane, who warn the plan doesn't go far enough and won’t lead to immediate change for patients.
piped.video/GZbSrdtiA9k?si=FQDW…
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ITV Granada reports segment about Millie who has Severe #MECFS and has been in hospital for 10 weeks waiting for a feeding tube because she has problems ingesting food.
#BringMillieHome #DontLetMEDie @gmcuk @rcphysicians @rcpsych
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CW - New Video - Severe and Very Severe ME/CFS
Experts discuss PEM, pain, Orthostatic Intolerance, severity, relapses, poor access to services, lack of medical education, problems with nutrition and common psychological misdiagnosis like FII.
piped.video/CTxwlf7LSrA
#SevereME
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Important thread from @GeorgeMonbiot on how harassment has been used in the press to discredit #MECFS patients and divert attention away from valid concerns about research. Examples of these articles can be seen in these images.
1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works.
theguardian.com/commentisfre…
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🧵My top #MECFS & #LongCovid moments of 2021
February
Dr Strain appeared on BBC Horizon talking about the links between #LongCovid and #MECFS saying it was "A life changing physical illness that they've struggled to have accepted as a disease in its own right"
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Dr Amy Small (@amyismall) on BBC Radio Scotland responding to a text from an anonymous GP that was sceptical about #LongCovid. Mentions #MECFS, the PACE trial, how exercise makes the majority of patients worse and how many doctors have been taught wrong information.
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Clip of Dr @BinitaKane’s presentation to the joint APPG on ME & Long Covid: In 2025, A young woman is tube-fed, bed bound, and unable to sit up — yet she has no regular NHS support. How did we get here? Fundamentally, because ME was “wrongly psychologised”. #MECFS #LongCovid
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Clip: Sean O’Neill (@TimesONeill) on Talk Radio speaking about the lack of services for Severe #MECFS and the "deep culture of resistance in the medical profession to believing that #MECFS is a physical illness."
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My Severe and Very Severe #MECFS video has just gone over 100,000 views.
Thanks to everyone who continues to share, and to the YouTube algorithm which has started pushing it a lot more over the last month 🙏📈
piped.video/CTxwlf7LSrA?si=tnPr…
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William speaks about his daughter Alice, who has been bedridden in a dark room with Severe ME for 10 years. He questions the lack of curiosity around #MECFS and said: If people realised what these patients are actually going through maybe we would get some help #SevereMEDay
Edited version of BBC 5 Live’s Nicky Campbell phone-in (53 mins) on the DecodeME results. Professor Chris Ponting explains the findings, and callers share how stigma, misdiagnosis, and severe illness have shaped their lives with #MECFS.
piped.video/U9mc8lWvF-w?si=Y4bq…
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Margret Williams has written to Natasha Devon responding to Simon Wessely's claim that "he's never suggested that ME or Chronic Fatigue Syndrome are non diseases"
A fantastic segment on the #GreatestMedicalScandal
Full segment (44 mins edited)
LBC call in with Natasha Devon discussing #MECFS, Simon Wessely, George Monbiot's recent article, the history of ME and the impact of Graded Exercise and CBT.
piped.video/g8jYj7dIM7w?si=Lrue…
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Outstanding new article by @GeorgeMonbiot
"Despite an overwhelming weight of evidence, the old believers, including Sharpe and Wessely, have continued to try to justify their model, obliging Nice recently to publish a strong refutation."
It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
theguardian.com/commentisfre…
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Clip of Miriam Margoyles talking about her partner Heather's Chronic Fatigue Syndrome which she developed after a respiratory virus. "At one time in the 90s It got so bad she couldn't walk or stand and I had to feed her." #MECFS
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"Sky News analysis found that in the 20 yrs before the pandemic, there were just 2,007 new scientific publications on ME/CFS.
Over the same period... there were nearly 45,000 publications investigating the skin condition psoriasis and 114,000 on the topic of Parkinson's."
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My 27-minute #MECFS Medical Scandal Explainer video has just hit 100,000 views on YouTube.
Given that I've only got a small channel, I think this shows there is a strong interest in the scandal.
Thank you to everyone who shared it!
New Trailer for the #MECFS Scandal Explainer Video.
It highlights the stigma, abuse, bad science, and harm in the treatment of #MECFS, which has been described by George Monbiot as the #GreatestMedicalScandal of the 21st century.
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Highlights Dr Sarah Mason-Whitfield, an NHS doctor with #LongCovid, speaking at todays @APPGCoronaVirus meeting. Sarah talks about gaslighting, the Long Covid clinics not being fit for purpose and "dubious research" being done in the UK.
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