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Adam Profile picture
Adam
@ABrokenBattery
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
9 subscribers
Nov 21 • 5 tweets • 2 min read
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. Watch the full video (27 mins) about #MECFS & the #GreatestMedicalScandal exploring the impact on patients and how bad science was defended by the scientific & media establishment. Includes clips of experts, MPs, patients & news items.

Oct 8 • 14 tweets • 5 min read
🧵of news articles, radio and TV about the landmark prevention of future deaths report following the death of Maeve Boothby O'Neill from Severe #ME Clip from the BBC World Tonight. @BBCJamieCoo talks about the finding from the prevention of future deaths report "The Health Secretary @wesstreeting needs to "urgently address" the "non-existent” care for people with #MECFS & @KarenLHargrave describes her husbands Severe ME
Sep 28 • 7 tweets • 3 min read
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 TW: Full segment - BBC Breakfast about Severe #MECFS and the death of Maeve Boothby-O'Neill.

Mentions, history, lack of understanding, training and research, no provision and calls for urgent action. @BinitaKane and Sarah Boothby (@swastrosarah)

Aug 27 • 4 tweets • 2 min read
🧵 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"
"I feel very strongly that if we had done more to understand what is happening in people with ME, we would be in a much better place to deal with all these people who have Long COVID... By one estimate 50% of people with Long COVID have ME"

@oonagh_cousins former Olympic Rower
Aug 25 • 5 tweets • 2 min read
🧵 of clips from the LBC segment about #MECFS and Simon Wessely yesterday

Natasha Devon reading out @GeorgeMonbiot article about #MECFS and the #GreatestMedicalScandal mentiond Wessely, PACE, & the Science Media Centre that portrayed patients as abusive.
Wessely's biopsychosocial model makes ME patients unreliable witnesses to their own bodies. The model says patients are catastrophising and misunderstand the symptoms of recovery and think this an ongoing illness instead of normal aches and pains of recovery - @JohnTheJack 🔥🙏
Jul 19 • 59 tweets • 19 min read
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/2024.07.19-150… Full article: Sajid Javid: Labour must deliver on ME as patients suffer without a cure

The former health secretary’s call to action coincides with a landmark inquiry into the death of Maeve Boothby-O’Neill...

archive.ph/2024.07.19-150…
Apr 18 • 5 tweets • 2 min read
🧵of clips @GeorgeMonbiot talking to @davidtuller1 about his recent article where he describes the psychologisation and treatment of #MECFS as "the greatest medical scandal of the 21st century." @GeorgeMonbiot talks about the poor quality of life people with #MECFS experience and how the psychological approach led to attitudes such as a nurse in one medical paper saying ‘the bastards just don't want to get better’
Feb 20 • 5 tweets • 3 min read
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.
It downplays the severity, dismisses the possibility of it being caused by a virus, and essentially describes it as psychological. Patients may have had a virus but it's gone, cleared the body, and the illness is basically perpetuated by a fear of activity and resting too much.
Jan 10 • 13 tweets • 6 min read
New: Jon Ronson Things fell apart episode on Judy Mikovits, her paper on XMRV and #MECFS that was retracted and how she became involved in the conspiracy theory film Plandemic.

bbc.co.uk/sounds/play/m0… Hopefully @JonRonson will take an interest in #MECFS and what George Monbiot and Carol Monaghan MP described as one of the biggest medical scandals.

George Monbiots article


Georges accompanying thread with more info
theguardian.com/commentisfree/…

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Sep 29, 2023 • 8 tweets • 5 min read
QT -The Guardian calling out The Science Media Centre

🧵The SMC also has a long record of promoting & defending Graded Exercise & CBT for #MECFS. These treatments were withdrawn by NICE in 2021 because they are ineffective & harmful. All the evidence was low or very low quality. George Monbiot has written about #MECFS & how the "establishment closed ranks around bad science, defending it from legitimate questioning and criticism."

He mentions the involvement of the SMC in this clip.

And more in his thread


Sep 26, 2023 • 11 tweets • 5 min read
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-news/d… Its not new it was proposed for ME in 1989 (Chalder from the recent paper was an author) It has been the dominant approach for the last few decades, until Graded Exercise and CBT were withdrawn by NICE in 2021 because they are not effective and harmful.

researchgate.net/publication/20…

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Aug 14, 2023 • 11 tweets • 4 min read
Thankyou @OllyMann, @holdenfrith, @leafarbuthnot and @harriet1marsden for covering #MECFS and the new Government Plan. I just want to highlight a few things you may not be aware of. Post Exertional Malaise (PEM), is the hallmark symptom of ME which means patients deteriorate following even minor activity. Exercise makes patients worse by definition. Pulitzer prize winner Ed Yong gives a good description of PEM.

archive.li/2023.07.27-111…
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Aug 10, 2023 • 12 tweets • 3 min read
It's a good question @StigAbell

Over the last 20 years ME research and treatment has been dominated by an influential group of researchers. They redefined ME as a disease characterised by fatigue and proposed ME was due to unhelpful illness beliefs and deconditioning In other words patients didn't have an underlying disease they were just frightened to exercise and resting too much. But, the hallmark symptom of ME is a deterioration following physical or cognitive exertion that can last for weeks/months or even be permanent.
Aug 9, 2023 • 9 tweets • 2 min read
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/2023.08.09-064… "Doctors and medical students will be offered greater training as part of a national strategy vowing to “improve attitudes” to ME and “trust and listen to those with personal experience”."
Aug 7, 2023 • 6 tweets • 2 min read
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. Some people with Very Severe #MECFS may not be able to ingest food and need to be tube fed. This case study highlights 5 patients with where the delay of tube feeding led to life threatening malnutrition.

mdpi.com/2227-9032/9/4/…
Jun 20, 2023 • 7 tweets • 3 min read
TW Clip from new Netflix documentary Take Care of Maya about a child with Complex Regional Pain Syndrome (CRPS) and her family who were accused of fabricating her illness because doctors didn't believe her. This is also common for Children with #MECFS. 1 in 5 parents of children face child protection proceedings because professionals don't understand or believe in the condition. Action for ME Survey 2017

actionforme.org.uk/uploads/pdfs/f…
May 12, 2023 • 11 tweets • 4 min read
#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 Image For the last thirty years, an influential group of psychiatrists and researchers have dominated the understanding and treatment of ME.
May 11, 2023 • 6 tweets • 2 min read
Daily Mirror's investigation into #LongCovid hits the front page but fails to mention links to #MECFS.

Links are well established now as highlighted by the following quotes from this comprehensive review of Long Covid in Nature.

nature.com/articles/s4157… "There is clear increased risk of developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Dysautonomia."

"Symptoms can last for years, and particularly in cases of new-onset ME/CFS and dysautonomia are expected to be lifelong."
Mar 22, 2023 • 4 tweets • 2 min read
"I think it may well be a form of depression" Dr Stuttaford talking about ME on the Rantzen Report - M.E. The Secret Epidemic in 1996 - He was booed by the audience and complained about it in an article in the Evening Standard - "I was like Daniel walking into the lions den" twitter.com/i/web/status/1… The episode recieved a lot of criticism, another article in the Sunday Telegraph stated that The Evening Standard's vision critic sent a copy of the ME episode to the Broadcasting Complaints commission.
Nov 16, 2022 • 6 tweets • 3 min read
"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 "The list of symptoms was all too familiar. Forty years apart, Dr Shepherd [Who has ME/CFS] and I had been struck down by almost identical diseases, and - what was worse - been met with very similar responses. Dr Shepherd was a medical mystery. So was I."
Jul 26, 2022 • 13 tweets • 3 min read
Summary of conversation between @adambeyoncelowe and @davidtuller1 about the new NICE guideline and the new government initiative organised by former Health Secretary Sajid Javid and carried out by the Department of Health and Social Care. There are 3 ministerial groups: Research, Attitudes and Education and Living with ME. Full details haven't been published yet but It will include implementation of the new NICE guideline and making sure they are adhered to across the NHS.