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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.
Crystal Profile picture Caroline Struthers Profile picture Bendy Nevis ♿🥀☮️🕊️ Profile picture 8Eevert ⌗ND 🇫🇮✨ Profile picture 5 subscribed
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New: Jon Ronson Things fell apart episode on Judy Mikovits, her paper on XMRV and #MECFS that was retracted and how she became involved in the conspiracy theory film Plandemic.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 These treatments were withdrawn by NICE in 2021 because they are ineffective & harmful.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.
Jun 7, 2022 • 42 tweets • 20 min read
Fiona Fox director of the Science Media Centre has a new book out called Beyond The Hype - The Inside Story of Media's Biggest Controversies.

The chapter on ME/CFS "First they came for the communists" is biased, inaccurate and offensive. #BeyondTheHype

🧵Thread Fox writes glowingly about a group of #MECFS researchers that are being harassed and discredited by a small group of 'activitists' and is concerned that science is under attack. The chapter title appears to liken these 'activists' to Nazis.
May 19, 2022 • 20 tweets • 6 min read
🧵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-61… "Even when I was still in the military, I was getting illness after illness... when I questioned whether it could be anything to do with my service in the Gulf or what we were exposed to, the military line was 'You're talking nonsense, there's no evidence.'"
May 12, 2022 • 15 tweets • 6 min read
🧵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 - This is particularly relevant to #LongCovid where there is growing evidence a subset looks identical to ME/CFS and many meet the diagnostic criteria. It is important to acknowledge the scandal and not repeat the same mistakes.
Apr 18, 2022 • 15 tweets • 3 min read
🧵 Summary of the Countess of Mar's questions in parliament in 2004 about Simon Wessely, his clique of psychiatrists and their "dominance in the thinking about ME/CFS".

Explains why we don't have any treatments for ME/CFS that would probably help a subset of #LongCovid aswell. The alt name CFS has led to confusion "that has served well the aims of a group of psychiatrists who assert that... ME/CFS is simply medically unexplained chronic fatigue & that it should be classified as a mental disorder over which they should exert control."
Feb 22, 2022 • 4 tweets • 2 min read
CW: Highlights of the 1999 BBC Panorama episode about ME/CFS

Dr Michael Prendergast talks about his approach of distracting children from their illness.

In a talk at a Scottish Hospital he talked about taking legal action if parents resisted psychiatric treatment. CW: Dr Prendergast went to court with social services to enforce treatment of a 16 yr old boy. He had previously recommended rehabilitation to the boy a few years earlier and made him worse.

Parental rights were removed and the boy was taken to a psychiatric ward by police.
Feb 12, 2022 • 12 tweets • 4 min read
A few thoughts on the comment in the Lancet about the NICE guideline.

"subjective symptoms are the most valid endpoints"

If blinding is not possible the outcome measures must be objective to reduce expectation bias. Objective measures show no improvement eg. in the PACE trial. "NICE guideline committee presented
a new non-validated diagnostic definition"

It was based on the 2015 IOM criteria which has PEM as mandatory and is used by the CDC.

More info here.

Feb 10, 2022 • 4 tweets • 2 min read
"If Sophia doesn't get better in 6 months... or if she doesn't go to the ME clinic he said i'm going to section her... and if you try and stop me I will have you removed as the nearest relative... if you do not open the door... I will get the Police to smash the door down" Sophia Mirza was sectioned in 2003 and Police forced entry into her home, she was eventually released but had severely deteriorated and later died. Sophia was the first person to have ME recorded as the cause of death in the UK.

me-pedia.org/wiki/Sophia_Mi…