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Adam Profile picture
@ABrokenBattery
Sep 28 • 7 tweets • 3 min read • Read on X
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)

Associated news articles:
The Times: Coroner to report dangers of ME after Boothby O’Neill death
Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome

archive.ph/2024.09.27-174…
The Guardian: Not a single bed set aside to treat ME in any UK hospital, says NHS director - Father of Maeve Boothby O’Neill, who died in 2021, says it is ‘shameful’ that health system is unable to treat the disease

theguardian.com/society/2024/s…
BBC: Calls for action after death linked to ME - There are no current plans to address a nationwide deficiency in specialist hospital units and beds for patients with severe chronic fatigue syndrome, a senior doctor has told an inquest.

bbc.co.uk/news/articles/…
The Times: NHS bosses reject calls for specialist ME care National service is not on the agenda despite minister’s acknowledgement that patients are not receiving the care they need

archive.ph/2024.09.27-053…
Kent Online: There are no current plans to address a nationwide deficiency in the provision of specialist hospital units and beds for patients with severe chronic fatigue syndrome, a senior doctor told an inquest.

kentonline.co.uk/news/national/…

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More from @ABrokenBattery

Adam Profile picture
Aug 27
🧵 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
Dr Weir on severe #MECFS

"they are unable to even get out of bed, and voluntary activities such as speech, chewing, and eating are directly affected by what can be described as an internal battery, which, instead of being charged at 100%, is probably down to about 5 or 10%."
Read 4 tweets
Adam Profile picture
Aug 25
🧵 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 🔥🙏
I spent the first 20yrs in mental health units because of the biopsychosocial approach to #MECFS. I still have PTSD from that period. I have had water poured over me in bed in the last 10 years by a nurse. I shouldn't get PTSD every time I go to hospital. I shouldn't have water
Read 5 tweets
Adam Profile picture
Jul 19
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…
NHS treatment for ME patients to be examined

Maeve Boothby-O’Neill, 27, who died in October 2021, faced barriers to receiving proper care

telegraph.co.uk/news/2024/07/1…
Read 59 tweets
Adam Profile picture
Apr 18
🧵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’
@GeorgeMonbiot talks about Professor Simon Wessely being a founding member of the Science Media Centre, and how journalists parrot the biopsychosocial model of #MECFS and how the story became about harrasament of researchers instead of patients being badly served
Read 5 tweets
Adam Profile picture
Feb 20
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.
This approach to ME, Graded Exercise and CBT, was withdrawn by NICE in 2021 because the research was flawed and patients reported it was harmful. All of the research was graded 'low' or mostly 'very low' quality.
Read 5 tweets
Adam Profile picture
Jan 10
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/…

Image
I know @JonRonson is interested in ripple effects.

Simon Wessely pioneered the approach to #MECFS in 1988. His paper rejected the conventional view that patients have an ongoing disease, and argued that they are simply unfit due to being inactive.

me-pedia.org/wiki/Simon_Wes…
Image
Read 13 tweets

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