Share this page!

Enter URL or ID to Unroll

You can paste full URL like: https://x.com/threadreaderapp/status/1644127596119195649
or just the ID like: 1644127596119195649

How to get URL link on X (Twitter) App

  1. On the Twitter thread, click on or icon on the bottom
  2. Click again on or Share Via icon
  3. Click on Copy Link to Tweet
  4. Paste it above and click "Unroll Thread"!
  5. More info at Twitter Help
Adam Profile picture
@ABrokenBattery
Sep 29 • 8 tweets • 5 min read Twitter logo Read on Twitter
Scrolly
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 These treatments were withdrawn by NICE in 2021 because they are ineffective & harmful.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


The treatments and approach were pioneered by Simon Wessely who was also a founding member of the SMC, sat on the board and has been their scientific advisor.



me-pedia.org/wiki/Wessely_s…
simonwessely.com/Downloads/Othe…
Image
PACE was the largest study of treatments for #MECFS. A re-analysis paper that found Graded Exercise & CBT are not effective.

The paper used the pace authors original outcomes (changed mid trial) and data released by FOI.

Article by George Monbiot

theguardian.com/commentisfree/…


Image
Image
Image
The SMC released a fact sheet to journalists to try and discredit the paper before it was published. It described PACE as a "good quality trial", and said papers critical of PACE are published in low impact journals.



web.archive.org/web/2018032205…
meassociation.org.uk/2018/04/forwar…
Image
The Journal of Health Psychology dedicated an entire issue to understand the problems with PACE. Experts overwhelmingly agreed it was flawed, and the results were unreliable.

The SMC published a number of 'expert reactions', all defending the trial.

sciencemediacentre.org/expert-reactio…
Image
I previously put together a thread about the problems with Fiona Foxes chapter on #MECFS from her book about the SMC.

Further reading




margaretwilliams.me/2013/role-of-s…
healthcarehubris.com/post/media-sil…
usrtk.org/industry-pr/sc…

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Adam

Adam Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @ABrokenBattery

Adam Profile picture
Sep 26
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…

Image
Image
The 3 year comprehensive review by NICE found all the evidence for Graded Exercise Therapy (GET) and CBT was of "Low" and mostly "Very Low" quality. This blog by Prof Brian Hughes provides more detail.

thesciencebit.net/2021/08/15/the…
Read 11 tweets
Adam Profile picture
Aug 10
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.
So exercise can actually be harmful. Many who could previously walk ended up in wheelchairs or bedbound.

In 2021, NICE reviewed the evidence and withdrew CBT and GET because there was no evidence they were effective and there were high reports of harm.
Read 12 tweets
Adam Profile picture
Aug 9
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”."
"The interim plan, led by the Department of Health, is the first government strategy aimed at improving the lives of people with ME and is open to consultation for eight weeks. It acknowledges that ME patients struggle to access care, treatment or to get a diagnosis."
Read 9 tweets
Adam Profile picture
Aug 7
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/…
There have been two recent high profile cases of patients being refused nutritional support in the UK.

archive.li/2023.02.28-221…
Read 6 tweets
Adam Profile picture
Jun 20
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…
BBC 5 Live Investigates did a programme about parents being accused of fabricating their childs illness that includes Mary Jane Willows from Action for ME who talks about the families she hears from.

https://t.co/volOHrFzdMbbc.co.uk/programmes/m00…
Read 7 tweets
Adam Profile picture
May 12
#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.
They redefined it as an ambiguous condition characterised by unexplained fatigue and argued that it was not a disease but rather due to patients being inactive, mistakenly believing they are seriously ill.
Read 11 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

Send Email!

:(