Discover and read the best of Twitter Threads about #PublishThatGuideline
Most recents (8)
1/n
“Seven years ago, when I started talking to people with ME/CFS, I was puzzled and cautious about claims made around trials and treatments. After having talked with many hundreds of patients and their carers ...
“Seven years ago, when I started talking to people with ME/CFS, I was puzzled and cautious about claims made around trials and treatments. After having talked with many hundreds of patients and their carers ...
2/n "...(I have no close contacts with ME/CFS and no 'competing' interest in the disease), listened to dozens of academic colleagues describing their work and views and read hundreds of papers, I have come to a clear conclusion."
3/n "The patients' claims are entirely plausible, factually accurate and intelligently expressed, including in several excellent peer-reviewed articles. My colleagues’ claims are mostly hot air, in some cases clouded by deliberate obfuscation."
I have today sent @NICEComms a letter before claim under the judicial review pre-action protocol regarding its decision of 17th August 2021 to pause publication of its updated guidelines on the diagnosis and management of mE/CFS #publishthatguideline
The letter before claims seeks agreement by NICE to revert to follow its procedures as set out in its manual no later than noon on Wednesday 6th October 2021, in default of which we intend to issue proceedings asking the High Court to intervene.
Any roundtable must be held after publication of the guidelines #publishthatguideline
telegraph.co.uk/health-fitness…
Just the title of this article says it all really
Making it all about Dr Fitzpatrick and detracting from the real issue whilst affecting opinion with sensational wording
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Just the title of this article says it all really
Making it all about Dr Fitzpatrick and detracting from the real issue whilst affecting opinion with sensational wording
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
>“250,000 people in Britain are estimated to have chronic fatigue”
That is for the SYNDROME (has hallmark symptom of PEM)
The SYMPTOM chronic fatigue (accompanying many illnesses) is different
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
That is for the SYNDROME (has hallmark symptom of PEM)
The SYMPTOM chronic fatigue (accompanying many illnesses) is different
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“chronic fatigue, characterised by extreme tiredness and generally feeling unwell”
Gross understatement for cfSYNDROME
This chronic, fluctuating neurological condition affects many body systems
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Gross understatement for cfSYNDROME
This chronic, fluctuating neurological condition affects many body systems
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
The Lion & The Donkey (fable) is a good lesson in general though it does not translate to issues where donkeys are in power, in which case it’s dangerous to ignore them 1
fizikamind.in/blog/dont-argu…
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
fizikamind.in/blog/dont-argu…
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
In the NICE debacle:
Lion = NICE
Donkey = opposition to new guidelines (small but powerful groups)
Tiger = supporters of new guidelines
Grass = GET: Green = harmful, blue = helpful
2
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Lion = NICE
Donkey = opposition to new guidelines (small but powerful groups)
Tiger = supporters of new guidelines
Grass = GET: Green = harmful, blue = helpful
2
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
In the NICE debacle donkeys have had influence over the media and therefore the public for years:
mrtopple.com/2019/03/18/the…
3
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
mrtopple.com/2019/03/18/the…
3
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“Health and well-being are a top priority for us”
Will you keep this promise to your staff when you’re failing patients?
2007 guidelines STILL recommend GET
New guidelines inexplicably paused
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Will you keep this promise to your staff when you’re failing patients?
2007 guidelines STILL recommend GET
New guidelines inexplicably paused
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“we understand the importance of creating a respectful, supportive, and transparent environment for all our employees.”
It’s curious you don’t understand the same for the ME/CFS community.
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
It’s curious you don’t understand the same for the ME/CFS community.
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
“Health and well-being are a top priority for us because we understand the importance of creating a respectful, supportive, and transparent environment.”
H is left out of your acronym 😑
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
H is left out of your acronym 😑
#InstitutionalisedDiscrimination #MECFS #PublishThatGuideline @NICEComms @MHRAgovuk
Medicine, like all of science, is political:
- which questions get asked
- which projects get funded
- how debates get framed
- who the researchers are
- context of data (what categories, what labels, which biases, what is left out)
- whose suffering is counted 1/
- which questions get asked
- which projects get funded
- how debates get framed
- who the researchers are
- context of data (what categories, what labels, which biases, what is left out)
- whose suffering is counted 1/
Science does not just progress inevitably, independent of funding and politics and framing and biases. 2/
Activists of ACT UP pushed USA govt & medical establishment to stop ignoring HIV/AIDS in the late 80s/early 90s, and to invest more in researching & addressing it. The huge progress that has happened in HIV/AIDS research & treatment would not have happened otherwise. 3/
It’s mind-boggling that someone like Per Fink has control over #ME and #LongCovid treatment in Denmark.
He denies bio research, refers to debunked PACE trial and has seriously harmed patients (Karina case). The man should not have any influence at all. 1/4
He denies bio research, refers to debunked PACE trial and has seriously harmed patients (Karina case). The man should not have any influence at all. 1/4
His horror clinic is literally called: “Research Clinic for Functional Disorders and Psychosomatics“. Their outdated view on M.E. is right there in the name.
Of course he sent complaints to NICE. He based his entire clinic on something NICE has found to be nonscientific. 2/4
Of course he sent complaints to NICE. He based his entire clinic on something NICE has found to be nonscientific. 2/4
M.E. is a confirmed physical illness. Everyone can look that up easily. In 2019 it was finally decided politically in Denmark too. It was decided that Per Fink should have nothing to do with M.E.
Still, nobody cares about that and they just continue their pseudo work. 3/4
Still, nobody cares about that and they just continue their pseudo work. 3/4
The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5
meaction.net/2021/08/19/sig…
meaction.net/2021/08/19/sig…
Due to the psychologisation of #MECFS after the scientifically flawed #PACEtrial, part funded by the #DWP btw. Not only has this caused medical abuse in patients with #ME (#MAIMES) its having a huge impact on the treatment & further investment of many other patient groups 2/5
From people living with #ChronicPain & #MUS to #Fibromyalgia & #LongCovid. There are literally #MillionsMissing globally & thousands of #Disabled #pwME & #SevereME in the UK who are desperate for their voices to be heard, represented, just taken seriously in many cases 3/5
