Dear Friends,
The institutional discrimination against people with ME, that arises from the psychosocial model, continues unabated despite the mounting scientific evidence showing that this is approach to the illness is scientifically inaccurate. As a community we need to turn up the pressure upon the political class who are supposed to represent our interests. Please watch the short film below which is by ME researcher/GP Dr.Sarah Myhill on the campaign she is leading against this institutional discrimination against people with ME in the UK.
Here is the description of the film taken from youtube:
''Published on 22 Aug 2017
In this moving and eloquent short film, Dr Sarah Myhill, a world-leader in the field of treating patients with ME/CFS, describes why she has started MAIMES, a pressure group that intends to ensure a public inquiry into the British medical system’s treatment of patients with ME/CFS.
She describes the distressing and hostile environment in which doctors must practice if they want to treat people with ME, using anything other than the deeply-flawed NICE recommendations. NICE, one of the advisory bodies that oversees treatment guidelines for clinical practice in the UK, is basing its recommendations on the flawed and fraudulent data of the now notorious PACE trial carried out in 2011.
This trial involved 641 patients and cost an estimated five million pounds (please note this is a correction from the eight million stated in the clip).
PACE became part of the orthodoxy in treating people with ME around the world and was widely reported in the media. Its conclusions that Graded Exercise Therapy and Cognitive Behavioural Therapy were the treatments of choice for this patient group reflected the biases of its designers - that people with ME were not ill, but had a ‘fear of exercise’ and ‘faulty belief systems’.
Scientists and patients fought for many years to get the raw data for the study released, and when it was, it was savaged by the scientific community. Rebecca Goldin, Director of stats.org and Professor of Mathematical Science at George Mason University, methodically unpicked the study.
Professor Goldin found PACE was flawed in design, in execution and in interpretation. There were no blind controls. It wasn’t randomised. The participants were cherry picked as likely to succeed, and the criteria for success was changed dramatically during the course of the trial. In the end, if a participant regained the functioning of a seventy-five year old, that was deemed a success. Given the average age of participants was thirty-nine, this is hardly encouraging. But this dishonest piece of manipulated data continues to determine the treatment of millions of people with ME around the world. In the UK, it may also be a factor in whether very ill and vulnerable people receive sickness benefits and support.
But the British medical establishment isn’t ready to back down. Doctors such as Dr Myhill are demonised and driven out of practice. She has been investigated by the General Medical Council thirty times - and thirty times she’s won. Other doctors haven't been so lucky, and have been struck off, had their practice restricted, or even driven to an early death by the constant harassment. Dr Myhill also asks why there is this overwhelming attachment to the idea of ME/CFS as a psychiatric illness? Could it be that to face up to the occupational hazards of groups as diverse as soldiers (Gulf War Syndrome), fireman (9/11 syndrome) and farmers (sheep dippers’ ‘flu’), all of whom have been exposed to highly toxic chemicals, means we have to rethink how and why people become sick with these syndromes?
So MAIMES is for both doctors and patients. People with ME/CFS deserve proper medical help. Doctors treating them deserve accurate information and treatment guidelines. Please, Dr Myhill urges, join the campaign, get your MP on board, and ensure there is a public inquiry into this scandal.
For more on MAIMES, including information on what you can do to help, please see
http://www.drmyhill.co.uk/wiki/Medica...)''
The institutional discrimination against people with ME, that arises from the psychosocial model, continues unabated despite the mounting scientific evidence showing that this is approach to the illness is scientifically inaccurate. As a community we need to turn up the pressure upon the political class who are supposed to represent our interests. Please watch the short film below which is by ME researcher/GP Dr.Sarah Myhill on the campaign she is leading against this institutional discrimination against people with ME in the UK.
Here is the description of the film taken from youtube:
''Published on 22 Aug 2017
In this moving and eloquent short film, Dr Sarah Myhill, a world-leader in the field of treating patients with ME/CFS, describes why she has started MAIMES, a pressure group that intends to ensure a public inquiry into the British medical system’s treatment of patients with ME/CFS.
She describes the distressing and hostile environment in which doctors must practice if they want to treat people with ME, using anything other than the deeply-flawed NICE recommendations. NICE, one of the advisory bodies that oversees treatment guidelines for clinical practice in the UK, is basing its recommendations on the flawed and fraudulent data of the now notorious PACE trial carried out in 2011.
This trial involved 641 patients and cost an estimated five million pounds (please note this is a correction from the eight million stated in the clip).
PACE became part of the orthodoxy in treating people with ME around the world and was widely reported in the media. Its conclusions that Graded Exercise Therapy and Cognitive Behavioural Therapy were the treatments of choice for this patient group reflected the biases of its designers - that people with ME were not ill, but had a ‘fear of exercise’ and ‘faulty belief systems’.
Scientists and patients fought for many years to get the raw data for the study released, and when it was, it was savaged by the scientific community. Rebecca Goldin, Director of stats.org and Professor of Mathematical Science at George Mason University, methodically unpicked the study.
Professor Goldin found PACE was flawed in design, in execution and in interpretation. There were no blind controls. It wasn’t randomised. The participants were cherry picked as likely to succeed, and the criteria for success was changed dramatically during the course of the trial. In the end, if a participant regained the functioning of a seventy-five year old, that was deemed a success. Given the average age of participants was thirty-nine, this is hardly encouraging. But this dishonest piece of manipulated data continues to determine the treatment of millions of people with ME around the world. In the UK, it may also be a factor in whether very ill and vulnerable people receive sickness benefits and support.
But the British medical establishment isn’t ready to back down. Doctors such as Dr Myhill are demonised and driven out of practice. She has been investigated by the General Medical Council thirty times - and thirty times she’s won. Other doctors haven't been so lucky, and have been struck off, had their practice restricted, or even driven to an early death by the constant harassment. Dr Myhill also asks why there is this overwhelming attachment to the idea of ME/CFS as a psychiatric illness? Could it be that to face up to the occupational hazards of groups as diverse as soldiers (Gulf War Syndrome), fireman (9/11 syndrome) and farmers (sheep dippers’ ‘flu’), all of whom have been exposed to highly toxic chemicals, means we have to rethink how and why people become sick with these syndromes?
So MAIMES is for both doctors and patients. People with ME/CFS deserve proper medical help. Doctors treating them deserve accurate information and treatment guidelines. Please, Dr Myhill urges, join the campaign, get your MP on board, and ensure there is a public inquiry into this scandal.
For more on MAIMES, including information on what you can do to help, please see
http://www.drmyhill.co.uk/wiki/Medica...)''
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
