A reply from Dr Mark VanNess
http://sallyjustme.blogspot.co.uk/2015/01/dr-vanness-on-recent-press-reports.html
http://sallyjustme.blogspot.co.uk/2015/01/dr-vanness-on-recent-press-reports.html
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Daily Mail:Chronic fatigue victims 'suffer fear of exercise':
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Countrygirl
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Although I missed it, apparently the BBC have told all and sundry that we just need to exercise. IiME have raised their objections to the coverage in this letter. http://www.investinme.org/IIME-Newslet-1501-02.htm
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Check out this online article today! Whooohoooo 
THANK YOU THANK YOU Prof VanNess
and THANK YOU THANK YOU Penny Swift!
http://theargusreport.com/us-neuros...ious-stimulus-that-worsens-symptoms-of-mecfs/
THANK YOU THANK YOU Prof VanNess
and THANK YOU THANK YOU Penny Swift!
http://theargusreport.com/us-neuros...ious-stimulus-that-worsens-symptoms-of-mecfs/
Check out this online article today! Whooohoooo
THANK YOU THANK YOU Prof VanNess
and THANK YOU THANK YOU Penny Swift!
http://theargusreport.com/us-neuros...ious-stimulus-that-worsens-symptoms-of-mecfs/
It turns out that Penny Swift has been rather busy on our behalf recently. In addition to the above
US Neuroscientist Says Exercise is a Noxious Stimulus That Worsens Symptoms of ME/CFS
there are the following related articles:
ME/CFS Research UK Slams Lancet Psychiatry Report Advocating Exercise for Chronic Fatigue Syndrome Sufferers
US NIH Report Calls for UK Definition of ME/CFS to be Scrapped
She definitely has a flair for the catchy headline, doesn't she? Just what's needed in the UK to counter the nonsense being printed elsewhere.
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Trudie Chalder Video Interview on CBT and GET
Short interview with Trudie Chalder, not clear where from, fairly recent. In which she claims that “the patient organisations” have an open mind about treatments (CBT/GET) and work with her and her team. Well we know that for the duration of the PACE Trial (2004-2011) Action for ME (AFME) went against the wishes and advice of the majority of patients, and collaborated with Trudie Chalder and White and Sharpe on the PACE Trial. At the start of the PACE Trial AFME soft soaped its members and told them that PACE was a trial on pacing.
AFME’s recent written protestations about the PACE publicity ring very hollow. AFME sold us down the river.
Ten years after the start of PACE the CBT/GET scam is even more entrenched in our health systems, and even more widely and intensively publicised.
http://www.yourepeat.com/watch/?v=_PuGKWIXWdQ
Interviewer: “How important is the opinion of Patient Groups and how confident are you that you can bring them on board with this?”
Trudie Chalder: “I think we have been working very closely with the Patient Organisations over a number of years both in terms of this trial and in our clinic…… People in the Patient Organisations have an open mind and that they are willing to work with us …. they have been involved in terms of the treatments in this trial…..”
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Trudie Chalder Video Interview on CBT and GET
Short interview with Trudie Chalder, not clear where from, fairly recent. In which she claims that “the patient organisations” have an open mind about treatments (CBT/GET) and work with her and her team. Well we know that for the duration of the PACE Trial (2004-2011) Action for ME (AFME) went against the wishes and advice of the majority of patients, and collaborated with Trudie Chalder and White and Sharpe on the PACE Trial. At the start of the PACE Trial AFME soft soaped its members and told them that PACE was a trial on pacing.
AFME’s recent written protestations about the PACE publicity ring very hollow. AFME sold us down the river.
Ten years after the start of PACE the CBT/GET scam is even more entrenched in our health systems, and even more widely and intensively publicised.
http://www.yourepeat.com/watch/?v=_PuGKWIXWdQ
Interviewer: “How important is the opinion of Patient Groups and how confident are you that you can bring them on board with this?”
Trudie Chalder: “I think we have been working very closely with the Patient Organisations over a number of years both in terms of this trial and in our clinic…… People in the Patient Organisations have an open mind and that they are willing to work with us …. they have been involved in terms of the treatments in this trial…..”
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Very telling that "I think"
MeSci
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It seems to be a very common but meaningless phrase which has become ubiquitous amongst a lot of other popular waffle.
Countrygirl
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Dr Willy Weir has waded into the debate with this letter, which he has sent to the Irish group. ( I recall 30 years ago that a friend and I invited him to speak to our newly-formed group in Bristol. He drove me to the meeting and I remember him telling me that it took half-a-century for the medical profession to absorb a new idea. He was wrong: it takes at least a century, given our experience.)
Rational understanding of the symptoms of ME/CFS.
The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted. Most recently “exercise phobia” has been proposed as part of the problem although a study of which I was a co-author in 2005 explicitly disproved this proposition. This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
WRCW
Rational understanding of the symptoms of ME/CFS.
The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted. Most recently “exercise phobia” has been proposed as part of the problem although a study of which I was a co-author in 2005 explicitly disproved this proposition. This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition. As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
WRCW
That's a great letter, do you have a link to where it was published ?
Countrygirl
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Hello eafw
It has only just been received and posted on a closed group, and is hot off the press, so I can't give you a link at present. Actually, I guess THIS is the link and probably the first place it has been posted.Hello eafw
If he has submitted it as a letter to a journal then they may not publish if it is already public so you may want to check that there is permission to publish on an open forum and if not remove it.
Countrygirl
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No, it is not for a journal and is being circulated along with Dr. VanNess's letter. It is also, I see, on another of the threads here. It is right to be cautious, however, so thank you for flagging it up.
The letter was sent to Joan McParland of Newry and Mourne ME Fibromyalgia Support Group and is very hot off the press indeed!
It was sent with permission to share. It is also posted here for easier sharing outside of FB etc.
http://sallyjustme.blogspot.co.uk/2015/01/dr-william-weir.html
It was sent with permission to share. It is also posted here for easier sharing outside of FB etc.
http://sallyjustme.blogspot.co.uk/2015/01/dr-william-weir.html
Countrygirl
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https://mobile.twitter.com/maxwhd/status/556448464931139584#tweet_556448464931139584
The authors of the awesome PACE paper apologise for their error..................
The authors of the awesome PACE paper apologise for their error..................
Bob
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A better article in the Daily Mail today, with good quotes from the MEA and others...
Tony Britton, of the ME Association, told MailOnline: "Patients on the receiving end of this nonsense are pig sick and tired of it all."
'I'd rather have CANCER than chronic fatigue syndrome': Woman who's battled condition for 10 years says people with it are unfairly labelled 'attention seekers'
22 January 2015
http://www.dailymail.co.uk/health/a...ople-unfairly-labelled-attention-seekers.html
Tony Britton, of the ME Association, told MailOnline: "Patients on the receiving end of this nonsense are pig sick and tired of it all."
'I'd rather have CANCER than chronic fatigue syndrome': Woman who's battled condition for 10 years says people with it are unfairly labelled 'attention seekers'
22 January 2015
http://www.dailymail.co.uk/health/a...ople-unfairly-labelled-attention-seekers.html