Questioning PACE

[Effort]

Are the answers any closer than they were in 2011 as pressure increases from the academic community joining patient advocates voices in questioning the science of FINE and it's sister trial PACE.

virology.ws/2016/01/04/tria...

[illiad2]

Dismissing patients/advocates as a vocal minority unable to rationalize their hypochondria as "the worried well" has served the psychiatric model for almost thirty years.

The pressure against seriously compromised research grows when the politicians trick of changing subject is denied when previously discussing errors within the trial a defence of abused patients was often an outcome for advocates raising questions.

The Dutch have followed their British counterparts in proposing psychosocial theories relieving medical practitioners of a duty of care owed, a double blow when removing wheelchairs and walking aids from patients as these items "reinforce irrational illness beliefs" neglect was insufficient torture in the guise of therapy should also be inflicted.

Damage goes beyond patient suffering as research into imaginary illness receives no funding, choked by weeds of medical politics the PACE trial enables this continuing misogyny.

[Hermes33 in reply to illiad2]

Here are the facts:

•A scientific analysis of the PACE trial - me-ireland.com/bogus.htm#pace

•The documented harms caused by exercise and exertion in cases of ME and CFS - me-ireland.com/scientific/1...

•Scientific and medical evidence - me-ireland.com/scientific.htm

•The abuse and harassment of ME / CFS patients - me-ireland.com/bogus.htm

[readerlist]

The multiple and fundamental flaws of the PACE trial would be problematic in any field, however the £5 million PACE trial has been hugely influential in bolstering the incorrect view that the debility of ME/CFS is the result of false cognitions, a “fear of activity,” and subsequent deconditioning.

This view informs how patients around the world are treated in the media, by society, and especially in medical practice.

Numerous clinical guidelines and medical education material, reference PACE in support of their recommendations for CBT and GET.

Basing treatment recommendations on such a questionable study creates a significant risk of harm for patients, particularly when the study could include patients with other conditions using the Oxford criteria is the source of difficulty.

[Theresa60]

Public money why are the government not questioning how money was spent.

[rocketronnie in reply to Theresa60]

Department of Work and Pensions part funded research when promised savings in welfare payments which failed to materialize.

Is there any evidence of that department seeing data justifying spending for Public Accounts Comity reports.

[CheshireKatz]

Painted themselves into a corner now with careers at stake they will fiddle as Rome burns believing that walking away unharmed happens every time.

[Ian123]

Richard Horton at the Lancet has strongly supported the flawed PACE trial from the beginning first claiming many rounds of rigorous peer review then admitting the paper was fast tracked within a month of receiving the paper it was published.

[readerlist in reply to Ian123]

Columbia University professor of statistics Andrew Gelman published a warning that The Lancet was risking its reputation by refusing to rectify errors in the main paper on the PACE trial that appeared in the journal in 2011.

In his article on a popular statistics blog, Professor Gelman described the PACE authors’ refusal to share data from the study as “unforgivable”. In a reference to the much-criticised “normal range” analyses that appeared in the Lancet paper, he said, “No paper with an analysis in which you can get worse and be counted as improved should ever be published.”

Professor Gelman said that despite this “absurd” analysis, PACE has been presented as “definitive” in the scientific literature and by public health agencies. He said that he suspects that the trial has stood so long because “The Lancet’s brand name gave this paper a pass.

Professor Gelman said that, regardless of whether the paper had been reviewed repeatedly or very little, typically “reviewers have neither access to the raw data nor the time for careful reanalysis” and that “mistakes are inevitable.” But, he said, “What I can’t excuse is the journal editor’s dogged defense of a flawed paper.”

He went on to argue that if a poor paper was allowed to hide behind a journal’s reputation then it was right that the journal’s reputation should be degraded. He said, “The Lancet editor is using his journal’s reputation to defend the controversial study. But, as the study becomes more and more disparaged, the sharing of reputation goes the other way.”

Professor Gelman described imagining a scientist in future saying, “The Lancet, eh? Isn’t that the journal that published the discredited Iraq survey, the Andrew Wakefield paper, and that weird PACE study?”

He concluded his article by saying, “Long run, reputation should catch up to reality. But before the long run comes, there are a few people out there with chronic fatigue syndrome who don’t feel like waiting.

[Effort]

Next blog virology.ws/2016/01/07/tria...

[Arianne in reply to Effort]

Dr. Mark VanNess describes ME/CFS patients fear of exercise as well founded after using CPET (cardio pulmonary exercise testing) on patients, an objective test that cannot be faked when health insurance claims are challenged in courts.

[Ian123 in reply to Effort]

Abnormalities in muscle ph following exercise ncbi.nlm.nih.gov/pubmed/204... known before subjective testing of 2011 PACE trial indicated safety.

[Hermes33]

Here are the facts:

•A scientific analysis of the PACE trial - me-ireland.com/bogus.htm#pace

•The documented harms caused by exercise and exertion in cases of ME and CFS - me-ireland.com/scientific/1...

•Scientific and medical evidence - me-ireland.com/scientific.htm

•The abuse and harassment of ME / CFS patients - me-ireland.com/bogus.htm