Stonebird

25% ME Group and Stonebird Neither Reasonable Nor Fair Response to Consultation on replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP),   on behalf of people with Severe ME EXTRACT This is a response to the consultation on behalf of people who are severely affected by the neurological disorder myalgic encephalomyelitis ( M.E.). It is estimated that 1 in 4 people with M.E. are severely affected. This response has been jointly prepared by the 25% ME Group, a UK charity supporting people with severe M.E., and Stonebird, a web resource aimed at sharing some of the experience of living with severe M.E. All of those involved in drafting this response have direct experience of this disabling disorder, either as a patient or as a carer. What do we mean by ‘severely affected’? Those who are severely affected have severe restrictions in their mobility and ability to carry out essential daily tasks and attend to personal care. 1 There are profound co...

Stonebird : How bad can it get ?? Some initial Press Coverage of the PACE Trial SKY News : Study: 'Talking And Exercise Could Cure ME' Co-author of the PACE study Professor Michael Sharpe said the results should end the controversy over the treatments - some patient groups insist that exercise does more harm than good. He told Sky News: "Our hope is the evidence from this trial - which is the largest trial done in this condition - gives some solid evidence about what treatments help and importantly, that those treatments are safe. "People have quite rightly been unclear what treatments help and have been worried whether they are safe. "This trial should actually answer those concerns." http://news.sky.com/skynews/Home/UK-News/Chronic-Fatigue-Syndrome-ME-Could-Be-Reversed-With-Counselling-And-Exercise-Research-Suggests/ The Guardian Study finds therapy and exercise best for ME The biggest-ever study of treatments f...

I have just posted this on the Guardian : The PACE Trial was anything but "scientific" : It  used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder .  It excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously. I t used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relied upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. The Principal Investigators all have financial links with the health insurance industry, ( cf . Professor Malcolm Hooper response to the MRC PACE Trial http://carersfight.blogspot.com/2011/02/professor-hooper-response-to-mrc-pace.html) My wife's has been forced to  live in all-over screaming, throbbing  physi...

Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet 17 th  February 2011 1.         The MRC PACE Trial used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder (WHO ICD-10 G93.3). The Trial’s  “operationalised Oxford research diagnostic criteria for CFS”  (Trial Protocol version 5, 2006, Section 7.2) were partly financed by the Chief Principal Investigator’s (Professor Peter White) own money (JRSM 1991:84:118-121).  Professor White’s American peers have pointed out that the UK estimates (that are based on the Oxford criteria) are likely to include a high percentage of patients with psychiatric morbidity ( “It is at least possible that the 2.54% to 2.6% rates in both the United States and Great Britain are due to a broadening of the case definition and possible inclusion...