Major charities and individuals have joined WAMES in expressing concern about the nature of the FITNET trial being run by Prof Esther Crawley,\u00a0the lack of objective analysis in the media\u00a0coverage and the questionable\u00a0results from the original Dutch trial.<\/p>\n
WAMES does not support the FITNET\u00a0trial<\/strong>. We do not believe it is a good use of public\u00a0money. Patient surveys and poor results from the\u00a0PACE trial raise questions about the effectiveness (and safety) of CBT and GET in adults. The Dutch trial in children with\u00a0fatigue did not produce\u00a0better long term results<\/a> than usual care and it is unclear whether all participants had strictly defined ME.<\/p>\n WAMES recommends caution for young people with ME\u00a0participating in the ‘intensive activities’ that the FITNET trial requires, as post-exertional exacerbation of symptoms,\u00a0is the key characteristic of ME.<\/p>\n ME Association<\/strong>, 1 November 2016:\u00a0ME Association comments on today\u2019s news reports about the online CBT Trial for children<\/a>,<\/p>\n THE UNACCEPTABLE FACE OF ME\/CFS NEWS COVERAGE<\/p>\n Finally, to return to the BBC press coverage this morning, whilst it was encouraging to note that while it was being stressed on several occasions that ME\/CFS has a biological basis\/cause, it was completely unacceptable to then find that news bulletin coverage on BBC Radio 2 was then referring to an illness that caused children to miss school and have mental health problems.\u00a0\u00a0 Read the full article<\/a><\/p>\n Action for ME<\/strong>, 2 Nov 2016: New FITNET trial announced for young people with M.E.<\/a> There has been considerable media coverage of the trial, which began recruiting yesterday, though results are not expected for a number of years. Some coverage has suggested that M.E. leads to \u201cmental health problems and missing school\u201d (BBC news), which considerably underplays the devastating effects of M.E. on children and young people with the condition and their families.<\/p>\n Nor should the inclusion of a psychological therapy in the trial be taken as evidence that M.E. is psychological in origin. It is not. M.E. is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems. Research shows that people with M.E. score lower overall on health-related quality of life tests than most other chronic conditions.<\/p>\n Action for M.E. does not recommend or endorse any individual treatments or management approaches for people with M.E., but instead provides key information to empower those affected by M.E. to make informed decisions.<\/p>\n CBT is not a cure for M.E. but some people with M.E. tell us it helps them cope with the impact of the illness. In 2014, we surveyed more than 2,000 people with M.E and our resulting M.E. Time to deliver report showed that 33% of respondents had tried CBT and of these, 54% said they found it helpful or very helpful, 34% said it resulted in no change, and 12% said it made them a bit or much worse. However, almost all of those surveyed were adults.<\/p>\n Sonya Chowdhury, Chief Executive, Action for M.E., says, \u201cMedia coverage has repeatedly described 63% of patients being cured in the Dutch study, but this is misleading, and fails to take into account the long-term effects of M.E.\u201d<\/p>\n Additionally, it is important to note that there has been no reference to a follow-up study that was undertaken by the Dutch FITNET team. This found that, at long-term follow-up (an average of 2.7 years), there was no difference between the recovery rates for the different treatment strategies (FITNET versus any form of usual care) although recovery, as reported by the study, was eight times slower for those not using the FITNET treatment strategy. The results of the UK study are unlikely to be published for six years.\u00a0 Read the full article<\/a><\/p>\n Utting-Wolf spouts<\/strong>: PACE part II? Esther Crawley and\u00a0FITNET<\/a><\/p>\n …Costing \u00a31 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS)\u00a0model of the disease\u00a0rather than\u00a0decent biomedical research.\u00a0Crawley\u2019s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up[2], though\u00a0the BBC and their scientifically illiterate journalists imaginatively and\u00a0dishonestly\u00a0spun this as a\u00a02\/3rd cure rate.<\/p>\n Again the laziness and uncritical reporting of any story concerning ME, promoted as usual\u00a0by the Science Media Centre (SMC),\u00a0by the UK media is glaring. They even dragged out their old canard,\u00a0supposed victimisation of the brave researcher\u00a0(that would be Crawley)\u00a0by nasty ME activists,\u00a0said researcher \u2018heroically\u2019 carrying on despite abuse from a minority of patients. Such claims were\u00a0conclusively debunked by the recent First-Tier tribunal Judgement, which ordered the release of the PACE trial data but apparently no one told the BBC.<\/p>\n Today\u2019s coverage of FITNET cannot be treated in isolation and should be compared with\u00a0earlier\u00a0reporting of the PACE trial by the British media,\u00a0which was unfailingly enthusiastic, one-sided and uncritical. Both trials have been strongly promoted by the SMC, whose press releases are repeated more or less verbatim by the media, without any attempt to investigate the accuracy of their claims. This is possible in today\u2019s media due to a combination of laziness, establishment cronyism\u00a0and a lack of scientific understanding amongst journalists reporting on these issues.<\/p>\n The\u00a0extensive coverage of studies promoting the BPS model of ME is in stark contrast to the virtual non-reporting of any biomedical research.\u00a0The failure of the media to cover the recent dismantling of PACE, extensively covered elsewhere but barely mentioned in the UK press, was particularly revealing. One would think there was a media blackout, with such coverage as there was\u00a0focused more\u00a0on defending the PACE researchers than exposing their fraudulent study.<\/p>\n Had the media noted the flaws in PACE and the reasoning that underlines such studies\u00a0so they might have been able to interrogate\u00a0Crawley\u00a0regarding\u00a0the potential flaws in her study.\u00a0The fact that the\u00a0participants in\u00a0the FITNET study will be children, makes it more morally questionable, though her\u00a0focus on fatigue as the primary symptom suggests many trial subjects probably won\u2019t have ME, as was the case with PACE. No doubt this will flatter her results\u00a0if\/when they are published, not always guaranteed with Crawley as demonstrated by\u00a0the SMILE trial.<\/p>\n … it has been brought to my attention\u00a0that James Gallagher, the BBC\u2019s Health Editor who so enthusiastically promoted FITNET, is on the advisory committee of the Science Media Centre that controlled today\u2019s coverage (and pretty much all media reporting relating to ME). I don\u2019t remember his pointing out this potential conflict of interest and I shall be making a formal complaint to the BBC…\u00a0\u00a0 Read the full blog post<\/a><\/p>\n i news<\/strong> post by Scott Jordan Harris, 1 Nov 2016: CBT won\u2019t cure my chronic fatigue, any more than it would cancer \u2013 it\u2019s a physical illness<\/a><\/p>\n My CBT helped me immensely in that it gave me mental strategies to cope with the physical limitations of my life. I hope it can help others in the same way. But the idea that CBT is a treatment for ME itself is dangerous and unhelpful.<\/p>\n What ME-sufferers in the UK really need is not talking therapy but well-funded, and properly conducted, biomedical research. And the truth is that, when it comes to ME, Britain is a backwater.<\/p>\n As American medical journalist Miriam E. Tucker\u00a0tweeted\u00a0from an\u00a0international conference\u00a0on ME in Florida last week: \u201cStriking disconnect between the high-level science here at #IACFSMEConf vs. attitude toward \u2018chronic fatigue syndrome\u2019 in the med[ical] community.\u201d\u00a0\u00a0\u00a0 Read more<\/a><\/p>\n Epigram, by Emily Faint, 2 Nov 2016: Backlash for \u2018landmark\u2019 University research trials<\/a><\/p>\n Interestingly, psychologists Trudie Chalder and Peter White<\/strong>, researchers in the PACE trial questioned the results of the original Dutch FITNET trial back in 2012: Chronic fatigue syndrome: treatment without a cause<\/a><\/p>\n What were the limitations of the trial? The main di\ufb03culty in the interpretation of the impressive out-comes in this trial was to understand the di\ufb00erences between FITNET and usual care. We are given little information about usual care beyond a brief summary of treatments received by participants. This lack of information means that the di\ufb00erent outcomes might have been due to di\ufb00erences in dose (number of sessions or contacts), frequency or duration of the interventions, the involvement of parents in FITNET but not usual care, or some other di\ufb00erence that was not measured.<\/p>\n The other main issue is how to de\ufb01ne recovery from an illness that includes symptoms that are sometimes reported by healthy people.8 The investigators de\ufb01ned recovery post hoc. However, the criteria used to de\ufb01ne recovery were not stringent and some individuals who entered the study were already attending school fairly frequently. The investigators also used liberal criteria, such as the population mean plus two rather than one standard deviation, as their thresholds for recovery by continuous measures such as fatigue.<\/p>\n Therefore, the 63% of patients reported as recovered might have included those who had a signi\ufb01cant improvement rather than being fully recovered. This proportion of patients does not detract from the still impressive di\ufb00erence from the 8% of participants who were judged to be recovered after usual care. Read full comment<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Major charities and individuals have joined WAMES in expressing concern about the nature of the FITNET trial being run by Prof Esther Crawley,\u00a0the lack of objective analysis in the media\u00a0coverage and the questionable\u00a0results from the original Dutch trial. WAMES does … Continue reading
\nNovember 02, 2016<\/p>\n