Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[slysaint]

The BBC has ties to the SMC. So do ITV. I wouldn't expect anything from them.

http://www.sciencemediacentre.org/about-us/governance/

Trustees
The board of Trustees is the major decision-making body of the Science Media Centre and meets at least three times a year. Trustees are distinguished in the fields of science, engineering, medicine, journalism, communications, finance, law and policy.

Jonathan Baker (Chair)Professor of Journalism, University of Essex, (ex-Head of Newsgathering, BBC)


Marshall Davies (Treasurer)
Former President of the Royal Pharmaceutical Society

Julian HitchcockCounsel, Denoon Legal


Dr Helen Jamison
Head of Media Relations, Wellcome Trust

Prof. Ottoline LeyserDirector & Professor of Plant Development, Sainsbury Laboratory, University of Cambridge


Prof. Sir Mike RawlinsFormer Chair of NICE


Jo RevillChief Executive, British Society for Immunology


Fran Unsworth
Director World Service Group, BBC

Prof. Sir Simon Wessely
Professor of Psychological Medicine, Kings College London



Advisory Committee
The Trustees are guided by a voluntary group of advisors from the fields of science, engineering, medicine, journalism and communications, who provide expertise and advice, and also meet three times a year.

Prof. Wendy BarclayChair in Influenza Virology, Imperial College London


Steve BatesChief Executive, BioIndustry Association


Dr Helen BedfordSenior Lecturer in Paediatric Epidemiology, UCL Institute of Child Health


Prof. Dorothy BishopProfessor Developmental Neuropsychology, University of Oxford


Adrian BullExternal Relations Director, National Nuclear Laboratory


Dariel Burdass
Deputy Chief Executive and Director of Strategy and Communications, Society for General Microbiology

Prof. Chris ChambersSenior Research Fellow in Psychology, Cardiff University


Lord Paul DraysonEntrepreneur and former Science Minister


James Gallagher
Health Editor, BBC News

Jeremy LauranceFormer Health Editor, The Independent and the i


Prof. Robin Lovell-BadgeHead of Developmental Genetics, MRC National Institute for Medical Research


Lawrence McGinty
Former Science Editor, ITV News

Fay SchlesingerHome Editor, The Times

 

[Sasha]

I was just coming back to say that an old school classmate of mine had a great little article published online by the Independant/iNews, and it seems (to me) to be on their front page:
View attachment 18039 But is seems that I was soundly beaten to it

Great stuff. Concise, well written and balanced counterpoint, giving CBT it's dues while putting it in it's place. Also covering IACFS/ME conference. A handy piece to link people to. Will have to see if it makes print copy.

I think you already mentioned that it made the print copy. In today's paper copy of i, there's a very good letter praising the article (p. 18):

Show the doctors

What an excellent piece from Scott Jordan Harris on ME (i, 2 November). It should be pasted to the wall in every GP surgery in the country. In a few paragraphs he sets out the context of what will in due course be realised to have been a medical scandal perpetrated on thousands of chronically ill people throughout the UK.

Yes, CBT can help with some aspects of coping but what is really needed is more research into the causes and possible cures for this complicated and clearly physical disease.

 

[Sasha]

Still reading today's i newspaper and (annoyingly) on p. 30, in the "7 Days" roundup, on the "Good Week" list (which includes things such as the Chicago Cubs winning the World Series) is "ME SUFFERERS: A new online therapy to treat the condition is being trialled by the NHS."

I don't think it's unusual for newspaper editors' left hands not to know what their right hands are doing.

 

[slysaint]

I've lost track of which thread is which, but it all seems to stem from this 1997 Guide to CFS by Wesseley so I don't think it makes any difference:

"The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse). Interventions are then aimed to overcoming these illness-perpetuating factors."
"The only treatment strategies of proven efficacy are cognitive behavioral ones. The most important starting point is to promote a consistent pattern of activity, rest, and sleep, followed by a gradual return to normal activity".

20 years they've been saying the same thing, 'testing it', trialling it, spending money on it. Even Crawleys current mention of the HPA, cortisol, seratonin etc is straight out of one of Wesselys papers.

The 'vocal few' must be due for retirement.

 

[AndyPR]

Reinvention - The Cycle of Research into ME in the UK - update from IiME

http://www.investinme.org/IIME-Newslet-1611-01.shtml

 

[TiredSam]

Reinvention - The Cycle of Research into ME in the UK - update from IiME

View attachment 18134

http://www.investinme.org/IIME-Newslet-1611-01.shtml

How very refreshing.

 

[BurnA]

How very refreshing.

@charles shepherd - did you get a chance to read this ? They have quite a different opinion to Holgate and the CMRC than you do so I'd be interested in your comments.

 

[AndyPR]

....
However, the damage caused by the PACE trial lingers.

Recently, articles have been put out by reputable, mainstream media sources (such as BBC News and The Guardian) that have treated ME/CFS as a psychological disease.

ME/CFS has very clear and proven biological (not psychological) traits, which include the following (as well as dozens of other measurable traits):
......

http://solvecfs.org/disturbing-steps-backward-toward-somatization-of-mecfs/

 

[worldbackwards]

I'm not sure it's a 'step back towards somatisation'. It's just a way of attempting to force business as usual. Did anyone expect them to curl up and die?

 

[AndyPR]

I'm not sure it's a 'step back towards somatisation'. It's just a way of attempting to force business as usual. Did anyone expect them to curl up and die?

It may depend on where you are based or where you get you ME news from principally. Been lots of positive ME news coming out of the US at the moment, so measured against that in the US it might seem to be a step back, whereas if you are in the UK then it is very much an attempt by them to continue business as usual here.

 

[Cheesus]

I've had a response from my second complaint to the BBC after their initial terrible response. This was the the first response they sent me in case you missed it:

Many thanks for getting in touch about BBC News.

Whilst we’re disappointed to learn that you were unhappy with our coverage, we'd clarify that this is the largest clinical trial of an intervention in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and is being directly funded by the National Institute for Health Research (the research wing of the National Health Service). This makes it a significant story.

Our coverage has been a mix of why the researchers have decided to undertake the trial and the personal experiences of patients (particularly children) with the disease. The Association of Young People with ME – a charity that represents children with the disease – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS / ME and that this trial is needed.

The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651.

We hope our reply here helps to clarify our approach. Many thanks once again for taking the time to get in touch.

Kind Regards

BBC Complaints Team
www.bbc.co.uk/complaints

My reply:

I am afraid you missed the point of my complaint. In your response you use the size of the trial and the fact that it will be funded by the NIHR as evidence of just cause to publish an article on this topic. I agree with you on these points and my complaint made no attempt to suggest otherwise. I apologise if that was misconstrued.

The crux of the complaint was about the bias present within the article rather than the presence of the article itself. The original version of the story, which appeared on the front page of the BBC website, did not include any opinions that contradicted the message of the article or the academics and patients interviewed for the purpose of the article. However, as I am sure you are aware, the role of CBT in the treatment of CFS/ME is highly contentious, with much evidence, expert opinion and personal anecdote suggesting CBT is at best ineffective and at worst very damaging.

A later version of the article appeared with a quote from ME Action stating that there was no good evidence to support the use of CBT in the treatment of ME (or words to that effect). However this was 24 hours after the story had first appeared, and the vast bulk of the audience will not have been exposed to this alternative opinion.

Moreover, the article cites the positive outcome of the Dutch FITNET trial of online CBT for the treatment of CFS/ME, yet fails to cite the long-term follow-up of the trial that showed no improvement in the treatment group relative to the control group. The upshot is that the story painted an entirely biased picture that does not reflect the state of evidence of the use of CBT in the treatment of children with CFS/ME or the contentious nature of the debate surrounding the topic.

The BBC failed in its duty to impartiality and presented a picture removed from reality. I request that in the future you aim to uncover and give equal space to both sides of the argument.

And their final response:

Thank you for taking the time to contact us again. I appreciate that you feel strongly about our recent ME/CFS reporting and am sorry to learn you are unhappy with our previous response.

We had raised your original concerns with the senior editorial team within BBC News before replying, and having liaised with them again now they feel they have already explained the position to you as fully as they can at this first stage of the complaints service.

We have now responded and explained the BBC’s position as clearly as we can and I do not feel there is more we can usefully add at this stage of the BBC’s complaints process. I realise you may be disappointed by this but we have sought to explain the position and do not have further to add at this stage.

There can be up to three stages to the complaints procedure and you can find full details at www.bbc.co.uk/bbctrust/governance/complaints_framework/. If you believe this specific individual broadcast represents a serious and specific breach of the BBC’s Editorial Guidelines and you would like to take your complaint further, you can contact Stage 2 of the complaints process, the BBC's Editorial Complaints Unit, within 20 working days to explain why, and they will carry out an independent investigation. You can email them at: ecu@bbc.co.uk or alternatively write to them at the following address: BBC Editorial Complaints Unit, BC2 B4 Broadcast Centre, 201 Wood Lane, London, W12 7TP. Should you choose to escalate your complaint we would ask that you include the case number provided above in your correspondence.

Many thanks once again for taking the time to get in touch.

I am not clear what exactly their position is, because they haven't actually addressed the content of my complaint. They instead just defend the motivation for writing the article and cite other instances of the BBC reporting on ME.

 

[Marky90]

The time has arrived for the phrase; Cheeeesuuuus...

Suitable for the situations when you try to make a rational point, but the listener rather like to fill your mouth with french cheese until you suffocate on their fudge.

It`s fascinating though, you took your time raising extremely valid feedback. And they basically say they don`t give a shit, and they won`t look into it.

It reminds me of trying to talk god with theists. At the end of the day it all comes back to; "WELL I UNDERSTAND WE CANT PROVE GOD; BUT ITS ABOUT BELIEVING INNIT!!"

 

[Cheesus]

but the listener rather like to fill your mouth with french cheese until you suffocate on their fudge

That doesn't sound too bad, actually.

 

[AndyPR]

Positive Health Online letters to editor

#MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome

Patients with ME/CFS Urge NHS to Adopt Scientifically-Sound Approaches to Treatment

Study Finds No Difference in Treatment for ME/CFS Patients At Long-Term Follow-Up

According to reports in The Guardian and BBC yesterday, hundreds of young patients in the UK suffering from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are set to receive online psychological therapy. FITNET will cost £1million, to be funded by British taxpayers - yet the Dutch study on which the trial is based found no difference in patients at long-term follow-up.

#MEAction, an international network of ME patients, along with other patient groups and scientists from around the world, condemn the waste of resources on such inherently flawed studies. Arguing that an intervention that consistently shows null results at long-term follow-up is not worth pursuing further.

The proposed study - known as ‘FITNET’ - shares many flaws with the debunked PACE trial, which was described as “the height of clinical trial amateurism” by Dr Bruce Levin of Columbia University. It was subsequently discovered that scientists misrepresented the efficacy of cognitive behaviour therapy and graded exercise therapy in ME patients - but only after a protracted battle to obtain the open-sourced data.

http://www.positivehealth.com/article/letters-to-the-editor/letters-to-the-editor-issue-235