Esther12

Senior Member (Voting Rights)
The science media centre has played an important role in stigmatising CFS patients, and anyone critical of PACE and related work, so it's always interesting to look at how they present themselves.

Someone sent me this old report recently, and while it's not that interesting or relevant to us, I thought I'd post up my notes on it:

https://www.sciencemediacentre.org/...-Centre-mental-health-consultation-report.pdf

The intro talks about the important role Til Wykes played in setting up the role of a mental health specialist at the SMC. When the tribunal ordered the release of PACE data, Wykes was alongside Sharpe and Moss-Morris at the SMC's 'CBT – does it really work?' talk where they addressed questions like "What about issues like placebos and double-blind RCTs – does it matter if we don’t have the same level of rigour as for drugs?" [no sceptics invited]:

http://www.sciencemediacentre.org/cbt-does-it-really-work/


Introduction:
Mental health and the Science Media Centre

The Science Media Centre (SMC) is an independent press office set up
specifically to deal with the more controversial science stories that hit
theheadlines. Established in 2002 in the wake of science stories like GM Crops
and MMR, the SMC has been a major success story helping scientists to get
their voices heard on breaking news stories, running almost 100 press
conferences a year and being used routinely by every major news
organisation in the UK.

The centre has always reacted to media controversies around the science of
mental health and run briefings on new research on controversial issues
ranging from cannabis and schizophrenia to post-traumatic stress disorder
and risks of anti-depressants. We have some of the UK’s top mental health
researchers on our database. However, our collaboration with Prof Til Wykes
of the Institute of Psychiatry and the coalition organized around the
Mental Health Declaration launched towards the end of 2009 demonstrated
that there is potential for the SMC to do considerably more in this area if we
were able to expand the SMC team to accommodate another person.

This coincided with a powerful editorial in Nature1 suggesting that, when it comes
to profile, mental health issues are still a poor relation to other medical research
such as cancer. The concept of recruiting an additional press officer at the SMC who would
focus on increasing our media work in this area is built on the success of a similar
collaboration with the engineering community; with funding from a
number of engineering bodies we were able to recruit a press officer to take
a lead on this issue and have dramatically increased the number of
engineers on the database and the number of engineering briefings as a
result.

Til Wykes led fundraising for the new press officer. She secured funding
forthe position from Charlie Waller Memorial Trust, Rethink, Medical Research
Council, Mental Health Foundation, Mental Health Research Network,
Scottish Mental Health Network, Mental Health Research Network Wales,
South London and Maudsley Charitable Funds and the Wellcome Trust.

I (Claire Bithell, see biography in Appendix 2) joined the SMC as Head of
Mental Health at the end of May 2010.

Maybe, if journalists don't have time to properly investigate a story, they should just not write about it, rather than farm it out to an untrustworthy organisation like the SMC?

The SMC has often found that news journalists, with their short deadlines and requirement to cover a number of stories each day, welcome expert comment on complex and emotive health and science stories that may also have an ethical or political dimension.

Mental health appears to fit in this category and so it would be best to place our efforts working with news journalists. The main role of the SMC is to work with news journalists, so this recommendation is a good fit with the other roles the SMC carries out.

There's been a push to change this, but the MH research charities I've seen seem completely thoughtless, and happy to channel money to poor quality research.

Many people speculated that part of the reason mental health research does
not have a higher profile is that there has not been an organisation that has
focussed specifically on publicising this area. In particular, people pointed to
a lack of a charity funding large amounts of research compared with
otherfields (e.g. British Heart Foundation or Cancer Research UK).

“When I moved from the field of cancer to mental health, I was very surprised
to find that there was no big research charity in the field. When I was a
cancer researcher, our funders were always keen to publicise our
latest research findings. I suspect this has not been the case for mental
health research.”
Prof Clair Chilvers, Trustee, Mental Health Research UK

“At the moment there is no mental health charity that funds large amounts of
research, maybe this is why the stories aren’t out there?”
Prof Til Wykes, Professor of Clinical Psychology and Rehabilitation, Institute
of Psychiatry

Wessely comments:

“It would be naive to think that just knowing more means the public would
have a better image of mental health – things are much more complicated
than that and mental health disorders are often unpleasant, complicated and
unpredictable.”
Prof Simon Wessely, Chair of Psychological Medicine, Institute of Psychiatry

Though almost all people were excited about the future, some cautioned
against overselling the findings of this research. Many felt that there were
many hurdles to be overcome and that much of the research is at a very
basic stage.

“There are great things happening in psychiatry but we must be careful not
to overhype. For example, the applications of brain scanning have
sometimes been over exaggerated.”
Simon Wessely, Chair of Psychological Medicine, Institute of Psychiatry

Luckily, the SMC found a way to evade discussions involving troublesome patient groups:

One of the main reasons cited was the complexity of the area and the fact
there are few simple messages to communicate. Others talked of diversity of
opinion that could appear as conflict in the media, whereas some were
concerned they would be put up for interview against patient groups or
people that believe that psychiatry or mental health treatments are
fundamentally damaging. Most people who held these views felt that this
type of media coverage could be bad for the image of mental health research
or psychiatry.

Concern about the poor reputation of psychiatry, and the desire to improve it:

“Psychiatry is a part of medicine and we need people to perceive it as such.
There is a fundamental misunderstanding about what we do e.g. primary
prevention in mental health is not what we do – people come to us when
they are ill.”
Prof Simon Wessely, Chair of Psychological Medicine, Institute of Psychiatry

It was of concern to some that a negative view of psychiatric medicine may
discourage those with mental health problems from seeking help. Almost
everyone who was concerned about the reputation of psychiatry also felt that
something needed to be done to improve the situation, and that the media
was one way to improve things. Therefore, one of the things that the SMC
could do is help psychiatrists communicate with the media. A by-product of
this is likely to be better insight into the role of psychiatry in the news media.

The SMC claims this with regard to different views from psychology and psychiatry:

The SMC works with a wide range of experts in all fields of science, engineering and health.
The SMC does not have position statements and so the different viewpoints of the groups can
co-exist with our work and we will work with both disciplines to help inform debate.

The SMC takes an evidence-based approach and we place considerable weight on peer reviewed research published in credible scientific or medical journals.

Guess who came to fill this role?:

There are not enough mental health research spokespeople in the media
Many people felt that there were not enough experts who know about mental
health research speaking in the media. People tended to cite one or two
people who do a large amount of media work, while the majority of people do
not engage. Meanwhile journalists I spoke to during the period said that they
would really benefit from more spokespeople to speak with. One national
news journalist remarked:
“I cannot name an expert in psychiatry or mental health research off the top
of my head, but I could give you a long list of experts on stem cells or cardiology.”

“Compared to areas such as stem cells and genetics there are very few media
spokespeople for psychiatry.”
Prof Simon Wessely, Chair of Psychological Medicine, Institute of Psychiatry

They love to seize an opportunity:

It is also worth noting that the SMC takes the view that stories in the
headlines, even if they are negative or inaccurate, present an important
opportunity to engage with the media and we have built up expertise in
seizing opportunities as they are presented. This approach has worked well
when working on complex and controversial areas of science, engineering
and health and there is every indication this approach would also work for
mental health research.18

“The SMC sees science in the headlines as an opportunity rather than a
threat. While many have noted that science and news are a poor fit, the
centre works to ensure that scientists exploit the opportunities provided by
science in the headlines to engage the public when they are most interested
in and concerned about science.”
Fiona Fox, Director of the Science Media Centre

Looks like the author of this report, and the first Head of Mental Health at the SMC had "chonic fatigue" from 16-19, and wishes she had access to the FITNET trial Crawley was hyping.

Biography of Claire Bithell

Claire has a degree in Cell Biology and a PhD in Biochemistry from the University of Manchester. Claire joined the SMC for the first time in 2004 and was promoted to Senior Press Officer in 2005. During this time she worked to help experts, working in areas such as embryonic stem cell research, fertility, animal research, engage with the news media.

In February 2008 she took on a new challenge; to manage the press office of an independent
regulator, the Human Tissue Authority. During her two years at the Human Tissue Authority, Claire worked with the media on stories as varied as raising awareness of new types of transplantation to dealing with adverse incidents around tissue retention following post-mortem examinations.

Claire was appointed as Head of Mental Health at the SMC in May 2010.

"I wish this treatment was around for Chronic Fatigue when I had it at 16 to 19 - the brilliant Esther Crawley Bristol Uni on @BBCr4today CFS"



Simon Wessely liked her tweet.
 
“There are great things happening in psychiatry but we must be careful not
to overhype. For example, the applications of brain scanning have
sometimes been over exaggerated.”
Simon Wessely, Chair of Psychological Medicine, Institute of Psychiatry

On one hand they do want to hype bran scanning as proof of evidence based psychiatry but on the other they will be worried that they cant just be pronounces of subjective nonsense allowing them to own as many as possible conditions with their gods presiding over them with voodoo and quackery.

They love to be incontrol of the "in between" areas of medicine which would no longer be so once they have diagnostic tests and the understanding of the mechanisms.

They lose control of things like MS etc when scanning improves to show neurological damage instead of themselves owning such conditions with "weak mind" interconnected mind body nonsense.
 
They're not giving up yet...
Don't know why they're doing that right now. Could it have something to do with the paper to be released in the next days? (meaning they're freaking out?)

What is the controversy?

  • Amongst the mainstream medical research community, CFS/ME and NICE recommended management is not especially controversial. Likewise, data from centres specialising in CFS/ME report good patient outcomes and satisfaction. However the management is highly controversial among a minority of patients and doctors. A major point of contention is whether psychological and/or behavioural factors play any role in the illness, and likewise whether psychological and behavioural therapies have anything to offer as treatments.
  • One reason behind the controversy, which is long standing, is a concern that recommending these sorts of therapies means that the illness is ‘all in the head’ and not a ‘real illness’. This view dates back to previously pejorative media coverage (such as describing it as ‘yuppie flu’) and a perceived lack of recognition by doctors and others that CFS/ME is a serious illness
http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/

And still the same good old bullshit about CBT and GET:
What can currently be done to treat it?

  • There is presently no cure for CFS/ME, but rehabilitative therapies, Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are currently recommended by NICE. These therapies can be tailored to the severity of the illness and have been shown to help patients with mild to moderate CFS/ME
 
That looks to me as if written by Michael Sharpe. He is desperately trying to hold on to his position by pulling rank.

The international ME research community is almost unanimously fed up to the back teeth with NICE guidelines and want them changed. The Americans and the Dutch have already said so officially. Somebody is living in a goldfish bowl.
 
They're not giving up yet...
Don't know why they're doing that right now. Could it have something to do with the paper to be released in the next days? (meaning they're freaking out?)
Looks like a desperate rearguard action. The Collins definition seems particularly apt: "if someone is fighting a rearguard action or mounting a rearguard action, they are trying very hard to prevent something from happening, even though it is probably too late for them to succeed".
 
An attempted pushback due to all the success we've been having recently, I would say, possibly even some attempted revenge for being ousted from the CMRC. One useful aspect of this is that it makes it even clearer how biased the SMC is, and to which side.
 
However, experts from the medical community, including independent statisticians, trial design specialists, and other researchers have stated that it is a good quality trial

I would love to know who these independent statisticians and trial design specialists actually are. They never seem to stand up and be counted. Maybe because someone will point out they are being dumb. When was an unblinded trial with subjective endpoints worth row of beans? But of course the problems with the trial are about psychology and not statistics and presumably nobody asked a trial psychologist.

I am sorry that I do not tweet, but I never will.
 
However, experts from the medical community, including independent statisticians, trial design specialists, and other researchers have stated that it is a good quality trial

I would love to know who these independent statisticians and trial design specialists actually are. They never seem to stand up and be counted. Maybe because someone will point out they are being dumb. When was an unblinded trial with subjective endpoints worth row of beans? But of course the problems with the trial are about psychology and not statistics and presumably nobody asked a trial psychologist.

I am sorry that I do not tweet, but I never will.

Perhaps someone can tweet a link to your post. :)

Such as @Tom Kindlon?
 
I was going to add more quotes from the text which I found unbelievable, but it was impossible to choose just a few.

Well I'll happily quote this :wtf: (Grrrrr! :banghead: )

GET also aims to help patients to gradually do more of the activities that they value. It can also be used to aid recovery from other illnesses such as heart disease and cancer
 
They're not giving up yet...
Don't know why they're doing that right now. Could it have something to do with the paper to be released in the next days? (meaning they're freaking out?)


http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/

And still the same good old bullshit about CBT and GET:

"This is a Factsheet issued by the Science Media Centre to provide background information on science topics relevant to breaking news stories. This is not intended as the ‘last word’ on a subject, but rather a summary of the basics and a pointer towards sources of more detailed information. These can be read as supplements to our Roundups and/or briefings."

No mention of the JHP special edition on PACE:
http://journals.sagepub.com/doi/full/10.1177/1359105317722370

eta: have just emailed David Marks with the link to the SMC
 
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