Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

[Sasha]

Professor Holgate appears to be be rather naive about the strategies of the psychosocial school, and about the agenda and tactics of the Science Media Centre; in particular the SMC orchestrated media blitz alleging harassment and death threats against 'scientists'....

I seriously doubt that Prof. Holgate is naive. I really don't see how any biomedical scientist with years of involvement in the world of ME could possibly be. Bear in mind that he's also very senior as a scientist and that you don't get to that level by being politically ignorant or naive.

There's more than one way to be naive. One way is to be blindly optimistic no matter what. Another way is to be blindly pessimistic no matter what.

This is a complex venture in a politically complex world and time is going to tell. I think in the next couple of years we'll have a very good take on whether the Collaborative is going to have the results that we want.

And when you say, @Wildcat, that some of us don't have time to wait, I agree with you but I'd take that further. I'd say that not a single one of us has time to wait. We all want the same thing and we needed it thirty years ago. We just differ in what strategies we think will get us there faster.

 

[Sean]

What on earth is the SMC doing involved with the Collaborative?

Yeah, I want to know this too. Since when does the propaganda unit for one party have a legit role in this sort of process/organisation?

Holgate better keep his wits and integrity about him.

 

[Wildcat]

@Sasha and all,

The repeated concilliatory collaborating with the psychosocial regime have got us precisely nowhere in the last 25 years. Despite many projects (such as the CMOs WG and, yes, the PACE Trial) which were all latched onto as 'hopeful' at the time. The voices which warned early on about the inevitable unhelpful outcomes of those projects were ignored or dismissed.

I think that people on this (and other) threads have given cogent reasons to distrust the Collaborate and to critique its structure, its Charter, and its performance thus far. It would not be reasonable to dismiss such concerns as "blind pessimism".
.
.

 

[Dx Revision Watch]

In case it has not been mentioned, the references to Support4rs* within the materials obtained by Jane Colby:

*Source: Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC), Page 3, (quote 18) under Action Points.

This is the website for support4rs:

http://www.support4rs.com/

"support4rs - The Government's Preferred Supplier...

... contracted to provide protective services with regard to Animal Rights Extremism to research councils, public research institutions and medical research charities. Consequently we work collaboratively with the leading research locations throughout the UK drawing upon the experience of each for the benefit of all."

We assess the current intention and capability of Animal Rights Extremist groups and what risk they present to members of the biomedical research sector.

We assist with the compilation and maintenance of management plans and procedures needed when responding to any animal rights related incidents or threats.

We advise stakeholders in respect of proportionate responses to incidents and the balance between lawful protest and unlawful activity.​

I echo what others have said - citing the tabling of Parliamentary Questions and House of Lords Debates under "harassment" is very disturbing.*

*Source: Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC), Page 3, under Harassment.

 

[Dx Revision Watch]

http://www.sciencemediacentre.org/w...researchers-experiencing-harrassment-2013.pdf

Science Media Centre

Advice for researchers experiencing harassment
14/07/13

-----------------

Extract, Sunday Times magazine feature article, May 5, 2013

http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece

This man faced death threats and abuse. His crime? He suggested that ME was a mental illness

Michael Hanlon Published: 5 May 2013

[...]

There is, I am told, a specialised unit at the Metropolitan Police dedicated to monitoring the threat, but no one at Scotland Yard will speak publicly about this.

Publicity, it seems is to be avoided at all costs, and the less said about this bizarre war, I am told, the better.

I understand that a list is often drawn up in these circumstances - to protect those who might be under threat from potentially dangerous activists of any hue, not just those who are objecting to scientists undertaking research into ME.

Some argue that circulating lists of activists - who in many cases might be mentally ill - has implications for civil liberties.

But given the nature and scale of the threat, it is unsurprising that a set of the most worrying names exists- and it is at the disposal of the authorities.

After much persuasion, I am shown a list of activists; names that crop up time and again on the ME forums.

They are divided into three categories: militant, radical and active.

-----------------------------------

http://www.scidev.net/global/journa...-lambasted-for-pushing-corporate-science.html

UK’s Science Media Centre lambasted for pushing corporate science

-------------------------------------

http://www.theguardian.com/education/2003/dec/09/highereducation.uk2

Invasion of the entryists
How did a cultish political network become the public face of the scientific establishment?

George Monbiot, Tuesday 9 December 2003

 

[Sasha]

The repeated concilliatory collaborating with the psychosocial regime have got us precisely nowhere in the last 25 years. Despite many projects (such as the CMOs WG and, yes, the PACE Trial) which were all latched onto as 'hopeful' at the time. The voices which warned early on about the inevitable unhelpful outcomes of those projects were ignored or dismissed.

There's nothing inevitable about unhelpful outcomes of initiatives to try to help us (I wouldn't typify PACE as an attempt to help us).

I think that people on this (and other) threads have given cogent reasons to distrust the Collaborate and to critique its structure, its Charter, and its performance thus far. It would not be reasonable to dismiss such concerns as "blind pessimism"..

I'm not dismissing all concerns about the Collaboration as blind pessimism. I share some of those concerns myself, as I've said from the beginning. What I don't agree with is blanket pessimism, where everything to do with the Collaborative is seen through a negative lens, so that if things go well, we can't even see them because we're so blinkered.

 

[Sasha]

Yeah, I want to know this too. Since when does the propaganda unit for one party have a legit role in this sort of process/organisation?

Holgate better keep his wits and integrity about him.

There's no evidence at all that they have one. The BPS scientists push the harrassment agenda (just as our scientists push theirs) within the Collaborative.

 

[Dx Revision Watch]

In July 2013, @maxwhd highlighted extracts from the SMC report:

"Review of the first three years of the mental health research function at the Science Media Centre"

available at:

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf


@maxwhd

http://www.twitlonger.com/show/n_1rkle9f

#mecfs SMC ran second brainstorm in early 2013 to discuss what can be done -

Maudsley Charity (previously South London and Maudsley NHS Trust
Charitable Funds) awarded the SMC a grant of £10,000 p.a. for 3 years
-

The SMC's work on mental health research has produced more awards than
any other area of our work.

The SMC ourselves won the European College of
Neuropsychopharmacology’s inaugural Media Award for science in the
media for our championing of evidence-based science in the face of
received wisdom, public prejudice and special interests, and our
efforts to ensure that the most critical issues currently affecting
science and public health are debated on the basis of accurate and
objective scientific information.

Tom Feilden, science correspondent for BBC Radio 4’s Today programme,
won the UK Press Gazette's first ever specialist science writing award
for breaking the story the SMC gave him about the harassment and
intimidation of researchers working on CFS/ME.

The SMC had nominated him for the award.

Tom Feilden was shortlisted for a Mind Media Award for his package
that came directly from an SMC briefing on the role of mental health
experts in Broadmoor Hospital.

The SMC jointly nominated Simon Wessely for the inaugural Sense About
Science John Maddox Prize for Standing up for Science for his courage
and bravery in speaking out on CFS in the face on intimidation, which
Simon won.

<>

Tom Feilden, science correspondent, BBC Radio 4 Today programme said:

“Despite being such an important part of the health care agenda,
mental health is often overlooked by the mainstream media. Claire
Bithell's tireless efforts behind the scenes at the SMC have helped us
address that problem on the Today programme. Recent examples include
features on self harm, schizophrenia, and exposing the abuse and
intimidation suffered by researchers working on chronic fatigue
syndrome. We certainly wouldn't be up for a Mind Media Award [for our
series "Inside Broadmoor"] without her.”

<>

Supporting experts targeted by extremists


We have also been involved in supporting experts who have found
themselves being targeted by individuals or groups who do not like
their research.

This has been particularly important in the case of psychiatrists and
psychologists working on chronic fatigue syndrome/ME.

These researchers have found themselves in the firing line from a
small group of extremists who are opposed to psychiatrists or
psychologists doing research on chronic fatigue syndrome/ME.


The SMC ran a press briefing on the first findings from the PACE
trial, and supported the researchers involved throughout this process,
for example, by organising media training in collaboration with the
MRC.

When we became aware of the level of intimidation researchers were
experiencing we brought together key parties for a brainstorm to
discuss what could be done to aid researchers.

At this event it was agreed that these harassed experts should speak
out publically about the harassment they were experiencing.

As a result the BBC Radio 4 Today programme ran an exposé on the piece
(http://www.bbc.co.uk/news/science-environment-14326514) and a number
of outlets followed the story including the Observer

(http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis)
and the Daily Mail

(http://www.dailymail.co.uk/health/article-2020241/Scientists-investigating-ME-death-threats-investigating-psychological-causes.html).

For some researchers this media work has dramatically reduced the
harassment they are experiencing.

For others, however, things have not improved.

So the SMC ran a second brainstorm in early 2013 to discuss what can be done.

It was agreed that more must be invested in putting the case for
research of chronic fatigue syndrome/ME explaining the burden and
seriousness of the disease both to the media and the public.

The SMC will look for opportunities to do media work in this area.

<>

One of the consultation findings was that psychiatry is particularly
badly portrayed in the news media so the SMC has concentrated a lot of
effort on getting to know academic psychiatrists.

This has been a great success, however we do not have as many academic
psychologists on our database and do not have as good contact with the
research community in this area.

We could do more to engage with this subject area.

Action point: the SMC makes contact with more academic psychologists
and ensures they are well represented on the SMC database.

<>

Seizing the agenda

As well as breaking stories of new research and responding to mental
health in the news, the SMC has also helped to set the agenda and
frame the narrative of reporting on a number of big issues.


Previous to our background press briefing on DSM 5 few of the UK based
science journalists knew about the unease amongst UK scientists.

The background press briefing generated vast media coverage and
informed the UK’s most important health and science reporters of the
issues of concern.

The SMC followed this up with several Roundups including comments from
large numbers of the UK’s top mental health researchers, all
generating continued media coverage.


This kind of agenda setting was also on display in our work around the
harassment and intimidation of researchers working on chronic fatigue
syndrome/ME.

The meeting organised by the SMC on this was the first of its kind and
brought the beleaguered researchers together with representatives of
funding agencies, the police, the GMC etc.

One of the results of that meeting was the decision of a number of
academics to go public on their situation with the support of the SMC
and their respective press officers .

The SMC engineered the coverage through working with the Today
programme on an exclusive – a story that was planned over many weeks.


The result was huge with Today making the very best of their exclusive
with several different packages on the morning of release.

As expected the follow up was huge with almost every newspaper, Sunday
paper and influential magazine covering the subject in some way.

The results of that coverage have been mixed but include the following:

Many in the scientific community became aware of the situation having
previously been unaware

For some researchers the media coverage marked the end of their harassment.

For others it has continued

Across the board the researchers who were interviewed received a huge
amount of supportive emails from fellow scientists and from chronic
fatigue syndrome/ME patients and their families


Conclusions

A mental health research function has been established at the SMC and
has tackled a wide range of issues.

We work with a robust network of experts, press officers and
journalists that all influence our work.

Our proactive press work has been popular with journalists and experts
have benefited from our support to help them speak in the media.

However, demands for our time in this area now exceed the time available.

As a result the SMC will run a stakeholder event to plan a strategy
for the future which will mean this work can be focussed on the areas
that most need support from the mental health press officer.

Action point: the SMC will run a stakeholder event to plan strategy
for future work


http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

Review of the first three years of the mental health research function
at the Science Media Centre

Science Media Centre is a registered charity (no. 1140827) and a
company limited by guarantee (no. 7560997). Registered in England and
Wales. Registered address: 215 Euston Road, London, NW1 2BE.

Review of the first three years of the mental health research function
at the Science Media Centre February 2013

Dr Claire Bithell

Head of Mental Health

Science Media Centre

 

[Bob]

Professor Holgate appears to be being rather naive about the strategies of the psychosocial school, and about the agenda and tactics of the Science Media Centre; in particular the SMC orchestrated media blitz alleging harassment and death threats against 'scientists'.

I seriously doubt that Prof. Holgate is naive. I really don't see how any biomedical scientist with years of involvement in the world of ME could possibly be. Bear in mind that he's also very senior as a scientist and that you don't get to that level by being politically ignorant or naive.

I think anyone outside our community would be absolutely astonished to find out exactly what goes on. (Apart perhaps from people like Keith Laws and James Coyne, but I think they don't even know the half of it.) And I wouldn't be surprised if Stephen Holgate, however worldly-wise he is, was not expecting the degree of manipulation and scheming (to put it mildly) that we are aware of. I honestly think that no one outside our community would believe what goes on unless they saw it for themselves. Perhaps Stephen Holgate will undergo a steep learning curve.

 

[Wildcat]

.
The tactics of Entryism.... which means moving into an organisation with the intention of taking over.

This article (just posted by dxrevisionwatch) by George Monbiot raises serious concerns about the unaccountable clique that has commandeered science reporting in Britian. The article concentrates on the Science Media Centre's sister org called 'Sense about Science'. But the SMC, SAS and the Institute of ideas are somewhat linked. Claire Fox, Fiona's sister is the Director of the Institute of ideas.




http://www.theguardian.com/education/2003/dec/09/highereducation.uk2
Invasion of the entryists
How did a cultish political network become the public face of the scientific establishment?

George Monbiot, Tuesday 9 December 2003.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




.

 

[Bob]

I think that people on this (and other) threads have given cogent reasons to distrust the Collaborate and to critique its structure, its Charter, and its performance thus far. It would not be reasonable to dismiss such concerns as "blind pessimism".

I think what sometimes frustrates some of us, is persistent negativity about community efforts, even when we see people trying to do the right thing for the right reasons. Persistent negativity can be difficult to handle when we are trying to keep our hopes up, and trying to engage constructively with decent elements of our community. We all have different ways of expressing ourselves, and I think nearly every style of advocacy can be helpful, and I think most people have a valuable part to play in our community. But, for me personally, constructive criticism is a lot easier to deal with than outright negativity, when discussing projects that are nuanced and complex. Negativity can seem like a dead end, and, as a patient, I want/need to see opportunities, progress and hope even if that makes me overly optimistic at times.

 

[Dolphin]

In case it has not been mentioned, the references to Support4rs* within the materials obtained by Jane Colby:

*Source: Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC), Page 3, (quote 18) under Action Points.

This is the website for support4rs:

http://www.support4rs.com/

"support4rs - The Government's Preferred Supplier...

... contracted to provide protective services with regard to Animal Rights Extremism to research councils, public research institutions and medical research charities. Consequently we work collaboratively with the leading research locations throughout the UK drawing upon the experience of each for the benefit of all."

We assess the current intention and capability of Animal Rights Extremist groups and what risk they present to members of the biomedical research sector.

We assist with the compilation and maintenance of management plans and procedures needed when responding to any animal rights related incidents or threats.

We advise stakeholders in respect of proportionate responses to incidents and the balance between lawful protest and unlawful activity.​

I echo what others have said - citing the tabling of Parliamentary Questions and House of Lords Debates under "harassment" is very disturbing.*

*Source: Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC), Page 3, under Harassment.

Here's the context:

'Support4rs - Work with Peter White and Simon Wessely to develop resources for dealing with harassment'

 

[Sasha]

I think anyone outside our community would be absolutely astonished to find out exactly what goes on. (Apart perhaps from people like Keith Laws and James Coyne, but I think they don't even know the half of it.) And I wouldn't be surprised if Stephen Holgate, however worldly-wise he is, was not expecting the degree of manipulation and scheming (to put it mildly) that we are aware of. I honestly think that no one outside our community would believe what goes on unless they saw it for themselves. Perhaps Stephen Holgate will undergo a steep learning curve.

I don't think he is outside our community. He's come to it in relatively recent years but that's years, not weeks or days and I'm sure he's had plenty of contact with people in our campaigning charities who themselves have been fighting exactly the kind of manipulation and scheming that you're referring to.

Science at its worst - and I think all senior scientists will have seen it at its worst - is a cesspit of egos, greed, power-seeking, status-seeking, and machiavellian politics. I think this is particularly true of medicine, which seems to attract a weird mix of humanitarians who are in it to help people, and sociopaths who want power and money. At their best, science and medicine are something else entirely, of course, but I really think we do Prof. Holgate a disservice if we assume he's not aware of what goes on.

 

[Esther12]

One thing, re Sonya saying she'd 'go with the majority' - who is the majority? Do we even have a list of the people who have a vote on how we should be treated?

 

[Min]

I don't think he is outside our community. He's come to it in relatively recent years but that's years, not weeks or days and I'm sure he's had plenty of contact with people in our campaigning charities who themselves have been fighting exactly the kind of manipulation and scheming that you're referring to.

Science at its worst - and I think all senior scientists will have seen it at its worst - is a cesspit of egos, greed, power-seeking, status-seeking, and machiavellian politics. I think this is particularly true of medicine, which seems to attract a weird mix of humanitarians who are in it to help people, and sociopaths who want power and money. At their best, science and medicine are something else entirely, of course, but I really think we do Prof. Holgate a disservice if we assume he's not aware of what goes on.

I

We cannot think that the four charities who have chosen to join the Collaborative are unaware of exactly what is going on either, they have all been around a long time and AfME was was very involved in White's PACE trial. What a shame they did not choose instead to join with our other national charities in denouncing the current abuse and neglect of myalgic encephalomyelitis patients by two of the very doctors they are choosing to work with.

Nothing positive for patients has come of this year old Collaborative yet, and this document revealing the way it was set up is hardly grounds for us to rejoice..

 

[Sasha]

Yeah, I want to know this too. Since when does the propaganda unit for one party have a legit role in this sort of process/organisation?

Holgate better keep his wits and integrity about him.

There's no evidence at all that they have one. The BPS scientists push the harrassment agenda (just as our scientists push theirs) within the Collaborative.

Just been doing some digging and actually they had (or were, not sure if this is ongoing) an observer at the May 2013 meeting:

http://www.meassociation.org.uk/201...ry-of-executive-board-discussion-23-may-2013/

So not an active role - our charities seem to be in the majority on the executive board - but a very unwelcome presence.

 

[Wildcat]

.
No one (especially AFME on their Collaborative Page) mentioned that Profs Wessely and Chalder were involved with the CMRC, or Rona Moss Morris.
.


.


.

 

[Wildcat]

.
The Science Media Centre appear to have far more than merely an 'observer' role:

https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

(quote 18)
from Action Points
-
SMC – run FOI Act brainstorm
-
ALL – look for opportunities to publicise CFS/ME research and give background
information about the condition
-
Support4rs – work with Peter White and Simon Wessely to develop resources for dealing with harassment
-

SMC– run a press briefing on biosocial illness to improve public understanding.
Fiona Fox to get information from Trudie Chalder and Rona Ross-Morris.

.
Subsequent action by the UK CMRC can be seen in the context of these Action Points (above).
•
One SMC ‘strategy’ to reduce ‘harassment' was to “put minutes of meetings online.”
Following the 22nd May 2013 meeting of the Executive Board of the UK CMRC
Sonya Chowdhury emailed
“Hi all –please find attached the minutes of our meeting and a summary for public consumption.

I have deliberately made the summary detailed so that people don’t feel we’re only providing limited information
...In the future, I would suggest that the summary is approved by the Chair and Vice Chair so that they can go up
immediately after the meeting.”
(quote 19)

~~~~~~~~~~~~~~~~~~~~~~~~~~


SMC Director "Fiona Fox to get information from Trudie Chalder and Rona Moss Morris", indeed!


And as Secretariat, Sonia Chowdhury appears to be the author of the Collaborative meeting Summaries (in other words, what they want us to know, and not the inconvenient material of what they don't want us to know)
.

 

[Sean]

That don't look like observer status to me.

 

[Bob]

Nothing positive for patients has come of this year old Collaborative yet...

I'm not sure if I agree with that. At the upcoming meeting they are supposed to have quite a number of scientists attending, who are new to the field. And I think keynote speakers will be Julia Newton and Prof Lipkin. Prof Lipkin will be discussing immune abnormalities in ME/CFS patients, and his latest biomedical research. At the Stanford Symposium he stated that he's open-minded to the nature of CFS, because he wants to follow the evidence, except that he absolutely not open-minded to it being a psychosomatic illness (because he knows that it's not psychosomatic from his own research evidence.) (No doubt such a strong statement will be considered harassment!) Now that's exactly the sort of thing that we want presented to the conference. Lipkin is a world-class, highly respected scientist, and his mere presence is going to be impressive to most of those attending. And he will be listened to. He might even make it sound like an exciting field of research to get involved with. He clearly finds it a rewarding field to work in. Also, of course, Julia Newton is exceptionally impressive.