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FOI requests reveal how media & parliament being fed stories of ME "harassment"

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3,263
@Countrygirl just posted this on another thread, but it deserves its own (there have been some previous threads on the topic, but none I can see that supply the full details).

Its a report from Tymes Trust, posted on their facebook page, which gives details of various emails and meeting minutes involving the UK Research Collaborative, that were released following a successful FOI request.

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

Highlights:

Some key notes from a meeting held in January 2013 (bolding is mine):
* ‘Coming out’ about the harassment has led to increased support for CFS/ME researchers, for example, from colleagues who were not aware of the situation. Harassment is most damaging in the form of vexatious FOIs.
* Complaints are also causing problems. Researchers are still dealing with complaints about them to the GMC.
* House of Lords Debates on CFS/ME can result in Parliamentary Questions which often require detailed responses
* ….. researchers are using strategies to reduce the impact of harassment and put the case for research into CFS/ME including:
- Learning about the FOI Act and using strategies to reduce time spent responding...
- Coming together as a research community to respond to criticisms...
- Working with trusted journalists to cover the problems associated with CFS/ME research
Action Points raised at the same meeting:
- 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.

Email from Esther Crawley to group, March 2014:
Esther Crawley email said:
“Stephen has obviously helped me a lot with this. Although we have mentioned the harassment, this is part of the previous story and is to help identify what is new and different at the moment…..”
in another email to Stephen Holgate and Peter White: “As you can see – I have sent the form to the executive. I mentioned the harassment bit in the email because early feedback suggested this might be a problem with the charities

Do people see evidence here of an organised campaign by a small but powerful and well-connected group to discredit patients who disagree with them?
 
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3,263
Other notable excerpts

Under their heading 'Harassment' (of researchers) one email lists:
* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions

In an email regarding establishing the composition of the UK Research Collaborative
Holgate email to Wessely said:
“Dear Simon, If you feel there is anything you can do to help in identifying researchers or in other ways, I would be very grateful...”
Wessely reply to Holgate said:
“First of all, it looks very good…… can’t see many ommissions (sic). I would probably sprinkle one or two scientists/researchers not particularly connected with CFS into the mix myself. Experimental psychologist perhaps, joe, do you know one?...
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
It sure looks like that group of researchers got together and planned how to introduce the notion of harassment, and then fed the flames.... Once the H word was out in the media, the actual form of the harassment no longer mattered. The media can be relied on to exaggerate, and so the campaign gathered momentum.

Which of course, leads one to consider whether those same researchers actually knew that their theory of ME was wrong from the outset..... Why else refer to the questions etc as vexatious??? Money and reputation on the line for them and financial considerations for the government, health system, insurance companies.... and the driving forces behind the whole thing?

I'm not usually one for conspiracy theories but you have to wonder..
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Under their heading 'Harassment' (of researchers) one email lists:
* Freedom of Information Requests
* Complaints to the GMC and various institutions
* Parliamentary Questions
None of those things are harassment. First they redefine our illness, then they redefine harassment. How on earth do they get away with it? Did no-one at any point say "hang on a minute, those things aren't harassment", and wonder why there were so many FOI requests, complaints, and parliamentary questions about these people and their antics?
 

biophile

Places I'd rather be.
Messages
8,977
Some more from the Science Media Centre proudly celebrating what they have done:

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

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

Remember all the articles framing a mysterious group of people as dangerous ME terrorists who are damaging science and making Wessely feel safer in war-zones? Now we know who orchestrated them.
 
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3,263
Which of course, leads one to consider whether those same researchers actually knew that their theory of ME was wrong from the outset..... Why else refer to the questions etc as vexatious??? Money and reputation on the line for them and financial considerations for the government, health system, insurance companies.... and the driving forces behind the whole thing?
I do think, @daisybell, that this document suggests these folks really believe in what they're touting. Which isn't to say they don't also have their eyes on the prize at the same time. To me, its kind of a doubly dangerous combination: self-interest and unflappable belief.
 
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3,263
biophile said:
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.....

Oh my lord, it would appear now that this whole thing was actually engineered by the researchers themselves, in cohouts with the SMC. I've been pretty calm up till now, but now I'm really angry!

What an outrageous thing to do - to smear a whole group of sick people, in order to silence them... and promote totally unsupported psychogenic bullshit!

The total irony is that they bang on about our fear of the "stigma" of mental health problems, but oh how they've used that very same "stigma" as a weapon to silence us. Do you really think any other group of patients could be so effectively and entirely tainted by these kinds of anecdotes? Let's see, AIDS activists?

:mad::mad::mad::mad:
 

user9876

Senior Member
Messages
4,556
Oh my lord, it would appear now that this whole thing was actually engineered by the researchers themselves, in cohouts with the SMC. I've been pretty calm up till now, but now I'm really angry!

What an outrageous thing to do - to smear a whole group of sick people, in order to silence them... and promote totally unsupported psychogenic bullshit!

The total irony is that they bang on about our fear of the "stigma" of mental health problems, but oh how they've used that very same "stigma" as a weapon to silence us. Do you really think any other group of patients could be so effectively and entirely tainted by these kinds of anecdotes? Let's see, AIDS activists?

:mad::mad::mad::mad:

I think ME patients are probably the most stigmatised group perhaps baring those with severe obesity.

I've always said that for a lot of the statements they make around harassment if you were to substitute in an alternative minority group it would be considered (or verging on) hate speech and unacceptable.
 

biophile

Places I'd rather be.
Messages
8,977
meeting minutes said:
Harassment is most damaging in the form of vexatious FOIs.

So after all the complaining about the abuse of researchers, "vexatious FOIs" are the worst?

PACE To David Tuller (30 October 2015) said:
We have only considered two of these many Freedom of Information requests as vexatious, although an Information Tribunal judge considered an earlier request was also vexatious (General Regulation Chamber, 2013).

Two or three "vexatious" requests over several years (according to them), oh the humanity!

Can science survive the onslaught?
 
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The SMC should not be on the inside of the CMRC. Early on it was officially stated by the CMRC that the SMC merely had 'an observer role' in the CMRC. Far from being mere observers, they seem to be embedded in it, and the SMC role goes way beyond observation.

By the way ... the FOI 'Behind the scenes CMRC' emails were first placed in the public sphere by Jane Colby in august 2014. There is a PR thread on it from that time.
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lansbergen

Senior Member
Messages
2,512
Oh my lord, it would appear now that this whole thing was actually engineered by the researchers themselves, in cohouts with the SMC. I've been pretty calm up till now, but now I'm really angry!

What an outrageous thing to do - to smear a whole group of sick people, in order to silence them... and promote totally unsupported psychogenic bullshit!

The total irony is that they bang on about our fear of the "stigma" of mental health problems, but oh how they've used that very same "stigma" as a weapon to silence us. Do you really think any other group of patients could be so effectively and entirely tainted by these kinds of anecdotes? Let's see, AIDS activists?

:mad::mad::mad::mad:

I am not surprised.

What can one expect in a country whose primeminister let his grandchild eat a hamburger on TV to show BSE is not a risk? Who do you think advised him to do that?
 

Chrisb

Senior Member
Messages
1,051
What can one expect in a country whose primeminister let his grandchild eat a hamburger on TV to show BSE is not a risk? Who do you think advised him to do that?

For the avoidance of doubt, that was not a prime minister. That was John Selwyn Gummer, now Baron Deben. He was the Agriculture Minister at the time.
 

user9876

Senior Member
Messages
4,556
So after all the complaining about the abuse of researchers, "vexatious FOIs" are the worst?



Two or three "vexatious" requests over several years (according to them), oh the humanity!

Can science survive the onslaught?

I think one of those was for numbers of data already published in a graph form.
 
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1,446
@Woolie ... Yes, damn right. patients are justifiably angry. It was all done/arranged in secret, behind our backs. It was ages before patients realised that Peter White was on the collaborative (he isn't anymore, they've got Alistair Miller now)!

White's presence was 'justified' by the CMRC as part of the 'Broad Church' and 'big unbrella' ethos of the CMRC that its members go on about..
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