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

[Valentijn]

That isn't what the SMC is for, surely. Can a case be made for abusing their position and subverting the work of the SMC? Who would one complain to?

The SMC is a lobbying group. They try to tie its creation in with a House of Lords report, but they are very much independent of government involvement. They do get some government funding, but they are also funded by corporations and other private and commercial interests.

It's perverse that the the UK government funds any lobbying group.

 

[Chrisb]

It's perverse that the the UK government funds any lobbying group.

I forget the details but was there not some influence from David Sainsbury in his days as science minister. Some will remember that he was a labour party donor allegedly granted a life peerage to enable him to take up this post. Many considered it to be entirely inappropriate.

 

[Dx Revision Watch]

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

Annual Report & Accounts Year end 31 March 2014

http://www.sciencemediacentre.org/w...SMC-final-accounts-31-March-2014-UNsigned.pdf


Annual R & A Year end March 2015

http://apps.charitycommission.gov.uk/Accounts/Ends27\0001140827_AC_20150331_E_C.pdf

 

[Countrygirl]

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

Annual Report & Accounts Year end 31 March 2014

http://www.sciencemediacentre.org/w...SMC-final-accounts-31-March-2014-UNsigned.pdf


Annual R & A Year end March 2015

http://apps.charitycommission.gov.uk/Accounts/Ends27\0001140827_AC_20150331_E_C.pdf

The Trustees, who are also the directors for the purpose of company law, and who served during the period are: Dr P Cotgreave (Chair) Mr T Miller (Resigned 24 September 2014) Mr P D Greenish (Resigned 24 September 2014) Mr A J Denoon Dr H J Munn Mr P L M Davies (Treasurer) Mr J C Baker Mr M Sudbury (Appointed 23 January 2015) Professor Sir M Rawlins (Appointed 17 June 2014) Professor Sir S Wessely (Appointed 23 January 2015)

 

[Wildcat]

https://twitter.com/batteredoldbook/status/659803761322418177

Is the M.E community truly free to question the PACE trial? #CMRC2015. UK CFS ME Research Collaborative #pwme

Sorry, can't work out how to post images.

Image on the link. Its the ongoing stream of chat while th CMRC conference was going on. Request to Sonia Chowdhury to ask innocent reasonable question relating to PACE, "how do we move on from the PACE Trial?"

Sonia answered ...."happy to ask questions as long as they are not negative towards specific research"
.

 

[Dx Revision Watch]

So at the time of the Jane Colby FOI materials, SW was not a Trustee, but has been a Trustee since January 23, 2015.

 

[Dx Revision Watch]

Is the M.E community truly free to question the PACE trial? #CMRC2015. UK CFS ME Research Collaborative #pwme

Wildcat, as your image isn't displaying, I'm inserting one I prepared earlier

 

[Dx Revision Watch]

Wildcat.

On some sites and forums, if you post the URL for a specific Tweet, it will embed.

Otherwise, you need to be able to insert the URL for an image that is located on the internet or for example, in the media files of a blog. So what I usually do is make a screengrab, edit it, upload to one of my WordPress blog media libraries, then insert the URL and the forum post grabs the image from there.

You could use any site that enables you to upload an image file and insert the link to that, by clicking the image button on the post editor (it's the button that looks like a sun behind mountains), paste in the URL that points to your image and click "Insert".

 

[Daisymay]

http://meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf

The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction Professor Malcolm Hooper September 2013


This document is in 6 sections: Section 1 sets out the facts behind the Science Media Centre (SMC). Section 2 considers the link between the SMC and key players in the ME/CFS controversy (whose own links with the permanent health insurance industry cause senior Parliamentarians serious concern). Section 3 considers how the SMC is supporting and publicly promoting in the media certain mental health professionals who are acting in contravention of Department of Health policy. Section 4 provides evidence of the SMC’s campaign to discredit people with ME/CFS. Section 5 provides evidence of the SMC’s misrepresentation of the PACE trial results to the media. The Conclusion considers how the SMC can credibly claim to represent “science” when it ignores so much science

 

[TiredSam]

http://meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf

The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction Professor Malcolm Hooper September 2013


This document is in 6 sections: Section 1 sets out the facts behind the Science Media Centre (SMC). Section 2 considers the link between the SMC and key players in the ME/CFS controversy (whose own links with the permanent health insurance industry cause senior Parliamentarians serious concern). Section 3 considers how the SMC is supporting and publicly promoting in the media certain mental health professionals who are acting in contravention of Department of Health policy. Section 4 provides evidence of the SMC’s campaign to discredit people with ME/CFS. Section 5 provides evidence of the SMC’s misrepresentation of the PACE trial results to the media. The Conclusion considers how the SMC can credibly claim to represent “science” when it ignores so much science

Wow, that was written two years ago and nobody acted upon it?

Sorry to see David Spiegelhalter's name in the line-up of villains.

 

[Wildcat]

.
http://meactionuk.org.uk/The-SMC-and-its-campaign-against-MECFS.pdf
The Role of the Science Media Centre and the Insurance Industry in ME/CFS: the facts behind the fiction Professor Malcolm Hooper September 2013


"Wow, that was written two years ago and nobody acted upon it?"

Yes, ... the document has been out there that long.

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



Its wrong to dismiss the numerous vital and original documents published on the MEActionUK site since 1999, as some in the ME campaigning world are now doing. There were one or two misquotes. But the totality of vital information, references and analysis produced by Professor Hooper, and Margaret Williams, over so many years, formed the foundation of the ME community's knowlege and understanding of just about everything we are dealing with now in the UK ME world.

We would not have known about the Science Media Centre early on if not for Professor Hooper, and Margaret Williams. We would not have known about UNUM, Aylward and the DWP, years before most of the sick/disabled community, if not for Professor Hooper, and Margaret Williams. We would not have been years ahead of the game in understanding the tactics of UNUM, Aylward, Freud, the DWP etc if not for the regular documents on the MEAction UK site. So give them a break.

The other highly important sources of information and analysis we are indebted to for leading the way, years before this Phoenix Rising Forum started, before most Blogs, before FB, before Twitter ... are the One Click Group Jane Bryant and Angela Kennedy, and the MEAgenda site (Suzy Chapman, now Dx Revision Watch).

I am sure that I have left out lots of people who did important early original work, who we are also indebted to ...
Ciaran Farrell, Doug Fraser, Eileen Marshal, John Sayer, Gurli Bagnall (RIP) .... more names ..... Sorry, its late, I am wiped out. . Please add more to my list.

.



.

 

[Daisymay]

Please note, these links are about supposed death threats to Australian climate change scientists back in about 2011 and nothing to do with ME researchers but I am posting these links as there may, or may not be, an interesting parallel with the supposed ME/CFS death threats etc, I've no idea, but just a thought.

Through FOI requests and a report by the Australian Privacy Commissioner it was found that the supposed death threats weren't death threats after all and it appears the media were instrumental in blowing the whole story out of proportion.

Pathological exaggerators caught on “death threats”: How 11 rude emails became a media blitz
http://joannenova.com.au/2012/05/pa...eats-how-11-rude-emails-became-a-media-blitz/

Death Threats? Respect the science? Start with some evidence.
http://joannenova.com.au/2011/09/death-threats-respect-the-science/

Chubb: no death threats in emails
http://www.theaustralian.com.au/new...hreats-in-emails/story-e6frg8y6-1226370442926

Interestingly, I see there is an Australian SMC:
https://en.wikipedia.org/wiki/Australian_Science_Media_Centre
"Science Media Centres exist in other countries; Canada, UK, New Zealand, and Japan. These centres are independent of each other, but cooperate regularly."

 

[Woolie]

Interesting find, @Daisymay!

This one seems the strongest, as its written in a national paper (somewhat conservative in its views, but well respected):

Chubb: no death threats in emails
http://www.theaustralian.com.au/new...hreats-in-emails/story-e6frg8y6-1226370442926

Its a bit of a worry, though, making any link between us and persons with exceedingly strong views on climate change (I can't establish from the links exactly what the views of the threateners were, but I'd say strongly held and against the scientific establishment at the least).

 

[Daisymay]

Interesting find, @Daisymay[/USER

Its a bit of a worry, though, making any link between us and persons with exceedingly strong views on climate change (I can't establish from the links exactly what the views of the threateners were, but I'd say strongly held and against the scientific establishment at the least).

Yes I know I quite agree.

 

[Sean]

I have no idea about the death threats themselves, but I certainly wouldn't take Jo Nova as a credible source for anything to do with climate change.

I would do everything we could to keep a healthy distance from climate change 'skeptics' like JN.

 

[Daisymay]

This isn't about climate change, rather to show how scientists have claimed they were sent death threats when they weren't and therefore might the same be true of the supposed death threats to UK psychiatrists and the ensuing media coverage?

But I do appreciate your point.

 

[Countrygirl]

I made the mistake of rereading Prof Hooper's article late last night in bed. It made me so angry and reignited the memories of all the very serious unjustices that the patient community has suffered over the decades that I couldn't sleep.

The SCM is closely associated with the online magazine “spiked” (www.spiked-online.com) which is militantly opposed to ME/CFS being accorded the status of an organic disorder; “spiked’s” health writer is a London GP, Dr Michael Fiztpatrick, renowned for his perverse and immoderate attacks on those with ME, and especially for his disparagement of the UK Chief Medical Officer’s comment on the 2002 Report on ME/CFS.

Speaking in support of those with ME/CFS at the launch of his Working Group’s Report, Professor Sir Liam Donaldson, then Chief Medical Officer, said on the record: “CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease” (BBC News/Health: 11th January 2002), only to be vilified by Fitzpatrick: “The CFS/ME compromise reflects a surrender of medical authority to irrationality. The scale of this capitulation is apparent when Professor Donaldson claims that CFS/ME should be classified together with conditions such as multiple sclerosis and motor neurone disease. The effectiveness of the ME lobby reflects its middle-class base” (spiked: Health: 17th January 2002: “ME: the making of a new disease”). Supporting Fitzpatrick, psychiatrist Professor Michael Sharpe (one of the PACE trial Principal Investigators who works for the permanent health insurance industry and so has a vested interest in categorising ME/CFS as a behavioural disorder, as “functional” disorders are excluded from benefit payment) said in the BMJ that doctors would not accept a particular strategy just because the CMO’s report recommended it (BMJ:2002:324:131). Psychiatrist (now Professor Sir) Simon Wessely, Founder Member of the SMC and listed as a member of its Scientific Advisory Panel (after whom the “Wessely School” is named: Hansard: Lords: 9th December 1998:1013), is also associated with “spiked”. Wessely is Professor of Epidemiological and Liaison Psychiatry at King’s College, London and of The Institute of Psychiatry (which is part of the South London and Maudsley NHS Foundation Trust; the Maudsley Charity funds the SMC). In its previous Notes for Editors, “spiked” said that Professor Wessely was available for comment or interview and could be contacted through Sandy Starr at “spiked” (0207-

It will be recalled that Professor Sir Simon Wessely is a Founder Member of the SMC and a member of the SMC’s Scientific Advisory Panel (and listed as such in their literature).

It can readily be shown that Wessely has a proven track record of denying the existence of chronic disorders such as ME/CFS which might cost the insurance industry a considerable amount of money, a stance that sits squarely with the SMC’s raison d’etre and which brooks no challenge to the insurance industry’s agenda: neither biomedical scientists, certainly not the public, and emphatically not patients, must be permitted to raise any doubts about ME/CFS being a behavioural disorder; if they do, they must be publicly ridiculed and discredited not only in the media but also in medical journals.

Any dissenting evidence must be dismissed as “biased”, as was the case with the 2007 NICE Guideline on CFS: when irrefutable evidence of the organic nature of ME/CFS was submitted to NICE, the Guideline Development Group (advised by the Wessely School) deemed it to be of little value and it was discounted (J Inf 2007:55:6:569-571). Indeed, the GDG were specifically instructed not to consider the totality of the evidence about ME/CFS. In accordance with the dismissal of all evidence that challenges the Wessely School’s view about ME/CFS, the SMC website carries an article “A Collapse of Respect of Authority or Expertise” which claims that whilst a minority of those consulted: “saw the growth of public questioning of scientific expertise as a largely positive development….a larger group of those consulted feel that the declining trust in and respect for scientists is a worrying development…and an area of concern. Professor Simon Wessely echoed the views of many when he said: ‘The current trend towards equating all sources of knowledge as of equal value is very dangerous. We need to defend scientific expertise as a basis for sound policy decisions’ ”.

These psychiatrists’ views have often been legitimately challenged so, apparently in order to strengthen their own position, they resort to claiming in the media that they have been “harassed” by a “hate campaign” run by the ME/CFS community. This has afforded the SMC the opportunity to exploit the situation, to the significant detriment of ME/CFS sufferers

Section 4: The SMC’s campaign against ME/CFS patients On its own admission, the SMC works closely with the Medical Research Council’s PACE trial Investigators and with the MRC itself, so it is worth noting the involvement of the MRC in the campaign to discredit people suffering from ME/CFS. The PACE trial statistician, Dr Tony Johnson, was until recently Deputy Director of the MRC’s Biostatistical Unit (BSU), and the “Statistician Clinical Trials Unit (CTU) Division of Psychological Medicine Ref No: 06/A09” was described as the “Johnson_Wessely_Job” (07/07/2006) at The Institute of Psychiatry, so what Johnson wrote about people with ME/CFS during the life of the PACE trial was noted with concern, especially as his co-authors were the three Principal Investigators (PIs) of the PACE trial, Professors Peter White, Michael Sharpe and Trudie Chalder, all of whom are supported by the SMC and all of whom work for the permanent health insurance industry. The Medical Research Council’s BSU Quinquennial Review of 2006 was placed on the MRC’s website and it said: “Our influence on policy-makers has largely been indirect, through scientists' work on advisory committees, in leading editorials, in personal correspondence with Ministers, Chairs or Chief Executives (such as of Healthcare Commission or NICE), Chief Medical Officers and Chief Scientific Advisers, or through public dissemination when the media picks up on statistical or public health issues that our publications have highlighted”. Hence the influence of the MRC at the highest levels is far-reaching

The international ME community noted that the timing of the well-orchestrated 2011 campaign of media coverage about the alleged threats to Wessely coincided with the publication of the International Consensus Criteria for diagnosing ME that was compiled by 26 researchers from 13 countries (Journal of Internal Medicine October 2011:270:4:327-338; first published online on 22nd August 2011). The sound biomedical evidence upon which those criteria are based completely vitiates the UK psychiatrists’ belief that it a behavioural disorder.

Following the SMC’s expose on the BBC’s Today programme that was put on the BBC’s website, the SMC ensured that the campaign accusing sick people of harassing those who wanted to help them went global via the News Feed Centre, being reported not only in UK nationals such as The Guardian and science journals including The Scientist and the Medical Express, but by AFP; The Straits Times – Singapore English Language Newspaper; SKN Vibes – St Kitts, Windward Islands; Arabs Today; in Pakistan; in India; in New Zealand; the USA; Bulgaria and in Nigeria Daily News, amongst many others.

Unaware at the time of the SMC’s role in that campaign, it was noted that there are many who hold that it is Wessely et al who are orchestrating a media campaign against patients with ME, not the other way round.

Disregarding the substantial evidence that Wessely is wrong about ME/CFS, the SMC’s Review of its first three years’ work on mental health continued: “The SMC jointly nominated Simon Wessely for the inaugural Sense 11 about Science John Maddox Prize for Standing up for Science for his courage and bravery in speaking out on CFS in the face of intimidation, which Simon won”. The SMC said about the John Maddox prize: “The prize rewards individuals who have promoted sound science and evidence on a matter of public interest, with an emphasis on those who have faced difficulty or opposition in doing so”. Given that Wessely’s belief that ME is a somatoform disorder has been comprehensively invalidated by the scientific evidence, for him to have received a prize for “standing up for science” for his work on ME/CFS has resulted in widespread dismay, not least because it does not accord with the Declaration of Helsinki: section B11 requires that “Medical research involving human subjects must conform to generally accepted scientific principles (and) be based on a thorough knowledge of the scientific literature”, but Wessely’s work ignores the existing scientific literature. There is abundant evidence that Wessely’s views and influence have necessitated extraordinary courage and determination, not by Wessely, but by ME patients in the face of his orchestrated opposition to the acceptance of their disease as a legitimate medical entity. Given the abundance of the biomedical evidence-base that exists which proves beyond any doubt that Simon Wessely’s beliefs about ME/CFS are wrong, it is incomprehensible how any scientist or scientific organistaion could support the award of the John Maddox Prize to him,

“ 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”. (For factual information about the Tom Feilden “expose” on 29th July 2011 that was orchestrated by the SMC, see: http://www.meactionuk.org.uk/Wesselys-Words-Revisited.htm 30th July 2011).

Rereading this has highlighted one memory for me though.........well, many of them. A few of you on here were involved in Mark Purdey's campaign a couple of decades ago, although I don't know if anyone here became so closely involved that you did personal witness the very serious harassment that Mark and the few immediately surrounding him suffered.

When I first became involved when so many in my area developed ME after dipping their sheep in
organophosphates, I am ashamed to say that in the beginning during the conversations I had with Mark when he joined us as an ME Association group I thought the stories of harassment (really serious stuff) that he related to me were probably a product of his imagination as I just couldn't believe at the time that people with ME and/or organophosphate poisoning could be physically targetted in this manner. This was happening when the SMC was just a glint in Wessely's eye.

I became involved and organised and presented Mark's talks in the city and witnessed and personally experienced the harassment from certain vested interests. Certain new people poised as friends but then worked to discredit us. At one very well attended ME meeting in the old city hospital (there were no seats left and many others had to be added) we experienced serious harassment, which I won't repeat on here as it is public, but one minor story I can share. One individual attempted to discredit us publically after the meeting. He contacted the Daily Telegraph to get them to run a story to say that we had administered atropine by injection (an antidote to OP poisoning) at the meeting . Complete rubbish of course, but it could entirely discredit us, close us down and discredit the ME Association.

If you are interested in how serious the harassment became to silence Mark and us you could refer to a full two-page article on the story printed in The Guardian. (Frustratingly, I have just been trying to lay my hand on it. to give you the date. I made the big mistake of partly resorting my study a couple of weeks ago, and now I can't lay my hands on it. It is there somewere.) To cut a long story short, in the end, I received a very threatening and worrying phone call demanding that our ME group stop arranging public meetings promoting any link between ME and organophosphates. I was very ill and vulnerable and an elderly relative was also frightened, so I withdrew. All the folk who had their lives ruined by organophosphates and ME have now disappeared into a well of silence or have taken their own lives. The strategy worked.

Reading Prof Hooper's article last night made me wonder if the establishment of the SMC has replaced the need for the antics we all suffered back in the 90s. They have such a stranglehold on the information that is presented to the public that it is no longer necessary for the very brave people such as Mark who challenge such powerful vested interests as chemical and insurance companies to suffer such harassment as Wessely and co (remember Camelford?) can strangle such opposition at birth via the SMC???

 

[Chrisb]

@Countrygirl
Now I understand why you took seriously the talk of D Notices as mentioned in an earlier post. And why you went to the trouble of researching them.

It is always interesting to read how the powerful expect standards of others which they do not expect of themselves. I am sure there must be a word for that. Probably several.

One thing about this illness is that it gives one a lot of time to think, and I have sometimes wondered whether the enlargement from ME to CFS would have enabled a group of cases to be hidden in full view. Then I tell myself to stop the conspiracy theories. I suppose there would have to be researchers who had signed the Official Secrets Act to deal with that. I don't suppose we will ever know.

 

[lansbergen]

A few of you on here were involved in Mark Purdey's campaign a couple of decades ago, although I don't know if anyone here became so closely involved that you did personal witness the very serious harassment that Mark and the few immediately surrounding him suffered.

I followed his story in the BSE context but was not involved in the ME events.

 

[SOC]

This isn't about climate change, rather to show how scientists have claimed they were sent death threats when they weren't and therefore might the same be true of the supposed death threats to UK psychiatrists and the ensuing media coverage?

But I do appreciate your point.

A matter of curiosity -- When did SW and company start in with the exaggerated claims of death threats? Was it their own strategy, or might they have learned from the situation Daisymay has brought to our attention that this technique can be effective in discrediting and gagging your opponents (if you are the one in position of power, that is)?