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Science Media Centre: Anniversay Brochure: "Threats of Persecution"

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Tempting to ignore I suppose. Hopefully, we won't be going over the same ground again. Still, always important to read what is being said 'out there' about those whose actions threaten to tarnish us all with the same brush.

Taken from the Anniversary Brochure of the Science Media Centre. Apparently, the SMC are ten years old - hmm... Be grateful if someone could confirm the date that this was actually published. It was posted on the ME Association Facebook page by Dr Shepherd yesterday - 30 November 2012.

It is I think a review of the past 10 years and the year in question (below) is of course 2011 and the appearance on BBC Radio 4 by Dr Crawley, and about the 'death threats' - as the whole sorry saga has now been dubbed. Hopefully, this can be left behind us now. It is nearly Xmas - I'm allowed to hope :)

http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf

Pages 16-17

Threats of persecution

There are still many illnesses in which the cause is unknown or disputed - and this usually acts as a spur to further research aimed at achieving a more complete understanding. But there are a handful of disorders in which some patients become convinced that they already know the cause: so deeply convinced that alternative explanations are seen not merely as false but as put forward with malicious intent.

Researchers who are investigating or merely discussing these alternatives, they believe, must at all costs be silenced. And “all costs”, in this context, can mean taking action against them as individuals.

Dr Esther Crawley is a senior lecturer at the University of Bristol and a consultant paediatrician with a special interest in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). She’s based at the Royal National Hospital for Rheumatic Diseases in Bath where she runs a clinical service for children.

CFS/ME is one of those illnesses plagued by violently to irrational prejudices about cause and cure. Here Dr Crawley describes her predicament, and how she overcame it with the help of the SMC and the science reporter for BBC Radio 4’s Today programme, Tom Feilden.

Dr Esther Crawley

"For years we had felt, I think, like victims. I was quite new to it all but even I had started to wonder whether I should give up. I was doing research that children and families wanted: investigating treatments for CFS/ME; trying to find how common it was in children; and exploring possible risk factors. Yet I was being subjected to an unrelenting attack from a minority of patients, none of whom I had ever met.

It had started with emails, letters and phone calls. Some were benign; they merely suggested I change research projects. Some were more malevolent. Some were threatening. I switched phone numbers, filed the letters and the emails and talked to the police. Then the attack became a little more co-ordinated. There were frequent and repetitive Freedom of Information (FOI) requests. A scan of blogs quickly showed where these had come from.

This was followed swiftly by complaints to the National Research Ethics Service and the General Medical Council. The complaints again looked identical, were based on defamatory allegations and were clearly part of a coordinated attack. The allegations of affairs, money making and conspiracy made my life seem much more interesting than it really was (or is). The Bristol University authorities were shocked but supportive. The allegations made my husband laugh.

Around this time, I started to talk to the SMC about why they were finding it hard to work with people in this field. This, I learned, was one of a handful of areas in which researchers did not engage with the SMC out of a fear of being persecuted.

The damaging consequences of this reluctance were widespread. Nationally we had developed a culture of not talking about CFS/ME research, not engaging in studies with the potential to cause problems, and not commenting on other peoples’ research. Journalists that dared to report or discuss CFS/ME were inundated with complaints, and many refused to write about it again. Maybe it was time to do something different.

The SMC organised a meeting so we could discuss what to do to protect researchers. Those who had been subject to abuse met with press officers, representatives from the GMC and, importantly, police who had dealt with the animal rights campaign. This transformed my view of what had been going on. I had thought those attacking us were “activists”; the police explained they were “extremists”.

"The Science Media Centre is a most extraordinary thing: it is highly valued by scientists and journalists alike. It somehow allows the realities and uncertainties of research to be communicated in even the most controversial of topics while fitting in with the needs of the media machine. Working with the Science Media Centre is always positive and comes with the added benefit that you know science correspondents will always sit up and take note of anything coming from the SMC!." Jonathan Wood, Press Officer, University of Oxford

The tactics of using threats and abuse, and then trying to prevent research using FOIs and reviews, had all been seen before. We discussed whether somebody at the top of one of the leading charities might be behind much of it, relying on others with a lower profile to take the abusive actions. We were told that we needed to make better use of the law and consider using the press in our favour - as had researchers harried by animal rights extremists.

“Let the public know what you are trying to do and what is happening to you,” we were told. “Let the public decide.”

A few weeks later the SMC emailed to ask whether any of us would be interested in talking publicly about what had happened. There was a debate among those who had been harassed over whether it was the right thing to do. The arguments against were that it would give more air space to those causing the abuse (the BBC traditionally reports both sides), and might end up doing as much harm as good.

Personally I felt I had nothing to lose. I also felt that the children and the families for whom I was doing research deserved to know what was happening. The SMC suggested that we talk to the BBC’s science
reporter Tom Feilden. It is hard to trust again when you’ve been hurt, but the SMC was insistent that he was one “of the best”. They would trust him with anything, they said. He was a fair and responsible reporter.

Tom visited for about an hour, listened to the research we were doing and recorded an interview. The piece was broadcast on the Today programme, and the response was unbelievable. I took part in quite a few interviews that day, and have done since. I was also inundated with letters, emails and phone calls from patients with CFS/ME all over the world asking me to continue and not “give up”.

The malicious, they pointed out, are in a minority. The abuse has stopped completely. I never read the
activists’ blogs, but friends who did told me that they claimed to be “confused” and “upset” - possibly because their role had been switched from victim to abuser. “We never thought we were doing any harm...”"

Tom Feilden
"Although I knew that chronic fatigue syndrome was a controversial illness that provoked strong
opinions, I wasn’t aware that the health care professionals and scientific researchers working on
the problem were the ones at the eye of the storm. Nor was I prepared for the level of vitriolic abuse or the campaign of intimidation that was being waged against them.

The original idea for the story came from my editor, Ceri Thomas. At an SMC meeting he’d heard something about doctors being targeted at conferences and on the internet, and thought it might be worth looking into. I contacted the Centre. It was clear from the reaction to my call that we had a big story.

Yes, they did know about it and, yes, it was a serious problem. But the scientists and medics being targeted were worried about what might happen if they talked to the media. If they spoke out, wouldn’t that draw more attention to them, inviting more abuse to be heaped on their shoulders, and exacerbating the problem?

Also, weren’t the media just interested in a good punch up? On the other hand there was a clear understanding at the SMC that this was an important issue that needed to be aired. Could I leave it with them - at least for a while? Reluctantly I agreed.

But I set about researching the issue on the internet. At its heart seemed to be the classification of CFS as a psychiatric condition. The assumption underpinning much of the most vociferous comment from a small cabal of campaigners seemed to be that this amounted to an attempt to dismiss sufferers as either mad or malingerers. The real cause was an, as yet, undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy.

Armed with more information, and the names of some of the doctors and academics that had popped up on websites and in internet chat rooms, I went back to the SMC. It was clear that they had been busy too, and had come up with a number of researchers who were willing to speak out. Did I want to go to the Centre for Child and Adolescent Health in Bristol and meet Esther Crawley?

As well as offering clinical treatments for CFS sufferers, Dr Crawley is involved in research into the causes of the condition and its socio-economic impact. She’s a well respected academic working in a field crying out for further analysis, and one whose results are regularly published in the peer reviewed scientific literature.

But it was when she got involved in a study to assess the efficacy of one particular treatment, a therapy known as the lightning process, that the trouble started. Vilified on internet websites Dr Crawley was subjected to a vicious email hate campaign, and was also the subject of a series of formal complaints alleging both personal and professional misconduct.

None of the complaints - to the University, the ethics committees overseeing her research, or the GMC - was upheld, but the campaign did cause Esther Crawley to question whether it was worth continuing her work on CFS. After all, there are plenty of other important areas of medical research that desperately need to be addressed and don’t attract this level of abuse and intimidation.

We could, and would, have run the story without the help of the SMC. But it would have been without the
personal insights or reflections of those at the sharp end of the controversy. It was the SMC that had persuaded, supported and prepared the scientists to speak out on Today. Without this we would have been on the outside looking in, and the story would have been the lesser for it."

Spacing's are my own.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Responding to the SMC is the primary goal of one of my blogs early next year. Directly attacking them is not impossible, but it is difficult. There are better ways. Essentially we need to compete with them, and do it more credibly, by establishing a neuroimmune (or similar) website for PR by biomedical researchers and advocacy organizations.

However as a counter, I am also considering a satirical SMC site. What this does is take every SMC release relating to neuroimmune disease, post a link to the real one, then rewrite it so its factual ... I mean strictly factual. I am considering something similar in response to the CDC as well. Maybe call it Science Spin Corrected ?

Bye, Alex

PS Just to clarify when I wrote "a website for PR" I meant press release material and public relations material, not Phoenix Rising.
 

Enid

Senior Member
Messages
3,309
Location
UK
I don't know the ins and outs of this except that she must have been aligned with or promoting "therapies" to do with psychological interventions with profound implications for holding up biomedical research. So no sympathies and the SMC appear here as willing trouble makers. The WHOLE history is needed.
 

Shell

Senior Member
Messages
477
Location
England
FOIs wouldn't be done if the information was already freely available. Hiding things and being slippery is bound to lead to mistrust.
But getting angry with people in power is always going to back fire. Reasonable and steady response is the only way.
When fellow home educators and I were fighting Ed Balls attack on our intrinsic family rights we used FOIs and got statititions on board to show where Balls and his mate Badman were telling full on porkies. It meant that MPs and Home Ed spokespeople had good solid facts to refute the stuff Badman and Balls were saying.
We soon learned that individual families could not fight this. We had to get behind big organisations like Education Otherwise. This, for me at least. wasn't ideal; but it had to be that way because there's no point trying to bypass the system.
Despite all this however, I am sorry to say the only reason we won was because the General Election happened.
I learned then that we don't live in anything that resembles a just democracy. The same goes for health I am sure.

I bet it'll be the same for ME and it's relative diseases. We will need to get behind the big organisations that are genuine, even if like EO they aren't perfect, and have people who are very healthy and good with precise language to fight the front lines for us.
One Home Ed spokes woman left me with my head in my hands at a parliamentary thing because she fumbled so many answers. Having the truth on your side is useless if you can't articulate it.
We need the serpent and doves approach.
 
Messages
95
"The tactics of using threats and abuse, and then trying
to prevent research using FOIs and reviews, had all been
seen before. We discussed whether somebody at the top
Threats of persecution
of one of the leading charities might be behind much of it,
relying on others with a lower profile to take the abusive
actions. We were told that we needed to make better use
of the law and consider using the press in our favour - as
had researchers harried by animal rights extremists. “Let
the public know what you are trying to do and what is
happening to you,” we were told. “Let the public decide.”

This paragraph here is very clever. My instinct tells me that certain...psychiatrists are keen to make synonymous, the legitimate actions of those are effectively refuting the psychosomatic model of ME/CFS and the erroneous treatments based on it, with the abusive behaviour of the, as ever, unidentified militants.

This kind of open speculation about ME charities (one of the leading ones no less), for me, is a pretty dangerous thing to say. Though since it abandons the moral high ground for tabloid conjecture, it's the type of thing that might ultimately backfire.

But take this as an example of what we're dealing with here, it's a combination of subtle misdirection, conflation and it is absolutely designed to antagonise people into further irrational statements. Naivety is not an option in the face of such deft media management.

They are practically begging for people to come at them head on, and right now I just do not think it is the answer.

Incidentally, I've no doubt the research prevention refers to the widespread rejection of pernicious rubbish like trialling the Lightning Process on kids.
 

Enid

Senior Member
Messages
3,309
Location
UK
I wonder if many people read the SMC Anniversary Brochure - sounds like an in-house pat on the back - I would not engage with the Media, the sheer unpleasantness of so many over the last year or so with implications for all ME sufferers says it all.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
What we might consider doing is asking very pointed questions. As Shell stated, why are they holding back information? We should not be making accusations, we should be asking, repeatedly, "Why is this information not available to researchers and the public so the science can be advanced?" and "What is gained by keeping this information hidden? Its to the interest of everyone, including the advancement of science, to make this information public. FOI requests are necessary only when information is hidden." More importantly "Why does the SMC appear to be promoting the view that science should be kept hidden from the public? If this view is wrong, then please support researchers, patients and advocates in their requests to make science transparent and accountable."

Yes Stukindawski, they are conflating the advocate community with everything with negative overtones they can get away with. Its a subtle way of mudslinging. They subtly infer we are militants, mentally unbalanced, extreme activists, and even our charities are run by suspect shadowy figures. Beware children, snarks and bandersnatch be about!

Bye, Alex
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
But there are a handful of disorders in which some patients become convinced that they already know the cause

ME/CFS patients who are convinced they know the cause of this illness are far and few between.

Researchers who are investigating or merely discussing these alternatives, they believe, must at all costs be silenced.

Umm very interesting statement as there is only one field of research I think which bothers most ME/CFS patients and that is the psych field (only cause so much ME/CFS funding has gone into that at the expense of all the other fields of ME/CFS). With the SMC spin here, they've "purposely" not mentioned its the psych field of therapy they are talking about, which ME/CFS patients oppose (cause it just dont help most of us much at all). They certainly must be aware its only that kind of research which is upsetting many ME/CFS patients.

ME/CFS patients are generally happy for research into all the other fields or research (but just fed up with hearing about money being wasted going into research which isnt helping us when the money could be being put into areas which may end up helping us).

Patients would not be trying to invoke FOI, if the research was not being twisted in biased ways all over the place by some researchers. There is a huge need for transparent research esp in this field where studies sometimes leave out the drop out rates and how many were actually made worst etc etc ending up making studies very misleading. The fact that researchers are ending up feeling harrassed by the FOI shows that something is going wrong. With honest not being spun in a certain way research, there should be no need to be hiding research info and facts which came up doing a study.

Im so glad they've been told to report and prosecute any harrassing and making threats against researchers etc. Its quite unfortunate thou that we all have been tarried with the same brush even thou these aggressive ones were in a minority.

The SMC.. interesting how they've managed to tarry our ME/CFS orgs (and "may" get away with doing that) orgs which had nothing to do at all with a few aggressive ME/CFS people. If they are going to try to imply publically certain orgs arranged it.. they should publically name the orgs. and have them investigated rather then tarry our orgs (and allow the general public to make up their minds about them). Maybe the orgs could sue for slander due to the SMCs implying in such a way they are responsible, which puts ALL the individual orgs in a negative light to the general public. (I dont think things are going to change much until some law suits get thrown around to correct what is going on and us and our orgs being put in bad light just cause of a few people). It IS slander against our orgs.
 

SOC

Senior Member
Messages
7,849
Have we yet seen any actual evidence of this pervasive abuse these people keep talking about?

I keep hearing their claims of persecution, but I have yet to see any substantial evidence of actual threatening letters or emails. The one bit of genuine communication I did see was admittedly ill-advised, but I wouldn't have called it threatening.

Let me be clear that I completely condemn the "activist" technique of getting aggressive or insulting with researchers. I think it only hurts our cause. That is not my issue. I'm more concerned about the fact that the media is reporting the hearsay without any evidence of the truth of the claims.

I just think it's odd that it seems to be only the Brit "ME/CFS experts" who are vociferously complaining about how horribly abused they are. There are plenty of superb ME/CFS researchers in the US, Canada, and Australia, for example, who do not seem to be having this problem with "abusive patients". I wonder if Crawley, Wessely, and the rest of the crew ever wonder why that might be. I know I do. ;)
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
Hi SOC, I don't doubt they (for now I mean psychiatrists) receive some abusive communications. However I think most psychiatrists would receive at least some from their patients, its the nature of the industry. However, if having received a few abusive emails, letters etc., you then inflate the issues to the point it becomes a political propaganda piece, that is a whole other issue. Also I suspect they exaggerate the level of threat in such communications.

Why is it reasonable to think they might be exaggerating the whole issue? Because so many times other claims have been exaggerated. So we see a pattern. That might be a trap of perception though: they exaggerate a lot, so they must be exaggerating this time.

However my best guess is that if there are real "threats" they are anonymous. So they might be guessing as to who is making them. If I had to put make a wild guess, pure speculation, I would say either healthy family members of those with ME or those with ME who have been abused or let down; or people in the military with GWI or their friends or family.

I have no doubt some of them have received some communications along the lines of "you will pay" which has been pointed out is an OK thing for the Prime Minister David Cameron to say, but not for an ME patient to say. "Pay" can refer to legal/social/historical payback, it does not necessarily infer an intent for violence. For one thing if we can prove to the world that ME has biomedical cause X with diagnostic marker Y and biomedical treatment Z, they will indeed pay. They will lose clients, credibility, prestige, and standing in the community. They will also have to live with the fact they were totally wrong, or perpetually live in denial land where they are now. Possible ethical violations might then be investigated.

Now abusive or threatening communications with the SMC rather than psychiatrists treating or researching ME using CBT/GET may be a similar issue. They undoubtedly receive lots of crank communications as well as legitimate complaints. This might then lead to exaggerating the complaints, or conflating general complaints with ME related ones. Being a spin machine, the organization might also deliberately (via existing mechanisms) use complaints in its public relations. Without knowing the inner workings of the SMC its impossible to say for sure.

The SMC is under close scrutiny for its political roots as well, though I am not going to go into that here.

What can be said is that these complaints are all very vague. They are based on vague references, innuendo and comments. This is consistent, but does not prove, that its substantially spin/propaganda. That brings us to the problem of inferring intent and motivation. Without something like a Royal Commission or other formal investigation with wide sweeping powers, there is no way to prove any of this - though a whistleblower or internal documentation coming to light might help.

Bye, Alex
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I want to let everyone know that Science Media Centres have suddenly sprung to life in various countries around the world. I found out today that Australia got one 5 years ago, New Zealand now has one... Canada then did one http://www.sciencemediacentre.ca/sm..._content&view=article&id=77&Itemid=76&lang=en
Science has never been more pervasive in everyday life, yet seldom have so many people felt so unconnected to it. Meanwhile structural changes in the mass media mean there are fewer and fewer specialized medical and science journalists. The burden is falling instead on general assignment reporters, who mostly lack the expertise to present science in an engaging fashion.

Nor is the Internet the answer. Although easily accessible, much online information about science is either too complex, too one-dimensional or too biased to be helpful. Surveys by the U.S. National Science Foundation have shown that only one in five people actively seek out science information; many more will listen or read when it’s presented in the mass media.

In 2008, a small group of concerned journalists, researchers and public supporters of science decided the way to tackle this problem was primarily by providing help to general assignment reporters. Our proposed remedy is the Science Media Centre of Canada, patterned after centres already operating successfully in the U.K. and Australia.
The Science Media Centre of Canada will help journalists cover stories in which science plays an important part.
... and that has been followed by Japan setting up one http://smc-japan.org/eng/aboutus/info
In 2009, Japan's Research Institute of Science and Technology for Society (RISTEX) announced it would fund a three-year research and development project to establish the country's Science Media Centre (SMCJ).
. All these countries thou their SMCs are said to be independant..they also say they will be working with the other countries SMCs some.

Irronically one of the reasons these SMCs are being set up is to make medical articles more non biased. this is mentioned below in the Canadian SMC http://www.sciencemediacentre.ca/sm..._content&view=article&id=77&Itemid=76&lang=en

http://www.smc.org.au/archives/how-to-work-with-us/ (the Australian SMC) says many more on the way. (Id like to know who or what group is behind the sudden push for countries to have SMCs influencing the media. It's hard for me to believe that all these countries are just suddenly spontanously choosing to set these up without a push coming from somewhere)
SMC Global Network

There are now science media centres in five countries (UK, Australia, New Zealand, Canada, Japan) with others on the way (Denmark, China, Norway, Italy, the US and Pakistan). The centres collaborate extensively and are in the process of developing a global network that has the potential to become an international force for evidence-based science in the media

Scary.. are we about to be hit with world wide media control and influence over health issues. We all know what trouble the SMC in England has caused for ME/CFS
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Just to add to Tania's comment about the Australian SMC, Fiona Fox (of the UK SMC) is on the board of directors.

I am all for evidence based and reasoned science. However the term Zombie Science was coined to label the systematic abusive use of these processes to promote science that fits corporate or government interest. "Evidence" can be distorted, and often is. Its a huge problem.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Have we yet seen any actual evidence of this pervasive abuse these people keep talking about?

Are you saying they are just making this up to attack activists?

I don't think seeing the evidence is important, I have no doubt that they are being harassed.

And the key point about the harassment is that it isn't working to dissuade those psychiatrists. The result is further galvanisation of the psychiatrists.

What it really reflects though is their lack of engagement and connection with the CFS community. I mean researchers like Friedburg and Jason have done much the same research, but are respected by the community, because they are connected to the community. Crawley, Wessely etc. should ask themselves what they are doing differently.

I would rather see the harassment stop and a bridge being built on common ground (eg the need to increase research 10-20x). We need not fear more psych research because it isn't going to tell us anything we don't already know, it will not be any worse than anything already out there - eg only a minority of patients have diagnosable psychological disorders (anxiety, depression etc), GET and CBT don't actually improve activity levels, employment outcomes or neuropsychiatric testing (memory testing etc). Eg, they will have to admit that these therapies are a lot like adjunct therapies.
 

SOC

Senior Member
Messages
7,849
Are you saying they are just making this up to attack activists?

No, I'm suggesting that mild-moderate harassment may be being exaggerated to to the level of death threats.

I am also suggesting they may be exaggerating the number of "dangerous" communications they receive. This allows them to continue to portray the entire patient community as individuals with psychological issues when if the actual evidence were provided the public would realize that the "death threats" are only the usual level of lunatic fringe letters that exist in every area of life.

I will say again, I do not doubt that they receive some obnoxious communications. I have never supported the harassment of researchers regardless of what I think about the results of their work.
 
Messages
95
I don't doubt that certain claims are being exaggerated either. I also don't doubt they are being conflated with FOI requests because they reveal the kind of "pants down data" that is uncovering the PACE trial for the inconclusive waste of money it really is.

But, the press has decided these threats have happened as specified for the time being. So now more than ever it is important for all the rational opposition to psychosomatism in ME/CFS to affirm it's rejection of abusive type behaviour. It is something of a manditory PR hurdle. I would imagine when Wessely and friends contacted the various journalists about these stories they showed them whatever material they had. You can bet most journalists have a history of abusive contact with readers which, makes them receptive and sympathetic to this kind of complaint. So, pretty much, line one has to be, "I condemn any abusive behaviour". From my perspective I just do anyway, if SW and pals really are guilty of half the things people say they are, then 'righteous schadenfreude' is far too an expensive emotion in the pursuit of justice.

Every day with ME/CFS is a day lost, and it can make one feel impatient. But the short game is rarely the solution.
 

Jarod

Senior Member
Messages
784
Location
planet earth
From Dr Esther Crawley's allegations in post #1

The malicious, they pointed out, are in a minority. The abuse has stopped completely. I never read the
activists’ blogs, but friends who did told me that they claimed to be “confused” and “upset” - possibly because their role had been switched from victim to abuser.

Sounds like this stopped quite awhile ago. I think it is being used as leverage on avocates to apply a guilt trip and somehow comflating advocates with the actions of one/two people who may not even have CFS. They could have a different diagnosis like Gulf war syndrome, IBS, Cancer, Autism, MS, Lupus, Post traumatic stress, depression, who knows....and not even belong to any CFS forum or whatever.