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

[justinreilly]

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.

Bridges won't solve much. They have all the funding they want for their distorted studies. we do have something to fear from them continuing to be funded- it fuels their fake research and intentional distortions.

 

[Esther12]

When FOI requests are being classed as harassment, I think harassment should continue.

Look at how PACE was spun, is being spun, and data is being kept from patients: http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/

I don't think that there's any way to build bridges with those responsible unless they have apologised. The same is true for those who have sent death threats, or deliberately taken quotes misleadingly out of context. I don't trust or want to help either side, without there being some serious contrition.

 

[alex3619]

Yes Esther12, if they complain then we are doing something we should be, presuming what we are doing is legal. Do more.

 

[lastgasp]

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.

I don't agree with hate mail but I can't agree with this either.

The more CBT/GET is done by the incumbent school, the more the evidence base is seen to be strengthened. Does't matter whether CBT/GEt actually works or not, as the PACE fiasco shows, they'll damn well make sure all and sundry are convinced it does, and use the most brutal means to suppress legitimate rational criticism of it. This leads to a bigger consensus, more people jumping on that bandwagon, strengthening support for a completely erroneous "model", a model which diminishes research on e.g. exertional disease pathology, because no-one thinks it exists or is a priority if CBT/GET is seen as "effective". It was after all described as proof of concept.

This means less funding for non CBT/GET, pro- neuroimmune, virological , ME-friendly research. The MRC is a case in point, it's now joined up with astroturf charities and the SMC to ram mood disorders, pervasive laziness and all the rest down the research community/media/public's throats while reiterating how all the old "ME" research was rubbish quality.

Combined with ensuring "CFS/ME" remains an "ill defined" mess, sucking up people with non exertional disease and PTSD/F48 lifestyle/mental illness as well, there will always be a good number of patients and their supporters who are happy or neutral towards this anti-ME pogrom, who swallow all th gumph about CBT/GET being "optional", and "everything has a side effect" [too bad it's nearly 100% of very serious side effect in those severely affected, some of them who became severely affected through the "side effect"].

The CBT/GET nonsense doesn't just affect the research community and patient treatment/management choices. It affects who gives practical support and how and what they perceive a pwME's needs to be. Social workers, care assistants and advocates have no reason to disbelieve in CBT/GET and are more likely to look upon practical support unfavourably compared to people with other exertional potentially progressive diseases.

The upshot is fake fatigue charities singing about how wonderful new "services" are while people with unmonitored, untested, untreated, often non-cared for, degenerative diseases suffer and die excrutiatingly alone in dark rooms.


Same goes for unethical coaching quackery like Lightning process, now treated by some CBT/GETers as a parallel therapy worthy of hoovering up scant CFS funds and hype.

It could take 50 or 100 years for this canard to "burn itself out", assuming a strong enough wind blows in the other direction, which hasn't yet happened in the 25 years since CFS' inception. We are an extremely long way from CBT/GET being officially relegated to the adjunct. Only just recently the CDC and SMC have reiterated support for it.


The only thing I see happening in current "CFS" research is increasing polarisation between the somatoform and virological/immune schools with neurology or "brain changes" being a common semantic metamorph. But worryingly a lot of the somatoform school have co-opted otherwise biomedical researchers into blurred ambiguous research areas, where "changes in the brain" or "heart functioning" could mean anything from deconditioning to PTSD or schizophrenia-like perceptual noninfectious nonimmune stuck-state "sensitization" disorders that namecheck enough bodily systems to fool many into thinking they're the right kind of biomedicine for "M.E" that's somehow going to lead to trouncing CBT/GET and getting antivirals & immune modulators. As a result we get dodgy collaborations between properly contrasting schools of thought on the pretext of some imaginary "helpful" common ground but ultimately leads to more dissipation of research effort, confusion and psychosomatic model reification. Both Nancy Klimas and Julia Newton have reiterated support for CBT/GET or similar behavioural rehabilitation as a mainstay or even priority, and seem to make finding a disease modifying drug low priority despite all the talk of immune and cardiac "stuff".

I hope people will continue with perfectly legitimate and reasonable critiques and FOI requests as is people's right to demand. If the research bodies don't like them, they could always stop sitting on information and release raw data which benefits everyone including other researchers. That would be ethical thing to do. I also wish doctors who are on our side would get together at other times than the odd definition or conference and write the kind of critical en mass open letters that the CBT school seems to be able to snap its fingers for, as too often the medical profession gets to hide it's own disagreement and displace all it's woes on the patient.

 

[Esther12]

I'm sure there was a more recent thread about the way the SMC were trying to portray CFS patients critical of the spin which surround the promotion of psychosocial interventions for CFS, but I couldn't find it.

I just found this piece by Fiona Fox on why she accepted an OBE, and thought it was funny enough to re-post.

June 17, 2013

why I accepted an OBE


I met my future husband at a protest outside BBC Broadcasting House in 1989, called to mark the first anniversary of the broadcast ban on Sinn Fein. He was a charismatic socialist republican from West Belfast and I was a young political activist. Defending the democratic rights of Sinn Fein (or ‘Sinn Fein/IRA’ as the UK media described them) was not exactly a popular cause in London at that time and this guy had good reason to feel he had met a kindred spirit. Fast forward some 20 years and he now openly despairs at my evolution from rebel to respectable and suffice it to say that news of getting an honour with the words British Empire in the title has not gone down well with him indoors.
Nor, despite my new found respectability, have I ever been a fan of the royals. Unlike David Colquhoun, I struggled to care much about the Royal Society recently letting Prince Andrew into the fold (as Paul Nurse said: “the clue is in the title”) but I have always found the scientific establishment’s love-in with the royals one of its less inspiring qualities. I was rather pleased when a friendly civil servant revealed that he had removed my name from an invitation list to a Buckingham Palace garden party, knowing that I would rather stick pins in my eyes.
So all things considered you would be forgiven for thinking that when a letter arrived offering me an OBE I would just tick the decline box and never mention it again.
But it seems I have found it within myself to accept, so here are my reasons:
Because the recognition comes not from the royals or the state but from science; it was scientists who wanted to recognise me and the award is for my services to science. That feels good for a girl who didn’t take a single science subject at O level but has fallen in love with the whole scientific enterprise. If I have substituted science for political idealism that is partly because some of what appeals to me about revolutionaries I now find in science, including grand ambitions for a better world and a positive vision of progress.
I also accepted it because I think this gong can only be interpreted as a vote in favour of scientists speaking out. I’m sure my critics will say I got it for cosying up to the scientific establishment, but that would miss the point about what the SMC represents. This Centre has pioneered the need for more scientists to engage with the really messy, contentious and politicised science stories. The words ‘safe’ or ‘easy option’ do not exist in the SMC’s vocabulary and in some ways the SMC has been a thorn in the side of those in government, industry and scientific institutions who continue to place obstacles to scientists speaking out.
I also like the fact that leading scientists nominated a science press officer for a gong. Not being someone who has ever paid much attention to the honours list I have no idea how many press officers get them, but I’d hazard a guess that it’s a small number. Scientists do the most amazing work but, as many plant scientists learned to their cost during the 1999 media frenzy on GM, scientists need to earn their license to practice from the public and cannot stay in their ivory towers ignoring the media. Science PR has had a bad rap recently so I like to think this OBE is a welcome piece of recognition for the role that press officers play.
I do however have a sour note. If I had refused this gong it would have been less to do with maintaining marital harmony and more to do with residual anger at the scandalous way that Professor Colin Blakemore was treated by this system a few years ago. Colin remains the only former head of a research council who has not been honoured, and secret minutes leaked to the media at the time proved that it was a direct result of his outspoken support for animal research. On hearing the news Colin took to the airwaves to threaten his immediate resignation from the MRC unless a leading representative of the government went public to confirm that they fully back the use of animals in research… They did and he stayed at the head of the MRC, but he is still not a Sir. That I have been given an OBE after ten years of running press briefings on animal research and fighting publicly for more openness on the subject suggest that the dark forces that blocked Blakemore may have moved on. Someone should now right this wrong.
It may be crass to say I share this honour with my colleagues but I will say emphatically that I would not have got a sniff of it were it not for the intelligent, talented, passionate and courageous young scientists that make up Team SMC. As a friend of my elderly mother told me OBE stands for Other Buggers Efforts…never a truer word!

6 Responses to why I accepted an OBE

1. Chris Shepherd says:
   June 17, 2013 at 1:46 pm
   Congratulations, and good on you. I am not a royalist but I think that, in cases like yours, the honours system provides recognition for a ‘job’ well done. I despair of the honours dished out to time serving politicians but that is a different issue.
   Reply
2. Liz Malone says:
   June 17, 2013 at 2:47 pm
   Congratulations Fiona, I’m so pleased for you. The Fiona Fox I know will wield and mobilise this OBE in the interests of a public and rational discussion on Science.
   Reply
3. Aisling Burnand says:
   June 17, 2013 at 3:20 pm
   Excellent news Fiona and delighted that you received it for your services to science. You have made such an impact and its great you have been recognised. Keep speaking out for all those in science!
   Reply
4. Sue Avery says:
   June 17, 2013 at 7:15 pm
   Congratulations – there are times when pragmatism does and should win out over ideology. It’s great that your work has been recognised, and since this is the way this country does things, it seems only reasonable to let the world know that it has been recognised – British science owes you a debt – please keep up the good work!!!
   Reply
5. Dr Caspar Hewett says:
   June 18, 2013 at 9:19 am
   Yes indeed. Congratulations on recognition for sterling work over the years. I hope you will continue for many more – the world of science and those of us who believe in progress need you!
   Reply
6. Barbe Drillsma says:
   June 18, 2013 at 10:04 am
   Hi Fiona, Congratulations and well done! See you in Helsinki? Cheers, Barbie
   Reply

 

[alex3619]

Esther12 , perhaps this explains in part why the SMC takes a political view on science, not a balanced scientific one?

 

[WillowJ]

that "bad rap recently" article was a good one.

 

[biophile]

Maybe Esther12 is thinking of this thread/post?

http://forums.phoenixrising.me/inde...cle-in-sunday-times.23050/page-10#post-360792

The SMC have admitted that the news coverage of harassment of CFS researchers was an orchestrated campaign (or as they put it, "frame the narrative of reporting" and "engineered the coverage"), to target extremists and presumably reduce or shame them out of the harassment, which they claimed worked to some extent, although you would never know from any of the recent news coverage, so they are happy with an exaggerated impression of ongoing harassment.

Occasional minimal coverage of genuine criminal activity would have been one thing, but repeated coverage with an onslaught of anonymous accusations about a bunch of offenses that have miraculously not lead to any arrests despite being obvious crimes common in the UK which often lead to convictions? The framing of critics as a fringe element, the sloppy conflation of criticism with extremism, and positioning of criminal harassment along side it as all part of the same problem of irrational hatred against psycho-behavioural research into CFS? The impression that Wessely works in a secured bunker while a dedicated police unit closely monitors ME militants? Presenting an example advocate as someone who was fired for accidentally killing a cat, and touched up a 12 year old girl while drunk and disturbed?

People suspected that all this was part of an orchestrated campaign, but no doubt that was dismissed as a conspiracy theory and just a coincidence that news outlets kept picking up on the same story. Turned out the SMC was actively involved behind the scenes, "[framing] the narrative of reporting" and "[engineering] the coverage".

That does not mean there was no harassment or that all the details were false (I would be surprised if researchers never received angry letters, abuse seems common on the internet for many topics outside CFS), but it does sound like a political move to quell the wave of criticism that erupted after publication of the PACE Trial. The SMC claim to be about an "independent" promotion of "evidence-based science", but their actions suggest they may also moonlight as a public relations agency which engages in spin, propaganda, and possibly FUD as well.

 

[Sean]

The SMC claim to be about an "independent" promotion of "evidence-based science", but their actions suggest they may also moonlight as a public relations agency which engages in spin, propaganda, and possibly FUD as well.

Nah, you got it all wrong.

They are fine and noble folk, doing a tough but necessary job edumacating us hysterical superstitious peasants into the Ways of Science.

Just ask them.

 

[Esther12]

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.

I'm pretty sure I found the video referred to, and that Crawley commented on it:

From the comments:

For clarity, no one has ever said that Dr Crawley is having an affair with Alastair Gibson, (one of the Lightning Process practitioners involved in the trial.) However, hugging and kissing is intimate contact beyond that of a professional relationship, and a clear conflict of interest. Doctors must maintain a professional distance from both their patients, and especially trials involving commercial products where bias could result in erroneous conclusions, and thousands of children being harmed.

[I thikn that this concern is fair enough. Also I've since seen the SMILE group talking about their LP 'coach' being very good... although I can't remember exactly where I saw that now... correspondence with a trial funder/ethics committee I think.]

dcrawley0
3 years ago

Wow, JerichoPenguin, looks like a lot of energy is going in to this. I'd like to hear more about your perspective. Give me a call on +44 20 8816 8411 saturday or sunday after 4pm. Actually anyone on this board should call - there are some productive things we could do.

(Is it normal for victims to ask for phone calls from those they complain are harassing them?)

I also found a document on-line already commenting on this stuff:

http://frownatsmile.files.wordpress.com/2011/07/11-smile-dr-crawley-bmj.pdf

They referred to the section of the BMJ piece that focussed on Crawley:

Esther Crawley, a paediatrician and consultant senior lecturer at Bristol University, is principal
investigator for the SMILE trial, which aims to investigate a treatment called the Lightning Process.
Developed by Phil Parker, an osteopath, the process claims to combine the principles of
neurolinguistic programming, osteopathy, and clinical hypnotherapy to treat a variety of conditions,
including phobias and CFS/ME. There has been no proper medical study of whether it works.
Critics of the method opposed the trial, first, Dr Crawley says, by claiming it was a terrible
treatment and then by calling for two ethical reviews. Dr Shepherd backed the ethical challenge,
which included the claim that it was unethical to carry out the trial in children, made by the ME
Association and the Young ME Sufferers Trust. After re-opening its ethical review and reconsidering
the evidence in the light of the challenge, the regional ethical committee of the NHS
reiterated its support for the trial.
Dr Crawley says it doesn’t make sense to argue that the trial should not be carried out in children.
“The aetiology of CFS in children is different, and so is the prognosis. Ninety four per cent of
children get better, while only a third of adults do. So you couldn’t just do the trial in adults.
Anyway, we’re recruiting teenagers, not children.”
The attacks soon turned personal. “They said I was having an affair with a lightning practitioner,
they doctored a video I appeared in, they reported me to the GMC. It was very harassing. The
GMC said I didn’t have a case to answer.”
Research threatened
Dr Crawley runs the biggest CFS/ME service for children in the UK, seeing about 200 a year. “If the
Lightning Process is dangerous, as they say, we need to find out. They should want to find it
out, not prevent research.
“I expected families and patients to have a twisted view of research, given the amount of stuff
[criticisms, personal abuse, etc] there is on the internet about CFS, but they don’t. We have
to warn them there is this stuff out there, and they get very angry about it—they say we need
answers and you mustn’t be stopped.”

“They said I was having an affair with a lightning practitioner,”
4. I believe this to be untrue. In reality, was not the complaint that Dr. Crawley had been observed, upon
arrival at a patient group meeting at which she was an invited speaker, exchanging with a Lightning Process
practitioner a greeting that implied a personal friendship, rather than the professional relationship that would
be deemed appropriate between a doctor/chief investigator and the vendor of a product that she was about
to evaluate in a pilot study?
I have received the following statement from a patient who raised concerns with the REC and subsequently
submitted a complaint to the GMC:
“It is true that a person observed Dr Crawley greeting Alastair Gibson with hugs and kisses at an ME patient
group meeting. However, no claims whatsoever were made to either the GMC, the REC or the NRES that I
know of, regarding an affair. Nor can any such claims be found on the internet that Dr Crawley was having
an affair with this Lightning Process practitioner. In truth, in a letter to the Ethics Committee, absolutely no
mention, either explicit or implicit, of an “affair” was ever made. The observation was raised solely because it
is completely unprofessional for the chief investigator of a trial to be so amicably friendly with the vendor of a
product under investigation. Dr Crawley's only concern should be her patients. Being on such clearly friendly
terms with a product vendor is evidence of a serious conflict of interest. In the light of the overt falsehoods
that Dr Crawley has made to the REC regarding the Lightning Process, and her willingness to produce false
statements from those product vendors to support the trial, it is clear that her judgement in this trial has been
compromised. The fact that Dr Crawley has now told a direct lie, to undermine those that have raised
concerns about the trial, made in a highly respected source of information (the BMJ) is highly misleading to
patients that need to make an informed choice. Calling such information "twisted" is a gross distortion and
falsehood and for that reason alone, this is coercion of patients."
“they doctored a video I appeared in,”
5. For the avoidance of any doubt regarding supporting evidence I provided in my complaint (8. SMILE Dr.
Crawley comments on other research) I would like to repeat here that I have been advised that a copy of a
video recording of a meeting during which Dr. Crawley gave untruthful and misleading information to the
audience is available and may be provided to the GMC upon request and that the video has not been
“doctored” in any way. A part-transcript of the relevant part of the talk is available on-line and obviously,
there would have been several witnesses present in person among the audience itself to what was said by
Dr. Crawley.
Furthermore, I have received the following statement from the patient referred to above:
“I am only aware of one video that has been uploaded on this subject. It appears on You Tube. Having gone
through the transcript it is clear that none of the video has been doctored whatsoever and that all the clips
are taken in their original context. Again, the claim of doctoring information is made to undermine those that
have raised concern about her professional conduct. Using false statements and lies to try to undermine
those that have raised legitimate concerns about the smile trial is completely unprofessional. Those that
have raised concerns include patients, medical advisors, almost every charity supporting ME and Professor
Robin Gill, an expert on medical ethics (1).”

 

[Esther12]

Also, there's this article criticising the London SMC which might be of interest:L

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

 

[alex3619]

[Sarcasm] I am sure the SMC can change. They can embrace a wider range of scientists and critical views, and present a fairer and even more balanced response. Just because they have in the past had a tendency to use one-sided sources and present them uncritically, doesn't mean they cannot change. Just ask them. Just listen to their fair and balanced public relations people. They wouldn't make public relations statements that were misleading, because they are a fair and balanced reporting organization.[End Sarcasm]

 

[Valentijn]

Also, there's this article criticising the London SMC which might be of interest:L

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

Good ... they're publicly outed as a lobbying firm, where the money directs their stance on an issue.

 

[Wildcat]

.

http://www.theguardian.com/science/blog/2010/oct/15/science-media-centre-hoax-call

.
'Employment tribunal hears of bizarre hoax phone call'

'The director of Britain's Science Media Centre pretended to be a journalist investigating MP's staff expenses.'


' Few people who are familiar with the small pond that is science journalism in the UK will have failed to gulp on reading about the ex-Labour MP Jim Devine and the unthinkable bullying he unleashed on his office manager, Marion Kinley.

Devine, who was an MP in Livingston, Scotland, before being caught up in the expenses scandal last year asked an acquaintance to make a fake call to Kinley and pretend to be a journalist investigating her financial affairs. The story gets darker with every step and you can read more about it here. Devine has since been ordered to pay Kinley £35,000.

Though appalling from the off, it was not the top line that shocked many of my colleagues most. What came as a surprise was the revelation far down the story that the fake call in question was made by Fiona Fox, head of the Science Media Centre in London, a prominent venue for press conferences on all matters scientific and medical. Otherwise articulate people who read the story struggled to say more than three letters: WTF?

I contacted Fox to ask her about the story and she provided a statement, which she has already sent on to a Scottish newspaper. It reads as follows:

"I am pleased Miss Kinley has won her case and deeply regret being unwittingly drawn into this unpleasant saga. In a very, very small way I too was duped by this man. He had assured me that this kind of prank was part and parcel of the humour in his team and that his colleagues gave as good as they got. At that time I had no reason to doubt the integrity of a Member of Parliament who I got to know because of his public support for stem cell research during the Human Fertility and Embryology Bill in 2008."

By phone, Fox explained that she knew Devine for around five weeks in 2008. A day after making the fake call - and leaving a message on Kinley's answerphone - Kinley called Fox, who admitted the hoax and apologised. Fox says:
"I was a first class idiot." I doubt many will disagree.

There are many wonderful things about being a science journalist. You get to spend your days interviewing highly intelligent people who have spent their lives wrestling with profound and fascinating questions about how the world works and all that is in it. Now and then a grim story crops up. This is one of them.'

.

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


.

The hoax phone call made by Fiona Fox to MP Jim Devine's office manager came out in court as part of evidence to an Employment Tribunal case.. Fiona Fox is "the friend" referred to (by name) in the Hearing:

.

‘Ex Labour MP Jim Devine’s ‘hoax’ call left office manager sick with stress – tribunal to rule over dismissal claim’

http://www.deadlinenews.co.uk//2010/10/14/ex-labour-mps-sick-joke-left-office-manager-sick-with-stress/

‘DISGRACED former Labour politician Jim Devine persuaded a friend to call his office manager pretending to be a journalist looking into MPs expenses, it was claimed today.

But when she took time off for stress after discovering his actions had been an elaborate hoax, he told other staff that it was her being investigated for fraudulent expenses claims used to fund a non-existent gambling habit.

The bizarre series of events were described to a hushed Edinburgh Employment Tribunal today (Thurs) as part of office manager Marion Kinley’s case against her former employer.

Even the judge – Jane Porter – appeared to gasp as the full details of Devine’s behaviour was relayed to the hearing’........

.
.

 

[Sean]

Fox says: "I was a first class idiot."

No, Fiona, you were a malignant thug, who needs to take several steps back and have a long hard look at herself.

 

[Snowdrop]

Or. . .just one of ever so many people afraid to say no. So few have any strong principles of behaviour they are easily swayed.

 

[Esther12]

Pretty OT, but here's a Fiona Fox blog on churnalism: http://www.bbc.co.uk/blogs/blogcollegeofjournalism/posts/churnalism_demonising_pr_is_to

Quote relevant to us:

For me, the test of reporting in science should be whether the public and policy makers get access to good, factually accurate, balanced and truthful information. If that is done by journalists and press officers working together and includes a press release, then fine. The failures in this area are as much down to shoddy sensationalist journalism as they are an over-reliance on press releases.