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

Discussion in 'General ME/CFS News' started by Firestormm, Dec 1, 2012.

  1. Firestormm

    Firestormm Guest

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    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 :)

    Spacing's are my own.
     
  2. alex3619

    alex3619 Senior Member

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    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.
     
  3. Enid

    Enid Senior Member

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    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.
     
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  4. Shell

    Shell Senior Member

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    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.
     
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  5. Stukindawski

    Stukindawski

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    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.
     
  6. Enid

    Enid Senior Member

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    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.
     
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  7. alex3619

    alex3619 Senior Member

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    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
     
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  8. Esther12

    Esther12 Senior Member

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    LOL. On their time-line, they list the promotion of PACE as one of their top hits.
     
  9. Esther12

    Esther12 Senior Member

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  10. taniaaust1

    taniaaust1 Senior Member

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

    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.
     
  11. SOC

    SOC Senior Member

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    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. ;)
     
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  12. alex3619

    alex3619 Senior Member

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    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
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    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
    ... and that has been followed by Japan setting up one http://smc-japan.org/eng/aboutus/info
    . 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)
    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
     
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  14. alex3619

    alex3619 Senior Member

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    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.
     
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  15. Snow Leopard

    Snow Leopard Senior Member

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    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.
     
  16. Jarod

    Jarod Senior Member

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    "Government and related agencies" help fund the Science Media Centre. Kind of sad way to use taxpayer dollars.

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

    SOC Senior Member

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    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.
     
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  18. Snow Leopard

    Snow Leopard Senior Member

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    It doesn't surprise me at all.

    I don't however feel there is any real risk to their safety, so in that sense it is exaggerated.
     
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  19. Stukindawski

    Stukindawski

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    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.
     
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  20. Jarod

    Jarod Senior Member

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    From Dr Esther Crawley's allegations in post #1

    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.
     

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