1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day Three: Translating Science into Clinical Care: 22 March 2014
Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and...
Discuss the article on the Forums.

Dr Charles Shepherd give BBC Radio Interview

Discussion in 'General ME/CFS News' started by alex3619, Jul 28, 2011.

  1. anniekim

    anniekim Senior Member

    Messages:
    582
    Likes:
    182
    U.K
    Firestorm, you write 'that if someone has not written a letter that does not say 'I believe I have a retrovirus which I think is preferable to having a mental illness'. I think you are suggesting that of course this is ridiculous, and, i would agree. However, when Wessley cites that some people with M.E would seem to prefer having an incurable retrovirus than a possible psychological illness this is of course clever spin, making these people look stupid. The truth as we know, but is not revealed in the current media reports, is that due to Wessley saying in the past that M.E is a psychological illness has directly caused people with M.E only being offered treatment for mental illness which has of course not helped as people with m.e don't have a mental illness but a physical illness. The possibility of a retrovirus is preferable as this is a physical ailment and so there is hope they may be get medical treatment that will help them to improve. They are not actually saying they would prefer to have a retrovirus than a mental illness per se, just in relation to their situation of having M.e which they know to be physical but which is so often treated by the medical profession as being a mental illness, leading to inappropriate therapy and management.

    Wessley twists so cleverly what people are saying when they make that comment placing it out of context, making the people look unbalanced. This is so unfair. Rod Liddle in his horrendous article today, like Wessley, also paraphrased Wessley's comment that some people with M.E would rather have an incurable retrovirus than something else. It's just their clever way of trying to portray some people with m.e as unbalanced without giving the whole picture. It's spin.

    On another point, you are right of course that the recent coverage in the press and radio in the UK are about Wessley and co allegedly receiving death threats. For a newspaper this makes a juicy story. What i find so disheartening though is that in reporting about this there is no explanation of Wessley's stance in the past about M.e and the fact that his stance has stymied biomedical research into M.E, denying m.e patients potential effective medical treatments. You wrote somewhere that you didn't think Hooper needed to go into Wessley's past, but I don't agree, I think in the name of balance, if an article talkes about Wessley receiving death threats, although they are not condoned, it is vital that background is given as to why some people may lose control and attack Wessley. The newspaper articles and radio shows did not provide this information which made it unbalanced.

    Finally, as for Wessley saying that the actions of a few extremists with M.E is preventing scientists getting involved in research into M.E is in my opinion barefaced cheek and another example of spin. It is highly unlikely Wessley's assertion is true. What is far more likely is that as Wessley has aggressively over the decades put forward the theory that M.E is a mental illness, which has subsequently been believed by so many in the medical profession, it has, as often has been often said, caused scientists to not be interested in doing bio medical research as M.e was considered a mental illness and should be steered clear of by scientists interested in looking into bio medical research.
  2. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Can I make 3 points about the Wessely spin. A few "extremists" - a few driven to distraction by the attitude/only treatment on offer - his (and we are 250,000). Convenient bending of the facts - that research scientists will be put off biomedical investigation - he et al are described are leading researchers and experts in the field (cornered the market so to speak) and it is they who create such reluctance with their just "all in the mind" - so why pursue. And to suggest that all research will suffer from opposition to his views appears like wishful thinking - he is no Virologist, Neurologist, Immunologist, Geneticist etc. (from where all advances overseas now come) is sheer arrogance - it is he et al who put off all biomedical research, not us, not even a few driven to distraction by decades of misrepresentation in the UK. He's scared all others off.

    Sorry if this has already been said but bears repetition.
    Declared interest - wishing to swear (but no energies) in A & E when 3 Docs gave a psychiatric diagnosis.
  3. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    149
    Essex, UK
    Actually, anyone who has done a media studies course at school (or a semiotic analysis course at university) can very quickly see that this media blitz, from the NatureNews article and BMJ article a few weeks ago, but including the full-frontal attack on Friday, is setting up LEGITIMATE, NON CRIMINAL advocate activity as villainous, to the point that innocent advocates find themselves wrongly implicated in criminal activity.

    The 'death threats' are remarkably free of detail, but much space has been devoted to other actions that are not criminal, and these are conflated as the same as alleged criminal acts.

    In the Hawkes BMJ article, for example, the Judicial Review, and official, public complaints such as Malcolm Hooper's to the MRC, were juxtaposed in such a way as to appear the same as criminal acts.

    So, see here for example, at the beginning of the BMJ article, where Wessely is claimed by Hawkes to have:

    In a news report on Friday, THIS is claimed:

    Apart from the absurdity of asking us to believe that people making death threats or threats of violence would also make official complaints (there are good reasons to find that doubtful or not so plausible), the problem then becomes that anyone who has made an official complaint is (wrongly) implicated, in the public eye in alleged criminal activities (like that Professor Emeritus Malcolm Hooper guy?!) That is how ridiculous this situation is.

    Another example: I am an innocent advocate who has NEVER committed any crime as part of my advocacy. I have had occasion to write to Wessely's employer in 2007, however, because a false claim that I had 'personally harassed' him was made on Wikipedia and Wessely was sadly implicated. Sadly neither Wessely nor his employer would confirm that he was NOT implicated.

    I have also made an official, public complaint about the PACE trial. Other people appear to have complained about Wessely, and importantly, others, to the General Medical Council. See how this is treated by Nigel Hawkes in the BMJ article:

    Here reasonably, legitimate activity has been juxtaposed with alleged 'animal rights' violence. The author has to acknowledge it's not the same, but nevertheless uses the alleged violence of a demonised group of activists to compare to ME/CFS advocates. It works well as a "guilt by association" tactic.

    Even the Crawley claims of 'death threats' on the radio on Friday (apparently the term "you will all pay" constitutes a 'death threat') were juxtaposed with legitimate complaints about the Lightning Process and Crawley's part in this.

    So it really isn't a case of innocent advocates like myself being reassured we are not being referred to. We may be innocent, but we are being falsely implicated as criminal.

    And THIS is why people need to expose what has gone on here where they can.
  4. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    767
    Hi, all.

    It will be interesting to see what, if any, response we get from the BBC. Personally, I have found BBC reports about the disabled to be frequently predjudicial, (associating us with benefit cheats happens routinely now.)
    This continual drip feed of bias is damaging to everyone who is sick or disabled, and makes it difficult for us to live with dignity.
    This latest newspiece is another example of that.

    The BBC and other newspapers appear quite unaware of their duties with regard to the Disability Discrimination Act.
    It covers public bodies as well as individuals.
  5. anniekim

    anniekim Senior Member

    Messages:
    582
    Likes:
    182
    U.K
    Hi Enid and Angela, agree wholeheartedly with both of your comments.
  6. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Good points Angela - am sure a good lawyer could expose their dubious tactics too. So all criticism (including the scientific) is "tarred with the same brush". Can't recall my Uni psychology but think it's called displacement.
  7. Bob

    Bob

    Messages:
    6,298
    Likes:
    6,580
    England, UK
    This negative publicity is a sure way to drive away decent researchers from the field of CFS/ME: Wessely is effectively threatening researchers that they will receive serious abuse and death threats from patients if they get involved in CFS research. He knows exactly what he's doing, but it's a shame that the BBC reporters have bought into it.

    And, at the same time, he is using this sensational media blitz as an opportunity to promote his psychiatric theories. It's a very clever manipulation of the media.

    I've never heard Jonathan Kerr complain about receiving abuse from patients. Not once. Nor the many other honest researchers who work with ME.

    It just seems to be three researchers who say they receive abuse: Wessely, McClure and Crawley. (I wonder why?)
  8. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    That is the "aim" Bob - so I guess with all that is available to us, to other advocates, scientists, charities who will be watching too, we'll just have to keep on (and expose/nip nonesense in the bud wherever we can). Interesting point the only complaining researchers - could they be psychiatrists all. ?????
  9. Bob

    Bob

    Messages:
    6,298
    Likes:
    6,580
    England, UK
    Yep, I agree Enid.
  10. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    The whole import on Spin Friday was that aggressive patients were driving researchers out of the field. The frenzied media spin on Friday had its roots in the coverage by the BMJ. There, Nigel Hawkes' piece concludes "As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans."

    [​IMG]

    Which just goes to show how honest the reportage is. For instance, what about McClure and Wessely's quick and dirty XMRV denial, Jan. 2010 http://www.ncbi.nlm.nih.gov/pubmed/20066031

    [​IMG]

    The PACE study has Prof W listed under the acknowledgements at no. 2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2147058/

    [​IMG]
    [​IMG]

    A quick search brought up ten pages of results from Google Scholar using the search terms "Keywords: Chronic Fatigue Syndrome, CFS /Author: Wessely /Years: 2001 - 2011. Changing the date range to 2010-2011 still brings up five pages. So I submit that far from being "put off" ME/CFS research, Prof Wessely is redoubling his efforts in the field. After all, with his position as gatekeeper to media information via his role as spokesperson for the SMC, his influence over the NICE guidelines and his seat at the table of public funds at the MRC, he is very deeply entrenched in positions of trust that have serious influence over all our lives.

    Some of this info is from Dr Speedy's new blog, http://niceguidelines.blogspot.com/2011/07/world-exclusive-prof-wessely-admits-in.html
  11. Bob

    Bob

    Messages:
    6,298
    Likes:
    6,580
    England, UK
    But we all know that Wessely hasn't given up on CFS. It's his baby. (For want of a better phrase.) It's his life-time's work. That is why he is so desperate to hang onto CFS, and to maintain CFS as a psychiatric illness. His life-time's achievement has been to manipulate the whole country into believing that ME is a psychiatric disease. It's quite an achievement.

    And Wessely still runs a large NHS CFS clinic in his psychiatric hospital (which is possibly the UK's largest CFS clinic?)


    Jace, I like it: 'Spin Friday'!
  12. Esther12

    Esther12 Senior Member

    Messages:
    4,875
    Likes:
    4,172
    He wasn't the first or last author on those... but he did seem to take the lead on promoting the XMRV one. He's been one of the authors on loads of CFS stuff - that one on prevalence of CFS-like-illness(?!) amongst minority ethnicities was probably the most recent.
  13. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Suggest graceful retirement while he can - as the evidence builds of viral(s) involvement and the extent of the pathologies. "Spin Friday" beginning to look like "a last ditch" try on.
  14. Bob

    Bob

    Messages:
    6,298
    Likes:
    6,580
    England, UK
    "Last Ditch Friday"? I like that even more!
  15. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Even nicer Bob - and nice to keep some humour going.
  16. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    262
    Long Beach, CA
    Prof. Wessely needs to learn to differenciate between threats and wishful thinking...
  17. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,393
    Likes:
    4,276
    USA
    Great one, ix!

    PR is full of good laughs today. ;)
  18. Mark

    Mark Acting CEO

    Messages:
    4,412
    Likes:
    1,714
    Sofa, UK
    A good point to highlight in any responses to this type of propaganda. It would also be nice to have some quotes from genuine ME researchers about the patient community - the good guys have a very, very different experience of us, and it ought to undermine the whole narrative if only they could step forward and describe that experience (and get it into print in the UK, which is the hard part I guess).
  19. Bob

    Bob

    Messages:
    6,298
    Likes:
    6,580
    England, UK
    That's a good idea Mark. It would be good to get a short quote from various other ME researchers, about their experiences with ME patients, to send to Radio 4, and the newspapers.
  20. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Here's an interesting link on the tactics employed by Wessely in achieving his goals in 2002.

    http://www.rescindinc.org/countessmar.html

    So nothing new. Much rebuttal on the Web googling him/me and whatever we can possibly do.

See more popular forum discussions.

Share This Page