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Where is the UK coverage of the FDA/NIH paper???

Discussion in 'Action Alerts and Advocacy' started by V99, Aug 23, 2010.

  1. max

    max *****

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    and this does NOT mean I have surrendered to the National Archives - the next attempt to gain access to FD 23/4553/1 is underway.

    I.m just watching BBC NEWS24 and they're reporting the National Archives releasing WWII propaganda material following 70years closure - wow !!!
     
  2. Uno

    Uno Senior Member

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    Who did you speak to UKXMRV - as my group have been working flat out to try and get some press coverage.

    Sarah Boseley has said that she does not plan to write about XMRV anymore - which is rather disheartening. I plan to focus my efforts on writing to the authorities for now - what with the NICE Review and all, it's important that isn't forgotten!

    Still - journalists are fed up of being pestered - I'm fed up of being ill!!!!!!
     
  3. Sasha

    Sasha Fine, thank you

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    How bizarre that journalists don't want to be alerted to an important story or want to be aware that lots of people are interested in it! What has become of journalism?!

    Apart from the Daily Mail online article, the UK media have been completely silent. The only other mention via - rather than "in" the media - has been from PWC hijacking comments sections on online news health stories (a story about STDs in the Guardian and Telegraph and - I saw today - one on complaints about the NHS in the Independent). I'm sure that that will have got a little bit of attention and maybe it's helped give a bit of feedback to those newspapers but that level of "guerilla posting" is surely seen by too few people to be of help.
     
  4. richvank

    richvank Senior Member

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    Hi, UK activists.

    I'm sure that this has occurred to you, but I'm wondering if the new decision on banning blood donations from PWMEs in the UK could serve as the basis for a news story. That could lead into a broader discussion of ME/CFS and the retroviruses, it would seem. As I say, you are no doubt already way ahead of me on this.

    Rich
     
  5. Uno

    Uno Senior Member

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    I'm glad you noticed our efforts on the STD thread Sasha! We've been furiously posting on messageboards for the past few days - I for one am completely shattered. The British press are a funny bunch - I have a friend who is a journalist and even she doesn't want to touch the story, she didn't even comment when I have emailed her, merely ignored me and deleted me:)

    In terms of newsworthy coverage this story has now run its course sadly. I think the real test will be when the results of the UK WPI study and the Swedish study are announced - proven XMRV on our own soil will have to be reported about.

    Also the media have likely been warned by the Department of Health about scaremongering, after the last storm surrounding the Swine Flu pandemic in the UK, the last thing the Government wants is another public panic on its hands at the hands of the media.

    The way our media is run really annoys me, there are few if any journalists who will stick their necks out to print a story off their own backs, they will only print what releases they get from the Department of Health or SMC and we all know who sits on that panel don't we.
     
  6. Sasha

    Sasha Fine, thank you

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    Hi Uno - I was posting on the Guardian site too - I agree this story is over now as far as the media is concerned.

    I think you're right - when we get some UK-specific news, that might help and if the WPI announce their UK study results at the XMRV conference in a couple of weeks, maybe that will be it...

    Weird about your friend. I wonder if sometime she will tell you why she wasn't interested.
     
  7. max

    max *****

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    The daily mail (on-line) 'piece' was a token gesture from the government, the silence elsewhere is a dead givaway that the media has been instructed to not discuss this matter - are they still working out what the f$%k they can do about this?!

    Has Wessely spewed any comments yet?. I've not seen any pearls of self serving wisdom eminating from his gob. Yet.

    Today I read a confirmation of a life time ban on UK blood donation from ME/cfs people - a whole section of society barred from giving blood - ever. JUSTbecause ME/cfs is a 'relapsing' illness (admitedly they did call it a neurological condition - cleverly slipped in I thought) -

    This is a controlled release of information.

    Next few weeks will be interesting.
     
  8. paddygirl

    paddygirl Senior Member

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    Independent.

    I first heard about the WPI and XMRV through the English Independent last October. (8/9?) The story was front page and there was an excellent editorial inside lambasting the treatment people with M.E. had received.

    I knew nothing about the politics of M.E. in England and didn't understand the significance of it. It was the beginning of a steep learning curve!

    The writing in the editorial was very strong and the author obviously felt very strongly about the issue.

    I did clip the piece but it's long gone. Would it be worth contacting them? I'm not sure if their archives go back that far, and I'm flat out at work for the next week if anyone could look at it.

    Deafening silence in Ireland too. Just the usual depressing stories I hear from people who know I'm ill telling me of someone they know who is sick too and never goes out etc. Lots of work to do here.

    Paddy:worried:
     
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Its been a week now and nothing much has come of these UK media efforts. I think if they were going to do a great report it would have happened by now.

    Given that the September XMRV conference is only 10 days away (!!!!!!) I think it could be a great move for us to wait for this. We will have news from Dr Mikovits about the UK study, as well as Dr Merleir's results (he is Europe based) and possibly Sweden and a whole host of other goodies.

    Evidence - published or otherwise - that XMRV really is present in the UK & Europe, coming so soon on top of the positive Lo/Alter paper, will really take a few by surprise (though for us the surprise will be pleasant - if having a retrovirus can be considered good news).

    Sooner or later the news will be stacking up and any journalist who ignores that will be missing a huge story - especially now that big buck corporations like SAIC and the Nat Cancer Institute are developing expensive tools to hunt for XMRV. They are hardly likely to be doing that if they're not sure its there.

    Patience folks - its all happening much much slower than we would like, but I'm pretty sure it's happening - albeit in a slowly rolled out kind of way. If the NCI are investing in XMRV to this extent and inviting in SAIC - it has to be there somewhere.
     
  10. Sasha

    Sasha Fine, thank you

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    Very well put, pictureofhealth - we've had a bit of a disappointing week in the UK with the near non-existent media coverage but I think you're right - the conference is coming up, other stuff in the pipeline... we just have to hang in there.
     
  11. Sherby

    Sherby Sherby

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    I have just sent this email to the The Science Media Centre. Their motto is

    "The Science Media Centre ... working to promote the voices, stories and views of the scientific community to the national news media when science is in the headlines..."

    Also many thanks to LJS spending much time getting the list of news items together.

    Dear Sir or Madam,

    I am writing with regard to the growing concern within the community of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS / ME) sufferers in the UK, that a very important breaking news item on 23rd Aug 2010 has not been mentioned in any of the major British mainstream media outlets, with the exception of a low key article in the Daily Mail (and a similarly underreported article on the Birmingham News website) contrast this with the reporting throughout the rest of the world, with 150+ articles to date, including the front page of the Wall Street Journal.

    A news conference was held ET 3pm 23rd Aug 2010 announcing the incontrovertible link between the XMRV/MRVs retrovirus and CFS details are as follows, and a small selection of the worldwide news items are also attached at the bottom of this communication.

    Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
    http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf html


    My concern regards the very important finding in the US, that confirms the presence of a previously unknown retrovirus in 85% of CFS patients in the study by the FDA, and that the same retrovirus is present in up to 7% of the normal healthy population. This study confirms previous work done in this area by the Whitmore Peterson Institute.

    What the CFS/ME population in the UK find disconcerting and troubling is that there seems to have been a news blackout in all major UK media outlets since this Monday. The CFS forums around the world are shocked that this is happening.

    In the past news articles have appeared that echoed the prior medical establishment view that CFS/ME is caused by psychiatric rather than biological reasons a view now discredited by the latest findings, but not corrected in the media following publication of this evidence.

    Also new news; as of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK.

    We, the CFS community believe that any news items about CFS/ME need to be authorized by Professor Simon Wessely, a long time defender of the now discredited psychiatric explanation for this disease, and an individual who has proved intransigent in his steadfast refusal to accept the proof of the biological explanation

    Can you please advise me whether there will be coverage of this news item, and if so when.

    Hyperlinks to the following articles may be found at :

    http://www.forums.aboutmecfs.org/sh...age-of-Dr.-Alters-NIH-paper-post-stories-here

    "The Science Media Centre ... working to promote the voices, stories and views of the scientific community to the national news media when science is in the headlines..."


    Yours, in anticipation of your reply,


    Medical Journals
    PNAS, Dr. Alter NIH\FDA Paper\Study: Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
    PNAS, comments on findings: Mouse retroviruses and chronic fatigue syndrome: Does X (or P) mark the spot?
    PNAS, editorial: Patients, patience, and the publication process
    Response in Science: Second Paper Supports Viral Link to Chronic Fatigue Syndrome (A Must Read!)

    NIH Teleconference
    Initial Press Release from NIH: http://www.nih.gov/news/health/aug2010/cc-23.htm
    Julius recorded the whole NIH teleconference (THANKS!) and Dolphin then uploaded the files to the web
    Hosted on yousendit.com:
    Part 1: https://www.yousendit.com/download/a...Mm1ENlN4dnc9PQ
    Part 2: https://www.yousendit.com/download/a...TXZPSHl4dnc9PQ
    Hosted on Mediafire.com:
    Part 1: http://www.mediafire.com/?6phy8fyxxj4mhy9
    Part 2: http://www.mediafire.com/?40esxfnjflnyzhz
    A typed transcript of the teleconference can be found on the XMRV global action facebook page

    NIH, FDA, & CDC Information Pages
    Q&A on Dr. Alter's Paper
    CDC XMRV Q&A Page

    Dedicated ME-CFS & Neuro-immune Disease Organizations \ Blogs
    CFS Central: THE FDA/NIH/Harvard XMRV Study: The Same Thing, Only Different
    Age of Autism: The Whittemore-Peterson Institute - A Light in the Darkness (XMRV Update!!!)
    CFIDS: Another Turn of the Retrovirus Kaleidoscope
    CFIDS: Comparison of Published XMRV and Murine Leukemia-Related Virus (MLV) Studies in Patients with CFS
    CFIDS: A Pictorial Essay to Describe XMRV, MLVs and Gammaretroviruses
    The ME Association (UK): ME Association summary and statement on results of the new retroviral study

    Mainstream Media
    8/23
    WSJ: Study Finds Retroviruses in Chronic Fatigue Sufferers
    Washington Post: New evidence that virus may cause chronic fatigue
    Washington Post: Mouse virus link to chronic fatigue is studied (AP)
    Washington Post: Chronic fatigue study points to retrovirus
    NYtimes: Study Links Chronic Fatigue to Virus Class
    Bloomberg: Chronic Fatigue Linked to Mouse Virus in U.S. Government Study
    US News & World Report: More Evidence Mouse Virus Plays Role in Chronic Fatigue Syndrome
    Reuters: New mouse virus found in chronic fatigue patients
    NPR: Scientists Find Traces Of Virus In Chronic Fatigue Patients
    CNN: New evidence linking mouse virus and chronic fatigue
    i09 (gawker): Further proof that chronic fatigue syndrome is linked to viruses
    LA Times: Study reignites debate over virus' role in chronic fatigue
    8/24
    Daily Mail (UK): Chronic fatigue syndrome 'may be caused by mouse-related virus'
    WSJ: PNAS Paper on Virus-Chronic Fatigue Syndrome Link Has Its Own Story
    NPR Marketplace: Private funds helped push Chronic Fatigue research (Story at 10min 50 sec in downloaded show mp3)
    8/25
    WSJ: Does X (the Virus, That Is) Mark the Spot in Chronic Fatigue Syndrome?
    8/26
    The Birmingham News: Virus associated with chronic fatigue syndrome, according to research by NIH, FDA
    WSJ: Betting on X As in XMRV With a Big-Ticket Research Center

    Specialty Sites: Health \ Magazines \ Other
    About.com: NIH/FDA Study Confirms: XMRV Tied to Chronic Fatigue Syndrome
    Discover: Chronic Fatigue Debate Goes on: New Study Links the Syndrome to a Virus
    New Scientist: Virus link with chronic fatigue syndrome resurfaces
    ProHealth: A Historical Watershed in the Study of ME/CFS and Associated Illnesses
    Psychology Today: MLV Joins XMRV As The Latest Unproven Cause of Chronic Fatigue Syndrome
    Psychology Today: XMRV Virus Confirmed in CFS
    TheScientist: Q&A: (Randy Schekman, editor in chief of PNAS) Why I delayed XMRV paper
    Scientific American: New research linking chronic fatigue syndrome to retrovirus is released after being held by journal
    WebMD: Virus Linked to Chronic Fatigue Syndrome

    WPI Responses
    YouTube Video: Annette congratulates Alter and Lo
    YouTube Video: Judy Mikovits reacts to the Lo/Alter paper
    Statement on XMRV/Chronic Fatigue Syndrome, Positive replication study confirms WPIs findings

    Will i get a reply i wonder.
     
  12. Mark

    Mark Acting CEO

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    The evaporation of this positive line from the Independent was a rather shocking development. They would be the best paper to pursue in my opinion, and worth getting to the bottom of why they changed their approach. I feel sure somebody must have had a quiet word with them for this to have changed so dramatically. As Paddygirl rightly points out, they even made an editorial of it - and since then, deafening silence.
     
  13. Esther12

    Esther12 Senior Member

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    I certainly don't think that it's anything as explicit as that.

    But I think it was very clever to develop the idea that it is bad for CFS patients to believe that their condition is anything but psychological. It means that public criticism of the psychological approach to CFS could be damaging to patients. It could be that their illness was caused by media hysteria!

    If I were a lazy, disinterested and cowardly journalist, I wouldn't want to touch that with a ten foot pole. Especially when on one side of the debate you've got a nicely turned out, cultured professor with a disarmingly self-depreciating sense of humor and on the other side you've got a gaggle of rather desperate haggard looking psychiatric patients.

    It's such a clever way of stifling dissent that I expect it was entirely accidental. Funny how these things happen.
     
  14. Sherby

    Sherby Sherby

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    Hi Esther12

    I know i have over exaggerated some of the phrasing to try and coaxes a reply from them,
    to get a little more detail out of them would be great.
    I don't expect a reply from them anyway.

    I don't know why but my gut instant tells me he's the go-to guy
    and has to approve any CFS/ME literature before publishing.
     
  15. max

    max *****

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    No, it isn't clever .............. and no it was not accidental, and no, it isn't funny either. ......
     
  16. Ecoclimber

    Ecoclimber Senior Member

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    Mercer Island Wa
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Great letter Sherby, I wonder what will come of it? Do they know about the upcoming XMRV Conference in September? I'm assuming they do as Dr Bishop is connected to the MRC through their research centre. (btw I think the Birmingham News is an American publication ?Alabama or similar?)

    Esther12 - Prof Wessely is listed as one of the Science Media Advisors on their site (under Psychiatry) - there are only about 15-20 listed for the whole UK.

    Given that it is his weight behind the UK CBT/GET clinics for ME/CFS 'treatment', this is the root of patients' suspicions as to why the biomedical research findings don't tend to make it very far past the Science Media Advisor start line & into the UK newspapers. If they do, they are almost always down played with an added negative comment from Prof W - or more recently nowadays - Myra McC, who is often 1000% sure about no XMRV.
     
  18. Mark

    Mark Acting CEO

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    Just to add the link for this:
    http://www.sciencemediacentre.org/pages/about/sap.htm

    It's both encouraging that he's so desperate, and scary that he is able to influence the media like this. One can only hope that whatever interests he represents aren't powerful enough to win out in the end. The best encouragement I can think of is to note that he could quite clearly stop the story coming out all on his own.
     
  19. Esther12

    Esther12 Senior Member

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    Oh sure - I get the his role at the SMA will give Wessely more influence and respectability... I just don't think the reporters are unable to go against his wishes.

    In case anyone is interested I dug out the SMA releases on XMRV. Nothing for the initial paper in Science, then this Press Briefing:


    05 January 2010
    New research on Chronic Fatigue Syndrome

    Speakers:
    Prof Myra McClure, Division of Medicine, Imperial College London
    Prof Anthony Cleare, Institute of Psychiatry, Kings College London
    Following on from a recent paper published in Science, which purported to show a link between chronic fatigue syndrome (CFS) and a particular virus, researchers at Imperial College London analysed blood samples from 186 CFS patients and found that none carried the virus, casting doubt on the previous findings. The new findings are published in the journal PLoS One.




    Then this expert comment:

    26 February 2010
    Expert comments on new study casting doubt over ME virus link, as published in the BMJ

    In addition to other recent research findings, this new study casts further doubt on previously identified links between a particular virus (known as XMRV) and chronic fatigue syndrome/ME.

    Prof Myra McClure, Professor of Retrovirology & Honorary Consultant, Head of Section of Infectious Diseases, Imperial College London, said:

    "Three papers from three well-respected European laboratories have now independently and unambiguously failed to find XMRV in CFS patients. New results from other US laboratories will now be very interesting. It is unlikely that this virus is only found in US CFS patients, but it is possible that the cluster of patients studied in the original paper by Lombardi could be infected with XMRV, but that the virus has no role in CFS. This needs to be investigated."

    To contact the above please contact the Science Media Centre on 020 7670 2980


    No more since then.

    I'm not underestimating the impact this sort of thing has on the way the UK media reports CFS stories - I just don't think anything like authorisation from Wessely is required before a story is published. Who knows though? If he's the go to guy, maybe publishing a story that he thinks is rubbish would be a risky move

    Hmmm... especially as most science reporters probably go into their work to promote a knowledge of the current scientific consensus rather that investigate and campaign against failings within that consensus. They're unlikely to think there's much need to rock the boat, and more likely to be dependent upon sources and contacts. We'd be less likely to find a brave, dogged investigative journalist with science then elsewhere. I hadn't thought about that.
     
  20. Sherby

    Sherby Sherby

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    pictureofhealth

    No reply as yet. I will email them tomorrow about the conference in September, that's if I'm not too cognitive impaired. Could you enlighten me as i don't know the Dr Bishop connection.

    Just incase anyone has missed cfssufferer post at Living With Chronic Fatigue Syndrome site

    Conversing With Professor Simon Wessely

    This is an email conversing between cfssufferer i presume, and Professor Wessely which took place between the 1st of August 2010 and the 3rd of August 2010.

    All i can say what pure arrogance. Does he still believe that after all that has happened his career will carry on as normal. He is in for a lot of hurt, big time.

    "I am afraid that i am no longer involved in the politics of CFS research, and haven’t been for many years. I no longer sit on any committees /workshops/conference etc about definitions, grants, research etc etc. I do still do my one day a week seeing patients in the clinic, which i still really enjoy, otherwise i wouldn't do it, but have had little or no dealings with the politics of all this for ages and ages. I have handed over the research unit to someone else, and my involvement in research is largely either helping to recruit patients for other peoples’ research studies, or giving advice to Ph d students/supervising juniors. My active research has been for many years with the military, and anyway, for most of the day I am now a faceless university bureaucrat. So my ability to influence the areas that you wish influenced are practically zero – you may perhaps be relieved to hear that".

    What a load of crap. I've noticed him repeat this same line time and time again the last five years or so. So how comes his names on

    Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
    Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely, Anthony Cleare

    And didn't we hear McClure mention that Wessely gave her the CFS patient samples.

    What about this quote "I no longer sit on any committees /workshops/conference etc" What a load of B......
     

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