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Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

Discussion in 'General ME/CFS News' started by Dx Revision Watch, Oct 19, 2010.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Response from Joan Kirkbride, NRES

    On Thursday, 4 November, I wrote to Ms Joan Kirkbride, Head of Operations, National Research Ethics Service (NRES).

    Re: Concerns in response to the favourable opinion handed down by South West 2 REC in September 2010 to the application from Dr Esther Crawley, Principal Investigator for the SMILE (Specialist Medical Intervention and Lightning Evaluation) pilot study

    Study Refs: 10/H0206/32, ASH106264, LIN1750



    My letter expanded on some of the concerns I had raised with the Director of Legal Services, University of Bristol, in August, in a formal request for an Internal Review of the Information Rights Officer's decision (17 June) to decline to provide certain information in response to my request for information on the basis that this information was exempt from disclosure under section 22(1)(a) of the Freedom of Information Act 2000 (information intended for future publication). I also included other concerns.

    I gave Ms Kirkbride permission for my concerns to be forwarded, in full, to any individuals charged with the scrutiny of complaints in response to the decision to grant the Lightning Process pilot study ethics approval, within the NRES, within South West 2 REC and including the sponsors, PI, co-applicants and study funders, by paper or by electronic means, redacted or unredacted of name and contact details, according to NRES protocols.

    I requested confirmation that my communication had been received and my concerns noted.

    I may publish a copy of my concerns as submitted on 4 November at some future point on my website.



    This morning, I have received an acknowledgement from Ms Kirkbride which she has CCd to a colleague who is understood to be involved with the scrutiny of complaints.


    I am advised by Ms Kirkbride that:

    She is appending a copy of the standard response which NRES is sending to all respondents on this matter.

    That she advises that NRES "do feel that they now have sufficient information available to [them] and that no new issues are being raised in correspondence which is being sent to [them] for consideration".

    That she has copied my email to the Chief Investigator and Sponsor as I had given permission to do so.

    That I "had raised a number of specific questions outside the remit of NRES where [they] cannot provide a response and the answer to my questions would need to come from either the CI [Chief Investigator] or the sponsor".


    The standard response being issued by Ms Kirkbride is:

    "NRES has received the submissions from the ME society [The ME Association] and others concerning the SMILE study, a children's study investigating treatment of ME in this age group.

    "Following our Standard Operating Procedures we have collated the information we've received and will work with the REC to consider it.

    "Given that this treatment is currently available, ME society survey data suggests it has a similar profile to other therapies and the split opinions in the ME community (this study has the support of particular ME charities who have also been involved in its planning) we feel that a fair way forward is to seek the responses of the researchers, sponsor and the ME charities involved in the development of the study before asking the REC to review its favourable opinion. We also note that in this project, subjects will not be deprived of what is current care in this clinic. Research participants will receive this intervention in addition to their standard treatment.

    "We will also be seeking the views of our National Research Ethics Panel."


    Suzy Chapman
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I am advised that at least two others who wrote to Joan Kirkbride, last week, have received the same response, today, and have been asked to forward their concerns directly to the CI and the Sponsor if they had not given permission for their concerns to be forwarded to other parties within their letters.

    Suzy Chapman
  3. kermit frogsquire

    kermit frogsquire *****

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    The latest news as of the 22nd Novemeber is that Dr Shepherd continues work hard to make representations to the NRES to stop the trial. Furthermore Invest in ME have added their support to get the trial stopped

    http://www.investinme.org/Article-50...ns Study.htm

    "If people are concerned about this study then they can send their comments to Joan Kirkbride, at the National Research Ethics Service, at the address below."

    Please if anyone has any additional info - especially those that feel they have been harmed by the Lightning Process, contact the NRES and/or myself and I will pass the story along. Additionally, representations have been made to the Office of Fair Trading and meetings have been held with the news media to get this story covered. By working together we can stop Phil Parker.

    Again, this is what we are trying to stop.
    http://www.youtube.com/watch?v=FGtChQPNUQw

    The charities involved have been so helpful. What is most helpful now is as many people as possible that have done the Lightning Process and suffered harm as a result to come forward. Please contact me with your stories. Remember that before we started writing some people were told that there was no possibility of an ethics review -

    http://www.forums.aboutmecfs.org/sh...tion-“The-Future-of-Research-in-CFS-ME”/page5

    Yet that is exactly what we now have - so don't believe that you should only write to the CI/Sponser. Trust the Charities involved not blog sites.
  4. eric_s

    eric_s Senior Member

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    Trying to stop a retrovirus through the LP... how foolish are some people going to look (well, ok, it's not 100% sure yet)... I'm amazed again, everytime i get reminded of this.

    It's 2010, there are electron microscopes, computers, PCR, etc. and we see the same quackery and idiocy like in the middle ages. Just simply incredible...

    Sorry if this post is not really helpful, but i just can't keep quiet when i read about that topic.
  5. kermit frogsquire

    kermit frogsquire *****

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    Thats exactly what Phil Parker is now claiming in one of his latest presentations, Eric. His claim - That LP results in recovery in 3 days of 85% of people, and that 67% of people with ME have XMRV - a retrovirus - therefore LP must somehow be making the immune system clear these viruses. It would be funny if it wasnt so horrible, not to mention completely against the law to make such unsupported claims. This is exactly why Phil must be stopped.

    Definitely dont keep quite - make a noise! The law says that there is an unlimited fine and up to 2 years in prison for knowingly making misleading claims about products (which includes training programs). Write to your MP, NRES, whoever you can think of to stop this guy. As my MP said, it seems that Phil Parker can say or do whatever he likes with impunity.
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    A general note to those following this thread:

    What I have written above is:


    That is, if they have already written to Ms Kirkbride with their concerns but had not given permission in their letters for them to be forwarded to the CI and Sponsor that they should forward them separately.

    Those who have given permission to forward were having these forwarded by Ms Kirkbride herself.

    I have not written nor suggested nor implied that individuals should write only to the CI and Sponsor.

    I should like to put on record that I object most strongly to my being misrepresented.


    On 16 November, I wrote again to Joan Kirkbride:

    The response was that NRES are collating a list of all the people/organisations who have contacted them about this study. That they have received considerable correspondence about this matter which will take some time to consider and take forward but it is their intention to advise everyone who has written to them about the process and the outcome.

    So, no clear procedures and no procedural timeline.


    Suzy Chapman
  7. eric_s

    eric_s Senior Member

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    I'm neither a UK citizen nor resident, so i can't do much about this.

    Well, you know, in South Africa they say that garlic or taking a shower after sex can prevent you from catching HIV. Or that sleeping with a virgin can cure you, if i remember correctly.

    I think it's time to start making lists of names, collecting quotes, video clips, stories etc. The time when all the BS can finally be exposed as being BS might be coming closer. Dr. Singhs patent application and the latest WSJ blog seem to indicate that.
    I'm not even thinking so much about legal action, but making the truth known and exposing those who have screwed up and hurt people. Things should be put straight.

    And hey... if we're too ill, lazy or whatever we will not even have to do it ourselves. We're 1 million on each continent, that's a pretty safe bet.
    Everybody can give 100 EUR or USD (oh yes, GBP, too) once. Who can we hire for 100'000'000? I guess everyone. PR people, lawyers, whatever we need.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Extract from the Summary of the ME Association meeting of the Board of Trustees which was held on 15 and 16 November here:

    Lightning Process
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  10. Enid

    Enid Senior Member

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    Bother Phil Parker - how they try to detract from the real thing and with children too.

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