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Scandal in BMJ's XMRV/CFS Research

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Mar 22, 2010.

  1. parvofighter

    parvofighter Senior Member

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    Background info on the bmj

    From: http://group.bmj.com/products/bmj

    Vision

    To be the world's most influential and widely read medical journal.

    Mission
    To lead the debate on health, and to engage, inform, and stimulate doctors, researchers and other health professionals in ways that will improve outcomes for patients.


    NOTE: What we have collectively uncovered flies in the face of the BMJ's Vision and Mission. Do they have a Board? Who is God (Fiona Godlee) accountable to? Can we get emails to send info on their new BMJ Scandal to them?

    Open (signed) peer review
    FROM: http://resources.bmj.com/bmj/reviewers
    Who were the peer reviewers for this article? Can someone dig this info up?
    The BMJ uses open peer review. This means that reviewers have to sign their reports, saying briefly who they are and where they work. We also ask reviewers to declare to the editors any competing interests that might relate to articles we have asked them to review. Open peer review does not mean, however, that authors should feel able to contact reviewers directly to discuss their reports; all queries should still be directed through the editorial office.

    If you experience any adverse event arising from open peer review, or would like to tell us your views, please email papersadmin@bmj.com
    Guidance for peer reviewers
    From: http://resources.bmj.com/bmj/reviewers/peer-reviewers-guidance
    The BMJ uses open peer review so that authors know who has reviewed their work. This means that you will be asked to give your name and position, and any relevant competing interests, in your report on any article we send you.

    As a reviewer you will be advising the editors, who make the final decision (aided by an editorial committee for all research articles and most analysis articles). We will let you know our decision. We will pass on your signed report to the author, so please do not make any comments that you do not wish the author to see. Even if we do not accept an article we would like to pass on constructive comments that might help the author to improve it. NB: IF WE CAN GET THIS INFO, AND THE COMPETING INTERESTS - THIS MIGHT HELP TO MAKE A CASE FOR BIAS IN REVIEW It does not mean that authors should contact you directly; we ask them to direct any queries through us. Nor should you contact the author directly.

    Writing your review
    When you provide your review via our online editorial office we will ask you to declare any competing interest that might relate to the article.

    Before writing your review you may find it helpful to browse our resources for authors, advice on BMJ article types, our transparency policy, and our training materials for peer reviewers.
    Please give detailed and constructive comments (with references, whenever possible) that will both help the editors to make a decision on the article and the authors to improve it.

    For all articles:
    Is the article important? Will it help our readers to make better decisions and, if so, how? Will the article add enough to existing knowledge? Does the article read well and make sense? Does it have a clear message?

    For research articles please comment on:

    • Originality does the work add enough to what is already in the published literature? If so, what does it add? Please cite relevant references to support your comments on originality.
    • Importance of the work to general readers does this work matter to clinicians, researchers, policymakers, educators, or patients? Will it help our readers to make better decisions and, if so, how? Is a general medical journal the right place for it?
    • Scientific reliability
      • Research question clearly defined and appropriately answered?
      • Overall design of study appropriate and adequate to answer the research question?
      • Participants adequately described, their conditions defined, inclusion and exclusion criteria described? How representative were they of patients whom this evidence might affect? (sorry 'bout the red Koan - this is critical!:Retro redface:)
      • Methods adequately described? Main outcome measure clear? For randomised trials, systematic reviews, observational studies, health economics studies - reported in line with the appropriate reporting statement or checklist (see below)? Was the study ethical (this may go beyond simply whether the study was approved by an ethics committee or IRB)?
      • Results answer the research question? Credible? Well presented?
      • Interpretation and conclusions warranted by and sufficiently derived from/focused on the data? Discussed in the light of previous evidence? Message clear?
      • References up to date and relevant? Any glaring omissions?
      • Abstract/summary/key messages/what this paper adds reflect accurately what the paper says?
      • Documents in the supplemental files eg checklists for these statements CONSORT, PRISMA, MOOSE, STROBE; the BMJ health economics checklist; and the protocol for an RCT - do these contain information that should be better reported in the manuscript, or raise questions about the work?
    BMJ Publishing Group Limited as a publisher is governed by the self regulated Press Complaints Commission. Their Code of Practice can be viewed by accessing their website.

    LINK FOR "CONTACT US" CUSTOMER SERVICE FORM: http://myaccount.bmj.com/myaccount/...rl=http://group.bmj.com/group/customerservice

    For media enquiries about the BMJ or BMJ Group please contact:
    Emma Dickinson
    Tel: +44 (0)20 7383 6529
    Email: edickinson@bmjgroup.com

    For media enquiries about BMJ Journals please contact:
    Caroline White
    Tel: +44 (0)7980 800 465
    Email: cwhite@bmjgroup.com
    [FONT=&quot]
    [/FONT] BMJ ETHICS COMMITTEE

    FROM: http://resources.bmj.com/bmj/authors/editorial-policies/guidelines
    journals have a duty to consider the ethical aspects of both submitted and published work. The BMJs policy on these issues has been developed with the help and advice of the BMJ ethics committee and its key elements are explained here.

    We welcome, therefore, detailed explanations of how investigators and authors have considered and justified the ethical and moral basis of their work. If such detail does not easily fit into the manuscript please provide it in the covering letter or upload it as a supplemental file when submitting the article.

    Editorial appraisal of ethical issues goes beyond simply deciding whether participants in a study gave informed consent although this is, of course, one very important issue to consider. Editors should judge whether the overall design and conduct of each piece of work is morally justifiable, as summed up by the following questions:
    • How much does this deviate from current normal (accepted, local) clinical practice?
    • What is the (additional) burden imposed on the patients (or others)?
    • What (additional) risks are posed to the patients (or others)?
    • What benefit might accrue to the patients (or others)?
    • What are the potential benefits to society (future patients)?
    Even when a study has been approved by a research ethics committee or institutional review board, editors may be worried about the ethics of the work.
    We already ask peer reviewers to consider and comment on the ethics of submitted work.

    What happens when the BMJ considers a study to be unethical? We believe that editors have a duty to take on issues of unethical audit or research, not to seek punishment for the authors, but to prevent unethical practice and to protect patients.

    If the BMJ, with or without the advice of its ethics committee and/or COPE, considers the work in a submitted article to be ethically unsound the editor may seek further advice or recommend investigation or action. (NB: Fiona Godlee and her team should have exercised due diligence and investigated this paper BEFORE it was published - isn't that the idea?!)
    In the first instance the editor would usually contact the head of the department where the work was done to explain the BMJs concerns and recommend a local investigation. Secondly, the editor might write to the professional registration body of the papers guarantor or principal investigator. For a doctor in the UK, this body would be the General Medical Council.

    NB: COULD SOMEONE PLEASE RESEARCH THE EMAILS AND NAMES FOR THE IDEAS LISTED IN THE ABOVE PARAGRAPH? EG. WHAT IS THE PROFESSIONAL REGISTRATION BODY FOR VAN KUPPEVELD? FOR THE OTHER AUTHORS OF THE BMJ STUDY?
    Ethics Committee
    From: http://resources.bmj.com/bmj/about-bmj/about-bmj/advisory-panels/ethics-committee
    The BMJ's ethics committee meets quarterly and communicates regularly by email. Collectively, the members have broad expertise including clinical medicine, research, journalism, bioethics, law, and medical editing.
    The committee has six main roles:
    ...

    3. Advising editors on ethics questions that arise during routine editorial work. This includes scrutinising papers referred by editors or peer reviewers worried about some aspect of the conception, design, conduct, presentation, authorship, or peer review of the work described in those papers.

    4. Advising editors on their moral duties and responsibilities to patients, research participants, authors, reviewers, publishers, other editors and readers.

    NHS Research Ethics Committee: NHS Research Ethics Committee - is this relevant?

    Publication ethics
    International Committee of Medical Journal Editors
    Committee on Publication Ethics (COPE)
    World Association of Medical Editors (WAME)

    BMJ Publishing Group Ltd
    BMA House,
    Tavistock Square,
    London,
    WC1H 9JR.

    Tel: +44 (0)20 7383 6309
    Fax: +44 (0)20 7383 6418

    Email: papersadmin@bmj.com

    Finally, does the BMJ have the following departments, and if so, can someone sleuth their key personnel and emails?
    Quality Assurance
    Risk Management
    Corporate Social Responsibility
    Legal
    Ethical Review Board
    Due Diligence committee?

    TTFN
    :Retro smile:
  2. parvofighter

    parvofighter Senior Member

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    Afterword to: Scandal in bmj's xmrv/cfs research

    Last one... I just pulled together a summary of some of the highlights of comments made after the article was posted:

    NOTES FOR AN AFTERWORD: BMJ UNPLUGGED

    A critical omission in my article:
    Vercoulen-94-04..jpg


    "On the BDI, 32% of patients did not have depressed feelings at all."

    If I interpret that correctly, they are referring to the Beck Depression Inventory.

    SO.... if 32% of patients SAID they didn't have depressed feelings... that would mean that 68% of patients said they DID have depressed feelings... which makes this cohort EVEN worse (as if that were possible), no?

    As Gerwyn noted in post #42, on the Scandal at the BMJ thread: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page5

    A minimum of 36% of the patients had clinical depression.
    It is entirely possible that the figure was as high as 68%.
    To put it bluntly if the authors of this study reported that it was a well characterised (CFS) cohort they either dont understand the disease area at all
    or were being disingenuous

    In case you missed it, Gerwyn did a masterful exposee of the Dutch Cohort on this thread: http://www.forums.aboutmecfs.org/sho...ight=vercoulen . And it was based on his trailblazing that I decided to look again at the whole BMJ issue. I urge you to read Gerwyn's original piece - it's characteristically excellent.

    And in response to Julius question about the attempt to, Minimalize the risk of including patients with delayed convalescence of a viral infection.

    What has swayed me toward the likelihood that there are VERY few (if any) patients with viral etiology in the BMJ cohort was the fact that they said,

    "Minimalize the risk of including patients with delayed
    convalescence of a viral infection",


    NOT

    "Minimalize the risk of including patients with
    convalescence of a viral infection".

    And it raises the question of just WHY they were so adamant to keep out the viral cases. (Isn't that investigator bias right there... coming back to haunt the BMJ 16 years later?) Again, questions need to be asked, and tough ones. Whether these can be reasonably answered, 16 years too late, is another question.

    ---------------------------------------------------------------------------------------------------------------------


    Corts notes: From Post #43: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page5
    "For me the Symptom Section is the most disturbing part of the document thus far. Some of the cardinal signs of ME/CFS are not presented that significantly. While myalgia is high, only 50% had concentration problems, only 43% had sleep disturbances - that is a glaring difference! Only 13% had sore throat. Sore throat isn't as common as was first believed (altho I had one for about 10 years) but still only 13%.

    This really seems to me to be a very good indication that these were not your typical CFS patients and that this cohort was not representative of us. In a sense this group was pretty well characterized but they don't appear to be CFS patients (!)."
    (From the article) And together, they still only (weakly) explain 28% of the variance. Which rather nicely summarizes the perspectives of many CFS researchers 16 years ago and even today. They don't know what they're studying. Yet this reinforces the British and indeed Dutch paradigm to deny ME/CFS patients physical testing and diagnostics. Why bother when its all psychosomatic?!

    I agree that this is a real problem. 28% should not be a convincing number; it should be a warning sign to look elsewhere!

    Cohort, Cohort, Cohort - You started out with a question about the cohort - that is the key question here. Was that group representative? It sure doesn't look like it...
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Suzy's keeping a lot of plates in the air at the moment. This is big forum - I'm sure there are other UK people who might consider taking this forward.

    Suzy
  4. fingers

    fingers Senior Member

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    Sorry folks, got a couple of ME projects on the go already, as well as trying to feed the kids, fight the infections and remain compos mentis (if I ever was!).

    Suzy, any way we can get the charities to take up the cudgels? Get them to actually DO something? No doubt too many cronies they're afraid of upsetting.

    Parvo, what can I say that hasn't been said........you're making us look pathetic on this side of the pond.

    Come on guys, time to sign up and join the war.

    F
  5. sproggle

    sproggle Jan

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    Calm and collected people please....

    Thank you so much for this Catch, we have 4 weeks Phew!!

    Everyone take a breather and come back when ready :hug:

    I'm not upto such brainwork myself right now, as many of us aren't, but I'm sure over the next few days we'll piece things together...

    Jan xx
  6. Mithriel

    Mithriel Senior Member

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    This might be useful and relevant. The whole paper is available here.

    http://freespace.virgin.net/david.axford/JCFS.pdf

    Mithriel
  7. JillBohr

    JillBohr Senior Member

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    O.K. , I am later than everyone else here but GO CANADA! er, I mean Parvo! I am also thrilled regarding the DUTCH article covering Parvo's rebuttal. I am thrilled that we have Carla here as well. She is doing a fantastic job getting the word out in the Netherlands. Dag!
  8. ukxmrv

    ukxmrv Senior Member

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    Hi Parvo,

    Just to let you know that I have had a lot of experience with the UK press complaints commission over many years on CFS and ME issues.

    They refuse to tackle this problem as there is no brief to investigate hate crimes in publication against PWME as a group. They have no brief to act against inaccurate reporting against groups of disabled people.

    They would look at it (they tell me) if individual patients were named in the press and brought complaints to them only.

    The PCC is there to protect celebrities and try to stop libel actions. They are self-governing and are made up of media reps.

    They way publications get around the PCC restrictions are

    1. publishing as an opinion quoted by an "expert" ( the PCC tell me that opinions are not covered by their code). Anyone can publish an opinion and as long as the publication makes this clear (and the PCC always argue that it is clear) then there has been no breach of their code. Anyone can hold an opinion that is wrong, illogical or inflammatory and the PCC will defend the publications right to print that opinion regardless.

    Printing that opinion or interpretation that is simply wrong does not not constitute an inaccuracy (to them).

    2. Not naming individual patients (the PCC tell me that disabled groups are not covered by their code)

    To top this, the PCC staff have a high turnover and the loss of complaints and a failure to act are very common. Their own complaints system doesn't work. It's not unusual for a form letter to be sent at the start of a complaint and then nothing to happen after that or another form letter to be sent closing a complaint that makes no logical sense.

    The PCC could (of course) make an exception for us as they have done for other groups not directly covered by the PCC code. However, they chose not to do this.

    The matter of the PCC failing to act has been discussed with my MP and a written opinion was obtained by a government body (can't remember which one at the moment as brain bad) but they all claimed powerless to act. At least one other person that I know of has done this (asked the govt to act on the PCC about CFS & ME reporting).

    Don't want to put people off making complaints but just wanted to explain the hurdles in that approach and what people will face when they complain.
  9. natasa778

    natasa778 Senior Member

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    legal action under Disability Discrimination Act?
  10. ukxmrv

    ukxmrv Senior Member

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    Been unable to get a lawyer to act on our behalf (wrote to many "human rights lawyers" and organisations etc).

    That's no reason for others not to act of course. After all the Judicial Review went ahead when someone found a lawyer. It didn't work of course, but there is no reason why something will not work in the future.

    Just pointing out that a lot has been done in the past so people will not be disappointed if they don't work again. I'm still fighting and complaining and won't give up.
  11. Kati

    Kati Patient in training

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    Not sure if it's appropriate but here are suggestions to add:

    PLOS one since they are associated with another replication study of XMRV
    Dr Ellie Stein (Calgary, Canada) a psychiatrist that recognizes ME/CFS as a biological disease.

    Will make some thoughts as what I can do, will try to squeeze down to 400 words. The posts are long and it's confusing at the moment to find out what's the first step. I am willing to help, but like Parvo I am in Canada.
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You're learning fast, fingers :eek:)
  13. starryeyes

    starryeyes Senior Member

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    Thank you Catch!

    This morning in Chat Tino posted this link:

    "Nor is Abbott alone in judging XMRV hard to find. Since January, three confirmation studies—two British, one Dutch—have reported results, and none found the retrovirus in either their CFS blood samples or their controls. As doubt is increasingly cast on WPI's theory that XMRV causes CFS, arguments have raged across the Atlantic. Accusations of sloppiness, bias, and even fraud have been hurled, mostly by Judith Mikovits and WPI's defenders. Old suspicions of patients have reappeared."

    http://pharmexec.findpharma.com/pharmexec/article/articleDetail.jsp?id=661633&sk=&date=&pageID=4

    Looks to me like these guys need the data Parvo found and assessed as well.
  14. fred

    fred The game is afoot

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    The BMJ is a wholly owned subsidiary of the British Medical Association

    The BMJ is a wholly owned subsidiary of the British Medical Association (BMA).

    "The BMA is the independent trade union and professional association for all doctors working in the UK, and for medical students, and provides members with full representation, employment support, advice and other valuable benefits."

    "The British Medical Association represents doctors from all branches of medicine all over the UK."

    "It is a voluntary association with a total membership of over 140,000, rising steadily, including more than 3,000 members overseas and over 20,000 medical student members."

    Its Chief Officers are listed here.

    http://www.bma.org.uk/about_bma/chief_officers/index.jsp

    President (Annual election by the Representative Body) 2009-2010 Professor Averil Mansfield
    Chairman of the Representative Body (1 year term; eligible for annual re-election) Dr Peter Bennie
    Chairman of Council Dr Hamish Meldrum
    Treasurer (3 year term; eligible for re-election) Dr David Pickersgill

    (Senior staff of the Association appointed by Council)
    Chief Executive/Secretary Mr Tony Bourne ( an ex-banker )
    Editor of the BMJ Dr Fiona Godlee

    Here is Dr Godlee's biography.

    "Fiona Godlee has been Editor in Chief of the BMJ since 2005.

    "She qualified as a doctor in 1985, trained as a general physician in Cambridge and London, and is a Fellow of the Royal College of Physicians. Since joining the BMJ in 1990 she has written on a broad range of issues, including the impact of environmental degradation on health, the future of the World Health Organisation, the ethics of academic publication, and the problems of editorial peer review.

    "In 1995, she led the development of BMJ Clinical Evidence, which evaluates the best available evidence on the benefits and harms of treatments and is now provided worldwide to over a million clinicians in 9 languages. In 2000 she moved to Current Science Group to establish the open access online publisher BioMed Central as Editorial Director for Medicine. In 2003 she returned to the BMJ Group to head up its new Knowledge division."

    I would suggest that a letter be sent to each of these people (notwithstanding that Dr Godlee is already on a list of people to write to).

    The BMA's contact details are as follows.
    BMA House, Tavistock Square, London WC1H 9JP
    Telephone: 020 7387 4499

    The next BMA President is Professor Sir Michael Marmot. I suggest we write to him too. Here's his latest article about tackling health inequalities.

    http://web2.bma.org.uk/nrezine.nsf/wp/ESML-83TMX2?OpenDocument&C=27 March 2010

    In addition, the BMA has various divisions, councils, etc. which could be contacted.

    http://www.bma.org.uk/about_bma/history/BMAStructure.jsp

    The BMA's Board of Science is the "..... main interface between the profession, the government and the public, on matters of science, health education and the health of the public. Through research and publishing, it leads debate on key scientific and public health matters, and awards grants to encourage individual research in various fields of medicine."

    http://www.bma.org.uk/about_bma/what_the_BMA_does/BMAsci.jsp#Science

    Here are the members of the Board of Science. Perhaps we should write to these people too (note that there is overlap with the Chief Officers listed above).

    http://www.bma.org.uk/representation/pro_committees/board_science/bosmembership.jsp

    The Trade Union Role of the BMA:

    http://www.bma.org.uk/about_bma/what_the_BMA_does/index.jsp

    "One of the Association’s most important roles is as a Trade Union. Advice and representation for members, both individually and collectively is provided across England, Wales and Scotland by askBMA and regional services staff. A key supporting role, however is played by members who represent their colleagues locally."

    Do we have any patients who are members of the BMA and can pursue internally/personally the issue of the publiciation of false, misleading and damaging research findings?

    The key requirement here, I would suggest, is to produce a summary of Parvo's excellent analysis which can be forwarded to the people detailed above.

    I am prepared to 'have a go' - but there may be others out there who have better brain cells than I. I am not sure what justice I can do to such an opus magna nor how long it would take me (and I believe we only have four weeks to lodge a formal complaint).
  15. julius

    julius Watchoo lookin' at?

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    fred, based on your post there it looks to me like you could do the job!!
    Nice work.
  16. sproggle

    sproggle Jan

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    Somebody's probably already posted this info but just incase..

    http://resources.bmj.com/bmj/about-bmj/bmj-complaints-procedure

    BMJ Complaints procedure..

    This procedure applies to complaints about the policies, procedures, or actions of the BMJs editorial staff. We welcome complaints as they provide an opportunity and a spur for improvement, and we aim to respond quickly, courteously, and constructively. The procedure outlined below aims to be fair to those making complaints and those complained about.

    Definition

    Our definition of a complaint is as follows:

    *The complainant defines his or her expression of unhappiness as a complaint

    *We infer that the complainant is not simply disagreeing with a decision we have made or something we have published (which happens every day) but thinks that there has been a failure of processfor example, a long delay or a rude responseor a severe misjudgment

    *The complaint must be about something that is within the responsibility of BMJ editorial department content or process

    How to make a complaint
    Complaints may be made by phone, email, or letter, ideally to the person the complainant is already in contact with over the matter being complained about. If that is not appropriate please email: complaints@bmj.com

    Whenever possible complaints will be dealt with by the person to whom they are made. If that person cannot deal with the complaint he or she will refer it to a section editor or the deputy editor responsible for complaints.

    Complaints that are not under the control of BMJ editorial staff will be sent to the relevant heads of department.

    Complaints about editorial matters that are sent to the chairman of the BMJ Publishing Group Board, to the chief executive of the BMJ Publishing Group, or to BMA officers and officials will usually be referred in the first instance to the Editor (and invariably if they relate to editorial content, for which the editor is wholly responsible).

    All complaints will be acknowledged (immediately on the phone, within three working days if by email or post).

    If possible a definitive response will be made within two weeks. If this is not possible an interim response will be given within two weeks. Interim responses will be provided until the complaint is finally resolved.

    If the complainant is not happy with the initial response he or she can ask for the complaint to be escalated to the individuals manager or to the deputy editor (complaints).

    If the complainant remains unhappy, complaints should be escalated to the editor, whose decision is final.

    If a complainant remains unhappy after what the editor considers a definitive reply the complainant may complain to an external body (see Appendix 1).

    The deputy editor (complaints) will be responsible for overseeing the complaints procedure. If you have any queries about this procedure please contact Jane Smith, deputy editor (complaints) jsmith@bmj.com

    Appendix 1: External bodies
    If the complainant has exhausted the internal processes and is still unhappy he or she can complain to one of the following bodies.

    The Press Complaints Commission
    The Press Complaints Commission is an independent body which deals with complaints from members of the public about the editorial content of newspapers and magazines. http://www.pcc.org.uk/

    The Prescription Medicines Code of Practice
    For anything related to a published advertisement for a prescription medicine
    http://www.abpi.org.uk/links/assoc/pmcpa.asp
    Copies of the Code of Practice for the Pharmaceutical Industry, the Code of Practice Review and the Annual Report are available from:
    Prescription Medicines Code of Practice Authority
    12 Whitehall
    London SW1A 2DY
    Tel: +44 (0)20 7930 9677
    Fax: +44 (0)20 7930 4554
    www.abpi.org.uk/publications/pdfs/codeofpractise03.pdf

    The Committee on Publication Ethics
    COPE publishes a code of practice for editors of scientific, technical, and medical journals http://www.publicationethics.org.uk/
    It will consider complaints against editors but only once a journals own complaints procedures have been exhausted.




    I really wish I could get my head round all this &help more but it's just beyond me at the mo...

    Jan xx
  17. parvofighter

    parvofighter Senior Member

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    Thank you! Ideas for action.

    Thank you! Thank you! Thank you!
    Suzy, Fred, Catch, Carla, Sproggle, Kati, fingers, Islandfinn, teejay, ukxmrv. And those of you who have private messaged me (and sorry if Ive missed any) THANK YOU! Geez Fred, that link for the next BMA President, Sir Michael Marmot is absolutely inspired. So many other great ideas. Not up to listing them all, but THANKS, and keep'em coming!!!

    Any and all email addresses still welcome will post on or after this weekend an updated list of contacts, and what Ive been doing in the background

    NAVIGATION FOR VIRGINS
    to the BMJ XMRV Scandal

    The 5-part Article: Scandal in BMJs XMRV/CFS research
    For those of you joining this thread as virgins, check jump to the beginning to read the 5-part article, specifically posts #1, 2, 4, 6, 7 , starting here http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research.

    Afterword
    Theres a summary of discussion after the article, including some more thoughts from Cort and me in post #86 here: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page9

    Action Ideas
    Action ideas start at Islandfinns post #17, with my summary for action in post #81 here
    http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page9 , and a lovely distillation of that list by Catch in post #88 here: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page9

    WHAT YOU CAN DO:
    (Tiny jobs available!)

    If you can add any email addresses and/or names to the list from post #88, please do! (sorry - technical problems - I can't seem to copy it below for now, but here's the link again: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research/page9 ). Other ideas for who we should contact to try to get this article retracted and/or to publicize the BBC's and van Kuppeveld et al's glaring flaws in cohort selection? Any more ideas on someone (or an organization) which might sponsor a formal complaint to the UK Press Complaints Commission (I have pretty much the writing done all they need to do is submit it) and/or directly to Fiona Godlee, the BMJ Editor-in-Chief?

    Update of contact and to-do lists coming
    I'll work on an update of our contact list (and how to post it). If no one else does a summary by Monday, then I'll take a kick at it (but takers MOST welcome to do it!):D What we REALLY need is a champion or sponsor to take our package of letter/complaint/article/summary to the next level. And of course more media proliferation...Ideas...?

    [FONT=&quot]TTFN

    Parvo:Retro smile:
    [/FONT]
  18. Countrygirl

    Countrygirl Senior Member

    Messages:
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    458
    UK
    After a day away burying yet more members of my now almost extinct family, I have returned to read what is here. A champoin/figure head could surely be Professor Malclom Hooper? He has certainly earned his spurs for the ME Community and he a worthy advocate who, if he is not snowed under, might act as figurehead.

    Can anyone think of a better person?

    C,G,
  19. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Few of the listed contacts...

    Added spaces to email adds, enough to stop spammers picking them up??


    No 3. The ME Association


    Head Office

    Tel: 01280 827070 (between 9.30am and 4.30pm)
    The ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks MK18 4DF

    Administration

    Please contact Gill Briody
    Email: meconnect @ meassociation.org.uk
    Tel: 01280 827070 (between 9.30am and 4.30pm)
    The ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks
    MK18 4DF

    Public Relations and Communications
    Publicity Manager, Tony Britton.
    Tel: 01406 370293 Mob: 07880 502927
    60 Broadgate, Weston, Spalding, Lincs PE12 6HY
    Email: tbritton02 @ yahoo.com




    No 5. ME Research UK
    Address:
    ME Research UK
    The Gateway
    North Methven Street
    Perth UK
    PH1 5PP

    Telephone: 01738 451234
    Email: meruk @ pkavs.org.uk


    No 8. Invest in ME

    email: info @ investinme.org

    No 9. Malcolm Hooper

    email: malcolm.hooper @ virgin.net

    No 21. Meridian Tonight UK TV Show


    Contact the newsroom:

    tel: 0844 881 2000
    email: meridiantonight @ itv.com
    address:
    Meridian Tonight
    Forum One
    Parkway Solent Business Park
    Whiteley
    Hampshire
    PO15 7PA




    2am so off to zzzzzzzzzzzzzzz......


    Jan xx
  20. parvofighter

    parvofighter Senior Member

    Messages:
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    99
    Canada
    When is the BMJ going to blink?

    The BMJ and Retraction of the fatally flawed van Kuppeveld et al XMRV Article:

    Damned if they do - and damned if they don't

    One thought to add: and this might really resonate for the incoming British Medical Association President (No one wants to inherit someone else's dirty laundry). It is conceivable that the BMJ and BMA will be in a "damned if they do retract the article" AND "damned if they don't" scenario. And they're going to need to decide which is the lesser of the evils. I say this based on two things:


    • The scuttlebutt on the street. In the backrooms; in "unofficial" reports; in private messages and emails... from ME/CFS patients participating in hot new and richly-funded XMRV studies. (See Cort's article on CBS's experience in the Bateman/Singh/Light study - proceeding full steam ahead http://www.forums.aboutmecfs.org/content.php?90-A-Light-in-the-Darkness-Good-News-Ahead-for-XMRV ). It would appear that the leading researchers are getting MORE and MORE excited about XMRV actually causing pathology - including CFS. More and more money is being spent on this. Big-name players. Things like Dr Mikovits' abstract for the upcoming Autism conference - referring to her speaking about soon-to-be-published autism/XMRV findings...

    • The tidal wave of research and interest into XMRV- in prostate cancer, RNase-L and CFS, such as from the Conference on Retroviral Infections; the Cleveland Clinic's very public (Youtube) Sones Innovation Award to Dr Silverman for his discovery of not only XMRV in prostate cancer, but also in ME/CFS; the Light Studies with Dr Singh; Dr Singh/Mikovits collaborating with Dr Bannert in Germany who apparently is RE-TESTING his prostate cancer patients.... Yup, I'd be willing to bet on it - in fact have bought stock to that effect (debt-financed, I'd add - that's how convinced I am of this field). I'd submit that the tide is turning globally in acceptance of the XMRV/prostate/ AND ME/CFS findings.
    But when will the BMJ "bite"?
    So here's the million dollar question.

    The BMJ's Vision and Mission clearly capture their desire
    to be a LEADER in the world of medicine.

    At what point is the BMJ going to realize that they are following,
    rather than leading in XMRV/ME/CFS research?

    At what point will it dawn on them that they will be the laughing stock of the XMRV research world; the target of ridicule for conducting XMRV research on a cohort that was misrepresented as a "well-defined cohort" of ME/CFS patients; and the target of at best CONCERN in the medical world, that the BMJ has supported a psychogenic model of ME/CFS - but positioned it as "clearly defined" ME/CFS cohorts in their XMRV research.

    At what point will academics begin to wonder about the same kinds of things that Cathie Sudlow mentioned in the BMJ accompanying article... things like investigator bias... At what point will the BMJ begin to scrutinize their own "peer-reviewers", who along with BMJ Editor-in-Chief endorsed the van Kuppeveld article:

    "We and our reviewers also thought it was well done"

    ?
    At what point are the readers of the BMJ, the rest of the editorial board, and the BMA begin to wonder about the editorial objectivity in publishing this claptrap? The writing isn't just on the wall - it's in the BMJ's own source document, where Vercoulen et al. explicitly admitted that the source of the blood, used for the BMJ van Kuppeveld study was thus defined:

    • "Information on physical abnormalities and treatment relied on self-report".
    • Using a score of 16 or more, 36% of patients could be considered as having a clinical depression.
    • "To test generalizability, the present study sample was compared with a recently tested group of 68 patients with unexplained fatigue(not CFS).
    • And the clincher: the source of the blood came from a study where the examiners expressly, Minimalized the risk of including patients with delayed convalescence of a viral infection.
    The BMJ stated their XMRV research was on CFS patients, when by their own admission it was on a group of depressed patients with unexplained fatigue - who had been explicitly screened to remove patients with "delayed convalescence of a viral infection". Not much chance of finding XMRV in that cohort.

    So when is the BMJ going to blink?;)
    Do they restore credibility by swiftly yanking their flawed XMRV article? Or do they backpedal as long as they can? Here's the kicker: if they wait too long to retract their article, the global head-shaking at the BMJ's severely flawed XMRV cohort is only going to increase. Imagine: the BMJ - a "leader" in the world of medical journals - badly lagging behind in the emerging and stunning breakthrough research on the next AIDS. This is going to be an interesting power struggle. Clash of the titans.

    So I'll go back to bed.

    Parvo:Retro smile:
    :Retro smile:

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