Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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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. Carla-nl

    Carla-nl Veteran by now

    This thread made it to the Dutch press

    I'm in serious AWE


    PS, the preliminary translation (improvements welcome)

    “An American patient opens a Can of Worms from Nijmegen”

    The Nijmegen Research of Van Kuppenveld et all on XMRV and CFS excluded, beforehand, patients infected with XMRV. This is based on the selection of the population which was, amongst other things, based on self reported psychological symptoms. An American patient opens the 'Can of Worms of Nijmegen' in a critical and well documented report in spite of all the laudatory discussions in the British Medical Journal and elsewhere.

    PS PS, i have little birdies that tell me things : ))
    this one was called Frank.
  2. Frickly

    Frickly Senior Member

    Way to go Parvofighter! Thanks for tracking this down Carla.
  3. MEKoan

    MEKoan Senior Member

    More awe from me!
  4. julius

    julius Watchoo lookin' at?

    BTW, check out the article, they have Parvo's avatar as their graphic. Nice!
  5. Funkster


    Parvoman - fantastic work on the Dutch study...

    Basically, BMJ made a terrible mistake when they accepted the study and if they would like to keep their reputation, they have to withdraw it.

    Cohort issues, low number of patients, blood samples from 1991-1992, no culturing. Fast-tracking a study like that is a big mistake.

    Somebody should put 400 words together asking them to withdraw the study.

    - Funkster :)
  6. Gemini

    Gemini Senior Member

    East Coast USA

    outstanding investigative report & analysis of the BMJ cohort!!!!

    great work!!!!

  7. Stuart

    Stuart Senior Member

    Parvo! Count me in Awe as well.

    An absolution jewel of analysis. :victory:

    Then I saw after great posts by Gerwyn helping out, a bunch of doo doo.

    Dr. Yes's post was a satirical bit of plastic doggie doo ;) - likely done in anticipation of what has become all too common here. To take a well thought out set of posts, and bury it in a steaming pile of crap. :Retro mad:

    If enough criticism or just noise is piled on we must doubt! If you tell a lie often enough, it must be true!

    The mote of cohort uncertainty in the WPI/CC/NCI Science Paper is equal to the Beam of cohort nonsense in BMJ/Dutch studies.

    If someone comes on with a nick of "veritas" and makes accusations of vague bizarre financial motivations to WPI well it must be "Fact" when mixed in with links to public records that prove... um? What???

    To all the professional and nonprofessional (you know who you are) Obfuscators, I hereby declare SHENANIGANS!

  8. kurt

    kurt Senior Member

    WPI did not pre-culture their PCR test so that is not highly relevant. But the other issues are correct. The editors accepted the low patients and old samples. But I doubt they did the background checking on the cohort issues to learn how poorly defined that group was. That part should be brought to their attention.
  9. Gerwyn

    Gerwyn Guest

    no none of the issues are correct
  10. Kati

    Kati Patient in training

    Congratulations to Parvofighter !!! May more publications consider this very important and well written article. The story has to be told, and if little scientists have payed attention (UK, Neetherlands) to methodology or cared about ME/ CFS patients, well it is time that we take matter in our own hands.

    Parvo, you deserve an advocate medal!
  11. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    I'm coming late to this thread but just have to say,

    Thank you, Parvo, for the excellent sleuthing! Splendid work.

    And thank you, Dr. Yes, for the laughs! I thought your post was hilarious. Sometimes laughter is our only medicine, hmm? Especially with all the Medicare Part D formulary restrictions! :tear:

    Now, both of you go get some well-earned rest!
  12. sproggle

    sproggle Jan

    Teesside, England UK
    :victory: Thank you Parvo, you are truly a champion!! :victory:

    :victory: :victory: :victory: :victory: :victory: :victory: :victory: :victory: :victory:

    P.S. Dr Yes while sometimes being rather worrying, is always funny!! :tear:
  13. parvofighter

    parvofighter Senior Member

    Hi Carla, Any chance you can connect with the journalist who wrote the piece? What are the chances to get a reaction from the University Hospital Nijmegen administration? Or to send them the link? Also, Swanink, Galama, and van der Meer participated in both the XMRV study, as well as at least one of the source studies. Can we get a reporter to ask them WHY the SAM HILL they used this tired/depressed cohort, rather than a Well Characterized ME/CFS cohort?

    Also FYI everyone:


    To be the world's most influential and widely read medical journal.​
    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.​
    Gotta love that.

    Also - anyone game to get a list of emails of BMJ editors? I have Fiona Godlee's, but I think there might be better places to get productive action (i.e. retraction of the BMJ article). Other media ideas? Great investigative journalists who want to break the story of Scandal at BMJ?

    Back to my dog bed. I'm really paying for this one... back asap.
    (BTW the news in our home that our DOG is now a media hound, with his pic in the Dutch media, eclipses everything else!)
  14. julius

    julius Watchoo lookin' at?

    I'm not sure exactly how I can help, but if anyone needs any help with getting this thing out there, I volunteer.
  15. Carla-nl

    Carla-nl Veteran by now

    Hi Parvo, i'm unable to do this myself on short term, but i've sent out the message to people who speak the language. It might be someone else who reports back on this.

    I think your dog looks great : ) I didn't understand the connection with a dogpicture next to the article when i read it, lol.

  16. starryeyes

    starryeyes Senior Member

    Bay Area, California
    I'm a Parvo Fan too!!! ​

    :victory::victory::victory::victory: :Sign Good Job: :victory::victory::victory::victory:​

    Thank you so much Parvofighter!! Keep fighting the good fight ~ and congrats to both you and your dog. :D
  17. parvofighter

    parvofighter Senior Member

    My shopping list: How you can help!

    Thank you and HELP!

    Hi folks, First of all I want to thank you all for your lovely feedback, and your great ideas on next steps. I REALLY appreciate it. Its kind of nice to feel like the old Parvo again feeling useful. Paying a bit of a price for it tho Let me do another brain dump, and then back out for a bit more..

    My Biggest Concern
    Why did I do all this work? OK, my over-arching concern is that shoddy XMRV/ME/CFS research, such as this BMJ travesty, NOT derail the flow of quality research enthusiasm or funding into XMRV/ME/CFS. Yes, XMRV may be proven to not be it, as the cause of Canadian-criteria ME/CFS. BUT I want that to be proven with science that is above reproach not this unmitigated garbage from the BMJ. I take bad science into ME/CFS VERY personally it is after all our lives were talking about. While scrutiny of XMRV research in the US is laudable that scrutiny MUST extend to ALL XMRV research. I think I made my point that this has not happened yet. And that there are dire problems with the BMJ paper. Imagine not checking to see if the cohort was actually ME/CFS patients! We need to demand a higher standard and we now have something extremely actionable that our advocates can run with.

    What Outcome might we target?:A/

    • Investigation by the institution where the BMJ XMRV research was done Ordinarily it is not the responsibility of the editor to conduct a full investigation or to make a determination; that responsibility lies with the institution where the work was done or with the funding agency. We need to fight for an investigation into whichever institution(s) hosted the BMJ research.

    • Retraction of the BMJ XMRV article due to a severely flawed and misrepresented cohort. In this case, a mere correction will not suffice, because they were using the blood from a cohort that was not ME/CFS. Its like claiming to do a study on puppy blood when in fact the blood comes from parrots. The conclusions of that research are null and void. The whole paper is garbage. Chuck it out.

    • Apology from the BMJ. Heres what the UK Press Complaints says: For instance, if a serious error has been published, a correction or apology in the paper may be required.. From: is definitely the case with this BMJ XMRV paper.
    Based on the extent of error inherent in the BMJ paper (i.e. they were looking for XMRV in the blood of an entirely different cohort), these are achievable and reasonable targets.

    Outcomes Part B
    There is also a part B to Outcomes which is highly relevant to the field of ME/CFS research. The issue of muddy cohorts is nothing new to the patient community. But the fact that such a woeful cohort of non-ME/CFS patients in a research paper ostensibly about ME/CFS - slipped by the venerable Editor in Chief of the British Medical Journal underscores the reality that the medical community can learn a thing or two about due diligence in ME/CFS research. How many other studies on ME/CFS are based on faulty or misrepresented cohorts?

    IF it is ultimately shown that the BMJ paper is outright fraudulent and this would be determined by an investigation then ALL of the previous work by the author(s) of the fraudulent paper will be scrutinized (see part B below).

    Investigation into the validity of previous work by the BMJ authors
    From the Uniform Requirements for Manuscripts Submitted to Biomedical Journals (

    The validity of previous work by the author of a fraudulent paper cannot be assumed. Editors may ask the authors institution to assure them of the validity of earlier work published in their journals or to retract it. If this is not done, editors may choose to publish an announcement expressing concern that the validity of previously published work is uncertain.

    Heres the kicker: we have to move swiftly, and I need you guys to take the ball as much as possible!:Retro smile:

    Why move swiftly?

    • Note from the Press Complaints Commission: We do not generally accept complaints made more than two months after the date of publication (or over two months after the end of direct correspondence between you and the editor, provided that correspondence was entered into straight away).

    • We simply cannot afford negative media on XMRV to derail promising and upcoming XMRV research. The BMJ conclusions based on their severely flawed research paper MUST be countered!

    Speed is everything!

    A Three-Pronged Approach
    I think you can help us with a three-pronged approach. I know many of you are very limited. But ANY help is good help!

    • Get influential people to help us get the word out! Contact our associations (the CAA, the IACFS, etc), connect with friendly press who wrote great pieces on XMRV send this URL as food for a follow-up article. Contact the CFSAC, the credible British ME associations, Medecins Sans Frontiers (part of their job is in addressing health inequity this is an excellent example of that). Think laterally!

    • Get the word out to the media as much as possible. Provide hotlinks to the article (Cort is posting it on the front page, I think). Add comments to blogs with the hotlink. Send a summary (as soon as it is available) to the media). Look up well-written articles on ME and XMRV, and get the emails of the contributors, so we can send them info for this article. Look up investigative journalists, and send them the hotlink Contact the Economist, the BBC, the Wall Street Journal, the NY Times, the UK TV show Meridian Tonight, which did two fabulous exposes on ME they get it! The more they hear from us, the better. Contact Hillary Johnston, and see if she can read the article, and send it on to her contacts @ the NY Times. Lots of ways we can connect with the media!

    • Alert relevant professional bodies that due diligence was not performed on the BMJ article and that the cohort was misrepresented as a well-defined ME/CFS cohort. This includes alerting the host organizations where these BMJ XMRV scientists work; their professional associations; the funding sponsor of the BMJ XMRV paper. I provide some initial ideas on who we should contact.
    We need your help to get email addresses, committee members, etc!

    • Do we contact the authors directly? I have no clue. Comments?

    SPECIFIC JOBS!:Retro smile:

    Ive thought of a few ways that people can help, and while Im refueling my tanks, here are some ideas. Firstly, any and all help would be wonderful. Whether its just providing us with one email address or name even that would help.

    1. Any takers to do a summary? I can do this laterbut it might be many days, based on how Im feeling now. Sooner would be better if someone could step in (at least to do a first draft). I just need to have my batteries recharged first, so help would be great now!. Ive added an Afterword that has some of the key points that were made after the article. Id suggest 2 summaries:
      • A 1-page, single-spaced summary
      • A 400 word summary (I think thats wants needed for a BMJ post?
      • Cover letter
    2. Digging up names of organizations, contact emails of senior officials that well send these findings. From what Ive read, we first should contact the organizations affiliated with or funding the actual researchers. But we also need to connect with Fiona Godlee, top dog at the BMJ, within 2 months of publication of the BMJ XMRV article. I want Ms God to know that we are taking this very seriously. These are some of the key people we need to go after, and we need their email addresses!: PLEASE HELP WITH THIS!

    • Contacts for the targets that Islandfinn identified in post #17 of this thread (page 2 )
    • The departmental bosses and CEOs of institutions of the 3 authors of the BMJ journal who served on both the source paper(s) and the XMRV paper
    • The departmental bosses and CEOs of institutions of the remaining XMRV authors
    • The Peer Reviewers at the BMJ (and their institutions) who pronounced this paper legit
    • The funders of the BMJ XMRV study
    • Fiona Godlee herself; the entire editorial team (There's a list of editorial staff here with their email addresses: - Thanks Catch!)
    • The BMJ Board to whom Fiona Godlee reports
    • The BMJ Ethics Committee
    • The Science editors they need to know that the BMJ rebuttal is severely flawed might they publish an Editors letter on this? We need emails, names, contacts involved with the XMRV Science paper
    If anyones feeling energetic (ha, that's a good one!), could they start up a table or a pretty list so folks can input this info? Thats a nice to have item, not essential tho.

    • UK Press Complaints Commission In addition, is there a champion (an ME advocacy group and/or a prominent individual) in the UK (or elsewhere) who would submit on our behalf a formal complaint to the UK Press Complaints Commission? This would make a HUGE difference to get the BMJ under the gun FAST.
    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. And Ill post some background info below so someone could take that info and run with it. An Introduction to making a Press Complaint can be seen here: And an important note: Complaints have to be judged against the Code of Practice.
    • Other?

    My paws are getting muddy from all this digging. Help! Look, I really think we can do this. The BMJ paper has been proven to be fatally flawed. We can get this sucker retracted! And more importantly, open some eyes to the scientific shenanigans going on in the world of ME/CFS research.
  18. parvofighter

    parvofighter Senior Member



    NB: The British Medical Journal is a journal which agrees to use the Uniform Requirements for Manuscripts Submitted to Biomedical Journals (See BMJ listed here: )


    Uniform Requirements for Manuscripts Submitted to Biomedical Journals:
    Publishing and Editorial Issues Related to Publication in Biomedical Journals:

    Corrections, Retractions and "Expressions of Concern"

    Editors must assume initially that authors are reporting work based on honest observations. Nevertheless, two types of difficulty may arise.
    First, errors may be noted in published articles that require the publication of a correction or erratum on part of the work. The corrections should appear on a numbered page, be listed in the Table of Contents, include the complete original citation, and link to the original article and vice versa if online. It is conceivable that an error could be so serious as to vitiate the entire body of the work, but this is unlikely (HA!) and should be addressed by editors and authors on an individual basis. Such an error should not be confused with inadequacies exposed by the emergence of new scientific information in the normal course of research. The latter requires no corrections or withdrawals.
    The second type of difficulty is scientific fraud. If substantial doubts arise about the honesty or integrity of work, either submitted or published, it is the editors responsibility to ensure that the question is appropriately pursued, usually by the authors sponsoring institution. Ordinarily it is not the responsibility of the editor to conduct a full investigation or to make a determination; that responsibility lies with the institution where the work was done or with the funding agency.
    The editor should be promptly informed of the final decision, and if a fraudulent paper has been published, the journal must print a retraction. If this method of investigation does not result in a satisfactory conclusion, the editor may choose to conduct his or her own investigation. As an alternative to retraction, the editor may choose to publish an expression of concern about aspects of the conduct or integrity of the work. The retraction or expression of concern, so labeled, should appear on a numbered page in a prominent section of the print journal as well as in the online version, be listed in the Table of Contents page, and include in its heading the title of the original article. It should not simply be a letter to the editor. Ideally, the first author of the retraction should be the same as that of the article, although under certain circumstances the editor may accept retractions by other responsible persons. The text of the retraction should explain why the article is being retracted and include a complete citation reference to that article.
    The validity of previous work by the author of a fraudulent paper cannot be assumed. Editors may ask the authors institution to assure them of the validity of earlier work published in their journals or to retract it. If this is not done, editors may choose to publish an announcement expressing concern that the validity of previously published work is uncertain.
    Editors who have questions related to editorial or scientific misconduct may find it useful to consult the excellent flow charts that the Committee on Publication Ethics (COPE) has developed ( COPE, which was formed in 1997, is a forum in which editors of peer-reviewed journals can discuss issues related to the integrity of the scientific record; it supports and encourages editors to report, catalogue, and instigate investigations into ethical problems in the publication process. COPEs major objective is to provide a sounding board for editors struggling with how best to deal with possible breaches in research and publication ethics.

    Journals that agree to use the Uniform Requirements (Such as the BMJ) are encouraged to state in their instructions to authors that their requirements are in accordance with the Uniform Requirements and to cite this version. Journals that wish to be listed on as a publication that follows the Uniform Requirements should contact the ICMJE secretariat office.

    :Retro smile:
  19. parvofighter

    parvofighter Senior Member

    Some background on targets for action


    FROM :


    • The press must take care not to publish inaccurate, misleading or distorted information...

    • A significant inaccuracy, misleading statement or distortion once recognized must be corrected, promptly and with due prominence, and - where appropriate an apology published.

    • The press, whilst free to be partisan, must distinguish clearly between comment, conjecture and fact.
    Opportunity to reply

    • A fair opportunity for reply to inaccuracies must be given when reasonably called for.

    The public interest ( I believe our complaint would fall under Public Interest)
    There may be exceptions to the clauses marked * where they can be demonstrated to
    be in the public interest.

    The public interest includes, but is not confined to:

    • Detecting or exposing crime or serious impropriety.
    • Protecting public health and safety.
    • Preventing the public from being misled by an action or statement of an individual or organisation.

    The Press Complaints Commission is an independent body, which has been set up to examine complaints about the editorial content of UK newspapers and magazines (and their websites). We are here to help you and our services are free.

    Please remember, however: Complaints have to be judged against the Code of Practice.

    Please remember that we are happy to offer informal advice prior to you lodging an official complaint. Contact us any time. E-mail:

    Complaints have to be judged against the Code of Practice. Before making your complaint we strongly advise that you consult the Code. If you need help in doing this, please contact us for assistance;
    We normally accept complaints only from those who are directly affected by the matters about which they are complaining.

    We do not generally accept complaints made more than two months after the date of publication (or over two months after the end of direct correspondence between you and the editor, provided that correspondence was entered into straight away). If the article remains available on the publication's website, this rule does not usually apply.

    Our Complaints Procedure
    When making a complaint please send us a copy of the article in question (if there is one) and a letter or email outlining your concerns. If there are other relevant letters or documents which would help us to assess the complaint, please send us these as well. For us to take your complaint forward it will need to engage one or more of the numbered Clauses of the Code of Practice. We can send you a hard copy of the Code if necessary.
    Checklist - what to check before sending in your complaint:

    • Have you sent us a copy of the complete article, if available, and a note of the publication date?

    • Have you told us the name of the publication concerned?

    • Have you provided us with a brief summary of your complaint which explains how you believe the article has breached the Code of Practice?

    • Have you included copies of relevant documentation (e.g. any previous correspondence with an editor etc)? (AND YOU CAN USE MY ARTICLE AND THE AFTERWORD)
    1. Assessing your complaint
    If your complaint falls within our remit - and is neither delayed nor subject to related to legal proceedings - we will assess whether it raises a possible breach of our Code of Practice. If we think it does not, we will explain why. If we think it does, we will initiate an investigation by writing to the editor of the relevant publication.

    2. The investigation
    When we write to the editor we will send him or her a copy of your complaint and a copy of the article about which concerns have been raised. We will ask the editor to respond to your complaint and a copy of his or her reply will be sent to you. It if still appears that there may have been a breach of the Code, our primary aim will be to a find a satisfactory resolution to your complaint.
    3. Resolution by mediation
    Depending on the seriousness of the case, there are a variety of ways in which complaints can be resolved. For instance, if a serious error has been published, a correction or apology in the paper may be required.
    Alternatively, we can seek assurances about future coverage or perhaps look to have online material amended or deleted. We cannot generally obtain financial compensation. If your complaint is resolved, we will publish a summary of the case on our website. Click here to see examples of complaints that have been resolved to the satisfaction of the complainant.
    4. Taking stock
    If it proves impossible to find a way of settling your complaint the Commission will evaluate the case. It will first decide whether there has, in fact, been a breach of the Code of Practice. If there has, it will decide whether the newspaper or magazine has taken - or offered - sufficient remedial action.
    5. Complaint upheld
    If the Commission concludes that the Code has been breached (and the breach has not - or cannot - be remedied) it will uphold your complaint in a public ruling. The newspaper or magazine is obliged to publish the critical ruling in full and with due prominence. This is a serious outcome for any editor and puts down a marker for future press behaviour.
    Important points to remember
    When we write to the editor we will have to identify you (unless there are exceptional circumstances). If you do not wish for your address details to be passed on to the newspaper or magazine, please say so at the outset of the complaint. However, you may remain anonymous in any public ruling or summary of your case.
    • The Commission can only consider evidence that has been made available to both sides.

    • A summary of every resolved complaint will be published on our website as will the full details of all upheld cases.

    • Even where the Commission does not rule in your favour, a copy of your complaint (and the Commission's decision) will be sent to the editor of the publication in question.

    • All decisions about whether there has been a breach of the Code or about the adequacy of remedial action will be made by the Commission. PCC staff will, however, advise you about likely outcomes.

    • Not all decisions made by the Commission are made public. However, all upheld complaints and other case which raise an important point of principle are made public, and can be seen here.

    NB: Do you know an individual or responsible ME organization who could file a complaint to the UK Press Complaints Commission on our collective behalf? PLEASE contact them!
    Or would you do this yourself for us? Or would someone start to fill out a form if there is one? Start a letter? Etc...? Lets get this ball rolling!

  20. Countrygirl

    Countrygirl Senior Member

    Sadly, I have no time just now, but somewhere on this forum we have Professor Malcolm Hooper's e-mail address. I suggest we get him and Margaret Williams on board fast. Dr Vance Spence head of MEResearchUk (Dr Neil Abbott, MERUK's spokeman described XMRV as a 'stunning find' and they are undertaking the Swedish research project into XMRV) might direct us to some useful contacts. He may be able to advise. If his e-mail is difficult to find, I have a contact who is regularly in communication with him.

    Suzy Chapman will no doubt be able to get things moving.....Suzy..are you out there????

    We must not let this opportunity slip by......all of us in the UK must act fast .....

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