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: http://www.pcc.org.uk/complaints/makingacomplaint.htmlThis 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 (
http://www.icmje.org/publishing_2corrections.html)
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.
- 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
- 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: http://resources.bmj.com/bmj/about-bmj/editorial-staff - 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:
http://www.pcc.org.uk/complaints/makingacomplaint.html. And an important note: Complaints have to be judged against the
Code of Practice.
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.
