Scandal in BMJ's XMRV/CFS Research

[fred]

A champoin/figure head could surely be Professor Malclom Hooper? He has certainly earned his spurs for the ME Community and he a worty advocate who, if he is not snowed under, might act as figurehead.

Can anyone think of a better person.

C,G,

I would suggest Prof Hooper too. Perhaps he may be able write to the BMJ editor and the incoming BMA President directly. I dare say either he or Margaret Williams would be able to write an eloquent summary of Parvo's analysis - but perhaps one of us may have to do that in order to speed the process.

@Julius - thanks for your compliment - and I have tried to log the material in my head but it is simply not sticking :headache: If someone else is able to write a summary, however, I would be able to proof read, check continuity/grammar/spelling/etc.

Does anyone on this site know Prof Hooper or have any past communication with him?

I fear that the 'main' ME charities would not take up this cause on our behalf - but I would be pleased to be proved wrong. I am sure Invest in ME would wish to help - given the time and resources - but would ME Research UK, given that their own XMRV study in Sweden is not yet published?

Another (perhaps rhetorical) question: would the BMJ/BMA take more notice of a medical professional, perhaps one of their own membership, than a group of patients making a formal complaint? It's not that I am suggesting we don't write, if we wish, but only that we may need more than just Prof Hooper to lodge a formal complaint. Do we know any other UK medics who might take up the cause?

I note that the BMA has an international membership and wonder, therefore, if they would take note of complaints written by non-UK doctors. Would ESME also be a potential target group (noting that Dr Kerr is now an honorary member)? And what about the Irish ME Trust?

 

[Countrygirl]

I hereby publicly and deeply apologise for describing our champion, Professor Malcolm Hooper as 'worty'. :Retro redface: Apparently, I have accused him of being a culture for the growth of micro-organisms. :worried:

I have seen him in the flesh....well, some of him...and there was no hint or aroma of wortiness - or should that be wortyness - during the entire two hours I sat behind him. :Retro smile:

 

[Unduki]

Motivation?

Good job! It was really hard for me to follow without breaks; I have to wonder how you managed if you suffer from the fog. Really good job! Thank you, thank you, thank you!

So, what do you think the motivation is for discrediting the WPI study; money, power, control, cover-up, or plain, old, foot-stomping I'm right-ness?

Again, well done!

 

[sproggle]

I hereby publicly and deeply apologise for describing our champion, Professor Malcolm Hooper as 'worty'. :Retro redface: Apparently, I have accused him of being a culture for the growth of micro-organisms. :worried:

I have seen him in the flesh....well, some of him...and there was no hint or aroma of wortiness - or should that be wortyness - during the entire two hours I sat behind him. :Retro smile:

Thank you Countrygirl for your full and frank apology. I believe our champion &hero Professor Malcolm Hooper has a forgiving nature &all will be forgotten now you've retracted the 'worty' statement in question. :tear:

Please no wort related jokes though... I'm certainly NOT thinking of any!! :innocent1:

Jan xx

​

 

[sproggle]

More serious post...

Been trying to get my head round all the BMJ info and have tried to simplify things abit for myself, not sure if this will help others do the same. Goes without saying there may be some massively idiotic mistakes...

BMJ XMRV/CFS Scandal

A Dutch study(Van Kuppeveld et al) of XMRV in ME/CFS has been published in the BMJ and was defined as being a 'well characterized' study.

Quote from Fiona Godlee in BMJ
"The paper by Van Kuppeveld and colleagues is an unusual paper for the BMJ to publish. As our research highlights page explains, we would usually reject a small case-control study examining the prevalence of a virus in 20 year old blood samples..... We and our reviewers also thought it was well done.”

So forgetting that they used 20 year old blood samples and failed to detect XMRV in any of their samples for second...

“Well characterized” implies that the patients studied were robustly and meaningfully comparable to those in the landmark Science XMRV study(which it was attempting to replicate).

Namely:
Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with severe disability, reproducible immune abnormalities, cognitive deficits, prolonged, disabling fatigue, low V02 max, and multiple longitudinal measurements of clinical and laboratory abnormalities.

Where did the Van Kuppeveld cohort come from and how were they defined?

Van Kuppeveld’s cohort description:
"All patients and controls examined in this study were part of a Dutch cohort of 298 patients, which has been described in detail(2 citations provided below). All patients of this cohort fulfilled the Oxford criteria…."

The two papers cited as sources for the patients for the BMJ Van Kuppeveld study were
1. Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, BleijenbergG. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res 1994;38:383-92.
2. Swanink CM, Vercoulen JH, Galama JM, Roos MT, Meyaard L, van der Ven-Jongekrijg J, et al. Lymphocyte subsets, apoptosis, and cytokines in patients with chronic fatigue syndrome. J Infect Dis 1996;173:460-3.

The cohort for the Swanink study were randomly selected from the database of patients used for The Vercoulen Journal of Psychosomatic Research Study. Therefore the entire cohort of the BMJ XMRV study came from the original Vercoulen study in the Journal of Psychosomatic Research.

Van Kuppeveld’s cohort description also reveals that the initial group consisted of 395 self-referred patients. But patients with definite or suspected illnesses causing fatigue were then excluded as were patients taking heart meds (which would include many advanced ME/CFS patients). After the exclusion process the final study sample totalled just 298 patients.

It also reveals there was no mention of post exertional malaise (the pathognomic sign for Canadian-Criteria ME/CFS ) in the patients self reported list of symptoms and only 26% reported recurrent infections. Also noteworthy is that 36% met the criteria for clinical depression.

Conclusion
The cohort for the Van Kuppeveld’s study is in stark contrast to that of the original Science study and the two are not comparable in any meaningful way. The Science study used the Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with multiple longitudinal measurements of clinical and laboratory abnormalities . The Van Kuppeveld study used the vague Oxford Criteria, excluded all patients with any sign of physical illness and also had a high number of patients with clincal depression.

Will the BMJ retract this study now these facts have come to light?

 

[justinreilly]

Speakers include: Simon Wessely
The Wellcome Trust is the largest charity in the UK spending over 600 million each year to support the brightest scientists with the best ideas. The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing.

Vomit

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[justinreilly]

My twin brother and I applied for a Twin Study...

there's another Cort out there?? :Retro smile: :birthday hat::headache::headache: :scared::scared::Retro smile: :Retro smile::Sign Help::mask: :mask: :worried::worried::victory::Retro redface::Retro smile:

 

[parvofighter]

BMJ and UK Press Complaints Commission submissions sent in

It's DONE!

FYI I just submitted a detailed formal complaint to the British Medical Journal and the UK Press Complaints Commission. Thanks all for the info you have dug up on this thread - I haven't been able to organize it all, but HAVE been quietly sending off a bunch of emails to many of those contacts listed. Sproggle, I greatly benefited from your summary too - thanks!

My heart and PEM have been acting up quite a lot lately, so Ive been writing the BMJ complain in dribs and drabs, and keeping a low profile. Just squeezed the formal complaint in under the wire (2 months from the February 25th publication, UK time is well, about now.:Retro smile I have my doubts, but I dont like to leave loose ends, and after going to all the trouble to research the BMJ piece, it would have been a shame to not try to get some action out of it. Go big or go home, eh? Definitely a David/Goliath situation - not sure if I have David's connection to the big guy upstairs these days, tho.

Bottom line tho, we have been up to bat, and now it's out of our hands... If the complaint gets rejected, I have some Plan B's on media contacts when I'm up to it. There are, after all many ways to skin a cat (says a confirmed hound). I still believe that the BMJ is in a "damned if they do" retract the article, and "damned if they don't" situation, with the balance ever shifting towards "Retract/amend it sooner, or be the laughing stock/scandal of the science world!". Hopefully juicy XMRV/ME/CFS research will continue to trickle/pour in, so that the BMJ is swayed to do the right thing sooner, rather than later.

Thanks to many of you for the PM's while I've been scarce - will get back somewhat more when I'm feeling more human.

Parvo:Retro smile:

 

[Kati]

Thanks very much Parvo. You take good care of yourself now.

 

[Otis]

Thanks very much Parvo. You take good care of yourself now.

What Kati said Parvo. I've been wondering if you were OK (was about to PM to check in) as your presence was missed around here. I know the stress of a deadline can make things worse so take care of yourself.

This is incredible stuff!!

Otis

 

[sproggle]

It's DONE!

FYI I just submitted a detailed formal complaint to the British Medical Journal and the UK Press Complaints Commission. Thanks all for the info you have dug up on this thread - I haven't been able to organize it all, but HAVE been quietly sending off a bunch of emails to many of those contacts listed. Sproggle, I greatly benefited from your summary too - thanks!

My heart and PEM have been acting up quite a lot lately, so Ive been writing the BMJ complain in dribs and drabs, and keeping a low profile. Just squeezed the formal complaint in under the wire (2 months from the February 25th publication, UK time is well, about now.:Retro smile I have my doubts, but I dont like to leave loose ends, and after going to all the trouble to research the BMJ piece, it would have been a shame to not try to get some action out of it. Go big or go home, eh? Definitely a David/Goliath situation - not sure if I have David's connection to the big guy upstairs these days, tho.

Bottom line tho, we have been up to bat, and now it's out of our hands... If the complaint gets rejected, I have some Plan B's on media contacts when I'm up to it. There are, after all many ways to skin a cat (says a confirmed hound). I still believe that the BMJ is in a "damned if they do" retract the article, and "damned if they don't" situation, with the balance ever shifting towards "Retract/amend it sooner, or be the laughing stock/scandal of the science world!". Hopefully juicy XMRV/ME/CFS research will continue to trickle/pour in, so that the BMJ is swayed to do the right thing sooner, rather than later.

Thanks to many of you for the PM's while I've been scarce - will get back somewhat more when I'm feeling more human.

Parvo:Retro smile:

:victory: :victory: Thank you soo much Parvo!!! :victory: :victory:

Glad to have been of some help, I felt terrible I couldn't do more! sure this must have been very hard going for you it was alot of work so hope you manage to rest now &feel better soon

Your an absolute star!!

Jan xx

:Sign Good Job::Sign Good Job:

 

[fred]

Parvo, you are a star. What a supreme effort. Many, many thanks. We are not worthy (or worty), etc.

 

[Athene]

Thank you Parvo. I don't know how to find the right words to thank you for having done something so important, that I (and many others of us) are feeling too pants to do.

 

[Angela Kennedy]

It's DONE!

FYI I just submitted a detailed formal complaint to the British Medical Journal and the UK Press Complaints Commission. Thanks all for the info you have dug up on this thread - I haven't been able to organize it all, but HAVE been quietly sending off a bunch of emails to many of those contacts listed. Sproggle, I greatly benefited from your summary too - thanks!

My heart and PEM have been acting up quite a lot lately, so I’ve been writing the BMJ complain in dribs and drabs, and keeping a low profile. Just squeezed the formal complaint in under the wire (2 months from the February 25th publication, UK time is… well, about now….:Retro smile I have my doubts, but I don’t like to leave loose ends, and after going to all the trouble to research the BMJ piece, it would have been a shame to not try to get some action out of it. Go big or go home, eh? Definitely a David/Goliath situation - not sure if I have David's connection to the big guy upstairs these days, tho.

Bottom line tho, we have been up to bat, and now it's out of our hands... If the complaint gets rejected, I have some Plan B's on media contacts when I'm up to it. There are, after all many ways to skin a cat (says a confirmed hound). I still believe that the BMJ is in a "damned if they do" retract the article, and "damned if they don't" situation, with the balance ever shifting towards "Retract/amend it sooner, or be the laughing stock/scandal of the science world!". Hopefully juicy XMRV/ME/CFS research will continue to trickle/pour in, so that the BMJ is swayed to do the right thing sooner, rather than later.

Thanks to many of you for the PM's while I've been scarce - will get back somewhat more when I'm feeling more human.

Parvo:Retro smile:

Just seen this latest news- Well done for all of this work parvo.

 

[Adam]

Top Forumer

Add me to the long list of thank yous. One of 'our' doers, well...doing something.

:victory::victory::victory:

all the best

Adam

 

[Dr. Yes]

It's DONE!

FYI I just submitted a detailed formal complaint to the British Medical Journal and the UK Press Complaints Commission.

FYI I was about to submit an X-rated informal complaint.

Fine, we'll stick with your boring one.

 

[Uno]

Goodness Parvo that's some analysis of the situation out there, nice work! Sorry I haven't been involved at an earlier stage but I've been frantically challanging the Department of Health over the whole saga...needless to say they are not interested. BUT...

I spoke to Professor Hooper last week on the telephone. He did say that he is snowed under at the moment but it's worth a go. He did mention that something is going on behind the scenes in Wessely's camp...that they were rallying their legal teams around. What this means I cannot hazard a guess but one by one they will fall.

I don't post on here very often I have to admit which is a bit slack. Those who don't know me..I am The Resistance, bringing together the M.E community and creating a full scale uprising to boot out the psychs and get real treatment and research for our cause.

The main focus of my ideas is to raise awareness through the media which is proving to be a double edged sword. No journalist will touch the story, be it little local media or the nationals....here's why...

"Such media manipulation is inevitably linked to the suppression of justified concern from a disempowered population, as has been shown to be the case at least two broadsheet Health Editors have confirmed that it is not editorial policy to report biomedical findings in ME/CFS and that they will use only information on CFS/ME that they get from the SMC. Given the fact that Wessely is a member of the SMCs Scientific Advisory Panel, such confirmation is unsurprising".

So how to get around this....I am trying to get a celebrity spokesperson to back the cause. I will not say yet who I have in mind but the idea is to use this person as a means of getting the story in the media.

As the Invest in M.E Conference is coming up - perhaps Parvo could collate all that stuff in a folder or send it to me and I'll give it to Hooper and Williams myself?

Keep checking my site for latest news and developments

http://www.cfstheresistance.com

 

[parvofighter]

Thanks folks

Thanks for the encouragement and it would be cool if the fat lady sang, eh? Somehow, I suspect the submission by the Church of False Illness Beliefs would have been a rollicking one... ah well - we've got the nerdy version. Uno, I'll PM you - would be great if Malcolm Hooper et al could be apprised of this submission.

Must admit, it's GREAT that Drs Coffin and F. Ruscetti have spoken out @ the Prague conference. Their comments very nicely complement the BMJ/Press Complaints Commission submission.

Cheers, :Retro smile:

Parvo

 

[Jerry S]

Take real good care of yourself, Parvo! We miss you.

Jerry

 

[JT1024]

Thanks for all your hard work Parvo!

I was worried about you as well....

Get some well deserved rest!