Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

I can't remember who said it, he was someone in the medical establishment at the time of the royal colleges report.

He said that ME was a new type of disease which was not physical or mental but held a strange position between the two.

I felt at the time that you would need extraordinary, conclusive proof for such a bold claim. I was very pleased to see an academic, Dr Hughes, making this point.

Of course, they have used the existence of this strange type of disease in ME to roll it out for lots of other ones now.

 

Code:

https://www.facebook.com/david.tuller.1/posts/10156170275551829

 

I knew I remembered reading more about the planned referral and step up process for IAPT MUS (including CFS/ME). I have found the PDF on my laptop. The link to it is here:

https://www.uea.ac.uk/documents/246...ide-.pdf/55aea215-100e-4925-a968-65d6e89ad9b3

I'll put a link to it in a more appropriate thread when I have the mental energy, but am putting it here now as it will be of interest to those on the NICE group.

Tagging @adambeyoncelowe @Keela Too

Please tag any others who should see this (these are the only 2 names I know from memory)

May be of interest to @dave30th for background to the IAPT MUS agenda

 

I recommend reading:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482658/pdf/10.1177_2055102919838907.pdf

as an antedote to the trauma!

 

A coupon for a capon.

 

Just to be pedantic here, so I fully understand. I think Rebecca Goldin is saying that because half the full trial participants were rolled over from the feasibility study, then selection of the trial participants was not randomised; this is clearly true. But when talking about a RCT, is that the sort of randomisation the 'R' stands for? I thought it was about random allocation to the various trial arms?

 

I'm not really sure what that means either. I wonder if Goldin is used to the term being used differently in another context? Ma6be she meant the participants are not from a random sample as they all volunteered (though that would be odd). The 'controlled' part of the title could be problematic given the poor control intervention.

 

Two more letters to Dr Godlee. The first is from Philip Stark, a professor of statistics at Berkeley. The second is from Robert Garry, a virologist at Tulane.

*****

Dear Dr. Godlee--

I hope you reconsider your decision.

Leaving this paper in place is a disservice to science and to public health--although it does provide a lovely [(negative) example for teaching ethics in science and illustrates how skirting proper statistical practice may lead to erroneous conclusions.

Regards,
Philip

*****

Dear Dr. Godlee,

I am writing to urge you to reconsider the decision to republish the pediatric study of the Lightning Process conducted by investigators from the University of Bristol and published in Archives of Disease in Childhood.

My own perspective is as a virologist, with a long-standing interest in chronic illnesses such as chronic fatigue syndrome. Although I am not a physician, I have met many individuals with these conditions, and have at least one family member that is afflicted. Chronic fatigue syndrome is nota state of mental confusion that can be corrected by the pseudo-scientific incantations of the Lightning Process.

I am sure that you are aware that the International Committee of Medical Journal Editors has stated clearly* that, “The integrity of research may also be compromised by inappropriate methodology that could lead to retraction.”

If there was ever an instance when there was “inappropriate methodology,” this is it.

My recommendation is immediately publish an “Expression of Concern” regarding this multiply flawed study in accordance with COPE guidelines.

I then urge you to consult with other experts outside of the Bristol sphere of influence and follow their guidance.

I am confident that an independent group of experts will come the very same conclusion as the distinguished group copied here - this manuscript must be retracted.

Very sincerely,

Robert F. Garry, PhD

Robert F. Garry, PhD
Professor, Department of Microbiology and Immunology
Assistant Dean, Graduate Program in Biomedical Sciences
Program Manager, Viral Hemorrhagic Fever Consortium
Director, Tulane Center of Excellence, Global Viral Network
Chief Scientific Advisor and Co-Founder, Zalgen Labs, LLC
Tulane University School of Medicine
New Orleans, LA 70118

 

Riiiiiight. Oh, for sure.

Yes, diagnosis is hard, in fact by far the hardest part of medicine. A diagnostic process that takes 10 consults will have 9 concluding no clear diagnosis. What kind of idiot could be confused by this fact? Oh, wait, I'm answering my own question here.

It's also a common attitude to not make a diagnosis of ME or other contested diseases based on a belief that giving it a label is "harmful", further artificially inflating this statistic by deliberately making some consults conclude without a diagnosis, then pointing at this arbitrary refusal as evidence of how common MUS are. This is an ouroboros of error, where past failure is used as evidence for future failure.

The list of names on the committee that produced this document says it all. Moss-Morris, Chalder, White. It's a purely speculative opinion paper about things they wish to be true. What a weird group of people.

 

Did you not spot the names 'Chalder' and 'White' on the member and special advisor list?

 

Hehe, yeah I added it in an edit. Moss-Morris as chair basically makes the process a mockery anyway and the citations are basically a giant circle jerk of self-citation and self-congratulation.

This isn't serious work, it's a wishlist to the universe, if things were as they believed this would be a roadmap but instead they reject reality and substitute their own. But it's being put into practice with no safeguards or monitoring or feedback process or any of this! Madness.

 

It (IAPT LTC and IAPT MUS) is being imposed on every Clinical Commissioning Group across England (by NHS England) - even though many are in financial crisis. I wonder if this is a contributing factor to why journal editors and Cochrane are trying so hard to avoid retracting the relavant trials (including the LP one) and reviews, and why they are not making the corrections that DT keeps pressing for.

 

'Technically' there will be 'monitoring of outcomes and targets', but these have been very cleverly devised to give the appearance of 'over 50% recovery' in keeping with the standard IAPT agenda for anxiety and depression (as have been discussed on other threads). With regard to 'CFS/ME' the 'improvement' will be measured using the Chadler Fatigue Scale. Why do you keep referring to a 'circle jerk'? I have no idea what you mean...

 

Also known as a mutual admiration society where everyone gets a trophy because everyone part of the group is so damn smart for simply being part of the group.

 

It was my homour talking, I did know!

 

Dave blogs the three latest letters (that have been shared already on Facebook and posted above).

http://www.virology.ws/2019/09/16/t...of-letters-to-dr-godlee-on-bjs-lp-study-mess/

 

https://twitter.com/user/status/1173547436968763393

https://twitter.com/user/status/1173596059257454592

 

One might say 'psychiatrist, heal thyself'.

 

Yes, I know Jodi--she's very sharp. I haven't engaged her in this issue, but perhaps I should.