• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PACE trial commentaries in the Journal of Health Psychology to be made open access

charles shepherd

Senior Member
Messages
2,239
PACE trial commentaries in the Journal of Health Psychology to be made open access - thanks to the MEA!

Following an exchange of correspondence with David Marks, editor of the Journal of Health Psychology, it has been agreed that ALL of the JHP commentaries on the PACE trial will be made Open Access at no charge to the authors

Correspondence below

Dr Charles Shepherd
Hon Medical Adviser, MEA
March 28th 2017

Dear Charles,
Thank you for your email and your helpful suggestion.

I am pleased to inform you that all PACE Trial Commentary papers will be on Open Access at no charge to the authors.

This generous and insightful decision on the part of SAGE Publications will greatly facilitate the open discussion and debate of the PACE Trial that we are conducting in JHP.
Please kindly inform interested parties in your network.

With best wishes,

David Marks

David F Marks PhD
Editor
Journal of Health Psychology
Health Psychology Open

March 23rd 2017

Dear David
As the JHP PACE trial commentaries are now starting to appear on-line there is, not surprisingly, a great deal of interest from people with ME/CFS in seeing what the commentators have to say

Unfortunately, as the full content is not open access, all people can read are the 100 word abstracts

I'm sure we both agree that the numerous controversies surrounding the PACE trial are a very important issue affecting people with ME/CFS, clinicians and researchers, and that it would be really helpful if there could be open access to the complete commentaries

The MEA has recently paid for open access to the Wilshire et al PACE trial data re-analysis paper:
http://www.meassociation.org. uk/2017/03/thanks-to-the-mea- you-can-now-read-the-whole- independent-re-analysis-of- the-pace-trial-recovery-paper- 22-march-2017/

But this is not something that we want to repeat - when our main duty as a small medical charity is to use our very limited financial resources to advise and support people with this illness and to fund much needed biomedical medical research into ME/CFS

So I'm basically asking if there is some way in which the full commentaries could be made open access - without any great expense being involved

Or, in the case of the one that I prepared with my MEA hat on, could the charity publish this on our website and in our magazine in view of the fact that the preparation involved quite a lot of work and this was done without any fee being paid

Kind regards
Charles Shepherd
 

charles shepherd

Senior Member
Messages
2,239
Further update from David Marks below - Open Access will also now include Keith's editorial and the PACE trial authors' response

From the editor of JHP:

I wanted to let you know that SAGE Publications have agreed to place all the commentary papers plus Dr Geraghty's editorial and PACE Trial authors' response on open access.

This will greatly enhance reader access with no paywall.
 

Diwi9

Administrator
Messages
1,780
Location
USA
This is a big deal. Redemption is in sight. So much unnecessary suffering for years and years. My heart breaks for my fellow sufferers in the UK, as if the disease isn't cruel enough. I hope this news will give us all a little smile that the fraud is being exposed and the truth will prevail.
 

user9876

Senior Member
Messages
4,556
I gather my PACE commentary piece is now published although I have not tried to track it down on the net yet.
Its here
PACE team response shows a disregard for the principles of science


Jonathan Edwards
http://journals.sagepub.com/doi/full/10.1177/1359105317700886

Abstract
The PACE trial of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome/myalgic encephalomyelitis has raised serious questions about research methodology. An editorial article by Geraghty gives a fair account of the problems involved, if anything understating the case. The response by White et al. fails to address the key design flaw, of an unblinded study with subjective outcome measures, apparently demonstrating a lack of understanding of basic trial design requirements. The failure of the academic community to recognise the weakness of trials of this type suggests that a major overhaul of quality control is needed.
 

Kati

Patient in training
Messages
5,497
@Jonathan Edwards I just readed your piece, and I am so very grateful you wrote it, bravo!!!

Here is my favorite paragraph:
I think it is a matter of concern that White et al. (2017) reject out of hand the possibility that the ‘actions [of the PACE authors] have arguably caused distress to patients’. They have. Distress is very evident among the patient community, as much as anything in terms of the insult to their intelligence made by insisting that seriously flawed research is in their interest. I have no doubt that most CFS/ME patients in the United Kingdom would want to campaign to preserve services, but it seems disingenuous to suggest that this is because they want more CBT and GET. If they are still ill, presumably these approaches have failed and the priority is to find something more effective.

Thank you so very much!
 

user9876

Senior Member
Messages
4,556
I gather my PACE commentary piece is now published although I have not tried to track it down on the net yet.

In the article you talk about the trial being open label and judged by subjective measures. I would say with the PACE trial it is worse than that. CBT and GET aim to change the way patients think about their symptoms and what they can manage. So judging their success on whether they change subjective measures is a bit like testing you used the right drug.