International: IACFS/ME - International Association for CFS/ME, IACFSME

It would also be worth you and the organisations' leaders and journal editors reading this blog post by Professor of Psychology, Brian Hughes:
https://www.s4me.info/threads/explo...by-phil-parker-et-al.16323/page-2#post-283331

It is also worth noting that the Norwegian ethics authority has refused ethics approval to a LP study.
https://www.s4me.info/threads/light...by-ethics-committee.14876/page-27#post-348449

 

I would hope that everyone on the IACFS/ME board and the 'Fatigue' Editorial Board would be appalled at the publication of the LP paper, and be checking the Editorial Policy and criteria for the selection of peer reviewers, and putting the issue on the agenda of their next meetings. Surely it's a clear enough problem that it does not take people outside the organisation to prompt action? We all have better things to do than trying to sort out why this happened and what needs to be done to stop it happening again.

Personally, I'd be wondering if the IACFS/ME actually needs its own journal in 2021 and beyond. It's not a high profile journal, and increasingly ME/CFS and ME/CFS-like Long Covid research is finding a place in more prestigious journals. The rationale given for an IACFS/ME journal titled 'Fatigue', i.e.

doesn't really hold water. In this era of the internet, ME/CFS researchers can easily learn from other fields without have to read 'Fatigue', and people in other fields are not particularly likely to read the Fatigue journal. To me, supporting good ME/CFS researchers to publish in a range of high quality journals is far more likely to move the understanding of ME/CFS forward.

@hope123,

Could you let us know where and under what name the organisation is registered now please?

 

Emerge in Australia invited Raijmakers to present at a conference on some research about Q fever fatigue syndrome (it's discussed on the forum somewhere). I remember some of the conference organisers being appalled at him spinning the results as suggesting that CBT had been in any way helpful to the QFS sufferers.

Including BPS speakers does have consequences. A couple of us in the regional patient support group I was involved with pulled in favours to select and send a sympathetic GP to Australia for the Emerge conference. When the GP returned, she gave presentations on what she had learned, which unfortunately included the idea that CBT is helpful in ME/CFS, possibly because the power of the mind reduces inflammation. We had inadvertently given this well-meaning physician incorrect information which she then disseminated with authority.

I tried to discuss the information that Raijmakers presented wth the GP, pointing out that at long term followup, those with the CBT treatment were no better off, and that all that had been achieved was the appearance of a temporary improvement resulting from changes in approaches to survey answering. But, I doubt I changed her mind.

Even just allowing BPS proponents to attend a conference can contaminate attendees who don't yet understand the problems with BPS theories. With that Emerge conference, I remember seeing an exercise physiologist who runs a clinic in Melbourne that 'fixes people with CFS and fibromyalgia with exercise and better thinking' sitting in the front row with a number of his employees. He was involved in the PACE study. The thought of him and his acolytes chatting to people in the tea-breaks makes me shudder.

Of course, it's hard for conference organisers to control who comes along to their conferences. But, I wonder, would the IACFSME conference organisers stop Phil Parker from attending?

 

Dr Vallings, the medical advisor of the NZ ME/CFS patient charity, has been very much involved in IACFSME. She has stepped back from the board, but, until Covid, scarce NZ charity funds were used to send her to the IACFSME conferences. The IACFSME continues to have her prepare very shallow reports of the IACFSME conferences.

She does not condemn the Lightning Process:

She has stated publicly that there is an 'ME/CFS personality':

I had basically written off the IACFSME as any sort of useful organisation. The 2014 primer is an unhelpful muddle of unevidenced beliefs. I assumed (hoped) that they were sinking into obscurity. I have been rather surprised to realise lately that Friedberg is successfully securing funds for research and that so many younger people are involved in the organisation. The publishing of the Crawley Parker LP endorsement means that the organisation is actively causing harm.

If the IACFSME is to be a positive force in ME/CFS advocacy and education, a younger generation of people need to exert some influence, and leave the patronising approach and disregard for science behind.

 

It's disappointing that IACFSME made no public statement about, or relevant to, the publishing of the Crawley paper. There has been no suggestion of an apology or improved processes. No one from the organisation came here to engage with our concerns, or to explain why the Crawley paper actually was science, rather than Lightning Process propaganda.

 

Posts discussing oxaloacetate as a treatment have been moved to
Oxaloacetate

 

We now have a thread for news from the 2021 conference here:
IACFSME 2021 Virtual Conference

 

Posts about an article by Miriam Tucker about autoimmunity (based on findings presented at the IACFSME conference) have been moved here:
IACFSME 2021 Virtual Conference

 

@hope123, is there any update on this?

 

Saliva fatigue biomarker index as a marker for severe ME/CFS in a community based sample, 2021, Jason et al
An article in the IACFSME's Fatigue Journal - it seems to be promoting a commercially available test. There are problems with the definition of 'severe ME/CFS', the abstract, and provision of results, again raising questions about editorial processes and peer review.

 

These are the people on the editorial board of the IACFSME's journal 'Fatigue: Biomedicine, Health and Behavior'.

Founder and Editor
Fred Friedberg, Ph.D., Stony Brook University Medical Center, USA

Associate Editor
Yasuyoshi Watanabe , M.D., Ph.D., Osaka City University, Japan

Editorial Board
Michael Antoni, Ph.D., University of Miami, USA
Gijs Bleijenberg, Ph.D. Radboud University, Netherlands
Simeon Cairns, Ph.D., Auckland University of Technology, New Zealand
Joanna Elson PhD, Newcastle University, United Kingdom
Keith Geraghty, MPH, PhD, University of Manchester, UK
Leonard Jason, Ph.D., DePaul University, USA
Marilynne Kirshbaum, Ph.D., M.Sc., RN Charles Darwin University, Australia
Nancy Klimas, M.D. Nova Southeastern University, USA
Charles Lapp, M.D., Hunter Hopkins Center, USA
Oliver Minton, Ph.D., St George’s University of London, UK
Sonya Marshall-Gradisnik, Ph. D., Griffith University, Australia
Julia Newton, M.D., Ph.D. Newcastle University, UK
Thomas Raslear, Ph.D. Federal Railroad Administration, USA
Leorey Saligan, PhD, RN, CRNP, National Institutes of Health, USA
Boudewijn Van Houdenhove, M.D., Ph.D., University of Leuven, Belgium
Ann Williamson, Ph.D. University of New South Wales, Australia

Surely there is someone on that list who has concerns about the journal and is willing to do something about it? If not, then what steps is the Board of the IACFSME itself taking to improve editorial decision-making and processes?