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

[Trish]

Since the main issue seems to circulate around the Parker paper and the journal

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

 

[Hutan]

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.

ME/CFS researchers/ health professionals can learn from other fields and b) People in other fields can learn about ME/CFS

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,

The IACFS/ME was founded in 1990 by Dharam V. Ablashi and Orvalene Prewitt, and was chartered in 1992 as a not-for-profit organization in the state of Oklahoma with the help and financial support of Mr. Edward Taylor, the first Treasurer of the IACFS.

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

 

[FMMM1]

Realistically more like 100 signatures on a good day. Although over 2000 people have signed up to S4ME, there are only about 2-300 fairly active members.

Realistic but maybe 2-300!

 

[Jonathan Edwards]

Realistically more like 100 signatures on a good day. Although over 2000 people have signed up to S4ME, there are only about 2-300 fairly active members.

But signatures could be collected over several good days. I would place a bet that you could get 500 signatures with a bit of effort.

 

[dave30th]

@dave30th is this an instance where a letter from you to the editorial board with multiple professional, organisational and patient/carer signatures might have an effect. I think the so called paper should be withdrawn, since it is blatant advertising without any valid scientific content.

I'm not sure what the best approach is here.

 

[hope123]

To expand access to the 2021 IACFS/ME Conference for patients/ caregivers/ the public, there is now a special registration category for people who want to attend ONLY the patient/ public lecture series on August 19. For registration BEFORE 8/ 12, the price for IACFS/ME members is $50 and for non-members, $65.

2021 IACFS/ME Virtual Scientific Conference

August 19 - 21, 2021, 10:00 AM - 3:30 PM EDT

NEW Registration Option! Patients, caregivers, and the public can now choose to register for ONLY the Patient/ Public Talks August 19 at a discounted price.

To view the full conference schedule and registration fees,

please visit the main conference webpage.

Click to Register Now!

The conference will focus on the biomedical, public health, and behavioral aspects of ME/CFS and associated comorbidities. A portion of the meeting will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care. Attendees at IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, researchers, and educators.

Attendees registering as Patients/ Caregivers/ Public now have 2 options:

a. Choose the Patient/ Caregiver/ Public 3-DAY option. Attend the Patient/ Public Talks on August 19 and the same oral research presentations/ virtual poster sessions as Professionals on August 20 and 21.

b. Choose the Patient/ Caregiver/ Public 1-DAY option. Attend ONLY the August 19 Patient/ Public talks.

All Attendees will receive a Conference program and a month's access to recorded videos corresponding to the talks and presentations they register for. Additional discounts are available for IACFS/ME Associate Members and early registration by August 12, 2021.

Please register as a Professional attendee if you wish to obtain CME credits.

Our exciting, informative program includes:

• Research presentations
• Clinical workshops
• Virtual poster sessions
• Patient/ Public lecture series
• Solve ME Advocacy Updates - August 20, 3:35 PM - 4:35 PM
• Kantor & Kantor long-term disability talk - August 19, 1:00 PM - 2:00 PM

Submit Your Work to Our Peer-Reviewed Journal, Fatigue: Biomedicine, Health, and Behavior

View Resources for Clinicians and Researchers

 

[cfsandmore]

In no way do I wish to support Parker. That includes IACFS/ME who Parker is using as part of his commercial advertisements.

 

[Three Chord Monty]

I have mixed feelings about this but I always wonder when I see that conferences like Invest In ME have BPS types attending/presenting, is there any possibility that they may see evidence they might otherwise not, which might move them to reevaluate. I think the chances are about zero (might not have thought that in the past), but I try to remind myself of that slim possibility instead of getting pissed off when I see them do that.

So I thought about applying that sort of thought process to that LP paper. Not the same thing. And Fred Friedberg is not someone I have any interest in offering the benefit of the doubt.

Took a look at the conference website. One of the presenters is from Radboud, Ruud Raijmakers, who wrote this ("CFS is a disorder of perception," etc.) with Jos Van Der Meer.



According to the website, he's presenting on this preprint:

No signs of neuroinflammation in women with chronic fatigue syndrome or Q fever fatigue syndrome using the TSPO ligand 11C-PK11195

https://www.researchsquare.com/article/rs-348289/v1

I'm fairly sure that's far worse than anything anyone who went to IiME's conference ever wrote. If I viewed IACFSME under FF's guidance favorably or even neutrally, I might feel differently, but way before the LP paper was published I was never going to be interested in contributing in any way towards their org.

 

[Hutan]

One of the presenters is from Radboud, Ruud Raijmakers, who wrote this ("CFS is a disorder of perception," etc.) with Jos Van Der Meer.

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?

 

[Hutan]

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:

Asked about the Lightning Process, Ros was more accepting of it than I would have liked. She said that it is a psychologically based treatment and can help some people if they have underlying psychological distress.

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

My experience is that plenty of patients are happy to go along with the unevidenced idea of a faulty personality. For example, Dr Vallings, NZ's only doctor specialising in ME/CFS and Medical Advisor to NZ's national ME/CFS patient support organisation, has said that people with ME have excitable personalities, have type A personalities and endorsed Partinen's views. Despite a complaint, she has never been censured for that and has been supported to make it impossible for people disagreeing with her to join the ANZMES Board.

At the 2019 ANZMES AGM, I asked what had happened with my complaint about Dr Vallings' statements as a year had passed. The President of ANZMES said that the complaint had not needed to be addressed because Dr Vallings had only been reporting what other researchers had said. At that point Dr Vallings stood up and said that she did stand by what she had said, she does think that there is an 'ME personality'. And still ANZMES has taken no action. Dr Vallings is not only the ANZMES Medical Advisor but every year is awarded scarce ANZMES funds to travel around the world attending ME conferences. She continues to endorse courses where people are encouraged to find the cause of the illness in their personalities.

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.

 

[Hutan]

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.

 

[Amw66]

I have mixed feelings about this but I always wonder when I see that conferences like Invest In ME have BPS types attending/presenting, is there any possibility that they may see evidence they might otherwise not, which might move them to reevaluate. I think the chances are about zero (might not have thought that in the past), but I try to remind myself of that slim possibility instead of getting pissed off when I see them do that.

So I thought about applying that sort of thought process to that LP paper. Not the same thing. And Fred Friedberg is not someone I have any interest in offering the benefit of the doubt.

Took a look at the conference website. One of the presenters is from Radboud, Ruud Raijmakers, who wrote this ("CFS is a disorder of perception," etc.) with Jos Van Der Meer.



According to the website, he's presenting on this preprint:



https://www.researchsquare.com/article/rs-348289/v1

I'm fairly sure that's far worse than anything anyone who went to IiME's conference ever wrote. If I viewed IACFSME under FF's guidance favorably or even neutrally, I might feel differently, but way before the LP paper was published I was never going to be interested in contributing in any way towards their org.

The paper is a misdirection. We did discuss it somewhere on the forum. There is neuroinflammation to be found but mainly in males.
Looking for it in females enables a certain narrative to be maintained.

 

[Simbindi]

A ME/CFS research organisation that decided to call their journal 'Fatigue' sets off warning bells in my head.

 

[Jaybee00]

Post copied to Oxaloacetate

Is this a new thing? Didn’t we hear about this before from some Norwegians making spinach smoothies?

 

[Hutan]

Posts discussing oxaloacetate as a treatment have been moved to
Oxaloacetate

 

[Hutan]

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

 

[Hutan]

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

 

[Hutan]

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.

@hope123, is there any update on this?

 

[Hutan]

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.

 

[Hutan]

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?