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

The meeting has just finished. Below are my rough notes, I may not have everything 100% right.

Fred Friedberg started the meeting, clearly setting the culture of the meeting as a top-down exercise. He talked about the energy on the board and that they wanted to convey this to us, the public.

The current board is Fred Friedberg, Lily Chu, Chuck Lapp, Luis Nacul, Sonya Marshall-Gradisenk, Rochelle Tosla, Therese Dowells and Irina Rozenfeld. (apologies for the spelling).

Website
Lily has redone the website - from the brief slide, visually it looks modern and good. It might be worth some of us having a good look at it.

Journal
The IACFSME journal 'Fatigue' - apparently the Medline review, whatever that was, was not positive. The findings are now under appeal. I asked some questions about the journal with the chat Q&A e.g. why is there no process to prevent the publication of harmful papers like the Crawley paper? what happened with the peer review process? And that if the journal was struggling, why persist with it?

Fred replied that if a paper is approved by the peer reviewers, what can they do? They can't censor science. Lily then said that we can't control what other journals do, seemingly not understanding that the question was directed at the organisation's own journal. The fact that the journal published papers taking down PACE in the past was mentioned at least three times - but that's not a reason to keep persisting with a journal now. There are other places where ME/CFS research can be published now. It was suggested that letters be written to the journal providing responses to papers, and feedback on editorial decisions.

Conference
The coming conference is on July 2023. It will only be in-person, not virtual, although there will be recordings. It looks as though Lily is putting in a lot of work again. They would welcome sponsors. Rivka Solomon asked why the conference could not be a hybrid in-person/virtual conference. (A very good question - for an international organisation serving ME/CFS, to not have a virtual option is ridiculous.). The answer given was that it costs too much money.

I'll take a break now, but will add more a bit later. Did anyone else attend? Apart from that one question by Rivka, it seemed that I was the only one asking questions. Pretty much everyone else was thanking IACFSME for their wonderful work. (For the record, I did also thank Lily for her good work on the last conference, and for giving Science for ME the opportunity to produce commentary on the conference.)

Edit to add: Maureen Hansen asked if a policy of mask wearing being required at the conference might be helpful. Lily replied that if someone wanted to wear a mask there won't be anything against it and that she herself might wear a mask.

Also, the IACFSME plan to alternate in-person conferences with virtual ones. The venue for this year's one is Stonybrook again (Fred's university).

 

Thanks Hutan. I agree it's disappointing not making it virtual as well as in person. And I agree about the journal. Thanks for reporting on the meeting.

 

Journal club
Rochelle talked about the virtual journal club, which is a very good initiative. I've been meaning to attend a session, but haven't got there yet. It is co-sponsored by Nova University (Klimas's one). The sessions are recorded and distributed to the journal club mailing list.
14 April - Pavel Zalowska and Kyajowska (sorry my hand writing is awful) from Poland on Cryotherapy and ME/CFS
17 May - Durstenfeld on CPET findings
They want to facilitate in-depth conversations.

Membership
Irina talked about membership. 70% is US; 30% from elsewhere in the world. Most are professional members. There are quite a lot of lifetime members - I didn't record how many but 15 to 20%, who presumably do not contribute membership fees.

Professional membership fees are $125/year - they get to vote.
Associate membership fees (aimed at patients and students) are $50 - they do not get to vote

They want to grow the membership. To do this, they will be surveying the existing members, having an 'invite a colleague' initiative, increasing visibility and engagement. This includes establishing a social media presence e.g. on Linked In. They want to improve the patient and caregiver pages on the website.

I asked why the membership structure is so unwelcoming to patients. The answer seemed to be that they don't really want patients. They said 'We are a professional organisation. We aren't a patient advocacy organisation. We would like to have more patients as volunteers and perhaps on the Board.'

And yes, it's fine for them to be a professional organisation. But, there was some really incredible comments about wanting the organisation to be objective, balanced and science-based, and that that did not necessarily go with having the involvement of patients who might want to be more political. I do hope the people concerned will listen back to those comments, and understand how they came across.

I just don't think they get it - they are an international organisation. A membership fee of US125 is out of reach of many potential members living outside the US, especially in the underfunded field of ME/CFS, and especially given the current low level of benefits delivered. They acknowledge the important role of patients in bringing down PACE, but seem happy with the organisation being 'about you but largely without you, especially if you are from outside the US'.

Financial
Chuck Lapp reported on the finances.
There are $188,000 in assets. There is an annual fixed budget of around $25,000. The journal costs around $4500/year, a part-time admin assistant costs $7000 year, Administration costs $7000/year and the conference cost varies.

Election of officers
This was all a bit opaque unfortunately. Officers have a six year term with scope for a 2 year extension if necessary. That said, Lily has been an officer since 2014 and Fred since 2009. Lily said that she wouldn't mind being regular board member rather than an officer, so that she could concentrate on special projects. That's disappointing, as I was hoping she might become President. People were asked to let the organisation know if you are interested in being on the board. They asked members to vote - but did not say who is standing.

They called for volunteers - contact iacfsmeorg@gmail.com

Aims
Lily reported that they want to
- achieve financial sustainability
- grow membership
- obtain pubmed indexing of the journal
- advocate for research funding
- support clinicians
- educate professionals and public
-be the go to on the science of Me/CFS and related diseases

I asked about the Primer, which is outdated and not evidenced based, I asked when it would be updated and whether it should be withdrawn in the meantime. My question was not answered.

I asked about the promotion of commercial products/treatments at the conference, and that they not only were give a speaking slot which is perhaps ok, but were given multiple exposure opportunities. This question was also not answered.


Input from the audience
Nancy Klimas expressed her thanks to the board and encouraged people to join the organisation. She said that the biggest thing to do now is connect with the Long Covid community.

Lucinda Bateman expressed her thanks.

An anonymous participant expressed enthusiastic support for the Primer (that entirely coincidentally came just ahead of my criticism of the Primer).

I suggested applying for grants e.g. to allow the conference to be virtual. Fred replied that they would if they could, but it's not easy. Another Board member then said that actually they had been successful in getting some grants.

There was some discussion about the fact that there is no funding for replication of studies into biomarkers. Vicki Whittemore replied that actually NINDS has funding opportunities for replication.

**end**

 

On the Medline review of the journal, mentioned upthread
From what I can see, the NIH operates Medline

So, it sounds as though the Medline panel found problems with the Fatigue journal, perhaps deciding to not include it in Medline. And that the IACFSME is now engaging in an appeal process.

 

A reminder that this is coming up later today/tomorrow, depending on your time zone
1 pm New York time 14 April

More info here:
Combination of whole body cryotherapy with static stretching ... reduces fatigue and improves functioning of the [ANS] in CFS, 2022, Kujawski et al
You need to register.

I'm hoping to make it, but I've had a couple of (relatively) big activity days, so it's possible I won't. It would be great to have some S4ME people on the call.

 

From an email dated 11 May:

The President has a recently published paper:
Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study 2023 Friedberg et al

 

Thread on the 2023 conference:
IACFS/ME 2023 Medical and Scientific Conference

 

I wouldn’t want to use my charity contribution to support their conference they have had some dubious participants in previous conferences

 

I agree NP

IACFSME could shut down their journal and save money. People with useful articles about ME/CFS and related topics have many better options. Editorial decisions, such as publishing one of E. Crawley's papers, have caused more harm than good.

While Fred Friedberg is President, I don't think the IACFSME is an appropriate recipient of donations. I certainly would not want to see donations from people with ME/CFS used to fund him to speak.

It's frankly frightening that 'patients, families and clinicians' think the primer is useful. While the 2014 document is not fit for purpose and causes harm, I am not confident that a new primer produced by the IACFSME would be an improvement. We only have to look at the speaker list from recent IACFSME conferences to see that it is probably not true that 'it would benefit everyone if the Primer were updated'.

I'm interested to know why you think this organisation is worth supporting @Tom Kindlon. I think Lily Chu is doing her best to do good things, but, overall, people with ME/CFS would be better off without the IACFSME. Mostly they seem to serve as a source of disinformation.

 

Yes I had forgotten Friedburgs recent “uplifts and hassles” paper
https://www.s4me.info/threads/uplif...prospective-study-2023-friedberg-et-al.33405/

 

From an email update: a new board member for IACFSME:
He sounds good, he has a son with ME/CFS.

"
Dr. Sigurdsson is a hematologist-oncologist based in Iceland who has been instrumental in advancing care and research of ME/CFS in Iceland and Europe. In 2022, he produced an educational film about ME disseminated via Iceland's national broadcasting service (subtitled in English: click "cc" button on lower right corner) and this year, he created Iceland's first ME/CFS specialty clinic supported by their national health care system. He has regularly attended and contributed to IACFS/ME Board Meeting and also attended our last 3 scientific conferences. We are delighted to have someone so accomplished consider joining our Board.

To learn more about Dr. Sigurdsson, read his personal statement below and his recent post about Iceland's clinic on our LinkedIn page. (Don't forget to follow us on LinkedIn for more articles and updates!)

Thanks!IACFS/ME
"