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).
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).
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