BPS organizations and structures

S

Solstice

Senior Member (Voting Rights)
I thought it might be worthwhile to have a resource where we can quickly find affiliations and conflicts of interest for researchers of the various BPS groupings.

For instance, Judith Rosmalen who is now the lead of the Dutch biomedical ME Lines project is also the chair of NALK(ALK is synonymous of MUS). And vice president of the EAPM.

There are a couple of questions I'd like input on before I try to start this undertaking.

Is this really a good idea?

Is there already something similar?

What should we register in a thread of this sort and how? What I mean by this is, should I only list organizations. Should I list other ventures like the Oslo declaration or individual papers as well?

And in what manner? Should I go by researcher and list their affiliations. Should I go by organization or should we do both?
 
I can see the point - we need to keep track of them, who they are, what they have done are doing and have been involved with.

Definitely regarding conflicts of interest

And certainly if you imagine that a lot of the different organisations are actually mostly the same people then listing who is in it will also be important too, in order to exemplify that there aren't m number of people in n number of orgs = m x n 'scientists' but actually that e.g. the same 50 scientists 'researchers'/people with jobs in 'the area' have between them created themselves a number of groups.

It is also worth reminding ourselves of the individuals who 'go quiet for a bit' but definitely have strong backgrounds in starting up the whole thing. eg Anthony David is one I can think of in that vein that many newbies mightn't have heard of in recent times when he last was part of an article, yet had a long history in setting up a lot of the BPS stuff and so on when you have a look back.

I also found it fascinating realising that e.g. Paul Garner was at a lot of conferences etc with the Norway crew way before covid

Now quite how easy it would be to list it all and keep on top of it nevermind present the connections...
 
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Solstice said:
Is this really a good idea?
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Yes. I think it's actually a long overdue and important thing to map.

Solstice said:
Is there already something similar?
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Not that I know of.

Solstice said:
What should we register in a thread of this sort and how? What I mean by this is, should I only list organizations. Should I list other ventures like the Oslo declaration or individual papers as well?

And in what manner? Should I go by researcher and list their affiliations. Should I go by organization or should we do both?
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Organizing a heap of info in a clear way can be very challenging. I think you can answer your questions by starting to map these orgs: who is in them, what is their basic aim, and if possible who founded them an when - you'll have an idea of what you're looking at, and from your notes an image will start to emerge, possibly giving you an angle to present this info.

I'm expecting that the Oslo declaration and other papers will be included as products from the orgs and/or stemming from the orgs' aims. And I expect a lot of these orgs form a web stemming from the same origins/people (the EAPM encourages and stimulates the formation of local, regional and national organizations that further the goals of the Association: promoting a psychosomatic approach to health and disease via research, training and education), which means that if correct you'll probably choose to show that structure, but you'll have a better idea of that and if that's necessary when you've looked at the topic and know the situation better.

It helps to fence off your search (e.g. looking at only a select group of people and the orgs they founded/are in in the last 5 years), but I can advise you to make a dumping folder on your computer(s if a communal project) for miscellaneous related or adjacent stuff (e.g. other people or orgs outside your time or location focus), b/c it sometimes turns out to be more important later, and then it's nice to have some of it already available.

Also, although I'm really not the person to give that advise, ahem, keep your project within your limits if possible. Starting out with e.g. mapping the organisations Rosmalen is a part of and posting that on MEpedia is a good start and already a project when you're by yourself and have very limited energytime available. Every bit counts.
 
Ok, I've not been well enough to start this for a while. I don't know how to start a dumping folder on my pc and how to open it up. The way I would structure posts on different organizations would be:

NAME

Stated goals

Members, where members are listed including their other collaborations

Projects:

Papers:

Trials:

Other:

@Trish linked a thread about COFFI so I'll start with them.

Again I'm very open to critiques. If I'm going about this the wrong way I hope people are very direct and to the point with their criticisms, I can take it.
 
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Name of organization: COFFI

Stated goals: The purpose of the Collaborative on Fatigue Following Infection (COFFI) is for investigators of post-infection fatigue (PIF) and other syndromes to collaborate on these enigmatic and poorly understood conditions by studying relatively homogeneous populations with known infectious triggers. Utilising COFFI, pooled data and stored biosamples will support both epidemiological and laboratory research to better understand the etiology and risk factors for development and progression of PIF.

Members: Ben Z Katz,Simon M Collin,Gabrielle Murphy,Rona Moss-Morris,Vegard Bruun Wyller,Knut-Arne Wensaas,Jeannine L.A. Hautvast,Chantal P Bleeker-Rovers,Ute Vollmer-Conna,Dedra Buchwald,Renée Taylor,Paul Little,Esther Crawley,Peter D White &Andrew Lloyd

Projects involving members of COFFI:

Papers:

Trials:

ZonMw project a neurological and immunological comparison between ME/CFS and PIFS (https://www.s4me.info/threads/the-n...nnounced-april-2023.24587/page-18#post-483979) as proclaimed by Ruud Raijmakers

Other:

Deeper dive into COFFI: https://www.s4me.info/threads/coffi...borative-on-fatigue-following-infection.2013/
 
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Name of organization: EAPM

Stated goals: The main goals of the European Association of Psychosomatic Medicine are to strengthen collaboration between researchers, practitioners and teachers in the fields of Psychosomatic Medicine, Consultation-Liaison Psychiatry, and Integrated Care, internationally and to promote a psychosomatic (biopsychosocial) approach to health and disease.

https://www.eapm.eu.com/

Members: Michael Sharpe(President), Judith Rosmalen(Vice-President), Adriana Baban(secretary), Per Fink(vice-secretary), Angelika Weigel(treasurer), Meike Shedden Mora(vice-treasurer), Joanna Rymaszewska(board),
Fiammetta Cosci(board), Peter Henningsen(board), Jordi Blanch(past President), Fritz Stiefel(co-opted board), Cedric Lemogne(co-opted board), Natalie Uhlenbusch(co-opted board)

Projects:

Papers:

Trials:

Other:
 
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I'm wondering if the collaborator bits and the papers/trials involving members of COFFI/EAPM don't boil down to the same thing. For example I could put Raijmakers' project under the papers/trials involving members of COFFI.

*edit*: I adjusted it to name projects. I'm thinking about including projects into other diseases too. Raijmakers has worked on Q-fever for example. Other BPS'ers are making headways into LC and other diseases.
 
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Name of organization: Oslo Chronic fatigue consortium

Statement: The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process.

Members: Tomas Nordheim Alme, Anne Andreasson, Tarjei Tørre Asprusen, Anne Karen Bakken, Michael BJ Beadsworth, Birgitte Boye, Per Alf Brodal, Elias Myrstad Brodwall, Kjetil Brurberg, Ingrid Bugge, Trudie Chalder, Reidar Due, Hege Randi Eriksen, Per Fink(also EAPM), Signe Flottorp, Egil Andreas Fors, Bard Fossli Jensen, Hans Petter Fundingsrud, Paul Garner, Lise Beier Havdal, Helene Helgeland, Henrik Borsting Jacobsen, Georg Espolin Johnson, Martin Jonsjö, Hans Knoop, Live Landmark, Gunvor Launes, Mats Lekander, Hannah Linnros, Elin Lindsäter, Helena Liira, Lina Linnestad, Jon Havard Loge, Peter Solvoll Lyby, Sadaf Malik, Ulrik Fredrik Malt, Trygve Moe, Anna-Karin Norlin, Maria Pedersen, Siv Elin Pignatiello, Charlotte Ulrikka Rask, Silje Reme, Gisle Roksund, Markku Sainio, Michael Sharpe(also EAPM), Ruth Torkildsen, Betty van Roy, Per Olav Vandvik, Henrik Vogt, Hedda Wyller, Vegard Bruun Wyller(also COFFI)

Projects:

Papers:

Trials:

Other:

Deeper dive into Oslo Chronic fatigue consortium: https://www.s4me.info/threads/chron...23-the-oslo-chronic-fatigue-consortium.35388/
 
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Looks good, @Solstice. I think we will find a lot of the same people are members of several organisations, and even if not involved in running the organisations will be signing each others articles, and reviewing each others research papers. I think we'll find there are psychosomatic medicine organisations all around the world, with some international ones as well like the European one you listed.

Then there are the specifically fatigue related ones like Coffi and the recently published Oslo group.

There are organisations of clinicians who treat ME/CFS specifically, like BACME in the UK which probably doesn't see itself as a psychosomatic/BPS organisation, though it definitely was before the 2021 NICE guideline.

Do you want to focus entirely on international groups, or include national ones as well, and do you want to focuse entirely on groups that claim to treat fatigue and ME/CFS, or do you want to include ones that are broader, treating all conditions they claim are psychosomatic?

Perhaps subgrouping might help:

Psychosomatic - International, National

Fatiguing conditions (including PVFS, chronic fatigue, ME/CFS, Long Covid etc) - International, National

ME/CFS specific - psychosomatic, therapy based but claiming not to be psychosomatic, medical

For each organisation, I agree it's worth copying their stated aims, and listing their officers. I'm less sure about trying to list research papers under organisations, as these are usually university based rather than organisation based and their authors may belong to several organisations.
But you could list publications, conference proceedings etc for each if there are any that particularly relate to ME/CFS. That could get unwieldy pretty quickly, so just giving links to their websites is probably better.
 
Trish said:
Looks good, @Solstice. I think we will find a lot of the same people are members of several organisations, and even if not involved in running the organisations will be signing each others articles, and reviewing each others research papers. I think we'll find there are psychosomatic medicine organisations all around the world, with some international ones as well like the European one you listed.

Then there are the specifically fatigue related ones like Coffi and the recently published Oslo group.

There are organisations of clinicians who treat ME/CFS specifically, like BACME in the UK which probably doesn't see itself as a psychosomatic/BPS organisation, though it definitely was before the 2021 NICE guideline.

Do you want to focus entirely on international groups, or include national ones as well, and do you want to focuse entirely on groups that claim to treat fatigue and ME/CFS, or do you want to include ones that are broader, treating all conditions they claim are psychosomatic?

Perhaps subgrouping might help:

Psychosomatic - International, National

Fatiguing conditions (including PVFS, chronic fatigue, ME/CFS, Long Covid etc) - International, National

ME/CFS specific - psychosomatic, therapy based but claiming not to be psychosomatic, medical

For each organisation, I agree it's worth copying their stated aims, and listing their officers. I'm less sure about trying to list research papers under organisations, as these are usually university based rather than organisation based and their authors may belong to several organisations.
But you could list publications, conference proceedings etc for each if there are any that particularly relate to ME/CFS. That could get unwieldy pretty quickly, so just giving links to their websites is probably better.
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Thanks for the comments Trish. My goal is to file them all, national, European and international. I think it's the only way this becomes worthwhile. If there's a Dutch group that's trying to influence perception then it helps being able to link them to a wider international effort. But that's only feasible if we write them all down.

I think BACME is a good example of that as I see Mike Beadsworth is a member there and he's involved with the Oslo consortium as well. The NKCV from NL is another one where people like Bleijenberg, v.d. Meer and others are also part of international networks.

I like the idea of subgrouping too and will try to incorporate it. Your last paragraph is a bit unclear to me. Do you mean I could list publications, conference proceedings for universities? Or was it in reference to the organizations. So for example the Oslo consortium opened with a publication so I would list that in relation to them?
 
Looks like a good start @Solstice !

You could consider simplifying two categories down to

"Projects involving members of X" (where you van cross-reference other orgs as well)

and

"Papers and trials involving members of X"



With COFFI and the EAPM I was missing two key parts:

COFFI states in their objective that "Investigations in these cohorts [by which they mean Q-fever, Lyme and cf after EBV cohorts] suggest that the host (rather than the pathogen) is the key determinant of the persistent illness, but the pathophysiology remains unresolved. "

The EAPM's mission is "To promote an integrated psychosomatic (biopsychosocial) approach to health and disease."and to do so via research support, teaching and training, education, providing a forum, advising national and European organizations, and encouragement and stimulation of the formation of local, regional and national organizations which further the goals of the Association.


You might also consider writing a short info text in your own words describing the orgs.
 
Solstice said:
I don't know how to start a dumping folder on my pc
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I hope I'm not misunderstood: there's no such thing as an actual dumping folder. :laugh::x3: I meant that if you have a folder on your computer where you collect your info regarding these orgs, you might want to make one in there labelled something like "miscellaneous", "adjacent stuff", "bits & bobs" where you can drop stuff that is not the core of what you're looking at, but which you still want to keep, for example because it might come in handy or turn out to be important later.

Say hypothetically, as an example, if you would have fenced off your focus on ME/CFS-related bps-ers & orgs, you could drop Raijmakers Q-fever stuff in there. So that if you realize later that it is something you want to add because it is an important part of your core focus, you don't have to find everything from scratch again.

.
 
Solstice said:
Projects:

Papers:

Trials:

Other:
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Trish said:
For each organisation, I agree it's worth copying their stated aims, and listing their officers. I'm less sure about trying to list research papers under organisations, as these are usually university based rather than organisation based and their authors may belong to several organisations.
But you could list publications, conference proceedings etc for each if there are any that particularly relate to ME/CFS. That could get unwieldy pretty quickly, so just giving links to their websites is probably better.
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Solstice said:
Your last paragraph is a bit unclear to me. Do you mean I could list publications, conference proceedings for universities? Or was it in reference to the organizations. So for example the Oslo consortium opened with a publication so I would list that in relation to them?
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Sorry I was unclear. I was trying to respond to your listing of Projects; Papers; Trials. Most published papers by members of these groups will not be a project of an organisation, and is likely to be coauthored by people who are members of more than one of the groups.

I think the Oslo Consortium one published recently seems to be an exception, and not clear whether it's an ad hoc group named in order to give the paper an appearance of weight from an organisation, or is really an established group. The fact that their paper is signed by people not based in Oslo, such as Chalder, Garner, Sharpe and Knoop who are also members of Coffi and probably also of the European psychosomatic thing suggests the Consortium is just a name.
 
Trish said:
I think we'll find there are psychosomatic medicine organisations all around the world, with some international ones as well like the European one you listed.
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The EAPM specifically stimulates the founding of organizations to further the aim of promoting psychosomatics/bps-movement, so I expect a network.

Trish said:
There are organisations of clinicians who treat ME/CFS specifically, like BACME in the UK which probably doesn't see itself as a psychosomatic/BPS organisation, though it definitely was before the 2021 NICE guideline.
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Yes, but I personally think those should only be added if it is found that key figures there are also part of the bps-promoting orgs (like Solstice has found).

Trish said:
I'm less sure about trying to list research papers under organisations, as these are usually university based rather than organisation based and their authors may belong to several organisations.
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Yes, indeed. But they can be listed under a "papers and trials involving members of...." (as I do think it matters that publications are linked to the aims of these orgs.)
 
Solstice said:
My goal is to file them all, national, European and international. I think it's the only way this becomes worthwhile. If there's a Dutch group that's trying to influence perception then it helps being able to link them to a wider international effort. But that's only feasible if we write them all down.
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I agree. I think that would be great if you (or you in collaboration) could manage that.

That's a big project though, so I'd advise to start with a sort of inventarisation, then fence off your parameters based on that (e.g. only European, or a set of people), process that, and then when you're well underway you can add other angles/parameters etc.

I suspect processing and presenting an interconnected network can be challenging, so while filing them "all" would be a great goal, it's also a big undertaking What I would not want to happen for you is that you find yourself with a mountain of good info because you looked for everything, which then becomes a daunting task to process and present because there's so much of it and everything's important (as *cough* that happens to some people).

Again, good luck!
 
Arvo said:
Organizing a heap of info in a clear way can be very challenging.
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It is, but if it gets unwieldy, relationship mapping software would make it a lot easier. Setting projects up always needs a bit of an investment of cognitive energy/capacity, but once you've got started, the software's are usually quite intuitive.

The only type I've used myself are family history apps, but there are others that offer various ways to link and visualise relationships. A friend's husband is doing historical research as part of his PhD programme, and he's found Maltego's Community Edition (which is free) really useful for mapping links.
 
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