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What are the hottest speakers and topics for a conference? Who would you like to see?

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi

We plan to host a conference/information event in Switzerland in the fall of 2012. At the moment the plan is for an event of around 6 hours, so one afternoon. Maybe we could have around 6 speakers.

So i would be interested to know from you, no matter where in the world you are, who do you think would be the most interesting and most important speaker for such an event? Who would you like to see? And what topic would you find most important, most interesting?

The event will be open to everybody, public, PWCs, friends, family, medics, scientists, politicians, media, etc. It will probably not be the biggest thing in the world, so don't expect too much, but if we do it, i would like to have a good event.

The main goal would be to get doctors, medical students, scientists and politicians interested and give them an idea about what ME/CFS is and what the current situation is like. Also we would hope to get some media coverage.

Probably it would be too expensive to have speakers fly over here from other continents, but nevertheless, please mention who's most interesting, no matter where that person lives. There would always be the possibility to have that person record a presentation on video and then play that, for example. Or have some sort of conference call for questions, discussion, etc.

So let me know...

Thanks
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
A recording of a good Mikovits talk would be great, imo. (im in the US) I like the papers of Twisk and Maes; I think they are from Belgium (or the Netherlands); good overall treatment of the organic basis of ME and why Wessely's biopsychosocial model of "CFS" is a fraud; excellent anti- CBT/GET paper. Prof. Malcolm Hooper and Margaret Williams on Wessely's fraud.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Thanks for the inputs. I know people here will probably not be able to attend, but i'm asking to get some good ideas and to know what people are interested in. Mikovits will probably not be on the list at this moment, because we can't take the risk of making our case based on something so controversial that might turn out to have been all wrong. What she has to say is very interesting for PWCs, but i guess the way things are looking at the moment it's not what you want to show to doctors, politicians, etc. If they can prove their case, then of course it will be very different.
 

Enid

Senior Member
Messages
3,309
Location
UK
eric - K de M for treatments for patients - his particular (and tailored combinations depending on tests/findings) do seem to be effective I hear.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Myhill on me/cfs subcategories, which standard tests and treatments are helpful for all and then which specialized tests and treatments may be necessary after standard tests and treatments.

Kdm on identifying and treating variety of bacteria. And how he addresses the die off ..

Pacific labs representative - I don.t know any names

X
 

Anne

Senior Member
Messages
295
Pacific labs representative - I don.t know any names

I too would like to see/hear the Pacific Lab representatives, and I do have names: Christopher Snell and Staci Stevens. They are at the front of one of the most exciting research areas: Exercise Testing in ME/CFS. It is quite likely that the ME/CFS biomarkers aren't going to show up unless you put the patients in Post-Exertional Malaise/Post-Exertional Neuroimmune Exhaustion mode. The Pacific Lab does this, and can measure PEM/PENE.

For the same reason I would recommend Kathleen Light, Alan Light and Lucinda Bateman, who are doing research on another type of Post-Exertional testing: gene expressions. Lucinda Bateman is also one of the most experienced ME/CFS clinicians and does a great talk on treatment.

If you organize an ME/CFS conference, there is a chance that the universities might cover the travel costs for some of these researchers.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Thanks. We will have to look at who covers the costs, we have the necessary budget, but of course we would rather spend it on something else ;-)

You won't believe it, but so far the university where we asked about a room wants to charge us around 600 Euros for one afternoon. If we decide to go for that room we will try to talk with them about that again, beause after all we are a charity and the room is at the faculty of medicine. Welcome to Switzerland :p

What university do you think would cover the travel costs? The one where the researcher works, or the one where the event takes place?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I also think Pacific Lab and the Lights are interesting. Me, personally, i'm more interested in looking for the cause of the problems, but they seem to have made some promising findings. As far as treatment goes, KDM would also be one of my favourites. Lipkin and Montoya might impress a lot of people.
 

Sam Carter

Guest
Messages
435
Hi

We plan to host a conference/information event in Switzerland in the fall of 2012. At the moment the plan is for an event of around 6 hours, so one afternoon. Maybe we could have around 6 speakers.

So i would be interested to know from you, no matter where in the world you are, who do you think would be the most interesting and most important speaker for such an event? Who would you like to see? And what topic would you find most important, most interesting?

The event will be open to everybody, public, PWCs, friends, family, medics, scientists, politicians, media, etc. It will probably not be the biggest thing in the world, so don't expect too much, but if we do it, i would like to have a good event.

The main goal would be to get doctors, medical students, scientists and politicians interested and give them an idea about what ME/CFS is and what the current situation is like. Also we would hope to get some media coverage.

Probably it would be too expensive to have speakers fly over here from other continents, but nevertheless, please mention who's most interesting, no matter where that person lives. There would always be the possibility to have that person record a presentation on video and then play that, for example. Or have some sort of conference call for questions, discussion, etc.

So let me know...

Thanks

Props to you, Eric, for organising a conference! I know how much effort this will take from someone with ME.

I would suggest John Chia, the enteroviral researcher, as a good candidate; I'd also love to hear Jay Goldstein speak, although I don't know how active he is these days. Other possibilities would be someone from the Chronic Fatigue Initiative (assuming they actually fund ME research rather than "chronic fatigue" studies) and maybe Ian Lipkin if he turns up something useful in his pathogen hunt.

One thing you might want to consider is allowing some of the speakers to deliver their presentations "remotely" (ie. via some kind of live video-stream). This would lose the intimacy of having someone actually there, but I think it would maximise your chances of attracting the very best in the field. It might also make the event cheaper to finance.

Good luck and keep us posted!

Sam
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Thanks, Sam. It's not me alone, of course. It's the association who will host it (Verein CFS Schweiz), we are around 5 people working on it, currently.

I've also thought about the CFI, they are one of my favourites, even. I would like to have a couple of live speakers, these will probably be Europeans, and then a couple of video presentations from overseas people. Most will of course be clinical and research stuff, but i also would like to have the funding/organising research part covered, i think this is one of the most important topics, and i think the CFI would be a very good example to present here.