A Very Exciting Expert ME/CFS Summit

[RWP (Rest without Peace)]

@Rinareens

Well, we got our wish (for another summary)! Here's Dr. Bateman's video summary. As usual, she does great videos: clear, lots of info, very interesting, etc. Also, congratulations to Dr. Bateman for her recent award!

RWP + PWR

 

[Rinareens]

@Rinareens

Well, we got our wish (for another summary)! Here's Dr. Bateman's video summary. As usual, she does great videos: clear, lots of info, very interesting, etc. Also, congratulations to Dr. Bateman for her recent award!

RWP + PWR

Thanks so much for sharing!

 

[Rinareens]

bump

 

[Binkie4]

Curious to know who was speaking, or what was being discussed, when the first photo above was taken. At least 2 of the 4 gentlemen (Chia & Peterson, I believe) in the pic’s body language suggests skepticism...or I could be overinterpreting the crossed arms/leaning back thing . Maybe someone was presenting the “state of the art” of ME/CFS care in the UK?

In the next photo, Dr Peterson seems to be looking at his phone!

 

[Butydoc]

In the next photo, Dr Peterson seems to be looking at his phone!

Dr. Peterson was looking at his data that he presented to the group. All of the participants were fully engaged and enthusiastic. Very unique meeting.

 

[perrier]

Dr. Peterson was looking at his data that he presented to the group. All of the participants were fully engaged and enthusiastic. Very unique meeting.

Dear Dr. "Butydoc."
When do you think there will be something concrete for the severely ill? They cannot withstand the non stop symptoms day after day, year after year, with no reprieve. I don't wish to put you on the spot; that would not be fair. But maybe there is something you 'can' share.

 

[Navid]

Did you talk about the small Cortene trial being done at Bateman/Horne?

 

[wingate]

Again, what an interesting summit. So great to see all of the clinicians joined together in person, and so very important to have the clinical side of things complement the research.

Thanks, @Rinareens and @Butydoc for updating us. And a big thanks to all the volunteers who helped make the summit happen.

It was great to watch Dr. Bateman's video, @RWP (Rest without Peace). What a well-spoken, thoughtful, and kind advocate we have. I await seeing what comes of this and future summits.

 

[Butydoc]

Dear Dr. "Butydoc."
When do you think there will be something concrete for the severely ill? They cannot withstand the non stop symptoms day after day, year after year, with no reprieve. I don't wish to put you on the spot; that would not be fair. But maybe there is something you 'can' share.

The focus of the meeting wan't about ongoing research so this wasn't discussed, but I did see a lecture by Dr Ron Davis form the the department of biology at the University of Utah just before the meeting started. It was exciting to see such a laser focused scientist explain some of his ongoing research. Now that he has 5 millions dollars donated from the Pineapple fund I do feel his research will bare fruit in the near future.

 

[Rinareens]

Did you talk about the small Cortene trial being done at Bateman/Horne?

The Cortene trial was not discussed at this summit. This was a very productive meeting with a shared mission to find the best way to train other clinicians about recognizing, diagnosing and treating symptoms of ME/CFS.

 

[raghav]

I feel quite positive about the filgotinib drug trial, which KDM is supposed to conduct. Hope it goes through. The reason why i am positive is without calming the immune storm in the intestines you cannot solve this problem just by running after one cytokine or the other. Intestine is the place where these inflammatory chemicals need to be halted like bouncers in a bar. Then the system will set itself right.

 

[perrier]

I feel quite positive about the filgotinib drug trial, which KDM is supposed to conduct. Hope it goes through. The reason why i am positive is without calming the immune storm in the intestines you cannot solve this problem just by running after one cytokine or the other. Intestine is the place where these inflammatory chemicals need to be halted like bouncers in a bar. Then the system will set itself right.

Can you say more about this drug? Has KDM tried it on patients?

 

[Stretched]

All niceties granted, I hate to be the fly in the ointment but the information emanating from this meeting doesn’t appear too far removed from the early 1990’s, which was a more active time.

Maybe a good aim for this group would be to identify and motivate a new troup to take up the cause. As one poster noted these supporters are aging and approaching retirement. Then what?

 

[Rinareens]

All niceties granted, I hate to be the fly in the ointment but the information emanating from this meeting doesn’t appear too far removed from the early 1990’s, which was a more active time.

Maybe a good aim for this group would be to identify and motivate a new troup to take up the cause. As one poster noted these supporters are aging and approaching retirement. Then what?

Good point Stretched. You might be interested in this blog, written by Stephanie Griffin of the Bateman Horne Center, that addresses this directly as one of the goals of the summit. In addition, note the link to the write up of this symposium which was published by Miriam E. Tucker for Medscape, a website providing access to medical information for clinicians and the general public.

https://batemanhornecenter.org/consensus-driven-cfs-clinician-coalition-takes-shape/

 

[Stretched]

Good point Stretched. You might be interested in this blog, written by Stephanie Griffin of the Bateman Horne Center, that addresses this directly as one of the goals of the summit. In addition, note the link to the write up of this symposium which was published by Miriam E. Tucker for Medscape, a website providing access to medical information for clinicians and the general public.

https://batemanhornecenter.org/consensus-driven-cfs-clinician-coalition-takes-shape/

Good summary. ‘Look forward to seeing their #1 objective:

• Summarize key diagnostic and treatment methods and the science that supports them. The intent is to produce a paper for publication in a peer-reviewed medical journal to inform current and future medical providers.

 

[Sushi]

Maybe a good aim for this group would be to identify and motivate a new troup to take up the cause. As one poster noted these supporters are aging and approaching retirement. Then what?

It is ironic that we have a few members here who are in medical school with the intention of becoming part of this new troupe to take up the cause. But, they have to get well enough to complete training and then to practice!