A Very Exciting Expert ME/CFS Summit

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A very exciting meeting took place this weekend at the Bateman Horne Center in Salt Lake City. This meeting was a collaborative effort to bring together 11 expert ME/CFS clinicians to discuss diagnosis and treatment of this very prolific and debilitative disease. Their goals were as follows:

1. “ Advance collaboration across experienced US ME/CFS clinicians and propose a
mechanism to support this collaboration over time.”
2. “Provide perspective on what is needed in research from a clinician perspective based on clinical
insight or data. This could include possible illness subsets and significance of successful treatment
interventions and could be delivered as a report or potentially published in a peer-reviewed journal.
3. “Summarize key diagnostic methods and what is currently known about the underlying biology of the
disease and how it informs treatment practices in order to advance care of ME/CFS. The intent is to
produce a paper for publication in a peer-reviewed medical journal."

The 11 recognized experts at this meeting included:

Dr. Ben Natelson Neurologist, New York

Dr. Dan Peterson Internal Medicine, Incline Village, Nevada

Dr.Richard Podell Internal Medicine, Summit, New Jersey

Dr. Nancy Klimas Immunologist, Miami, Florida

Dr. Theresa Dowell Family Nurse Practitioner, Flagstaff, Arizona

Dr. Susan Levine Infectious Disease, New York, New York

Dr. Allison Bested Hematological Pathologist, Miami, Florida

Dr. John Chia Infectious Disease, Torrance, California

Dr. Chuck Lapp Internal Medicine, Raleigh, North Carolina

Dr. David Kaufman Internal Medicine, Mountain View, California

Dr. Lucinda Bateman Internal Medicine, Salt Lake City, Utah

Also in attendance was Dr. Ron Davis, Professor of Biochemistry and Genetics and Director of the Stanford Genome Technology Center. His vision is to discover causes, a molecular diagnosis, and cure for CFS. Also present were Mary Dimmock, co-author of “Thirty Years of Disdain, and Linda Tannenbaum founder of the Open Medical Foundation.

Gary, (Butydoc) , and I, (wife), had the privilege of attending this summit. This was the first time that all of these clinicians were gathered together in one place. They shared their information and experiences with one another in the hope of bringing this disease to the forefront so that more doctors will recognize and understand the illness and be able to better treat and care for the ME/CFS community. The plan for the future is for these experts to get together and brainstorm on an annual basis.
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Sushi

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This meeting was a collaborative effort to bring together 11 expert ME/CFS clinicians to discuss diagnosis and treatment of this very prolific and debilitative disease.
Thank you for this encouraging report, Rinareens. This sort of collaboration is so needed. The fact that it is actually is happening, rather than just being talked about, is a huge boost for patients and clinicians alike. Just knowing that this impressive group is working together to improve patient care--our care--is a hopeful note, and it is hopeful notes like this that give us the boost we need to live out this illness, day after day after day....
 

Diwi9

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Sometimes there is too much value placed on the researcher above the clinician. It is clinicians who paid attention that put this illness on the map and helped formulate diagnostic criteria. This sort of collaboration is exactly what is needed because clinicians who treat this illness can inform researchers about what is observable and reported across the patient spectrum...this seriously warms my heart.
 

Gingergrrl

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Thank you @Rinareens for posting this and for all that you do behind the scenes.

Sometimes there is too much value placed on the researcher above the clinician.
I agree and it is the clinicians who are on the front lines in the trenches.

Thank you, @Rinareens! Seeing all these great minds in one place gives me hope. And seeing my own doctor there has me grinning ear-to-ear! :)
Agreed and seeing our doctor in those photos made me smile as well.
 

valentinelynx

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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 :p. Maybe someone was presenting the “state of the art” of ME/CFS care in the UK?
 
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@Rinareens

Thank you so much for posting this! Was there any video taken, or will there be a transcript or more extensive summary beyond yours?

RWP + PWR
This symposium was quite lengthy and went on for 2 days from 7:30 am until 5:30 pm on both days. I don't believe a video was taken. A major goal of this summit, is to write a journal article that would provide practitioners with basic information on treatment methods. Currently, they are working on compiling all the data. More information to come.
 

raghav

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They should conduct say a one week workshop on diagnosis and current treatment options for physicians, so that more cfs patients can benefit from it. It should be an ongoing effort. This is what Prof. Jose Montoya lamented when he said most cfs experts were ageing or on the verge of retirement. If their knowledge does not percolate down to next gen of physicians then it will be like reinventing the wheel. That should not be allowed to happen.

In India we dont have even one cfs specialist to the best of my knowledge. They just say I am type A personality. BS !
 

pattismith

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This symposium was quite lengthy and went on for 2 days from 7:30 am until 5:30 pm on both days. I don't believe a video was taken. A major goal of this summit, is to write a journal article that would provide practitioners with basic information on treatment methods. Currently, they are working on compiling all the data. More information to come.
I am thrilled to read this futur article!
 
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This symposium was quite lengthy and went on for 2 days from 7:30 am until 5:30 pm on both days. I don't believe a video was taken. A major goal of this summit, is to write a journal article that would provide practitioners with basic information on treatment methods. Currently, they are working on compiling all the data. More information to come.
@Rinareens

Yes, I suspected that. We look forward to reading this! Thank you!

RWP + PWR
 

Countrygirl

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This symposium was quite lengthy and went on for 2 days from 7:30 am until 5:30 pm on both days. I don't believe a video was taken. A major goal of this summit, is to write a journal article that would provide practitioners with basic information on treatment methods. Currently, they are working on compiling all the data. More information to come.
Very encouraging news to read while taking a break from reading the plans in the new MUS clinics in the UK to treat ME with high intensity GET and CBT. :(

I especially like the sound of the journal article. Can I order about 10 000 for the UK please.........at least. :)
 
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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 :p. Maybe someone was presenting the “state of the art” of ME/CFS care in the UK?
They should conduct say a one week workshop on diagnosis and current treatment options for physicians, so that more cfs patients can benefit from it. It should be an ongoing effort. This is what Prof. Jose Montoya lamented when he said most cfs experts were ageing or on the verge of retirement. If their knowledge does not percolate down to next gen of physicians then it will be like reinventing the wheel. That should not be allowed to happen.

In India we dont have even one cfs specialist to the best of my knowledge. They just say I am type A personality. BS !
That was discussed at the meeting as a goal, to attract new and younger generation of physicians to the field.
 
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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 :p. Maybe someone was presenting the “state of the art” of ME/CFS care in the UK?
I actually don't remember what was being discussed at that particular moment. They were very intent on listening to each other to see how each of them were treating the various symptoms of the disease in a variety of ways. This could have been a processing moment.
 
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I'd love to know if there was any practical outcome from this summit for us to benefit from.
This summit was specifically for physicians. Ultimately, patients will benefit as they came together to consolidate their various treatment plans. In addition, the idea is to get more physicians to understand ME/CFS as a real illness, at which time they will know how to treat the multitude of horrific symptoms.