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A Very Exciting Expert ME/CFS Summit

Discussion in 'General ME/CFS News' started by Rinareens, Mar 4, 2018.

  1. Rinareens

    Rinareens

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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.
    IMG_0661.jpg IMG_0674.jpg IMG_0678.jpg IMG_0664.jpg IMG_0633.jpg IMG_0638 2.jpg IMG_0669.jpg
     
    pibee, CJB, simeyss and 36 others like this.
  2. Sushi

    Sushi Moderation Resource Albuquerque

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    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....
     
    alkt, Countrygirl, Shoshana and 15 others like this.
  3. AdamS

    AdamS Senior Member

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    Great news and fantastic to see so many great minds working together to help us!
     
  4. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    We need more concensus on experts on the field and present a more united front! So this is good!
     
  5. wingate

    wingate

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    Fantastic. Thanks for sharing, Rinareens.

    I recognized so many compassionate and smart physicians and scientists in your pictures, all working to help.

    May progress continue swiftly.
     
    alkt, AdamS, KristenSF and 6 others like this.
  6. Diwi9

    Diwi9 Administrator

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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.
     
    anni66, jpcv, Murph and 11 others like this.
  7. KristenSF

    KristenSF

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    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! :)
     
  8. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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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
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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

    I agree and it is the clinicians who are on the front lines in the trenches.

    Agreed and seeing our doctor in those photos made me smile as well.
     
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  10. valentinelynx

    valentinelynx Senior Member

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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?
     
    Countrygirl likes this.
  11. Butydoc

    Butydoc President

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  12. Rinareens

    Rinareens

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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.
     
  13. raghav

    raghav Senior Member

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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 !
     
  14. Pink

    Pink Senior Member

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    I'd love to know if there was any practical outcome from this summit for us to benefit from.
     
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  15. pattismith

    pattismith Senior Member

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    I am thrilled to read this futur article!
     
  16. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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    @Rinareens

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

    RWP + PWR
     
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  17. Countrygirl

    Countrygirl Senior Member

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    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. :)
     
  18. Rinareens

    Rinareens

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    That was discussed at the meeting as a goal, to attract new and younger generation of physicians to the field.
     
  19. Rinareens

    Rinareens

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    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.
     
  20. Rinareens

    Rinareens

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    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.
     

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