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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Researchers personal motivations

Discussion in 'General ME/CFS News' started by Persimmon, Apr 7, 2012.

  1. Wally

    Wally Senior Member

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    Some more names to add to the list

    -Singh
    -Lights
    -Lapp
    -Podell
    -Levine
    -Brewer - worked w/AIDS patients then CFS patients
    -Kogelnik - worked w/Montoya at Stanford
    -Dantini - ear, nose & throat doctor who came down with illness
    -Mikovitz
    -Ruscetti
    -Levy - AIDS Researcher who also did research on CFS
    -Vernon - ? her brother has the illness
    -Natelson
    -Bastien - Neuropyschologist whose son developed the illness
    -Staci Stevens
  2. SickOfSickness

    SickOfSickness Senior Member

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    Yes, I saw a doc who had it themselves. They listen because they want to learn more. Anything you found helpful or heard of.
  3. CBS

    CBS Senior Member

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    Western US
    -Singh - recruited by Dr. Bateman - after meeting patients, was convinced of potential severity and need to study ME/CFS
    -Lights, K & A - recruited by Dr. Bateman - after meeting patients, were convinced of potential severity and need to study ME/CFS

    Dr. Bateman has also interested other researchers from the University of Utah and surrounding facilitates: Lisa Albright (Division of Genetic Epidemiology, Department of Internal Medicine, School of Medicine, University of Utah, 5 George E. Wahlen Department of Veterans Affairs Medical Center, Salt Lake City, Utah) and Fred Albright (Pharmacotherapy Outcomes Research Center, Department of Pharmacotherapy, College of Pharmacy, University of Utah) - Lisa Albright is associated with a unique department having assess to one of the worlds most extensive set of genealogical databases (the Utah Population Database- UPDB). As is described in their genetic heritability article, this data base has information 6.5 million people with up to data that is up to 15 generations deep. At least 2.5 million people have data up to three generations deep. The UPDB has been used to identify a number of important genes including BRCA1 and BRCA2, the genes known to associate with susceptibility to breast and ovarian cancer.

    Dr. Bateman's drive to involve other quality researchers has added a lot to the field. The same could be said for the other "original" CFS researchers.
    WillowJ and Persimmon like this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    Great! I had no idea we had this support.
  5. Graeme

    Graeme almost there...

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    Montreal
    If I'm not mistaken Martin Pall had it along with MCS and resolved both.

    Byron Hyde implied to me he has a sort of post-polio syndrome.
  6. mecfspe

    mecfspe

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    If all of "our" doctors/researchers or their kids have me/cfs...what treatment is each using or did any "get well" on? If this was ever posted I missed it. As well, I don't believe I heard any of their testimony at the CFSAC - unless I missed that too?
  7. Persimmon

    Persimmon Senior Member

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    UPDATED LIST:

    (1.) Initially Motivated by Personal Experience:
    Martin Lerner
    - Contracted ME/CFS himself
    Leonard Jason
    - Contracted it himself
    Fred Friedberg
    - Contracted it himself
    Sarah Myhill
    - Contracted it herself
    Byron Hyde
    - His daughter contracted it
    Lucinda Bateman
    - Her sister contracted it (and later Non-Hodgkin's lymphoma, from which she died)
    John Chia
    - His son contracted it (aged 14)
    Kenneth Friedman
    - His daughter contracted it (aged 17)
    Kenny de Meirleir
    - His daughter contracted it
    Shiela Bastien
    - Her son contracted it
    Derek Enlander
    - A childhood friend contracted it & asked him to help
    Rich Van Konynenburg
    - A friend contracted it & he tried to help

    (2.) Initially Motivated by Clinical Experience
    Nancy Klimas (sporadic cases at University of Miami (immunology) clinic)
    Tony Komaroff (sporadic cases at Harvard-affiliated hospital (general med) clinic, starting in 1977)
    Jose Montoya (sporadic cases at Stanford (infectious diseases) clinic)
    David Bell (Lyndonville outbreak)
    Dan Petersen (Incline Village outbreak)
    Paul Chaney (Incline Village outbreak)

    (3.) Persuaded to Get Involved by Another Researcher
    Ila Singh (Lucinda Bateman)
    Alan Light (Lucinda Bateman)
    Kathleen Light (Lucinda Bateman)


    Thanks for all of the contributions. As they've come in, I've tried to add those individuals with an ongoing role in the research debate. I haven't added researchers with periodic involvement via specific projects related to their own labs' interests/specialities (eg Levi; Gallo). I haven't added clinicians unless their work has impacted on the research debate. Researchers who haven't appeared interested in a plausible biological basis of the disease have also been excluded.

    Whether or not these inclusion/exclusion criteria have been perfect, the intent has been to focus on what's initiated the involvement of those who have contributed to constructive research...

    *****

    Does anyone know about:
    Dr Lapp?
    Dr Natelson?
    Dr Kogelnik (did he have any interest being recruited by Dr Montoya?)
    Dr Vernon (does her brother have it?)
    Dr Kerr?

    Can anyone comment on this?
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  8. Wally

    Wally Senior Member

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    Here is information about Dr. Lapp and his involvement with outbreaks in Raleigh, North Carolina. http://drlapp.com/staff/

    I have not been able to locate any reference to Dr. Vernon and a brother. I thought there had been an article or Facebook posting about a brother who served in the military? Or perhaps I have mistaken her with someone else.
  9. Yogi

    Yogi

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    What about Prof Peter Behan and Prof Basant Puri. Anyone know?
  10. Yogi

    Yogi

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    Also Dr Nicole Phillips (Psychiatrist) and Dr Eleanor Stein (Psychiatrist) were sufferers.
  11. allyb

    allyb Senior Member

    Brilliant thread Persimmon


    Professor Hooper is a true hero (as Im afraid we dont have as many here in the UK, especially in the field of research.) though retired, he fights tirelessly to expose and oppose the wrong doings and myths of those (and there are many) who insist on trying to psychologicalise (my new word) our illness and he courageously keeps pulling it back into the realms of biomedical. I have no idea why he came into this arena but I thank our lucky stars he did!!!!


    Id like to add
    Professor Julia Newton (Im not sure how she got into this field but I hope she stays) Check her research work out on these links.

    http://www.youtube.com/watch?feature=player_embedded&v=1ruW8U8MixY

    http://iopscience.iop.org/0967-3334/33/2/231/pdf/0967-3334_33_2_231.pdf

    Kindest regards
    allyb
    NK17 and SickOfSickness like this.
  12. Ember

    Ember Senior Member

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    These comments are taken from a 2009 interview of Gordon Broderick:

    Q: What got you interested in chronic fatigue syndrome research?

    A: I was first introduced to the CFS research community when Dr. Vernon, who at the time was with the CDC in Atlanta, invited me to lecture at the Cold Spring Harbor Laboratory in Long Island. Through discussions with Dr. Vernon and her colleagues I became intrigued by this illness that incapacitates several of the body's major systems simultaneously without leaving so much as a single lesion or other easily observable anatomical trait.

    To be honest, I was also struck by the magnitude of the illness' impact and by how poorly understood it still is. I was also saddened by the stigma often associated with this illness and how poorly equipped physicians are to recognize this as a very real physiological disorder. My background and interest in understanding complex systems like the immune and endocrine systems were a natural fit with the clinical scientists active in this field, and we have been collaborating ever since.
    ....

    Q: Can you share personal information about your life? For example, are you married, if so, for how many years? Do you have any children? Pets? Hobbies? Time for anything outside of your research?
    A: I have to smile at this question. Research is indeed a very demanding or should I say engaging mistress. Research is definitely not a pursuit that you can turn off at the end of the day. I have often gotten out of bed in the middle of the night to write down an idea in my lab book to make sure I would remember to pursue it the next day. I am passionate about what I do, and I cannot see myself doing anything else. I'm blessed with a very understanding wife who is also a very busy working through her medical residency in obstetrics....

    Q: Is there anything you would like to add that you feel is important for people to know about CFS?
    A: Only that there is hope. That we understand much more now than we ever did before. And that with the continued advocacy of patients, we can encourage government to support research in this area and find a cure. There is hope.

    http://www.pandoranet.info/gordonbr...chgrantrecipientnewsletterionterview2009.html
  13. Ember

    Ember Senior Member

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    Dr. Bruce Carruthers began his research in this field in the early 1990's because of his clinical experience and because of the stigma attached to the disease. In addition, his love of the research itself brought its own motivation.

    NK17 likes this.
  14. Hope123

    Hope123 Senior Member

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    I've had the pleasure of communicating and meeting some of the researchers/ clinicians listed and on the whole, a great group.

    I'd add:

    Olav Mella - clinical experience/ seeing patients (rituximab researcher from Norway)
    Ian Lipkin - haven't met him but someone said fame-seeking is part of it; fine with me -- the guy is brilliant
    Jay Levy - was involved with CFS more than 20 years ago, may be involved again
    Vincent Rancanciello - (virologist professor and blogger) got involved initially scientifically but probably has been more
    interested because of the e-mails and response he received from sick people


    My impression has been that many researchers/ clinicians/ even some federal officials change their minds when they meet actual people with the illness, which is why attending events like the CFS Advisory Committee meeting in-person or phoning/ writing in testimony is so important. They realize that most of us are just ordinary people trying to get well and not whatever they have heard or thought us to be.
    WillowJ likes this.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Absolutely

    Absolutely right, Hope. Looking at a description on paper of a patient's symptoms is far different than seeing the patients with the sagging eyes, obvious drained body and having di__y spells.

    Dr. Ron Glaser said he got so frustrated with the system that he often wanted to quit the CFSAC, but the testimony of the patients and their horrific stories, gave him the motivation to continue to try.

    Tina
  16. Dolphin

    Dolphin Senior Member

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    Jacob Teitelbaum MD (more a clinician than a researcher) had it or something like it as a medical student as I recall.

    Has it:
    Charles Shepherd MD/equivalent
    Anne Macintyre MD/equivalent
    Ellen Goudsmit PhD
    Vance Spence PhD

    I know one other UK physician/researcher who is interested because of his son (or at least his son has it, maybe the interest was before it?); however, I'm not sure if that's in the public domain.
  17. Persimmon

    Persimmon Senior Member

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    UPDATED LIST:

    (1.) Initially Motivated by Personal Experience:
    Martin Lerner
    - Contracted ME/CFS himself
    Leonard Jason
    - Contracted it himself
    Fred Friedberg
    - Contracted it himself
    Sarah Myhill
    - Contracted it herself
    Charles Shepherd
    - Contracted it himself
    Vance Spence
    - Contracted it himself
    Byron Hyde
    - His daughter contracted it
    Lucinda Bateman
    - Her sister contracted it (and later Non-Hodgkin's lymphoma, from which she died)
    John Chia
    - His son contracted it (aged 14)
    Kenneth Friedman
    - His daughter contracted it (aged 17)
    Kenny de Meirleir
    - His daughter contracted it
    Shiela Bastien
    - Her son contracted it
    Derek Enlander
    - A childhood friend contracted it & asked him to help
    Rich Van Konynenburg
    - A friend contracted it & he tried to help
    Warren Tate (biochemist & recipient of New Zealand's highest award for scientific achievement)
    - His daughter contracted it (aged 13)

    (2.) Initially Motivated by Clinical Experience
    Nancy Klimas (sporadic cases at University of Miami (immunology) clinic)
    Tony Komaroff (sporadic cases at Harvard-affiliated hospital (general med) clinic, starting in 1977)
    Jose Montoya (sporadic cases at Stanford (infectious diseases) clinic)
    David Bell (Lyndonville outbreak)
    Dan Petersen (Incline Village outbreak)
    Paul Chaney (Incline Village outbreak)
    Olav Mella & Oystein Fluge (follow-up of an enigmatic response to cytotoxic chemotherapy for Hodgkin's disease)
    Charles Lapp (small local cluster outbreaks)

    (3.) Persuaded to Get Involved by Another Researcher
    Ila Singh (Lucinda Bateman)
    Alan Light (Lucinda Bateman)
    Kathleen Light (Lucinda Bateman)
    Gordon Broderick (Suzanne Vernon)

    The list mightn't be perfect. I've tried to include those who've played a role in the research side of ME/CFS, even if they are just clinical MD's who have influenced active researchers - where do you draw the line?

    The point of this thread has been to highlight how so much of the research into ME/CFS has resulted from the involvement of those who have been personally affected by the illness.

    This situation is the norm for rare diseases - people afflicted by rare diseases go through many of the same things we go through: difficulty in getting properly diagnosed; difficulty in finding knowledgeable clinicians; societal indifference; lack of research funding...

    However, this situation is extremely rare for an illness that is as prevalent and as disabling as ME/CFS.
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  18. Persimmon

    Persimmon Senior Member

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    Ron Davis - his son Whitney contracted it (severe case)

    Ron Davis is a very senior geneticist at Stanford
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  19. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Ian Lipkin was looking into Borna virus I think, possibly in CFS (I don't recall), in the late 90s. He didn't find it, if I recall correctly. What he saw though was dysfunctional B cells in our blood. He had an interest ever since, but it was XMRV that brought him on board.

    Having said that he has a mystery illness himself, but doesn't talk about it.
    rosie26 and Valentijn like this.
  20. Persimmon

    Persimmon Senior Member

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    Marcie Zinn PhD has ME/CFS herself

    She is a Stanford neuropsychology researcher who focuses on brain imaging
    NK17 and rosie26 like this.

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