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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Reminder of all the positive things happening in 2014 for ME/CFS

Discussion in 'General ME/CFS Discussion' started by Bob, Jan 11, 2014.

  1. Bob

    Bob

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    England, UK
    I've temporarily been feeling a little defeated/deflated/pessimistic this week, after reading some stupid text and comments about ME/CFS, and also the video interview of Dr Speight.
    To regain a sense that we are travelling in a positive direction of travel, I thought it might be nice to remind ourselves of the positive things that are happening in 2014, in terms of ME/CFS events and research etc.
    If you can think of any, then please add them below.
    Last edited: Jan 13, 2014
    leela, L'engle, justy and 2 others like this.
  2. Helen

    Helen Senior Member

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    L'engle, SOC, Bob and 1 other person like this.
  3. SickOfSickness

    SickOfSickness Senior Member

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    L'engle and Bob like this.
  4. akrasia

    akrasia Senior Member

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    Hi Bob,

    I'll take a thwack at it.

    It's easy to feel demoralized after contemplating the damage done by White et al. or watching Nigel Speight recount the horrible know nothing cruelty he is fighting every day. Speight is one of the unsung heroes of this debacle.

    Anyway, onto the "positive".

    One of the things I've been trying, in between crashes,to think about, is how do you go about thinking about change in the kind of context we're in. And it is difficult not to succumb to either the extremes of despairing dismissal or giddy embrace of the will o' wisp or to read too much into a glimmer of positive events. But here are some of the upcoming developments I see and have seen on the near horizon that give heart:

    William Pridgen's FM study of Celebrex/Valtrex,

    http://simmaronresearch.com/2013/12/big-antiviral-trial-era-fibromyalgia

    http://research.ua.edu/2012/08/going-viral-surgeon-professor-team-in-new-approach-to-pain-treatment

    Both articles suggest that Pridgin has uncovered both treatment and diagnostic marker for Fibromyalgia and by extension, as he says Chronic Fatigue Syndrome, the ME version I assume. A press release is promised the first week in March.

    Next up is the Stanford meeting, prologue to the IACFS/ME conference. http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf

    Montoya will unveil the results from the Stanford Study
    “Circulating Cytokines in ME/CFS Patients
    Reveal a Novel Inflammatory and Autoimmune
    Profile”

    The program itself covers a great deal of ground, all of which is building what looks to me like a very strong case for the biophysical nature of ME.

    In fact the aims of the conference are: 1)Identify patients with ME/CFS and diagnose using Fukuda criteria. {this is interesting in the light of Montoya's signing the ME specialist IOM letter}
    2) Incorporate new research findings in ME/CFS into the clinical practice, employing current biomarkers. {Again, this is a real challenge to the status quo view that there aren't biomarkers. A more accurate presentation of this view would be that there are biomarkers that haven't been accepted. Anyway, it seems a throwing down of the gauntlet.)
    3)• Differentiate ME/CFS from psychological and psychiatric illnesses
    and manage CFS patient adequately

    Important as well is the fact that Stanford has given its imprimatur to ME treatment and research.

    There was an interesting remark on PR this morning: (OP's caps)

    I HAVE AN APPOINTMENT WITH DR. FELSENSTEIN BUT IT IS MANY MANY MONTHS AWAY. IT DOES TAKE TIME TO GET AN APPOINTMENT. ONE GOOD THING.. SHE IS AWARE OF THE LIMITATIONS OF LYME TESTING AND LYME CO-INFECTIONS. SHE HAS TREATED ONE YOUNG DOCTOR AT MASSACHUSETTS GENERAL WHO HAD NEURO-LYME. DR. FELSENSTEIN WORKED WITH OTHER LYME LITERATE DOCTORS. THIS IS A POSSIBLY A TURNING POINT FOR MGH. HOWEVER, DR. FELSENSTEIN IS SOMEHOW CONNECTED TO THE CHRONIC FATIGE INITIATIVE RESEARCH IN NEW YORK (WITH DR. LIPKIN). SOME PEOPLE ARE LEARY OF WHO IS WORKING WITH DR. LIPKIN. BOSTON DOCS HAVE HISTORICALLY BEEN HORRIFIC FOR PATIENTS WITH ME/CFS OR FIBRO. ALL OF A SUDDEN ,THEY SEEM TO BE JUMPING ON BOARD. PERHAPS IT IS MEDICAL COMPETITION SINCE STANFORD'S JOSE MONTOYA IS WORKING WITH LIPKIN ALSO.

    (MGS-Massachussetts General Hospital, Harvard's main teaching hospital)

    Connections are being made.

    http://voicesfromtheshadowsfilm.co.uk/2013/bristol-event-feb-5th/

    One of the participants, Erinna Bowman is associated with the London School of Tropical Medicine's biobank's project, which includes some very interesting studies for the presence of viruses and nk cell function. At the bottom of the page is this:
    "This work is in line with other international research teams, including the Infection Associated ME/CFS team at Stanford University."

    This research is funded by a 1 million pound grant from the NIH. There are shifts abroad even in Mordor.

    The CDC, in spite of dragging its feet on the toolkit and some of the inanities uttered by Elizabeth Unger, is also included in this shift. My criteria, before I believe that change is really grounded in both the NIH and the CDC, are their budgets. There have been no changes there. We shouldn't expect leadership from government, which at this point in history is risible. They are managers and whatever "good" comes from them at this point serves their policy interests not our welfare. That said there are definite signs of backing away from prior positions.

    Unger undertook a major shlep to Brisbane to participate in the Griffith's dedication of their neuro immune institute, headed by Don Staines and Sonya Marshall Gradisnik. Staines has a special place in my heart because at the last Invest in M.E. conference he declared that doctors who did not believe in physical nature of m.e. should be struck off. Got to love someone who would say this with Clare Gerada in attendance.

    Unger participated in the dedication and gave a keynote address. The embrace of Unger by Griffiths is as significant as Unger's embrace of them. She'll be at the Stanford meeting as well.

    So far, no representative from the NIH has attended any meeting I know of.

    And two more: Jonathan Edwards participation in the upcoming Invest in ME Rituximab trial and the funding of the trials in Norway.

    As Chris Snell said at the FDA meeting, commenting on the fact that he recognized many of the people there, "We need more sinners." We do. Things are moving far too slowly. We are an aging, impoverished, very debilitated population. Things can't move fast enough. But there are good, sound reasons to have hope.
    Last edited: Jan 13, 2014
  5. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Many thanks, Akrasia, for the information you've posted here. I've just printed out this thread plus the information provided from the links to avoid mangling it all in my memory. I'm trying to avoid getting giddily excited at all this news. Instead, this morning I've been researching cytokines and Dr Montoya's study, etc., and feeling quietly, sensibly hopeful as I wait for March 19, 2014.

    cheers, Lynne
    L'engle and rosie26 like this.

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