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Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

Discussion in 'General ME/CFS Discussion' started by Ember, Nov 13, 2017.

  1. Ember

    Ember Senior Member

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    SMCI’s interview/presentation featuring Dr. Klimas provides a call to arms for fundraising advocates. NIH's funding inequity is highlighted in Jørgen Jelstad’s “The chronic lack of funds for ME/CFS research:"
    An NIH update with dollars in millions for the years 2013 to 2018 estimates low 2018 funding: MS--$77m; Arthritis--$193m ; Lupus--$76m; ME/CFS--$6m. Meanwhile, Dr. Klimas tells us:
    “Eight years ago...but there’s no place to go.” Our advocates claim that, based on disease burden, NIH funding for ME/CFS research should be equivalent to $188 per patient per year:"
    A 25-fold NIH funding increase is calculated by projecting an estimated ME/CFS Disability Adjusted Life Year (DALY) onto 2013 NIH data and using a modest prevalence estimate. It provides no compensation for past malfeasance.

    Burden of disease is an important factor in NIH funding decisions, along with such factors as scientific opportunity, the quality of the science and the interest of researchers. But in the final analysis, a Washington Post article reports, less NIH funding may be provided to diseases “where we blame the victim” or there is less public support.
     
  2. Ember

    Ember Senior Member

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    I’m amazed to learn that GWI has been reversed in mice and that a human trial is about to begin. As I understand it, neuroinflammation was first brought down by 50%, and then in quick succession, a dose of mifepristone was used to block the HPA axis, forcing an internal reboot. Bingo! The mice reset to normal. Their autonomic function normalized, their immune function normalized, their endocrine balance normalized and they could be normally challenged again. The mice had been “aged out” to the equivalent of ten years of illness (9:55–11:15).

    It sounds as though an arm of the upcoming human trial might be devoted to ME/CFS (5:00–5:40), although I can’t imagine how that arm would get ethical approval without the prior modelling.

    Could GWI be considered a form of cell danger response?
     
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  3. Murph

    Murph :)

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    Super fascinating stuff from Nancy Klimas on GWI and CFS. Starts at 5:45 in the video.

    She talks about CFS as a steady state and how you might have to shock it back into a healthy steady state. She has models of ways to do that in GWI.

     
  4. hixxy

    hixxy Senior Member

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    Mine doesn't feel so steady unless she means steadily declining.
     
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  5. Diwi9

    Diwi9 Senior Member

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    Something I learned from being on PR is that some months/years after falling ill, many people improve. I have improved this year. I can do more, but I still have a wall. I still have symptoms everyday, but they are not what they were when I was in bed. I do not understand this disease. I feel positive that it is neurological and immune mediated. It appears that GWI is not immune-related, but the consequence of a neurological insult.

    It would not be surprising if some people deemed ME/CFS have had an exposure and are actually GWI-like. This research is amazing in that it may find a remedy for a fraction of us. The researchers are beginning to learn where to look to differentiate us.

    We display the same clinical features, but we are not the same. This is profound. I'm surprised it is not receiving more attention.
     
  6. Jesse2233

    Jesse2233 Senior Member

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    Whoa... seems like they’re burying the lead here

    At the end of the video Dr Klimas says a single dose of mifepristone cured GWI in their mouse model. What does that mean?

    This study shows a negative overall outcome with mifepristone in human GWI subjects but with increased verbal learning
    https://www.ncbi.nlm.nih.gov/m/pubmed/26600007/

    Mifepristone is used to pharmacologically abort pregnancies and treat Cushing’s syndrome. More below
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mifepristone is that the drug they use for abortions as the day after pill? From memory it strongly blocks cortisol.

    I wonder how they got neuroinflammation down and block cortisol as cortisol is probably our main hormones we have that reduces inflammation also??

    Although going by what klimas said in that video cfs is the opposite with cortisol but still has neuroinflammation. I guess if we could naturally stimulate a normal cortisol level its possible this in itself could lower neuroinflammation but maybe need something else initially to help lower this inflammation. I wonder if just doing this is enough to improve nk function and put the many infections implicated into dormancy??
     
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  8. Ember

    Ember Senior Member

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    What cohort is being studied? The study that you cite is called "A randomized, double-blind, placebo-controlled, crossover trial of mifepristone in Gulf War veterans with chronic multisymptom illness (emphasis added).” Chronic multisymptom illness falls under the umbrella term, "medically unexplained illnesses," and it includes CFS and Fibromyalgia:
    VA acknowledges the IOM’s Gulf War and Health: Volume 10: Update of Health Effects of Serving in the Gulf War, 2016, which substitutes chronic multisymptom illness for Gulf War Illness:
    The IOM's earlier Gulf War and Health: Treatment of Chronic Multisymptom Illness (2013) defines chronic multisymptom illness (CMI):
     
    Last edited: Nov 17, 2017 at 3:28 PM
  9. Forbin

    Forbin Senior Member

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    Her slide on "Climbing the Mountain" seems oddly reminiscent of the nature of quantum energy states, where there are discrete levels of stability but no "in between" states. A specific input or loss of energy is required to instantly shift between levels.

    In GWI and ME/CFS it seems like the immune system may be switching into different levels/modes of stability based on an unusually strong response to something. The important thing being that, once it gets into that state, it will remain there even when the "trigger" is no longer present. It also doesn't seem like it would rely on a chronic infection to remain in this state. This really seems like another way of saying that the immune system is getting stuck in an alternate, but stable, mode.

    It makes me wonder if the severity levels of ME/CFS are not just differences of degree but might be distinctly different stable states of the immune system.
     
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  10. Ember

    Ember Senior Member

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    Dr. Naviaux refers here to two distinctly different stable states: “The systemic form of the CDR, and its magnified form, the purinergic life-threat response (PLTR), are under direct control by ancient pathways in the brain that are ultimately coordinated by centers in the brainstem.”
     
  11. Cinders66

    Cinders66 Senior Member

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    This was a fantastic video, I thrilled GWS is progressing with better funding but it highlights even more the neglect of CFS. Although there's similarities it does seem some can improve either CFS whereas GWS seems more fixed but also I've not heard of the severe cases in GWS like in CFS , they seem more of the walking wounded or is that just because they weren't encouraged to exercise like PWME?

    Nancy klimas presnting this at the SMCI discovery forum was exciting but I don't see how nih dont accept the bleeding obvious that if they pumped more money in CFS potentially thousands cost also be lifted out of disability with drugs. And I felt she was saying look what can be achieved. Phenomenal woman.

    Finally the slide showing difference in communication on a slide was very interesting. It was a great video and there seemed real report with her and the excellent dr nahle.
     
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  12. Diwi9

    Diwi9 Senior Member

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    @Cinders66 - From what I gathered, funding for GWI came from multiple government agencies (like DOD and VA). Right now, our only source is the NIH, and based on the interview with Dr. Koroschetz from the NIH (video thread link), it sounds like funding research grants happens via committee. Hence, it's a popularity game and the reason why some diseases are well-understood, while less popular diseases are under-funded/neglected. Dr. Klimas is amazing because as she does her GWI research, she's always considering what it can teach us about ME/CFS. I wish we had 30 of her in this field.
     
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  13. Mary

    Mary Senior Member

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    I wonder if reducing neuroinflammation first by 50%, as Nancy Klimas said they did, and than adding in the mifepristone made the difference. I don't think they reduced neuroinflammation first by 50% in the study you cited.
     
  14. Mary

    Mary Senior Member

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    This is great, thanks so much for posting! :thumbsup:
     
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  15. Ember

    Ember Senior Member

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    The “Climbing the Mountain” slide, along with the graphic showing altered signalling pathways, suggests that a “snap out of it” remedy is being applied to a systemic “false illness belief.” Aren’t autoimmune diseases maintained by similar systemic "false illness beliefs?"
     
  16. Ember

    Ember Senior Member

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    According to Dr. Naviaux, cellular miscommunication patterns maintain ME, GWI and some autoimmune diseases:
    The systemic signalling errors described here do seem eerily analogous to “false illness beliefs,” i.e., danger responses in need of a reset. Meanwhile, we suffer the mistaken assessments of our systems.
     

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