Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Research update from Prof. Ron Davis (video!)

Discussion in 'Latest ME/CFS Research' started by Ben H, Dec 20, 2017.

  1. Ben H

    Ben H OMF Correspondent

    Hi guys, research update video for you from Prof. Ron Davis!



    Research Update Featuring Ron Davis


    We are happy to share a video research update from Dr. Ron Davis about the ME/CFS Collaborative Research Center at Stanford funded by OMF!

    This is the first of a 3-part series; the next two will feature Drs. Mike Snyder and Mark Davis of Stanford University. They talk about the latest and most promising results from their teams, why they are excited to be in the field, what they will do in 2018 with the funding OMF has provided, and how all of this research could lead to new treatments for ME/CFS! Stay tuned.

    In this video, Ron Davis discusses the latest results in developing new diagnostic technology for ME/CFS with the nanoneedle biosensor invented at the Stanford Genome Technology Center. He also talks about new findings from the Severely Ill Patients Big Data study. For more details, watch the video on our website.

    Update from Dr. Jonas Bergquist


    What are the roles of hormones, proteins, and antibodies in ME/CFS?

    To answer these questions, OMF is currently funding the research of Jonas Bergquist, MD, PhD, a Professor at Uppsala University and a member of our Scientific Advisory Board. Dr. Bergquist is measuring proteins in cerebrospinal fluid and blood plasma from a small cohort of Swedish ME/CFS patients.

    Click here to read the latest details and updates on Dr. Bergquist's research.

    JOIN US! Host a HOUSE PARTY for Unrest

    As an official partner with Time For Unrest, we invite you to screen Unrest in YOUR home or community center. We invite you to help share the film, support our ground-breaking research, and encourage dialogue about ME/CFS with your family and friends.
    Join us for 10 DAYS OF HOUSE PARTIES!

    If you are able, join Team OMF and Time For Unrest and host a small screening of 2 to 20 in your home between January 5 to 14. At the screening you can invite your guests to join you in supporting OMF's research, to help raise awareness of ME/CFS and to inspire conversations. All the resources you need are available and we are happy to help you. Let's see which State in the US and which country can host the most parties.
    Sign Up Here To Get Started!


    A Word from our CEO/President

    As we reflect back on our accomplishments from 2017, I begin with you. I sincerely thank you for being a part of our OMF family and supporting research to help millions of patients around the world. Working with you through research, our Worldwide Tour, the Community Symposium, and the many Team OMF events around the world, we have strengthened our community, expanded critical research, and connected as friends.

    In the coming year, I am committed to continuing to provide you updates and news as research advances.

    I look forward to 2018 with great anticipation. My wish for 2018 is for our research to lead to advances to help all patients return to their lives and for each and every one of you to have better days ahead.

    With hope for all,

    Linda Tannenbaum

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    Happy Holidays guys,


    @Janet Dafoe (Rose49) @AshleyHalcyoneH
  2. jpcv

    jpcv Senior Member

    SE coast, Brazil
    Hi Bem , tried to watch it but the link is not working...
    ljimbo423 likes this.
  3. ljimbo423

    ljimbo423 Senior Member

    United States, New Hampshire
    Hi jpcv- The link works, you just have to register with your name, email address and what country you are from. You can use just your first name if you don't want to give your last.

    jpcv, Dolphin, Countrygirl and 2 others like this.
  4. Murph

    Murph :)

    Just watched the Davis video.


    1. Seeing genetic differences, including in locations related to infection (kur locus (spelling?)). sample size only 20 though so doing a validation study in 2018.

    2. Finding no pathogens. In fact fewer viruses than in controls. Continuing to look though, using new technology.

    3. Detail on the sample size for the imepdance assay: 11 patients, 10 controls. So far all patients show the unique signal (decrease then increase in impedance), and none of the controls. They are getting more controls in.

    4. findings in blood flow. They're finding different characteristics in patient blood: it's "strange, a little sticky", "a little different in colour" (!!!) and flows differently through artificial capillaries. And they are developing technology to measure this.

    [seriously if our blood is a different colour that's the easiest biomarker I ever heard of. A person with a pair of scissors and a few paint swatches could diagnose anyone!)

    5. working eventually toward not only distinguishing patients from controls but also from other ilnesses like MS, Lyme etc.
    Wishful, Manganus, Abrin and 34 others like this.
  5. JES

    JES Senior Member

    Blood hypercoagulation is something that Dr. David Berg already found in his patients in the 90s and he developed a method to test and treat for this. Sadly, as with many other CFS/ME hypotheses, it lost traction and was almost entirely forgotten. When I try non-prescription enzymes that reduce coagulation, for example nattokinase, I get a herx-like reaction.
    Abrin, rebar, Notjustfatigue and 10 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    I haven't watched the video yet but what did Dr. Davis say re: finding no pathogens? Did he mean by antibody testing or PCR?

    Did he say if they tested the subjects for anti-phospholipid or "Hughes" Syndrome? My understanding was that this tests if you have thicker blood or more at risk of a blood clot. I had this testing done prior to starting IVIG (in early 2016) and was negative on all tests/auto-antibodies and my blood was not considered sticky (whatever this means)?

    LOL :lol:
  7. Sushi

    Sushi Moderation Resource Albuquerque

    I tested positive on Dr. Berg's ISAC panel "way back when" and followed a heparin protocol for many months. Previously it was very difficult to draw my blood as it coagulated almost immediately. I felt a lot of improvement on heparin. I am now taking another type of anti-coagulant and can't say that it improved my general ME/CFS symptoms, but blood draws are again much easier.
    Mary, justy, Gemini and 5 others like this.
  8. wastwater

    wastwater Senior Member

    Maybe the thick blood is due to low vitamin D or cholesterol
    Does anyone know how to spell kur Khur Kerr locus or where it is
    sb4, justy and ebethc like this.
  9. MonkeyMan

    MonkeyMan Senior Member

    If you prefer you can skip the registration process and just watch it here.

    AlwaysTired, Abrin, Mary and 12 others like this.
  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    The "register to view" is being taken off. Ron wants it easy to access for any patient and available to all.
  11. Sushi

    Sushi Moderation Resource Albuquerque

    :thumbsup: Even one extra step to viewing it could be a potential barrier between Ron and patients--so great!
  12. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

    @Sushi, @JES

    Yes, this sounds similar to my wife, @PWR (Peace without Rest). When the tech was drawing her blood in order to do the nuclear assay Red Blood Cell Mass test in 2002, he almost couldn't do so due to her hypercoagulation. Her test showed low blood volume (common), and she qualified for, but did not participate in, a study using Procrit by Dr. Nancy Klimas. Shortly thereafter, she began heparin inj. and lumbrokinase (Bolouke brand) and noticed a dramatic improvement.

    After about a year or more, she had to d/c the heparin and later replaced the Lumbro with digestive enzymes between meals. However, this therapy has continued to be one of the 3 top treatments for making a difference in her ability to function, especially walking.

    @JES, Yes, according to David Berg, the clots contain viruses or other pathogens that get released when the clots are broken up. Thus, it is always advisable to combine the anticoag treatment with long-term, safe herbal antivirals and/or transfer factors.

    RWP + PWR
    BadBadBear, Mary, sb4 and 5 others like this.
  13. Sushi

    Sushi Moderation Resource Albuquerque

    That is great to hear!:) I was taking nattokinase but can't now as I have to take a specific type of anti-coagulant due to Afib and I can't add to the anti-coagulation effect with other remedies without becoming at risk for bleeds.
  14. *GG*

    *GG* senior member

    Concord, NH
  15. alkt

    alkt Senior Member

    this video gives hope that they will find a conclusive test for M.E patients if the costs can be brought down to a level that health systems would actually pay hopefully not far from there we shall see an end to all the psych bs in the press. anyway it was enough for me to make a donation in recognition of all the hard work put in by ron davis and the many others working with the support of omf.
    Cornishbird, Ben H, Mary and 6 others like this.
  16. Cam Newton

    Cam Newton

    Thanks for this! Any idea when we can expect Dr Mark Davis’ video update?

    Thanks again!!
    Ben H, RL_sparky and Countrygirl like this.
  17. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

    Mark Davis and Mike Snyder have already been filmed, but the editing isn't done. Likely very soon after the holidays.
    lenora, Neunistiva, Ben H and 18 others like this.
  18. Forbin

    Forbin Senior Member

    When Dr. Davis mentioned the "sticky" blood of ME patients having trouble getting through the artificial capillaries of the nano-needle, it reminded me of a somewhat forgotten ME/CFS outbreak that occurred in the mid 70's, nine years before Lake Tahoe.

    In 1975, there was an outbreak of an illness at Mercy San Juan Hospital in Carmichael, California, that strongly resembled ME/CFS. There were hundreds of cases over the course of a few years. The CDC documented 45 of them.

    One of the main features of this illness, however, was the inflammation of tiny blood vessels known as the "venules." These are the small intermediary vessels that carry blood returning from the capillary bed to the larger veins of the venous system.

    Three similar outbreaks had been reported in hospitals in 1953, 1957, and 1965.

    I think its assumed in the report on the 1975 outbreak [see below] that the blood vessel inflammation was caused by an infectious agent. The report refers to the condition as "infectious venulitis."

    I wonder, though, if some kind of change in the blood itself, one which impedes its flow, could have been the proximate cause of the blood vessel inflammation. [The illness had certainly begun with an apparent infection of some kind.]
    - - -
    [ Impeded blood flow in ME/CFS interests me because an otologist who could not identify the cause of my post ME onset dizziness said that dizziness like mine was sometimes seen in cases where the tiny blood vessels of the inner ear are chronically constricted. ]

    Below is a pretty fascinating report on the 1975 outbreak.

    Last edited: Dec 21, 2017
    Abrin, BadBadBear, KristenSF and 15 others like this.
  19. gregh286

    gregh286 Senior Member

    Londonderry, Northern Ireland.

    4. I had ozone therapy done many time at a place in Belfast, the Doc (GP turned naturo) always had a wry smile and said that he noticed our PWME blood never lightened in colour when he added the ozone to it in the tube. It just stayed dull crimson and not a nice bright pink he says he sees with non-ME people getting ozone....Quackery or not....

    Regarding coagulation, aspirin is still one of the my top supps.
    Last edited: Dec 21, 2017
    Mary, Sushi, TreePerson and 8 others like this.
  20. Gondwanaland

    Gondwanaland Senior Member

    Interestingly I could say my disease begun 7 yrs ago with a DVT (one year after Yellow Fever + Tetanus vaccinations and 2 years into a high lectin diet= whole grains).

    Receiving IV Heparin for 4 days + warfarin for 1,5 years made me feel awful, essentially caused drop in sex hormones, leaky gut, MCS, lots of food sensitivities and intolerances, especially sulfite, salicylate and oxalate issues.

    Recently I found GLA to help with most of these issues (loss of delta-6-desaturase function?), but instead of increasing anti-thrombotic prostaglandins, I get hypercoagulation symptoms.

    BTW I was tested for several SNPs and am nothing more than +/- Factor V Leiden, so nothing alarming.

    ETA in the last couple of years the use of fibrinolytic agents as Serrapeptase, Bromelain and Dipeptidyl-4 (DDP-IV) led to cartilage breakdown with very painful shoulder and inguinal ligaments (and intolerance to vit C and omega 3).
    Last edited: Dec 21, 2017
    EsetIsadore and Countrygirl like this.

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