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Breakthroughs in the Cause and Treatment of Autism and Chronic Fatigue Syndrome, Dec 2019, Naviaux Lab Newsletter

Discussion in 'BioMedical ME/CFS News' started by Trish, Feb 12, 2020.

  1. Trish

    Trish Moderator Staff Member

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    Breakthroughs in the Cause and Treatment of Autism and Chronic Fatigue Syndrome

    From the Naviaux Lab, University of California, San Diego Robert K. Naviaux, MD, PhD - December 2019
    Founder and Co-director, the Mitochondrial and Metabolic Disease Center (MMDC) Professor of Genetics, Departments of Medicine, Pediatrics, and Pathology


    8 page pdf


    The autism-mitochondria connection
    The SAT1 study (suramin in autism)
    Newborn screening for autism
    Exposomics and Metabolomics

    Plans for 2020:
    The SAT2 Trial
    ME/CFS—Triggers and Networks that Connect the Metabolome and Exposome
    Lyme disease
    Back to the Future—The 2020 UMDF Symposium (mitochondrial medicine)
    Tying it all together

    Here is the ME/CFS section on page 5 with added paragraph breaks for easier reading:
    Michelle, hinterland, Caesar and 24 others like this.
  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Where is the breakthrough? Did I miss something? Looks like no suramin trial for CFS in 2020.
    Michelle, Simone, alktipping and 11 others like this.
  3. Andy

    Andy Committee Member & Outreach

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    Hampshire, UK
    And my question is do we have data that shows that “patients who are able to recover still have a life-long risk of recurrence”?
    Michelle, FMMM1, JohnTheJack and 19 others like this.
  4. ringding

    ringding Senior Member (Voting Rights)

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    Bristol, UK
    It would be good to get clarification on that @Andy . Apart from being able to exercise you could say that I had 'recovered' until something triggered this relapse at the start of 2019, so I'm intrigued by what they mean.

    I must admit that I find the 'something in the blood' findings from three (?) different labs quite exciting. But then I don't even begin to understand the details of what I've read!
    Graham, alktipping, MEMarge and 7 others like this.
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Also are the ones who recover a subset with different aetiology? Without that biomarker can we know for sure?

    I'm not saying that it isn't worthy of studying those in long term remission or possibly recovered. Just wary of language that generalises or hypes & might set false expectations.

    Edited - to clarify their language not @Andy's!
    alktipping, MEMarge, JaneL and 5 others like this.
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    I suspect we don't, at least nothing very solid. I think he may be referring to the fact that a proportion of ME patients report that they've had good remissions followed later by relapse, to the point that it's become a commonly recognised (as opposed to actually researched) feature of one subset of patients.
  7. Aslaug

    Aslaug Senior Member (Voting Rights)

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    I've been able to be quite active in my remissions as long as I did not lift weights. Bodyweight exercises, hiking (I live in the northern part of Norway, we have tall mountains to climb), using a bike as my main mode of transportation and doing lots of uphill biking.. And then crash.
    Sing, Sid, alktipping and 8 others like this.
  8. mariovitali

    mariovitali Senior Member (Voting Rights)

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    Hmmm.... I swear, i heard before about these techniques somewhere.
    hinterland, Lisa108, Ron and 10 others like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Yeah I think this is pretty much confirmed from clinical observations and something that would require long-term funding to formalize so that's not happening.

    This is basically: as far as we know, with more evidence for than against but the deciding factor, money, not being available to settle it. Relapsing-remitting course seems to be rather common and we need to know more but as it stands clinical observation is solid.
  10. Hutan

    Hutan Moderator Staff Member

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    (excitedly examines Figure 8 for the characterisation of the metabolic signature of ME/CFS....)

    Here's Figure 8:
    Screen Shot 2020-02-14 at 6.49.54 AM.png

    Oh, it's just a picture of 12 silos....
    My impression is that we are still a long way from having a 'metabolic signature' for ME/CFS. It looks to me as though researchers are still ironing out technical issues in this and still figuring out what is important to look at.

    I'm happy the Naviaux lab is doing its work. The idea that cells releasing ATP in response to cellular stress is involved in the cause of ME/CFS sounds like a reasonable thing to look into. But the newsletter, starting with its title that promises a breakthrough in ME/CFS and autism, overclaims, I think. And that reduces the credibility of the team, in my eyes.
    dan6000, Sing, Michelle and 34 others like this.
  11. Simon M

    Simon M Senior Member (Voting Rights)

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    Completely agree.

    I am increasingly irritated by researchers hyping their work. Apart from generating false hope, the field is never going to make progress unless researchers are more honest about what is really known, what is merely hypothesis and what is actually a dead end.

    By contrast, Maureen Hanson and team were far more honest in their recent metabolomics paper. They have some possible findings but were already pointing to the need for a different approach in metabolomics, such as looking beyond blood for samples and using an exercise challenge. There is much less to get excited about here, but I respect the team for their candour and rigour.

    And wasn't there a replication attempt of the original Bob Naviaux study that still hasn't seen the light of day - or have I got that wrong?
    Last edited: Feb 14, 2020
    dan6000, Sing, Michelle and 38 others like this.
  12. Cheshire

    Cheshire Moderator Staff Member

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    Can't agree more with you @Hutan and @Simon M
    As you said, it is dishonest toward patients and prevents progress and I would add discredits all the good work done by others by giving ammunitions to ME skeptical doctors. It is so easy for them to believe that all research is bullshit and that there is nothing to look for when patients come to them with weak studies.
    Last edited: Feb 13, 2020
    dan6000, Sing, merylg and 23 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    As someone who gets asked to advise the big funders on these things I have to say that this is unimpressive. We need hard data and caution.
    dan6000, Sing, Michelle and 23 others like this.
  14. John Mac

    John Mac Senior Member (Voting Rights)

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    He was talking about it being released in the Fall (2017?), then late Fall, then early in the New Year (2018?) then nothing further was heard.
  15. alktipping

    alktipping Senior Member (Voting Rights)

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    funding blurb never a good sign if more effort has to be put into self promotion than actually producing research data but this has been the way of business hype for at least a century .
    FMMM1 likes this.
  16. Londinium

    Londinium Senior Member (Voting Rights)

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    I find Naviaux's work interesting and worth pursuing, but probably in the DARPA mould of potentially high-impact but low-probability. For example, his work on ASD is innovative, but I note that all papers on purinergic signalling being involved in ASD are from him; no other research group seems to have picked this up to with follow-up studies to test and confirm this theory. This despite the significantly higher funding and researcher interest in ASD compared to ME/CFS.
  17. voner

    voner Established Member (Voting Rights)

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    @Simon M,

    I was in that replication study and since it’s been like three years since I donated my blood, I emailed the Naviaux Lab to see if and when the Study will be published. I got a reply saying basically that they’re still massaging the data, but they plan to publish some day.

    I find this disappointing.
    Last edited: Feb 14, 2020
    dan6000, Sing, Michelle and 17 others like this.
  18. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Sorry for suggesting that the answer to everything is a GWAS study. I didn't even know what a GWAS study was until @Simon M did an article on Chris Pointing's proposed application (now an application?) for funding for a GWAS study in ME!

    Anyway, has there been GWAS study in ASD and if so did they turn up anything linked to "purinergic signalling"?
    Michelle likes this.
  19. Sid

    Sid Senior Member (Voting Rights)

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    There was. I'm still waiting for that paper to see the light of day. I figure it might never.
    Michelle, merylg, Simon M and 6 others like this.
  20. Ron

    Ron Established Member (Voting Rights)

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    Why don't you also ask OMF or the Ron Davis group why there not concerned about it not being published since they put up the million dollars to fund it. Maybe they can give you better insight? Just a thought.
    Sing, merylg, Graham and 5 others like this.

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