The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Any updates

Discussion in 'Latest ME/CFS Research' started by perrier, Jul 25, 2017.

  1. perrier

    perrier Senior Member

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    Does anyone have any recent news fom amongst the CFS/ME researchers?

    It's very hard waiting.
     
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  2. RogerBlack

    RogerBlack Senior Member

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    Speaking broadly, there is nothing that may lead to a near-term treatment other than the ongoing Rituximab phase III trial.
    If this is found to be useful, and safe in CFS, then it may be available relatively quickly.
    https://clinicaltrials.gov/ct2/show/NCT02965768 Nalotrexone is another possible treatment, though I understand the results to be less clear than rituximab.

    As to 'mechanism', there are a lot of 'this is weird' papers - but there is no mechanism for why CFS happens. In order for drugs to be developed specifically for CFS, a mechanism and then a point to attack the disease with a drug needs to be found.

    It seems unlikely this would happen before 5 years, with a designed treatment at least 15-20 years away.
    http://www.fdareview.org/03_drug_development.php is informative.
    There are several stages before this that need to be done first, which have not been done for CFS.

    Work out mechanism for disease.
    Work out drug target to interrupt or reverse mechanism of disease.
    Develop compound(s) as candidates for doing that.

    Only then do we get to the left of that diagram 'toxicology', and then it's about 20 years, and 12 tested compounds and many hundreds of millions of dollars typically to to get one working drug out.
    (on average, it may turn out that the approach used does not work at all).
     
    Last edited: Jul 25, 2017
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  3. Cam Newton

    Cam Newton

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    RogerBlack did not mention the cyclophosphamide trial. It should be published later this year and is reported to be at least as promising as rituximab.
     
  4. Jesse2233

    Jesse2233 Senior Member

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    There's also Ron Davis and Nancy Klimas drug repurposing efforts, the enterovirus antiviral drug development in Rega, and Robert Naviaux's suramin trial
     
  5. RogerBlack

    RogerBlack Senior Member

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    Thanks for the additions. Even without a mechanism, if existing drugs prove to be theraputic, that can significantly reduce time to them being available, by skipping most of the approvals process, or allowing doctors to confidently prescribe off-licenced-indication where this is possible.
     
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  6. Cam Newton

    Cam Newton

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    Is the suramin trial for me/cfs? I hadn't heard that a suramin trial for me/cfs was planned. Any more details on that?
     
  7. Hutan

    Hutan Senior Member

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    There was the reported finding that cells from healthy people put in serum from people with ME became unhealthy (developed problems with energy production?).

    I believe both Ron Davis and Fluge and Mella have found this (?).

    To me, that is a very significant finding. I'm surprised we haven't heard more. I would have thought other researchers would have rushed to replicate this finding.

    I know research takes time, especially to get to the point where results are published. Has there been any more news about this? Perhaps there will be an update about this at the forthcoming OMF conference?
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    Yes, Dr Naviaux is going to test suramin on 10 female ME/CFS patients later this year. He is arranging import of the drug into the US and raising funding
     
  9. perrier

    perrier Senior Member

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    Thanks. What is this Rega? The others I'm familiar with.
     
  10. alex3619

    alex3619 Senior Member

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    It takes time. A rush to do something in science can still take years. A lot of the data this is based on has yet to be published and reviewed. I expect we will hear much more on this next year.

    The only really big news right now is Rituximab. We might have an idea in just three months if it works, and on what sized subset of patients. There is so much very promising research though, we could hear something at any time.

    Now if some of the research we are hearing about from Davis, or Younger or others gets published, then we can talk.

    It takes time ... one finding I have been waiting for since at least last year ... they found elevated beta cortisol receptors, which will act to induce cortisol resistance. Yet the details are lacking, so we cannot judge if this is important or not.
     
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  11. alex3619

    alex3619 Senior Member

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    This is one thing advocacy can make a huge difference in. Antibiotics for gastric ulcers finally came to be widely used after a decade of patient advocacy. We must be prepared to fight if the science is there.
     
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  12. Kati

    Kati Patient in training

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    Who is 'they' and where can I read further about that?
     
  13. Kati

    Kati Patient in training

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    Hi @perrier i can relate to this.

    i think we will find hope on August 12th when Dr Davis and his team presents at his symposium in Stanford. The good news is a Canadian researcher, Dr Alain Moreau, will present there.

    Keeping all my appendages crossed.
     
  14. alex3619

    alex3619 Senior Member

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    This was from a video conference, in Sweden I think. Its not written up, though I think I came across a brief mention somewhere else. I am not sure I recall the name, was it Bansal? I do recall it caused some commentary at the time. Which is why I want to see something in writing. Details matter.

    Some comments here - http://forums.phoenixrising.me/inde...w-at-me-conference-dr-bansals-research.41363/
     
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  15. RogerBlack

    RogerBlack Senior Member

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    This is interesting - however, it is not a mechanism.

    A mechanism would be something like:
    'During an immune reaction to a virus, the body generates antibodies. These antibodies to X virus happen to attack Y in the mitochondria. Variation of levels of Y in the mitochondria, signalled by Z are normal in exercise and stress to maintain energy balance. The presence of compound Q, released at elevated Z levels by affected Ys has a systemic effect on P'.

    You then go into what part of this you can attack with a drug. Can you reverse the damage to the mitochondria, specifically flush the antibodies, block Q in the bloodstream, augment the mitochondrial function in some way, ...

    As a car analogy, it's 'it won't accelerate properly' , rather than the detailed 'the air filter is clogged'.

    If you know how the car works, you can go from one to the other easily. If you don't, you might try replacing the tyres and accelerator pedal.
    We don't know how the detailed mechanism works, and without knowing that it's much harder to design a sensible treatment.
     
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  16. perrier

    perrier Senior Member

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    Yes Kati, so am I. But it's very hard when you have a family member who is severely ill: this waiting,this hoping,this praying. There is no sense of urgency in the general research community,except for Dr Davis.

    As for Dr Moreau, I don't know if ME has been his research area. But it's true, at least there is one Canadian. It's all just too extreme the suffering and the disability.
     
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  17. ChrisD

    ChrisD Senior Member

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    I am intrigued to know whether there will be updates on recent studies that have found potential biomarkers such at the Columbia gut research or particularly the Australian study that found Activin B to be a possible Biomarker....
     
  18. BFitz89

    BFitz89

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    That is terrible to read and the worst part is it's possible they still won't have a cure. Seriously F this. I'm at a loss for words. I guess I better learn to accept this reality.
     
  19. RogerBlack

    RogerBlack Senior Member

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    This is for a specifically designed drug, based on a known mechanism - the gold standard of development.

    In some cases, drugs for other diseases prove useful at some point, either with or without a clear reason why it would be so. There are several drugs in trials which were not developed for CFS, and are based on limited reasoning why they'd help. It is possible one or more of these could turn out to be useful, and could be available more rapidly - either directly as the research is published, used 'off label' by physicians, or (often following a certification process) after a year or three for safety approval for the new indication.
     
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  20. Sushi

    Sushi Senior Member Albuquerque

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    That is one avenue that Ron Davis is working on--testing all existing drugs against ME/CFS.
     
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