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David Tuller - Trial By Error: This Year’s US Clinician Summit

Discussion in 'General ME/CFS news' started by Cheshire, Apr 2, 2019.

  1. Cheshire

    Cheshire Moderator Staff Member

    The new @dave30th 's article

    Yessica, TiredSam, Webdog and 23 others like this.
  2. strategist

    strategist Senior Member (Voting Rights)

  3. Medfeb

    Medfeb Senior Member (Voting Rights)

    The clinicians have identified multiple opportunities for treatment trials based on treatments they are already using. But depending on the drug, the trials would have varying levels of complexity and cost, even when the drug is already approved for another indication. LDN has been reported to help a number of people. It could also be done less expensively and more easily than some of the other opportunities.

    The broader message is that this field is ready for trials but needs funding to make that happen.
    mango, Yessica, MeSci and 15 others like this.
  4. Hutan

    Hutan Moderator Staff Member

    I like that description. It's better than 'BPS' because that can mean quite a few things, not all of which I'd disagree with. I'm going to try not to use BPS from now on.

    There are so many good things coming out of that clinician's summit. I was thinking about the rituximab null result yesterday and thinking 'We actually know something, even if it's just that getting rid of B cells doesn't work'. There's some satisfaction in that. Part of the nightmare of this illness is not knowing whether we should be putting the effort in to try the various treatments that are put forward. Well-conducted trials to find out whether the treatments that are often suggested work would be fantastic. Maybe we will find that they are all useless, but at least people with ME can then stop wasting their time and funds on them.


    Also wonderful.


    There was an interesting comment by jimells on David's blog:
    It does feel as though IACFSME has become irrelevant. I wonder if it was because they sometimes strayed too far from recommendations that were solidly evidence-based and so didn't have credibility?
    andypants, John Mac, rvallee and 8 others like this.
  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Thank you @dave30th. And, thank you to Dr. Bateman, Mary Dimmock, and all attendees for this new hope we can hold onto!
    Yessica, MEMarge, ukxmrv and 8 others like this.
  6. Patient4Life

    Patient4Life Senior Member (Voting Rights)

    It did nothing for me. Money out the door.
    MeSci, ladycatlover and Starlight like this.
  7. Sean

    Sean Senior Member (Voting Rights)

    MEMarge, Annamaria, andypants and 9 others like this.
  8. Samuel

    Samuel Senior Member (Voting Rights)

    a caution:


    I tried low-dose naltrexone (LDN) for a month, but had
    several episodes of prolonged severe nausea, vomiting,
    delayed gastric emptying, sweating, diarrhea, and worse IBS.

    In one episode, I needed to vomit for something like 7 hours
    but could not. Strange regurgitating, but no vomit. When
    finally vomited, was a large amount.

    This is the first time I had gastroparesis. In 2016 (a few
    years later) I was diagnosed with [Gastroparesis]. It

    Thus, LDN seems to have caused gastroparesis.


    I had moderate nausea the rest of the time. That went away
    when I stopped the LDN.

    Recovery from the physical stress of having to kneel
    etc. was months or longer.


    I had used a compounding pharmacy, and instructed them to
    use pure LDN plus acidophilus filler in small capsules,
    immediate release. However, they admitted later that they
    used crushed tablets.

    I do not know whether the reactions were caused by filler or
    by LDN.


    I took guaifenesin part of the time. I did not take
    opioids. Opiods cause dizziness, nausea, and vomiting for
    unknown reasons (mother cannot tolerate them either). The
    LDN was at 0.5mg and 1.25mg on alternate days. On the
    1.25mg days I took Benadryl to try to help prevent some of
    the nausea and for sleep and allergies.
    hinterland, MeSci, Woolie and 12 others like this.
  9. Inara

    Inara Senior Member (Voting Rights)

    Can only US clinicians contact them? Does someone know?
    DokaGirl and Hutan like this.
  10. Barry

    Barry Senior Member (Voting Rights)

    There is a lot of sense in that. Investigation and research into many complex problems (not just medical) benefit from elimination of false trails, thereby narrowing down the options to concentrate efforts into. The tragic irony is that PACE did clearly show that CBT-a-la-GET and GET were false trails - if it had been run by true scientists, the wider world would have realised that by now, and we would have all moved on. I would not have especially objected to PACE if its outcomes had been objectively reported in that way. It would still have not been the best way to spend £5M, but the overall costs from not reporting it honestly must amount to vastly more than that.

    I think of it akin to a large group of people trapped inside a very complex maze, with various teams within the group trying different routes to find a way out. Each team logs/marks their route, and reports back whether they hit a dead end or not. Efforts can then be focused on still-promising routes, and not wasted on ones terminating in dead ends. I see PACE as a team that hit a dead end, but reported back to the contrary, thereby severely harming the collective escape endeavour; hugely exacerbated by continued insistence that their route is still good. Honest, objective interpretation of what they found would have made such a difference.
    MeSci, ChloeC, MEMarge and 17 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Makes me think of 'Box' in Logans Run:


  12. DokaGirl

    DokaGirl Senior Member (Voting Rights)


    Great comparison there. It paints a real picture.
    Barry likes this.
  13. rvallee

    rvallee Senior Member (Voting Rights)

    As the NIH/IOM committee put it: they impaired progress and caused harm.

    This was in relation to the usage of Oxford criteria, but it applies equally well. They have confirmed the dead-end time and time again and still insisted they totally saw an exit, managed to have most of the efforts focused on picking at the dead-end.

    Ultimately this is the summary of this body of work: it has produced nothing whatsoever of any value. Any piece of useful information that psychosocial ideologues have put into their work was already known. Their own original work product has been a net negative, an anchor pulling on our collective necks and leading unknown numbers to drown while they self-promote their career.

    And they have known all along because those suffering the consequences were telling them. They have chosen to dismiss, even silence, those complaints. Psychosocial ideologues and their enablers have chosen to do harm, knowingly and deliberately. This has to be acknowledged and serious reform is needed so that it does not happen again, especially with the enthusiastic support of public health authorities who completely and thoroughly failed in their duty of care.

    Putting charlatans in charge is a bad idea. In medicine, it's reckless dereliction of duty.
    MeSci, MEMarge, Binkie4 and 4 others like this.
  14. Starlight

    Starlight Senior Member (Voting Rights)

    They rejected these modalities as "inappropriate and potentially harmful." This is very mild language in my opinion. Data was manipulated to bring about specific
    Results and the damage is incalculable. It is enormous, brutal and the price has been too high for so many. I am glad to read all that is positive and that is going in the right direction but long for things to speed up. I wasn't impressed with news of LDN trial. I tried it for a year without improvement.
    MeSci, MEMarge, Patient4Life and 2 others like this.
  15. Patient4Life

    Patient4Life Senior Member (Voting Rights)

    I think I used it for six months but it might have been nine. I can't remember how many times I renewed the Rx. It doesn't work and I am disappointed that this is the path they are pursuing.
    MEMarge and Starlight like this.
  16. andypants

    andypants Senior Member (Voting Rights)

    It works well for me. But as a pain med, no effect on fatigue. My QoL is better on it.
    MeSci, MEMarge, Webdog and 4 others like this.
  17. Patient4Life

    Patient4Life Senior Member (Voting Rights)

    I think it is a better Fibro drug than for ME/CFS but, I have Fibro and it didn't work on that either.
    MeSci, Ron, andypants and 1 other person like this.
  18. andypants

    andypants Senior Member (Voting Rights)

    Yes, from what I can tell it's works in about half. My MiL and step mom both have FM and find it helps immensely. Would be interesting to see studies on why it works in some and not others.
    MeSci, MEMarge, Lisa108 and 4 others like this.
  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

    I was prescribed LDN last Dec but because of ongoing chest infection and getting it made up, I didn’t begin to take it until about 6/7 weeks ago. I wanted to reduce chance of unpleasant side effects so have gone low and slow. Started at 0.5, now at 2.0 daily, aiming for 4.5.

    No negative reactions at all so far. No reaction at all except on day 4 of lowest level, my head and memory suddenly cleared. Was wonderful but it hasn’t occurred again although we have made 4 day visit to Venice. Was able to get up each day for breakfast and 3 hours meandering then in bed for rest of day and evening. That visit could have gone very badly wrong so something might have improved with LDN. It’s hard to know.

    Will persist and really hoping for some sort of improvement as dose increases.
    hinterland, MeSci, MEMarge and 3 others like this.
  20. Cheshire

    Cheshire Moderator Staff Member

    Jackson laboratory's blog on the summit:
    BHC: Second Annual Meeting for ME/CFS Clinician Coalition

    Sean, MEMarge, Lisa108 and 5 others like this.

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