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

Cheshire

Cheshire

Senior Member (Voting Rights)
The new @dave30th 's article

The PACE trial and other unacceptable studies from the CBT/GET ideological brigades have had an enormous impact around the world. Luckily, in the US at least, momentum seems to have finally shifted away from this bogus treatment paradigm. The shift, while welcome and long overdue, does not automatically mean more effective treatments are immediately at hand. The field’s obsession with psycho-behavioral models has held back biomedical research for decades, and patients have borne the harms of these misplaced pursuits.

Last year, advocate Mary Dimmock, whose son has ME/CFS, and Dr Lucinda Bateman, founder and medical director of the Bateman Horne Center in Salt Lake City, gathered together several of the leading specialists from around the country for a pow-wow. Among the goals was to clarify and focus on the many clinical care needs of ME/CFS patients and strategize about how best to move forward.

[...]
Last month, the group met for a second time. Below is a report about the meeting from the Bateman Horne Center’s website.
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http://www.virology.ws/2019/04/02/trial-by-error-this-years-us-clinician-summit/
 
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.
 
David Tuller said:
CBT/GET ideological brigades
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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.

To address this gap in understanding, the summit attendees focused on driving consensus across the group on clinical practices so these could be mainstreamed across the broader medical community.
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Wonderful

They agreed to implement a website as one vehicle to share this information.
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Also wonderful.

To address this clinical crisis, the summit attendees discussed ways to advance education of all clinicians but especially ways to grow the ranks of clinicians who specialize in ME/CFS by providing tele-mentoring to those clinicians
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:thumbup:

There was an interesting comment by jimells on David's blog:
What’s up with the IACFS/ME organization? Is it defunct or maybe they gave up on their website? Their “Primer for Clinical Practitioners” [1] was a useful publication, but their 2016 revision is now three years late. It seems like they were doing the same things that this new group is now trying to set up.
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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?
 
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
continues.

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.
 
Hutan said:
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.
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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.
 
Barry said:
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.
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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.
 
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.
 
Patient4Life said:
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.
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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.
 
Jackson laboratory's blog on the summit:
BHC: Second Annual Meeting for ME/CFS Clinician Coalition
Batmen Horne Center (BHC), our clinical core for the JAX CRC, recently held their second annual ME/CFS Expert Clinician Summit in Salt Lake City, UT. ME/CFS clinicians from all around the United States attended, hoping to grow a collaborative network of disease experts and identify ways to improve clinical care for patients suffering from ME/CFS. ME/CFS is quite common, affecting between 1 to 2.5 million Americans, yet many people with the disease remain undiagnosed or struggle to get appropriate clinical care because of harmful treatment recommendations and physicians who don’t understand ME/CFS or how to properly manage it.
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https://jaxmecfs.com/2019/04/09/bhc-second-annual-meeting-for-me-cfs-clinician-coalition/
 
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