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

Interesting.

 

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.

 

Thank you @dave30th. And, thank you to Dr. Bateman, Mary Dimmock, and all attendees for this new hope we can hold onto!

 

It did nothing for me. Money out the door.

 

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.

 

Can only US clinicians contact them? Does someone know?

 

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.

 

Makes me think of 'Box' in Logans Run:

https://www.youtube.com/watch?v=SiyPqbyHXIg

 

@Barry

Great comparison there. It paints a real picture.

 

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.

 

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.

 

It works well for me. But as a pain med, no effect on fatigue. My QoL is better on it.

 

I think it is a better Fibro drug than for ME/CFS but, I have Fibro and it didn't work on that either.

 

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.

 

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.