Patients recover and do so in large numbers, they just keep it quiet as they don't want to be attacked. That is a problem that needs deep reflection here.
I find that insulting to me and our members. We don't allow personal attacks, questioning of someone's recovery story or symptoms, or speculation about why any individual recovered.
We do, however allow questioning of the claims made by professionals using their professional status to promote potentially harmful and unevidenced treatments on the basis of personal anecdotes and secret groups.
I think you need to do some deep reflection about the basis of some of your claims, your judgement about this forum's members, and your lack of response to people who are harmed by the treatments Garner promotes.
I don't think you grasp the fact that by posting these kinds of threads mocking him and repeatedly attacking his character, you are stunting opportunities for your community. Either because researchers don't want to work in this area or because patients recovering don't want to make themselves known and share what helped them, for fear of also being ridiculed. You don't have to listen to me, but I wanted to at least share the impact from my perspective.
I have never mocked Garner, nor have I attacked his character. It's his words and actions I am deeply worried about. If anything I am concerned for his wellbeing. Why would a senior doctor steeped in evidence based medicine suddely turn evidence on its head and go all out to become a media junkie using every opportunity offered and touting for more to tell his personal anecdote of a brief spell of illness and what he believes cured him? It's not exactly normal behaviour of a scientist.
As for 'stunting our opportunities'. Please, come on, listen to yourself. We are open to examining all scientific evidence, regardless of the type of treatment involved. We have discussed the papers Garner has co-authored. Individual members can make up their own minds. Just do a forum search for threads with Garner in the title and you will see we have reviewed his publications in research journals about ME/CFS and Long Covid.
You may want good clinical trial evidence. I do too, but in the absence of that, you're being told severe sufferers are recovering this way. I've met some of them in person and some online and they were ill for decades in some cases and housebound etc. If I was you I'd have curiousity about that but I'm not you.
Again the insults - of course we have curiosity. Why else would we use our very limited energy participating in forum discussions and reading articles and research papers. Why would we examine seriously the evidence or lack of it for a whole swathe of treatments brought to us initially with anecdotes? Of course we want to learn more and understand the basis of claims.
If I want to find out about what brain retraining actually involves, I am told I have to read some books that are peripherally related, or pay hundreds of dollars to sign up to a course being run by someone with no medical training.
Been there, done that. The book I read about reverse therapy was a jumble of unsubstantiated claims, bits of science that had nothing to do with human health and the author clearly didn't understand but thought sounded clever, and waffle. The Gupta program I bought a set of CD's to follow was all hokum and silly things to do that made me sicker, and a few quite nice relaxation sessions.
When we asked the person who joined the forum to tell us about the program they followed, they told us to read a vaguely related book and refused to say more.
Perhaps as a gesture of good faith you could ask one of the many brain retraining trainers,n who charge lots of money, to publish their methods so we can discuss it. People who sign up for LP are told not to reveal the contents of their courses and frightened into staying silent about the harm is has done them, sometimes for years.
And I wish those who have recovered a long and healthy life. Don't ever accuse me of attacking them.
You have a right to your feelings. I'm not here to persuade you it's the answer, I'm trying to nudge you as best I can to look at the reality of the brain retraining situation as it stands.
The reality is hard for us to look at when it's all happening in secret.
The so called 'situation' is of their making, not ours. The trainers set up a system based on secrecy and high fees, and in some cases pyramid selling where they charge thousands to train as trainers and take a cut of their income from it, as Phil Parker does with LP. He also demands participants keep the method secret. No wonder, when those who break the secrecy tell us what a load of twaddle his so called scientific basis is, and how much his methods depend on patients being told to lie about their symptoms and even to sign documents to say they have recovered as part of their training.
I know a fair amount about brain retraining and I have only come across one instance of people being told they aren't using the correct method to recover.
You need to get out more. What a blinkered view.
I don't understand why you would want to argue that patients reporting improvements in trials that run for weeks or months shouldn't carry any weight when it risks people not believing how unwell some of you are. And yes, I appreciate some people can measure time in bed, steps walked, etc but they are still falsifiable and subjective, in reality. The only way of understanding M.E, both level of illness and level of improvement or decline is subjective self-report. The CPET isn't valid, based on current research. It is also questionable ethically, if participants are scared of going through it. Many recovering patients I've spoken to say they wouldn't have wanted to do it when still ill in case of being pushed into a long lasting crash by it.
Look at the different outcomes of the blinded and unblinded Rituximab trials. Learn about clinical trial methodology. It's funny that the promoters of the PACE trial of CBT and GET for ME/CFS defend their use of subjective outcomes in unblinded trials and say the same stuff about symptoms being subjective and we have to believe them, yet they refuse to accept their patients who report serious harm from their methods in large surveys should also be believed.
Please, before you try to respond to anything I have said, read every one of the patients accounts of LP in this document:
https://lp-fortellinger.no/en/lp-stories/
And when you have read them all, write a considered response to their experiences that by your own words we have to believe. And compare them with the claims made about LP by its promoters.
If there is nobody in the secret brain retraining groups you belong to reporting getting sicker after doing the training, have you asked why? Have you asked whether people who say negative things get kicked out of such groups? Have you asked whether they do follow up on every single member who has joined and undertaken the training for at least 3 years to find out whether they relapsed? UK ME/CFS clincs don't keep such information about harms and long term follow up of all their patients, so have got away for years with harming people. Maybe the same is happening with brain retraining. You can't know that if the research isn't done.
Think of the harm you and your friend Paul Garner may be unwittingly doing to thousands of people. Neither of you know whether that's the case because you haven't done the research.
If Garner wants to show what a good scientist he is, let him come here and work with us to ensure any trials happening now have registered their protocols, and follow all the trial methodology needed to make them have valid outcomes.
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I have had ME/CFS for decades as has a family member I care for. You judge us wrongly and very hurtfully with your assumptions about us.
We are well aware of the stories of secret groups full of recovered people. You seem to think we dismiss them because we don't want to get better, or because we are prejudiced. You couldn't be more wrong.
Open your eyes. Listen with an open mind to the experience of people who have suffered terribly at the hands of people Garner supports.
Learn why we question evidence, ask for clinical trial evidence and don't fall at the feet of every snake oil salesman, whatever professorial status they may use to push their unevidenced claims.
And now I must stop. Please prove to all of us that it has been worth using up our limited energy trying to make you see how much harm Garner is doing with your support. Open your eyes. Listen and learn.
Why don't you identify yourself? Are you afraid us too?