josepdelafuente
Senior Member (Voting Rights)
Thanks @dratalanta for responding to this! @UkPoster this comparison of yours did concern me a lot, @dratalanta has responded much better than I could have!
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
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Evergreen
Senior Member (Voting Rights)
There have been thousands of recovery anecdotes attached to all kinds of things over the years. For example, in the MEA's 2010 survey again, where both "chiropractic" (5th from top) and homeopathy (7th from bottom) feature:
Ditto.
Hoopoe
Senior Member (Voting Rights)
I once heard the news of a miracle in Saint Peter's Square. During a religious event, a man in a wheelchair had risen up and walked. I knew that most wheelchair users are able to stand up and walk short distances, so the interpretation of a miracle seemed like a misinterpretation of a normal event.
We know that it's normal for people to recover from ME/CFS and Long Covid, especially in the first years. A recovery is not an extraordinary event that requires an extraordinary interpretation. Having recovered is not evidence that a person possesses special knowledge that would make them an authority on recovery.
We're not asking for "perfect evidence" but any evidence at all.
Personal testimonials are not evidence. A person saying "I witnessed the miracle in Saint Peter's Square and it truly happened." is not evidence. Many people saying this are also not evidence.
What you need is a controlled experiment. There are well-stablished standards of what that looks like.
We know that it's normal for people to recover from ME/CFS and Long Covid, especially in the first years. A recovery is not an extraordinary event that requires an extraordinary interpretation. Having recovered is not evidence that a person possesses special knowledge that would make them an authority on recovery.
We're not asking for "perfect evidence" but any evidence at all.
Personal testimonials are not evidence. A person saying "I witnessed the miracle in Saint Peter's Square and it truly happened." is not evidence. Many people saying this are also not evidence.
What you need is a controlled experiment. There are well-stablished standards of what that looks like.
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We are not looking for perfection, we are looking for the sort of evidence required of every drug trial before it can be approved as a treatment for a particular condition.
Would you recommend a powerful drug to everyone with ME/CFS on the basis of private facebook groups where people are experimenting with it? We have seen some of that with drugs like abilify and neck surgery and poo transplants, all of which can cause harm. We rightly critique those. Criticising the lack of research evidence for those treatments is not sneering, it's a medically sound requirement for clinical trial evidence before we allow those treatments to be recommended. That's what this forum is for. Examining the evidence.
Why would anyone expect brain retraining to be recommended without challenge on this forum? It has no more evidence for ME/CFS than neck surgery.
We have had people joining the forum to evangelise about all sorts of unevidenced treatments for ME/CFS, with the same pattern of so called evidence consisting of:
1. unverifiable claims of thousands of recovered patients gathered in private online groups,
2. a made up 'science' consisting of a story cobbled together from a mix of poorly conducted or irrelevant research and sometimes some popular science books that tell an uplifting story based on anecdotes and pseudoscience, and a few clinicians making money out of the treatment. The 'science' presented to us as a list of links to articles and books telling us to read them.
3. Accusations that we are closed minded, don't want to get better, are too scared to try it, enjoy secondary gains from staying sick,
4. Pushing us hard to try the treatment, claiming it doesn't cause harm, and ignoring or dismissing reported harms.
5. Sometimes singling out members who are desperate to try anything and telling them they would be ideal subjects for the treatment (which is medical advice not allowed on this forum - if anyone receives a forum private message about treatment, please report it to moderators - it happens, including to me in the past).
Questioning so called evidence and claims are not sneering.
Part of the point of my last post was less so that I'm just waiting to see good research (though I welcome it if that happens) and more so that the lack of research is itself evidence that the treatment is probably not as effective as claimed.
Trials of brain retraining do happen. So the question is why the researchers choose not to design them in a way which would provide strong evidence of efficacy. Could it be that the researchers themselves don't think the results would be positive if they used objective outcomes and appropriate control groups?
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MrMagoo
Senior Member (Voting Rights)
Don't chiropractors cause harm and death as well?
I mean, lots of people find alcohol or drugs improve experiences for them but they are expensive and dangerous to health.
MrMagoo
Senior Member (Voting Rights)
Wow I didn’t see this!
Thank you for responding, jeez the utter “last century” level of understanding, where was this information gleaned from, watching old soaps and tv dramas?
Not to mention the offensiveness just all over.
Why wouldn’t brain training people be up to date on concepts like coercive control?
JellyBabyKid
Senior Member (Voting Rights)
This was my question. Thanks for replying @UkPoster
Alan Gordon has the most soothing voice, and the audio of his book "The Way Out" is available through the library.
I am afraid I think I must have fallen asleep after "somatic tracking" as I seem to have missed the rest of his explanation of his methodology!
The five year follow up of the PRT study it is based on link is discussed here: https://s4me.info/threads/effect-of...rct-2021-asher-gordon-et-al.22612/post-700686 and seems to show that the improvement in pain reduces over five years.
Liii
Senior Member (Voting Rights)
I just want to insert that I think it is important to be clear about that it is not possible to directly measure neither pain nor fatigue. I think that it is more accurate to say the "questionnaire reported pain".
JellyBabyKid
Senior Member (Voting Rights)
That's a fair clarification
Actually, those exist. Like Scientology, they are secrets only available behind a paid subscription. And making them publicly available would lead to legal complaints, intellectual property, commercial secrets, and so on.
But since this is a science forum, it would only be fair to have this material out in the open, those programs have never actually been scrutinized. Which of those programs are open source and available, the full thing, with evidence and so on? Not marketing videos, actual evidence.
Many of those programs are very short. The content is usually rather short, no matter how long they go. The rest is working through the exercises, or whatever, and the magic that therapists bring with their... understanding of... trauma and fear, or something like that. Which most of us don't have but whatever that's the nature of their product.
Even with most of the CBT trials we see multiple times per week, the content is never available, it's always restricted. But it's also almost always identical to one another, so being able to see a few would give a good idea of what they hold. What makes some programs good, and others bad? No one can say.
Let's see it all. Actually that would make an interesting exercise instead of this pointless argumentation about what they might say if we could access them.
Utsikt
Senior Member (Voting Rights)
In case you missed it, my comment mentioned how Wyller just got a £2M grant to do his third BR study despite two null results.
Live Landmark has put thousands of patients through LP in Norway, worth millions of revenue.
Your excuses make no sense.
Utsikt
Senior Member (Voting Rights)
Can you see how someone might perceive what you’re doing here as propaganda?
An expression of opinion or action by individuals or groups deliberately designed to influence opinions or actions of other individuals or groups with reference to predetermined ends. (Miller, 1939).
A process which deliberately attempts through persuasion-techniques to secure from the propagandee, before he can deliberate freely, the responses desired by the propagandist (Henderson, 1943, p. 83).
The attempt to affect the personalities and to control the behavior of individuals towards ends considered unscientific or of doubtful value in a society at a particular time. (Doob, 1948, p. 240)
The deliberate attempt by some individual or group to form, control, or alter the attitudes of other groups by the use of the instruments of communication, with the intention that in any given situation the reaction of those so influenced will be that desired by the propagandist (Qualter, 1962, p. 27).
Any conscious and open attempt to influence the beliefs of an individual or group, guided by a predetermined end and characterized by the systematic use of irrational and often unethical techniques of persuasion (Smith, 1989, p. 80).
Propaganda represents the work of large organizations or groups to win over the public for special interests through a massive orchestration of attractive conclusions packaged to conceal both their persuasive purpose and lack of sound supporting reasons (Sproule, 1994, p. 8).
The organized attempt through communication to affect belief or action or inculcate attitudes in a large audience in ways that circumvent or suppress an individual’s adequately informed, rational, reflective judgment. (Marlin, 2013, p. 12)
Propaganda is manipulation of the rational will to close of debate (Stanley, 2015, p. 48).
Source
A process which deliberately attempts through persuasion-techniques to secure from the propagandee, before he can deliberate freely, the responses desired by the propagandist (Henderson, 1943, p. 83).
The attempt to affect the personalities and to control the behavior of individuals towards ends considered unscientific or of doubtful value in a society at a particular time. (Doob, 1948, p. 240)
The deliberate attempt by some individual or group to form, control, or alter the attitudes of other groups by the use of the instruments of communication, with the intention that in any given situation the reaction of those so influenced will be that desired by the propagandist (Qualter, 1962, p. 27).
Any conscious and open attempt to influence the beliefs of an individual or group, guided by a predetermined end and characterized by the systematic use of irrational and often unethical techniques of persuasion (Smith, 1989, p. 80).
Propaganda represents the work of large organizations or groups to win over the public for special interests through a massive orchestration of attractive conclusions packaged to conceal both their persuasive purpose and lack of sound supporting reasons (Sproule, 1994, p. 8).
The organized attempt through communication to affect belief or action or inculcate attitudes in a large audience in ways that circumvent or suppress an individual’s adequately informed, rational, reflective judgment. (Marlin, 2013, p. 12)
Propaganda is manipulation of the rational will to close of debate (Stanley, 2015, p. 48).
Source
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an important point of course is that there isn’t even any logical or past evidence to say it does anything other than harm
So we are not saying or sponsoring that this is an area ‘worth researching as a cure, support or ‘help’’. It’s just a rebranding of the SOS that didn’t and doesn’t work and is supply-led.
That point needs to be underlined that money shouldn’t be wasted as it has done iteratively by those in the past who used iteratively increasingly poorer and less robust methods trying to get their desired result in order to claim such things work. When other areas that do need research got neglected to these false ‘what ifs’
But one certainly should not be going around misleading patients and in particular inciting others (‘the report’ being aimed at politicians healthcare etc) with lies about those seriously ill stating ‘they choose to be ill’, based on both no new properly done evidence and a history suggesting it risks harm and doesn’t help - that’s slander / bigotry in its basic form without strong proper evidence, when any evidence based on anywhere near proper methods says the opposite for these types of things (and so on endless versions different by name only, do Not hold some kind of entitlement to ‘be considered’ because of a bit of storytelling from people who mostly are practitioners who therefore have a financial interest etc, or indeed those part of it because they are interested in becoming such ).
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Mij
Senior Member (Voting Rights)
Could you describe/share what you recovered from? I must have missed that part.
The fact that almost no one in the brain training world has publicly criticized the outrageously scammy tactics of Miguel Bautista of CFS Recovery says it all.
That guy publicly stated on some get rich podcast that his goal was to make a million dollars a year from selling his $7k recovery program. Any less than the "double comma club" would be very disappointing to him. In another clip he discussed what kind of cars and extravagant lifestyle he was aiming for.
And yet most of these trainers have not said anything in response to that.
the only person publicly distancing herself from him is Anj Graineri. She was a moderator in Raelan's FB group. When Raelan appointed Miguel as co moderator, Anj objected. Raelan kicked Anj out of the group and blocked her, which I'm sure is a hard blow for someone trying to sell brain retraining courses.
Now Raelan is partnered with Miguel to sell his scam courses.
All of this is publicly available information.
I can't imagine the lack of integrity for these people to not say anything in response to Bautista's appalling behavior. Of course it would sever ties with a big source of their income, Raelan.
That guy publicly stated on some get rich podcast that his goal was to make a million dollars a year from selling his $7k recovery program. Any less than the "double comma club" would be very disappointing to him. In another clip he discussed what kind of cars and extravagant lifestyle he was aiming for.
And yet most of these trainers have not said anything in response to that.
the only person publicly distancing herself from him is Anj Graineri. She was a moderator in Raelan's FB group. When Raelan appointed Miguel as co moderator, Anj objected. Raelan kicked Anj out of the group and blocked her, which I'm sure is a hard blow for someone trying to sell brain retraining courses.
Now Raelan is partnered with Miguel to sell his scam courses.
All of this is publicly available information.
I can't imagine the lack of integrity for these people to not say anything in response to Bautista's appalling behavior. Of course it would sever ties with a big source of their income, Raelan.
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Chandelier
Senior Member (Voting Rights)
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