Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

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I am quite enjoying these threads now that i have made use of the ignore function.

It always amazes me how many times one can give the benefit of the doubt and with a little exploration find that there is no doubt.

It is all frauds and their groupies.
It is useful to have that brought to one's attention by new posters from time to time.
 
MrMagoo said:
It’s all very “I’m an American who can’t afford healthcare”
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Yes that is part of it for a lot of us poor, uninsured or under-insured Americans who can't access disability benefits and can't work enough. I have not been able to access medical or dental care that I need for the last 15 years, or not reliably so. Even in potentially life-threatening emergencies. There are about 10 states in the US that do not have state sponsored insurance even for the poorest of people. So you'll hear many Americans say they have Medicaid and think that everyone has access to Medicaid, but those of us in certain states have nothing. And some of us have been voting for all the right people and were politically involved for decades to no avail, so it's frustrating when people dismiss us with, "well they voted for this"

so yeah these programs have held their allure in times of desperation for people like me when we are faced with the eventual prospect of literally dying on the street if we cannot improve, but we may be able to spare the $300 when one of the more affordable programs goes on sale
 
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Today I watched a youtube interview by Ben of re_origin with Raelan. It's 2 years old and 45 mins long. What a waste of my time.. It seems to be re-hash of the sort of stuff taught under the NHS and the auspices of the queen of research grants, and under which I was treated and severely harmed 15 years ago (the basis of my claim under the Ombudsman. @UkPoster please do not attempt to make assumptions about what I was or was not taught as I was trained by the people who literally wrote the the NHS published book on it in 2006.

3 days spending a little time on the internet and my body is now screaming at me and today sweat has been pouring off me in rivlets among many other symptom, so I'll say tarah for now.

But I will leave you with this thought; there is no incentive to speak out and protect patients from unregulated, unsupervised and potentially harmful therapies, in an arena where no accountability for harm can be sought, as the chances of these course providers carrying indemnity insurance is slim to none.

But what it does provide are success stories a plenty with no serious follow up. Why would there be the need for research, when youtube and social media provide anecdotal evidence for free. Hell, no problems with pesky informed consent issues either. Let the hoards of clamouring 'recovery' stories multiply until they drown those who have been undeniably harmed No need for inconvenient definitions of 'recovery' or Helsinki rules to trouble consciences.

About us — Oslo Chronic Fatigue Network

www.oslonetwork.no www.oslonetwork.no

I also looked up the meaning of clinical reputation laundering, suggested by an algorithym.

I'm off to wrap a cold wet towel around my neck which usually calms down the profuse sweating quite quickly. and see if I can force down some pureed nutrition.
 
Joni said:
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.
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I wonder if one of those hugely popular investigative journalism youtubers would be interested in exploring this stuff.

I imagine that the ME/CFS primer that's apparently in the works would be a good resource to share when reaching out to people like that.

Is a mention of this side of ME/CFS in scope for that document? (@Hutan, are you the right person to ask?)
 
More about Miguel and Raelan in a comment on this thread. I believe the group is a large MECFS recovery group on Facebook.

I'm the moderator of Raelans group who was banned for stepping down, because I didnt agree with the page being leveraged for business interests and also, the lack of transparency planned around how Miguel would be granted access to the space, nor the business partnership taking place between Raelan and Miguel. After stepping down as moderator, I was banned hours later, never to be invited back, then scape goated in the space, thrown under the bus, and the community was told that I was "endangering the well being of sick people" by stepping down before Raelan had her chance to make an announcement about the upcoming changes. Basically I was thrown under the bus, slandered and defamed in order for the new regime to take over. It's a real bummer as I was a care taker to that space with the other mods for years, while raelan had nothing to do with the space; and when she came back in after it had grown to 12K members, and we were not on board with the changes which felt like a betrayal to the spirit of the space, we were told to leave quietly. I left quietly but by stepping down made it obvious something was happening I could not support, and was BANNED from the space.
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Joni said:
Yes that is part of it for a lot of us poor, uninsured or under-insured Americans who can't access disability benefits and can't work enough. I have not been able to access medical or dental care that I need for the last 15 years, or not reliably so. Even in potentially life-threatening emergencies. There are about 10 states in the US that do not have state sponsored insurance even for the poorest of people. So you'll hear many Americans say they have Medicaid and think that everyone has access to Medicaid, but those of us in certain states have nothing. And some of us have been voting for all the right people and were politically involved for decades to no avail, so it's frustrating when people dismiss us with, "well they voted for this"

so yeah these programs have held their allure in times of desperation for people like me when we are faced with the eventual prospect of literally dying on the street if we cannot improve, but we may be able to spare the $300 when one of the more affordable programs goes on sale
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I’m sorry that’s the case for you. The NHS Isnt brilliant bit at least we have something. Usually. Dentists can be hard to see.m

I see them as part of your MLM type of thing, like Herbalife?
linked to your prosperity gospel type of evangelical churches, everyone needs to be healthy, wealthy, well-behaved and have a shirt and tie on, cookie cutter style.

Which is why it jars a bit for me.
 
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Joni said:
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.
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Interesting. Here's are snippets from Anj's description of events:
4. In order to create a feeling of safety, we stopped allowing service providers to promote their work. We held ourselves as moderators to the same rules, viewing our work as a kind of public service.
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6. In early December, we were made aware that Raelan would be returning, & making significant changes that seemingly went against the new energy of the space, including affiliate marketing partnerships being grandfathered in & given a voice.
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9. Jack, followed by myself made our own announcements first,about stepping down in our roles; for reasons we have both already shared openly.
10. I was then banned.
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I'm curious what Raelan's version of the story is.
 
It's a real bummer as I was a care taker to that space with the other mods for years, while raelan had nothing to do with the space; and when she came back in after it had grown to 12K members, and we were not on board with the changes which felt like a betrayal to the spirit of the space, we were told to leave quietly.

I guess this poor soul thought they were 'helping' 12 thousand people too.

It brings me back to my thought that the adage 'first do no harm' applies to all human beings, not just doctors.
 
UkPoster said:
obvious how ill they were and how well they are now. You can see it in the photographs. Multiple photos. And people come back and give updates a year on/two years on/five years on to say 'I'm still well.' I do understand why you want to make it make sense in your mind and undermine this narrative
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Please take some time read this:
en.wikipedia.org

Survivorship bias - Wikipedia

en.wikipedia.org en.wikipedia.org

“Survivorship bias or survivor bias is a statistical error that results from concentrating on entities that passed a selection process while overlooking those that did not. This can lead to incorrect conclusions because of incomplete data”

The gold fish bowl of brain retraining: Surrounding yourself in only fb and WhatsApp groups of people who post they are better is the definition of survivorship bias.

What about the others who don’t post?
 
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