Everything has a weakness but this recovery stuff is unlikely to be its own fair critic because it proclaims that its success is based on mindset, so it will not be going around criticising itself. Simples. Those is in power should appreciate this. They entirely failed to appreciate this of CBT/GET.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
- Start date
Lou B Lou
Senior Member (Voting Rights)
Brain Training is now pretty much A Brand.
I am very concerned that the term 'Brain Training' is now a catch-all term for practices that have been around for years/decades/millennia (meditation/mindfulness/yoga nidra) -
Practices that millions of people worldwide, and a great many ME sufferers, have done for years/decades, but which have not actually cured ME.
Meditation, mindfulness, Yoga Nidra (deep relaxation), positive affirmations, positive visualizations,
and NLP tactics - such as the visualising/re-experiencing a time in the past when you were happy/confident/successful - and then projecting those feelings/visualisations into the future ..... that is a bog standard NLP technique that's been around for decades .....
Personally I think it's rubbish, I learned it in the 80's, never worked for me, struck me as a kind of 'filler' exercise in the NLP world, a pseudo triumph of hope over reality.
I am concerned that the techniques listed above, which numerous people with ME have done for themselves in the course of their illness, either because they already knew the techniques and used them hopefully , or because they learned them on some recovery course or other ..... and which did not create any ME cure -
All those practices and more are now all being marketed as Brain Training.
All of those techniques and more are now subsumed under the 'Brain Training' label.
So, for a start, if pwME want to state that they find meditation etc helpful in any way (as a temporary help with muscle pain for example, relaxation, etc) -
I suggest that people don't call any of those specific practices/techniques 'Brain Training' -
Because that will simply reinforce the pubic profile of the Brain Training Brand.
.
Last edited:
MrMagoo
Senior Member (Voting Rights)
Linking back to this thread, in which a “research article” identifies several types of similar brain training courses into one category with Lightening Process.
Trigger warning for massive dot-joining involving Oslo, Garner, Chalder and other luminaries regularly silenced by the medical establishment
Trigger warning for massive dot-joining involving Oslo, Garner, Chalder and other luminaries regularly silenced by the medical establishment
Can we also highlight Jonathan Edwards contribution to internet meme history with “Paul Woof Sealion Garner”Trial By Error: Claims Built on Fraudulent Trials Should Be Ignored | Virology Blog
By David Tuller, DrPH When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is ...virology.ws
"When researchers cite fraudulent studies in support of their claims, it is best not to take anything they write at face value. That is certainly the case with a recent paper titled “Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery,” published earlier this month in the Scandinavian Journal of Primary Health Care. (I use “fraudulent” here not in the legal sense but in the sense of “deceptive” or “deceitful.”)
As evidence of something or other, the paper’s references include both the fraudulent PACE trial, whose reported findings have been discredited and rejected by leading medical authorities, and a fraudulent pediatric trial of the Lightning Process, in which the investigators violated core methodological principles of scientific research. (The Lightning Process, a woo-woo “brain retraining” program, was created by osteopath and former spiritual healer Phil Parker, who once claimed to be able to diagnose people’s ailments by stepping into their bodies for a look-see.)"
MrMagoo
Senior Member (Voting Rights)
UK doctors shouldn’t be advising “aggressive rest” defined as not allowing yourself to do anything at all because that’s against the NICE guidelines.
So that’s that rebutted.
Along with diagnosing ME after 8 weeks.
Some very poor GPs out there.
So that’s that rebutted.
Along with diagnosing ME after 8 weeks.
Some very poor GPs out there.
Last edited:
Liie
Senior Member (Voting Rights)
Regardless of if it is true that anyone has really been told this it is a statement that gets repeated regularly.
I think ME/CFS advocates (in which I include both us and patient organisation) should take this into account.
I think advocates should be explicit about that a bit of gentle physical activity and going outside is probably good for people with ME/CFS, for both the physical and mental health. The important thing is to not over-exert oneself, and that it isn't a cure for the condition, and some people are too sick to do it.
I think most people already think like this, and maybe this is what organisations already saying.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
I think we have quite convincing evidence that some physicians in the UK have been advising this - from individuals we have every reason to believe, who have nothing to do with brain retraining or Wessely. I don't think this has been made up by people like Whitfield.
I don't know who Garner talked to at the point where he was convinced that he had life-long ME but I don't think it helped anybody.
Lou B Lou
Senior Member (Voting Rights)
Well yeah. Actually that's true up to a point. But it's seriously Not Good (It's not actually possible) for very severely sick people with ME at a certain level of illness.
Hell - I never Effing needed to be told that being outside and moving was good for me!
In the years I was Very severely sick all I wanted was to go outside -
- I did when I could, I had a little light mattress that fitted on my flat balcony, It was Heaven to lie out on my big balcony, surrounded by trees, masses of cherry blossom in the spring .....
so green, fresh air, birds, foxes, hedgehogs
Oh God, It Was Heaven_.
But at times my light sensitivity meant I had to wear a blindfold and closed curtains for weeks -
NB - Light Sensitivity means PAIN.
Last edited:
Peter T
Senior Member (Voting Rights)
I think this illustrates that no one should be dictating to people with ME/CFS what they should be doing or not doing, rather professionals should be encouraging people to listen to their own body and be given permission not to do anything that makes them feel worse.
WOW! Talk about old wine in new bottles on repeat.
What this research describes as recovery under the heading maintenance is not what many of these digital recovery stories are disclosing.
I'm beginning to get the impression, remembering thread posts over recent days, that standing up for rigour in science is in itself being considered as a perfectionist personality trait referred to in this research.
MrMagoo
Senior Member (Voting Rights)
Probably why relatives and caregivers are being targeted by the brain train, Choo Choo!
Utsikt
Senior Member (Voting Rights)
That’s what I kept telling myself as I deteriorated. Unless you are severely depressed and avoiding activities you clearly can do, I see no reason to tell people with ME/CFS that they need to make sure to go outside or do things.
My life became so much better once I didn’t have to deal with bright sunlight, noises and trying to go for very short, incredibly slow walks. It doesn’t do anyone any good to walk arbitrary distances or be in arbitrary, but much harsher environments.
It’s good for people to avoid unnecessary suffering and symptoms.
MrMagoo
Senior Member (Voting Rights)
Yeah it’s really good for us, someone should look at providing aids and care to facilitate it…Well yeah. Actually that's true up to a point. But it's seriously Not Good for very severely sick people with ME at a certain level of illness.
Hell - I never Effing needed to be told that being outside and moving was good for me!
In the years I was Very severely sick all I wanted was to go outside -
- I did when I could, I had a little light mattress that fitted on my flat balcony, It was Heaven to lie out on my big balcony, surrounded by trees, masses of cherry blossom in the spring .....
so green, fresh air, birds, foxes, hedgehogs
Oh God, It Was Heaven_.
But at times my light sensitivity meant I had to wear a blindfold and closed curtains for weeks - NB - Light Sensitivity means PAIN.
josepdelafuente
Senior Member (Voting Rights)
Yes I think this is true!
I've had that impression too. I think there is an undercurrent in the linking of intelligence and autism. As in, 'yes, you might be clever, perhaps even cleverer than me in a limited way. But you are not normal, you are autistic, so your opinions hold much less weight than mine.' Labelling someone who is disagreeing with you as autistic seems to be sometimes used as a weapon when people feel a bit insecure about their own intelligence.
It is an effective way of cutting down people with ME/CFS who value evidence analysis and so are skeptical about brain training. The suggestion is that opposition to brain training is only because someone is not able to face up to their own neurodivergence, trauma and personality problems.
I don't think the blame for Garner being convinced he had life-long ME, if that is indeed what he thought, can lie with someone he spoke with. Garner held professional roles in infectious disease and in medical evidence analysis, he had had a whole career in those fields.
If anyone had the tools and knowledge to know that fatiguing illness after infections is extremely common and that the vast majority of people who experience it recover within three years, it would be Garner. We've said it before, very little about Garner's reported experience makes sense.
Last edited:
MrMagoo
Senior Member (Voting Rights)
It’s “virtue-signalling” or what used to be called being arrogant, that you think yourself better than others.
Joni
Established Member (Voting Rights)
This is not true. This is all assumptions.
Many people who are recovering have identified they are neurodivergent in some way, during the process. The realisation has taken many by surprise (and for some it's confirmed what they've long known). But for most of them it's helped them understand themselves far better and their symptoms as well as what they need moving forward to live a good life. This isn't about judgement or using this idea as a weapon. There is NOTHING in what I've posted that suggests that someone's opinion holds less weight if they are neurodivergent.
This is about only about finding pieces of a broader puzzle that might be helpful in terms of moving towards recovery. And particularly with women we know that neurodivergence can be very easy to miss.
This is interesting reading on autism and psychosomatic symptoms:
And here is a paper on numbers of young autistic adults who have psychosomatic symptoms: https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.2671
MrMagoo
Senior Member (Voting Rights)
Well it’s a recovery story, so there are no standards to hold it to, could have been told they might fly out of the window, no way to prove or disprove it.
That’s the trouble with peoples recovery stories.
There is no incentive to take part, as far as I know. There is a long waiting list of people waiting to be interviewed at present, so no incentives needed. Did you see the latest interview? The woman featured recovered without paying for any course, her recovery all came from information in the public sphere. She also doesn't need the publicity, she has over 600k followers of her own on YT for her novels,
