Gupta amygdala training program for ME/CFS, FM and Long Covid - news and discussion

This thread made me turn to Google to see if my recollection was correct that studies had shown no curative benefit to cancer patients from positive thinking. I came upon a fascinating piece in Psychology Today by "mind-body medicine physician" Lissa Rankin which acknowledges precisely that, then goes on to include some pretty bizarre stuff that maybe explains how people can keep churning this stuff out. It's worth a read:

... whether positive thoughts can affect the health of the body ... Some studies performed on very sick cancer patients have shown that it can't. In fact, one of those studies was performed on the patients under the care of my friend and fellow Owning Pink blogger, Dr. Bernie Siegel, author of Love, Medicine & Miracles. When patients in his positive-thinking ECaP program for cancer patients were studied, they were found to have no higher rates of cancer cure than those who didn't complete the program.

So does this mean positive thinking doesn't work? It's enough to confuse anyone. [no it isn't *]
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It seems to me that the equivocation over whether support groups help cancer patients in randomized controlled trials is a bit silly, because while you can study cure rates, you can't really study rates of healing, and as you and I both know, healing and curing are different.

I would argue that your patients - even if they died - probably died healed because of the love and support. But that's just my two cents.
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https://www.psychologytoday.com/us/blog/owning-pink/201112/can-positive-thinking-help-you-heal

So there you have it. You don't need to get any less sick to be healed. In fact, you can be dead, but still healed.

These people are dangerous

* source: me
 
I just read that Lissa Rankin article :(

It seems to me that 'healing' is a word that has a lot of different interpretations and Lissa Rankin seems to be very good at exploiting this.

Cure is a relatively stable word because it means absence of disease, which is measurable. Healing is more of a slippery word because we often talk about emotional healing or spiritual healing which is not measurable. But the world healing can also mean cured.

Words have different meaning depending on the context in which they're spoken. It's widely accepted that when a physician says 'healed' they mean 'cured' (and they definitely don't mean dead!!!) i.e. when a doctor says 'you're healed' they don't mean 'you're spiritually whole' or 'emotionally healthy', they mean 'you're physically cured'. It's not because they don't understand or are 'resistant' to the importance of emotional wellness, it's because they are using science which is the best we have right now.

Lissa Rankin is a physician, she sells her books based on this. So when she uses the word 'healing', it doesn't imply spiritually 'at peace'/ emotional healthy/'accepting', it implies cured. If she's going to sell her books based on her experience as a doctor, she should be aware of what this means for the language she uses and how its interpreted. It's very manipulative and dangerous to ignore this.

Perhaps she should rename her books 'how to feel a bit happier whilst still dying of your illness'. It might make things a bit clearer!
 
Tia said:
It's widely accepted that when a physician says 'healed' they mean 'cured' (and they definitely don't mean dead!!!)
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LOL

Tia said:
Perhaps she should rename her books 'how to feel a bit happier whilst still dying of your illness'. It might make things a bit clearer!
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Exactly. Until psychologists (which I think includes the 'mind/body' physicians) starts being up front about what it is they're offering, and what it isn't, I'll continue to regard the whole lot of them as frauds exploiting the nuances of language to assert their value.
 

Yep! The thing I find frustrating is that if they were upfront, I'd actually agree with a lot of what they say. I do think it's possible to live well and with positivity despite having a physical illness. I just can't abide by them marketing it as a cure for the illness itself.

I actually think a lot of them are very confused themselves about the mind/body link and about the affect of thoughts on the body. The irony is that we're probably the experts because we live it but they cut themselves off from listening to us because they want to believe that positivity can cure all.
 
The positivity-cures-all believers are very hard if not impossible to convince to reconsider their blind faith.
If something is not working you just have to work on it harder or tweak the program a little bit.
Or take some supplements with it maybe.

I promised myself I will never again pursue any alternative or highly experimental treatment.
Only thing I do now is eat very healthy, keep stress levels down and rest a lot. No doctors, no treatment, no quacks, no supplements. And above all no psycho-BS.
Just try to stay alive and wait for science to come through.
Although I realise that may take decades.

It's hard to suffer without "being on a program" or some sort of "treatment".
You have to commit to yourself that you have no control over your illness whatsoever. And no treatment or cure exists. And all the recovery stories are BS.
Some call that attitude negative. I call it realism. And it saves me and my family tons of money.
 
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chrisb said:
I shall believe in the power of positivity when they find a way of communicating with the dead to confirm their negativity.
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Ye, ill even settle for a lost limb to grow back. Actually even a small end of a finger that's been lost in an industrial accident. Surely if you can think yourself better to reform cancerous tissue into healthy tissue you can grow back the end of your finger that's been cut off!!
 
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large donner said:
Ye, ill even settle for a lost limb to grow back. Actually even a small end of a finger that's been lost in an industrial accident. Surely if you can think yourself better to reform cancerous tissue into healthy tissue you can grow back the end of your finger that's been cut off!!
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It's possibly not possible coz of things - things like no one starts with convincing themselves they are one of those lizard thingies that can regrow lost bits, or maybe they do but after regrowing they forget to convince themselves they are a human, coz lizards not big on metaphysics.

It be pointless trying to convince you're a human that can grow bits back, coz humans cannot do this, and humans know this, so it doesn't work.
 
Unfortunately, I too bought the Gupta programme some 10 years or so ago, at the beginning of my ME and when I was feeling pretty unwell. I remember putting the silly bit of paper on my bedroom floor and being annoyed as I have a tiny bedroom and it didn't even fit on my floor properly, and then trying to do what they asked. Having to shout STOP at myself made me feel miserable. I had so many restrictions, it felt very negative to be doing this.

I was actually quite appalled at how similar it was to LP, as I had bought it thinking it was different. Anyway within minutes I had a migraine, and climbed back into bed again and felt very frustrated with the process.

The more I got into the programme the more depressing I found it - it did the opposite of uplifting me, and I just gave it up as a bad job in the end.
 
Sunshine3 said:
Totally with you Mattie, I purchased the Gupta programme too in early months of illness, what a load of codswallop. I also had sessions with the ME self help guru. I would have tried anything. I know better now. @Invisible Woman I actually had a row with my dad yesterday, he was on about one of the mums at our local school who has cancer and how she wouldn't be alive today were it not for her positivity. I went bananas and said she may be positive but she also has a fantastic medical team and access to treatment that is keeping her alive. Also mega local support in terms of fundraisers, hero status etc...(I can't help feeling a tad bitter about my own lack of support) Anyway, as Mattie said, only science can save us.
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If positivity is what keeps people going, why are so many scheming, nasty people still alive? Shouldn't their attitude have killed them?
I will agree a touch that, all things being considered, it's best to retain or invent a positive outlook for a good part of the time. But we still have to face reality now and then, which is that if you don't recover in 6 months you're going for a rough ride, and if you don't recover in 2 years your chance is down to 5% or so. I remember thing that "this will just blow over" and being a bit surprised when it did't. That attitude did keep me out of absolute despair, but it did not help for making realistic plans, to the extent any were possible.
There's some value in the positive attitude biz, it can also be a construction for the convenience of other people. Nobody has much patience with hearing about other's troubles, except for people who want you to be the object which who more broken than they.

edit: I changed "There's some truth in the positive attitude biz" to There's some value. The positivity can be a bit of strategic foolery - your situation really is bad, but the way our nature works is that dwelling on that for long drags us down.

We have to develop a sort of sea-captain character: know when the ship is going down and that a wet, choking, lonely death is likely, then set that aside and get back to work using all available tools to avoid that fate, getting fresh water, tarps and provisions into the lifeboats, picturing how you will launch them in heavy surf, etc.
 
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Tia said:
I just read that Lissa Rankin article :(
......
Lissa Rankin is a physician, she sells her books based on this. So when she uses the word 'healing', it doesn't imply spiritually 'at peace'/ emotional healthy/'accepting', it implies cured. If she's going to sell her books based on her experience as a doctor, she should be aware of what this means for the language she uses and how its interpreted. It's very manipulative and dangerous to ignore this.

Perhaps she should rename her books 'how to feel a bit happier whilst still dying of your illness'. It might make things a bit clearer!
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It would also make things much less advantageous to Lissa Rankin.
 
Skycloud said:
Well done the MEA
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Just to be clear. The ME Association did not make this complaint, but we do support the findings.

Out of interest, what would be the most basic scientific study that practitioners such as Gupta could perform to substantiate the claims that are often made? Presumably, it would need to be conducted by independent researchers ideally, but what could the practitioner do themselves to improve legitimacy as a minimum?
 
Russell Fleming said:
Just to be clear. The ME Association did not make this complaint, but we do support the findings.

Out of interest, what would be the most basic scientific study that practitioners such as Gupta could perform to substantiate the claims that are often made? Presumably, it would need to be conducted by independent researchers ideally, but what could the practitioner do themselves to improve legitimacy as a minimum?
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Nothing, it's pure bullcrap.
 
Russell Fleming said:
what would be the most basic scientific study that practitioners such as Gupta could perform to substantiate the claims that are often made?
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Well, that's an interesting question. It seems that research standards in behavioural/psychological interventions are generally quite poor in terms of risk of bias etc.

If it is to be marketed as a therapy for sick people then I would want to see it undergo rigorous trials. Far more rigorous than PACE, for example.

My reasoning is that some sick people may be made worse by participating - such as ME patients using energy they don't have to try it.

Also, patients who no longer have income may be going without other things that might be more helpful for them in order to fund this.

There is also a social pressure aspect- my sister's nephew's ex-girlfriend did it & now she can go clubbing,so if you really wanted to get well you would try it too. We all know this type of thing can really strain relationships.

ETA - crossed with @Solstice post. I agree it is total cr@p & I would rather they stopped leaching off the sick altogether. I'd be outraged if any public funds were spent.
 
What about Mickel Therapy?; their claims are similar

"Medical conditions:
Anxiety, Chronic Fatigue Syndrome, Depression, Fibromyalgia, Irritable Bowel Syndrome, M.E (Myalgic Encephalomyelitis), Post Viral Fatigue, Stress and Chronic Illnesses."

"A convenient way to put this it is that Mickel Therapy seeks to draw a distinction between the thinking brain and the core emotional mid-brain or body which generates emotions independently of thought. The therapy teaches clients to translate their symptoms back into emotions and take corrective action so the symptoms no longer need to occur."

"
What can I expect?
Sessions are delivered face-to-face by qualified Mickel Therapists or if a therapist isn’t available in your area, treatment is available by phone and Skype.

Sessions typically last an hour. Most clients need just a few sessions though every client will differ."

(note bold is in original text)
http://www.mickeltherapy.com/medical-conditions/
 
Ah yes, Mickel therapy, there's another one (or a version of it called Reverse Therapy) I got suckered by. £240 down the drain for 3 sessions of a very poor quality version of CBT by a therapist with no insight at all before I saw sense and called a halt.

Bah humbug.

On the question of properly conducted trials for this crap:

- Accurate diagnosis before starting including 2 day CPET, repeated at the end as an outcome measure.
- Participants wear heart rate and step monitors throughout.
- Trial duration at least one year.
- These two objective measures to be the primary outcome measures.
- Outcome calculated on intention to treat, not just those who stay the course.
- Comparison group gets equal input in terms of therapy hours with good pacing advice and ongoing support. (genuine pacing, not APT)
- Control group gets nothing.

But I still wouldn't do the trial because I think it's unethical to ask patients to spend a year or more on something that doesn't work and is likely to make them worse.
 
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