'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

Arisoned said:
I just want to add Fiona claims that Curable (PRT) is different to any brain retraining, lightning process or CBT which she did in the past they didn’t help her, so suggesting she reads stories of people who haven’t recovered using LP or were harmed using LP CBT etc is pointless because she’s in that category.

She claims PRT is different and new (other new exciting techniques in the pipeline) and is angry at the “ME Community” for holding her back from trying brain training techniques that could have helped her in the last 14 years she was sick, although they didn’t exist because PRT is new (?!) and she had already tried LP and CBT and they didn’t work - make of that what you will. Thoroughly confusing.
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I thought the ME Community was her community for 14 years. She does realise the ME community isn’t a homogeneous blob?It’s just people with something in common.
 
Sid said:
The Curable app seems to be based on pain reprocessing therapy (PRT) which is based on this unblinded trial with subjective outcome measures published in JAMA Psychiatry:

Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain

In it, the authors openly state that it's based on CBT principles for treating panic disorder.
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Supplement 2 in the paper above is actually really interesting. It gives a fairly full description of what PRT is (in eAppendix 2).

But first, this section in eAppendix 1 caught my eye:
First, there was a “ruling out” component of the assessment to exclude a clearly identified structural problem such as a tumor, fracture, infection, or inflammatory condition. In addition, there was an assessment for any neurological deficit that can occur with severe spinal stenosis or a herniated disc. MRIs, when available, were reviewed. All participants with available MRIs had some radiological findings, including degenerative discs disease, bulging discs, spinal stenosis, spondylolisthesis, and facet arthropathy (see main text and eTable 7). However, because these abnormalities are seen in the majority of asymptomatic individuals, these were not assumed to be causing back pain.
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Key quote from eAppendix 2:
A goal of treatment is to help patients embrace the idea that their pain is due to central processes, as opposed to a structural or physical problem in their bodies.
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Which is fine if it is "just" a central process and not a physical problem, but could be a big problem if it is a physical problem.

And surely central processes are involved whether it is a physical problem or not, because the central process itself is a physical thing? If they are saying that there is a problem with the central process itself alone, then there needs to be a better way of determining that.

Also, I have no idea how any of this could possibly be applied to PEM, as it is very in-the-moment situation stuff - the central technique for PRT is "somatic tracking", which is about using mindfulness to appraise the safety of movements and sensations. I can see how this might be useful in physio rehab, for example.

However, I would have thought that it is the absence of any signal to tell you you've overdone it is the issue with PEM, so it's almost the reverse? Unless they are saying the PEM is a misattribution problem? idk.

Anyway. I asked Fiona a few questions.
Can you expand on what that "wrong information" was?
You say that "everything" you knew about ME was wrong. So what was that?
What did Curable tell you that was such a "shock realisation"?
Surely this is important for everyone to hear!
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I'm not hopeful that I'll get any answers.
 
This is probably a bit off topic, but I do know of 3 people who "recovered" from ME at the 14 year point. One of them put it down to trying homeopathy, so I tried her homeopath and the treatment made me worse. The second one put it down to drinking soy milk smoothies. I didn't bother trying that. And the third person, did absolutely nothing at all. I liked that treatment, so that is my current treatment protocol.

They all relapsed about 5 years later, for no apparent reason.

I wonder if this woman, thinks her psychobabble garbage cured her, because that's what she was doing at the time she went into remisssion. Maybe nothing would have worked just as well, but you can't make money out of that, can you.
 
@Lucibee wrote:

"Anyway. I asked Fiona a few questions.

'Can you expand on what that "wrong information" was?
You say that "everything" you knew about ME was wrong. So what was that?
What did Curable tell you that was such a "shock realisation"?
Surely this is important for everyone to hear!'

I'm not hopeful that I'll get any answers."



Excellent and important questions. If you do get any answers can you post them here please. Fiona has blocked so many of us on twitter we would not see any answers from her there.
 
Spartacus said:
I do know of 3 people who "recovered" from ME at the 14 year point.
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It happens. I've had two good remissions, which occurred for no obvious reason—nothing in my life had changed. It was before I was diagnosed, so I didn't know they were just remissions and I could easily push myself back into relapse if I did too much. So of course I did exactly that.
 
Attributing others with 'fears' is a common enough manipulative tactic employed to invalidate the person or persons who are framed as 'fearful'

Fiona's opinions are of no more importance than any of ours. Fiona's experiences and views do not trump the experiences of the vastest majority of ME patients. Though it appears she thinks they do. She has found 2 new communities that validate and laud her - the professional BPS lobby and the commercial brain training industry. But that's no justification for maligning, trivialising and dismissing the experiences, views and knowledge of the vastest majority of ME sufferers.
 
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Lou B Lou said:
@Lucibee wrote:

"Anyway. I asked Fiona a few questions.

'Can you expand on what that "wrong information" was?
You say that "everything" you knew about ME was wrong. So what was that?
What did Curable tell you that was such a "shock realisation"?
Surely this is important for everyone to hear!'

I'm not hopeful that I'll get any answers."



Excellent and important questions. If you do get any answers can you post them here please. Fiona has blocked so many of us on twitter we would not see any answers from her there.
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Thanks. I will if I do. And in case anyone can't see the whole thread, here it is (click thumbnail):

fionaS_thread_18mar24.png
 
Interesting to see that this pain reprocessing therapy (PRT) seems to have been invented by an NIH project:

https://www.nih.gov/news-events/nih-research-matters/retraining-brain-treat-chronic-pain

It seems to have emerged from addiction, mental health and 'translational' departments but could easily have come from the alternative it seems. They use the same sort of fMRI I think.

There are 18 PRT practitioners in the UK, mostly GPs, osteopaths and chiropractors. A bit sad that if it is so brilliant. No specialist units using it except maybe one pain clinic.

I had not come across it but it seems to have spread around the world since 2021.
If it really did something useful for ME we ought to have heard of thousands of recoveries by now. So far there seems to be one in the UK.

Maybe the problem is that what is really needed is FaRT - fatigue reprocessing therapy. That could be a real gas. Slight drawback is that it doesn't seem to fit with an effort preference story much. Maybe the fMRI machines have been playing up somewhere.
 
Lucibee said:
Thanks. I will if I do. And in case anyone can't see the whole thread, here it is (click thumbnail):

View attachment 21498
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Fiona Symington (her twitter post as in Lucibee's attachment):

"Curable is based on Pain Reprocessing Therapy [PRT], which is something that most people with M.E

HAVE
NOT
TRIED

This is not CBT/GET. PRT is it's own entity and lots of the latest neuroscience backs it up"



But it's simply not true that "most people" with ME have not tried some or all of the components that Curable consists of.

According to the Curable site:

'Curable includes guided meditations, visualizations, CBT techniques, and expressive writing exercises'

https://www.curablehealth.com/help#help-top-faq/general/whats-included-in-the-full-curable-program


Really? How unoriginal. Not actually much different from all the commercial mind method/brain training programs that claim to 'cure' ME? NB 'recover with .... ' is just NLP speak for 'cure'.

It's infuriating to be spoken down to as 'the uneducated/unevolved' by brain training converts when plenty of pw ME learned and practiced that stuff decades ago (though not in any context of illness), decades before we got ME, so we tried all of that when we did become sick but didn't recover, and a great many pw ME have tried those methods since becoming sick. We are still sick!

It's pretty widespread amongst brain retraining people that anyone who disagrees with them must be ignorant. No, we are not ignorant, it's that we've been there, done that, often decades before the brain training professionals and acolytes did. And it doesn't work for the disease ME.


Edit add:
Also on the sites (Curable and the Pain Reprocessing Therapy Centre where Fiona Symington is listed as a Practitioner) and in testimonials for PRT there is striking repetition that Curable/PRT is backed by science. As understanding that not all research is equal is not well known in alternative worlds, those statements about being backed by science are swallowed apparently without question.

.
 
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PG:
Some top tips from
@Fionas_Story
on mind-body, neural pathway disorders, which include #mecfs, alot of #longcovid, and chronic pain disorders

Fiona: It's really strange seeing a community note go up about evidence on the post of an Emeritus Professor who knows his stuff about infectious diseases. People might do well to consider what that says about how useful community notes are on Twitter.
 
Mij said:
Fiona: It's really strange seeing a community note go up about evidence on the post of an Emeritus Professor who knows his stuff about infectious diseases. People might do well to consider what that says about how useful community notes are on Twitter.
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She should consider what it says about Garner that he collects so many community notes.
 
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