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

Perhaps misunderstood—I thought you meant where she'd made a post but then edited it later. I never see the MEA FB page and had no idea she'd been involved, so I haven't seen the pattern.

 

No your advice works but it’s probably worth me noting what it was. MEA fb makes a post about the article. Then as they often seem to do these days writes some ‘sticky’ comments as a continuation (to add further info whilst keeping post short I guess). One of these is EDIT the MEA noting there is now the ‘letter of response to the article’ in the guardian by her and garner with a link. The others note the other ‘letters’ by other people.

comments fill up reasonably quickly by which point whether you see those first comments by MEA depends on how you access it but many will just get a few latest posts they see or if they click to expand comments it doesn’t unroll all etc.

However there were about 30 something comments when I looked and it was clear many who had commented (on the main post not necessarily knowing or reading about Symington letter or as she isn’t well-known knowing who she is - it’s not like she is ‘dr or professor’ or anything else to distinguish her as ‘maybe a BPS’ and they don’t often have them writing on their fb posts) had then had a direct reply from her to their comment. Often not short ones. If you didn’t know who she was and just clicked through wondering who she was and what to say, then unbundled comments but didn’t read them totally to unbundle those very first ones you’d just see this one person who kept replying to many people. And still not know who she was other than that. Quite a lot of those were more lengthy than the few lines you tend to get on a fb reply (unless someone is eg agreeing with you and providing info or adding to discussion on a complex topic).

So if it happened to you and you clicked through having had this ‘x replied’ flag up a quick scan would look like this person is doing it to everyone. So you might think a polite one-liner or whatever is fine. People just wouldn’t imagine without a warning it would be changed later unless warned. They’d think in the context of all those replies looking obvious their comment looks fine and never get a message saying what they’d replied to has changed. And that the other lots if replies from the same person might too, so the context then looks v different.

the advice is better than nothing if there as a warning in the main header post from the MEA for people to do this, but a screenshot will only show so much of the thread of replies. lots on fb won’t be wary to this and won’t know who she is or think of having to do this. Some might be on X but it’s such a different’load’ I think you get people on MEA fb who mighnt use much else and they’ll be less familiar with all these tactics or being replied to in that way. They also might be those who are iller, less familiar with social media for various reasons or in worse situations (MEA fb is less stressful than X threads with these people in them). Those ‘rare posters’ might easily have thought it was just another random sales thing who needed to be reported or retorted because the context of it when all her replies were there made it look like that.


And could still potentially be worked with by savvy people who probably rightly assume many bystanders won't open the screenshot etc.

I just think without advice and a warning there is still a chance gif all sorts like next thing being ‘paranoid posting screenshots’ and stuff without there being a thought-through warning in the main post that doesn’t disappear into the comments people won’t unroll.

So I think MEA need to keep an eye on it and have good advice and safeguards.

it just feels like MEA fb is a social media most likely to have those who wouldn’t access such info or comment elsewhere due to health or demographic so there does need to be extra protection if the vulnerability is there and why would such people know or have to do this. They should be able to access these safely without hoop-jumping or at least be warned. Many may still be unaware etc

sorry if I’m going on but nothing makes me feel more disgusted than when people play games with the vulnerabilities of the most sick who might not be able to keep up with all that but do still deserve to have ‘something’ where they have a voice on topics that are pertinent to them (I think these authors forget these people it’s just as pertinent to but actually more than them as ‘their career ambition etc’ so they don’t own that who gets to comment, and shouldn’t get to do behaviour that affects those who have as much right to with off-putting games) and can if it’s needed be protected from needing to be so savvy and wary etc (which is just another level of barrier which would preclude them being able to keep doing that)

 

How can you amend tweets? You can delete them and repost them, but all the comments/responses disappear. or at least I thought.

 

You can edit these days, thanks to Elon.

You could always delete the tweet, which would leave the responses! They didn’t disappear with it.

 

I had googled as a result of the Co-signed letter by Fiona and Paul Garner, in response to George Monbiot’s excellent opinion column 12 March 24.

I saw she’d been involved in fundraising for the MEA not too long ago (if this is the same person)
https://meassociation.org.uk/2021/06/fionas-quilt-raffle-2021/

I’m confused about where she’s thought to be replying to comments, it seems maybe twitter but also Facebook? In any case, that’s up to her, she’s unlikely to change her mind and so are the people she’s commenting with.

 

Other MEA fundraising
https://www.justgiving.com/fundraising/1millionstepsforme

 

I'm just curious if PG warned Fiona whatshername what she was letting herself in for when signing a letter with him.

Did he say 'they will come for you..'?

 

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.

The PRT group received intensive care and support over 8 sessions while the two control groups either received usual care or a placebo injection. So the amount of therapeutic attention was not controlled for across the three treatment arms like in PACE.

The PRT website practitioner training section will remind you very much of PACE manuals, just substitute pain with fatigue:

So yes, I'm afraid PRT is just old CBT wine in new bottles.

 

https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr.25104

 

Conflicts of interest are 'interesting',

"Conflict of Interest Disclosures: Dr Ashar reports grants from the National Institutes of Health during the conduct of the study and personal fees from UnitedHealth Group, Lin Health, Inc, Pain Reprocessing Therapy Center, Inc, and Mental Health Partners of Boulder County outside the submitted work. Mr Gordon is a consultant with UnitedHealth Group, director of the Pain Psychology Center and the Pain Reprocessing Therapy Center, and is the author of the book The Way Out. Dr Schubiner is the co-owner of Freedom From Chronic Pain, Inc, earns book royalties for Unlearn Your Pain, Unlearn Your Anxiety and Depression and Hidden From View; serves as a consultant with UnitedHealth Group, Karuna Labs, and Curable Health; and receives personal fees from OVID Dx outside the submitted work. Mrs Uipi serves as a consultant for UnitedHealth Group. Dr Dimidjian reports being a co-founder of Mindful Noggin, Inc, and received royalties from Guilford Press and Wolters Kluwer as well as funding from The National Institutes of Health. Dr Lumley reports personal fees from CognifiSense, Inc, outside the submitted work. Dr Wager reports grants from the National Institutes of Health and the Foundation for the Study of the Therapeutic Encounter, and funding to support trainees from the Radiological Society of North America and the German Research Foundation; he is on the Scientific Advisory Board of Curable Health. No other disclosures were reported."

- UnitedHealth Group is an insurer.
- Lin Health, "We help physicians provide pain psychologytreatment for chronic pain that’s compassionate,evidence-based, and low-risk.".

As is the funding details,

"Funding and Support: This study was funded by National Institutes of Health grants R01 DA035484 (Dr Wager), R01 MH076136 (Dr Wager), National Center for Advancing Translational Sciences grant TL1-TR-002386 (Dr Ashar), Radiological Society of North America (Dr Flood), German Research Foundation grant GE 2774/1-1 (Dr Geuter), the Psychophysiologic Disorders Association, the Foundation for the Study of the Therapeutic Encounter, and community donations."

- From their website, "The Psychophysiologic Disorders Association is a 501(c)(3) nonprofit with a mission to end the chronic pain epidemic and opioid crisis by advancing the awareness, diagnosis and treatment of neuroplastic symptoms (PPD) that affect millions worldwide."

And naturally they list CFS, Long Covid, FM, IBS, EDS and FND all as "Common PPD Symptoms".

- And from their website, "The Foundation for the Science of the Therapeutic Encounter (F-STE) was created to foster and expand scientific efforts to investigate what are often described as "placebo effects": the powerful effects of the patient-clinician relationship with its rituals, symbols and interactions. F-STE's goal is to harness these humanistic factors to improve health care. "

 

’priming’ you mean? So that when someone jollily replies to someone’s comment with their story of recovery in a certain tone and that person says no thanks they are primed to suggest ‘that’s coz they r haterz who don’t want to get better’ type thing?


Edited as had mulched an old post hadn’t realised was there onto a new comment

 

About Edit post - https://help.twitter.com/en/using-x/edit-tweet

 

I think it's safe to assume that the individual is well aware of the "contested nature" of the psychological designation of ME/CFS; making yourself a 'poster person' on multiple grifter health sites could I suppose be a sign of excessive credence, but a Psyc grad doing an MSc surely can't be that unaware ? On the evidence I'd list under "deliberate and knowing manipulation of social media interaction for purpose of self and/or client promotion". But then I'm pathologically cynical.

 

Scrolling through twitter, Fiona appears to be campaigning against the 2021 NICE guidelines saying that they have harmed people. She has also stated that ME/CFS charities are harming people with their advice. Hopefully she'll register here so these issues can be discussed in a calm and rational manner. Twitter is hell for serious discussions.

 

I don't think she should be taken seriously. It looks like her push to promote mind-body interventions might just be a plan to make money.

https://twitter.com/user/status/1769996670169694493

 

I am impressed, dismayed and fascinated! Amazing research skills. A tentacle running from insurance companies to an app to an ex-MEA fundraiser.
It seems Fiona made friends with Paul a little while ago. Interesting to see where this goes next.

A side issue - it feels to me somewhat “paternalistic” or something, this assertion that NICE or ME charities are “stopping people getting better”. I’m an occasionally competent adult, capable of trying different things (including BPS style CBT, many years ago!) I can read a whole spectrum of for and against, have my own experiences, and draw my own conclusions. NICE guidelines aren’t stopping me considering (spelling edit) and evaluating all avenues.

 

I'm afraid this is now the basic methodology. They'd rather have fake positive results than make real substantial progress.

And having something to sell is also now the norm. Medicine has made alternative medicine more lucrative than it's ever been before, since the lines don't exist anymore. Any old quackery can be said to be "evidence-based".

 

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.