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

Post copied from the Paul Garner thread
and a number of following posts have been moved from that thread

Some posts refer to a letter sent in response to the George Monbiot article by Fiona Symington and Paul Garner - thread here: Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot



I see the letter was from both Fiona Symington, who developed ME after living with EDS and chronic pain and then was “cured” of ME and pain, and Paul Garner, who presumably was cured of Long Covid.

So is Garner no longer claiming Lightening Therapy cured his ME/CFS?

Fiona Symington
https://archive.ph/8iMwK

 

This article makes it seem like her primary complaint was pain since a childhood fall from a horse. The ME Dx came much later but the whole description is about pain. People seem to find all sorts of strategies that appear to work for them when it comes specifically to pain.

 

Fiona Symington on the "good egg" Paul Garner:

https://twitter.com/user/status/1769062767774904731



Tweet:
"Also, you know something, Paul Garner is a lovely man. I have only recently started getting to know him but he is a very kind person. It's always worth looking beyond what people are spreading about others. He is a good egg."



Patronising or what?

.

 

Interesting…does she have her own thread?


I wouldn’t say it’s patronising, there’s a real kind of “jolly hockey sticks” type of language on twitter. Especially in the face of “haterz”

 

"It's always worth looking beyond what people are spreading about others."

Sounds like she thinks we just listen to gossip about Garner. Patronising.

 

I've never interacted with her but she's blocked me.

 

And Vogt's problem seemed to be tinnitus if I remember rightly, which somehow morphed into the territory of ME.

There is something peculiarly circular about these stories. Symington tells us to forget the biomedical model. Yet she got better because of brand new brain research into pain pathways. Apparently this new research shows the interaction between mind and body and yet there is no such research. The solution is closer to meditation folklore and religious exorcism.

And the people who generate these stories full of labels of this or that seem particularly prone to become messianic proponents of BPS theory when they suddenly pick up their beds and walk and also the Wesselyan doctrine of evil ME patients misleading others.

I cannot help thinking that it is a manifestation of some common quirk of human thinking trait a bit like QAnon that turns arguments back to front.

There also seems to be this tendency to club together to shout rude things in chorus.

 

Written a few hrs ago:

"Never in my wildest dreams did I think I'd be told I didn't have M.E - this was my community for 14 years and I'd only experienced kindness from them. It is disgraceful to invalidate others experiences".

 

Symington describes herself as a "Psychology Assistant Research Worker" https://uk.linkedin.com/in/fiona-symington-42a8b4135 and appears in at least 3 grift videos: Healing from Chronic Fatigue/ ME and other symptoms w/ Fiona Symington & Living Proof - Stories of Hope - Recovery from ME Chronic Fatigue Syndrome & Defogging My Life: Fiona’s Journey With Chronic Fatigue/ ME - that last one has an About that says:

"Curable is an online program and app designed to help people with persistent pain reduce their symptoms and calm their nervous system.

Pain is a multifactorial experience, which is why Curable takes a biopsychosocial approach to helping people heal. Curable helps people with pain identify and address the “missing pieces” that are often excluded from treatment plans, including the role of the brain and conditioning of the nervous system."

 

The healing ME link where she talks about coming at this from a "Christian perspective . . ." Beliefs . . .

 

And it's 50% off this week, it says.

 

Yeah, imagine someone doing that. Imagine doing that officially, in a way that has real-life and massively harmful impact. That leads to massive suffering and death, to families being broken, to marriages and relationships ending, to careers being cut short, to poverty and misery and early death. Imagine all that. Imagine doing that.

It's pretty ridiculous how Long Covid has made it obvious how a lot of people recover, the more early on, and absolutely nothing has been identified as helping doing so besides proper resting, proving that it's a biological process happening, something being cleared, or repaired, or whatever. Not especially different from recovering from an acute illness, nothing that willpower will change.

And we still have people spreading the absolute weird message that "recovery is possible", which even given the old data of 5% also acknowledged that. They're just ignoring every damn fact and addressing questions that no one is asking. While invalidating everyone's experience. And whining and projecting when they get pushback.

 

Yet she blocks people whom she has never had contact with (Dave30th) just because his views don't coincide with her experience.

 

I think you may be on some kind of BPS list

 

And more ME patient-bashing and finger wagging at us from Fiona Symington today:

I can't reproducer the tweet Fiona first responds to as the person has blocked me, though I have never interacted with him, or even heard of him till today.




Fiona appears to be calling about a dozen people disagreeing with her on the MEA FB 'a pile on'. Now does this sound familiar or what?

https://twitter.com/user/status/1769298399201726589



Tweet:
"Thank you Tom. The worst thing about is it it contributes to people not wanting to work with people with M.E. Imagine research not actually happening because the pile ons are so feared. It's an own goal."




PWME don't disagree with Fiona because she's recovered, but because she's pushing mind methods/brain retraining as cure.


https://twitter.com/user/status/1769361793241997594


Tweet:
"Until I recovered and was on the receiving end of it, I had no idea how bad a problem it was. This isn't about blaming patients, this is pointing out a significant issue that the ME community would do well to address."




And, does this sound familiar, in fact who does this sound like?

https://twitter.com/user/status/1769362106439090627


Tweet:
"And I'm afraid multiple researchers have messaged me to say they wouldn't go near M.E. because they are simply too scared. That is very alarming However of course it isn't the sole reason for research not being done"



Anyone can read the Thread on the MEA Facebook (on the letters published in the Guardian in response to George Monbiot's article, including the letter co-written by Paul Garner and Fiona Symington), the thread which appears to be the source of Fiona's claims of 'pile on' etc.



If anything those tweets of Fiona's appear to me to be a silencing tactic, to inhibit PWME from publicly disagreeing with her.

.

The MEA moderates it's Facebook threads, to my knowledge no posts in that thread have been moderated or removed for untoward content.
https://www.facebook.com/meassociation


I don't advise anyone responds to Fiona on her twitter page, because any tweets disagreeing with her would only confirm her view that she is the victim of PWME. Silencing accomplished. Edit: Or she'll block you.


.

 

Re. https://www.curablehealth.com/podcast/fiona-recovery-story-chronic-fatigue-syndrome

Where the message is roughly this:

• She didn't believe in the Curable app because she was firmly convinced to have a physical illness (she was an ordinary patient just like you)
  
• But she kept seeing adds for it and was eventually persuaded to give it try because the testimonials were so convincing (let the ads persuade you and listen to the testimonials)
• She lived with her parents and knew she had to do the course alone when her parents were traveling (isolate yourself from other people while you do the course)
• Then the Curable miracle happened and other people began telling her that she looked completely different (other people will confirm your new reality, it won't be just a fantasy).

 

"You create your own reality" Hoopoe.

 

Oddly I have had no ME researchers emailing me, or mailing me, or sending me free pidgeon dinners, saying they were too scared to continue working in ME research.

None.

Zero.

What world is she living in where researchers message her out of the blue to say such things.

 

And I'm afraid multiple researchers have messaged me to say they wouldn't go near M.E. because they are simply too scared. That is very alarming

Yeah, well, presumably these are researchers who haven't researched ME, because they are afraid of the patients? What sort of researcher or medical academic decides not to research a disease for that reason? Nobody I would suggest. Do you not research Progressive Nuclear Palsy because in the early stages of dementia the patients are often aggressive?

Maybe Dr Vogt or Ms Landmark might have messaged, but then they are only too happy to research ME so it can't be them.