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

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I honestly don’t know why people still use twitter, it’s just awful. People screaming into the void about what they do or don’t think/like/promote. Then arguing with “the other side”.
 
MrMagoo said:
I honestly don’t know why people still use twitter, it’s just awful. People screaming into the void about what they do or don’t think/like/promote. Then arguing with “the other side”.
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Some enterprising pwme have managed to get media headlines (about ME) and inaccuracies corrected via tweeting the journalist and providing them with useful more accurate material. Can keep up with developments. I like the art accounts on twitter. There is more there than just arguing.
 
Lou B Lou said:
Some enterprising pwme have managed to get media headlines (about ME) and inaccuracies corrected via tweeting the journalist and providing them with useful more accurate material. Can keep up with developments. I like the art accounts on twitter. There is more there than just arguing.
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Absolutely. Twitter is what you make it. If you follow good people, you'll see good posts. If you follow horrible people you'll see horrible posts. I see a few horrible ones that get retweeted by good people in order to show how horrible those posts/posters are, which is fair enough. I mostly follow arts, history, photography, classic movies, gaming, humour, IT stuff, etc, and have a great time there (despite Musks' ongoing determination to destroy the place).
 
MrMagoo said:
I honestly don’t know why people still use twitter, it’s just awful. People screaming into the void about what they do or don’t think/like/promote. Then arguing with “the other side”.
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It’s how George Monbiot has written the articles he has about ME. Without twitter he would never have known about the suffering neglect and bad science.
 
MrMagoo said:
I honestly don’t know why people still use twitter, it’s just awful. People screaming into the void about what they do or don’t think/like/promote. Then arguing with “the other side”.
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It has a lot of awful aspects and Elon Musk is vile etc etc. All true. However, it remains an excellent way to promote articles and other information, to exchange ideas, etc. It's just important not to participate in the trash aspects of it. For now, it still helps get out the word in a way that is not possible otherwise.
 
Mij said:
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".
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oops lacking insight a bit there is it not?

But is this lightening process type thing related in which case I guess that is the brain 'retrain' of that isn't it ?

On a general note, I'm always curious about people who claim things like this when it might be themselves they think might be feeling it, but after having actually done it many times over to others who alert them to it, and normally dismissed that as nonsense often with things like 'what does that term even mean' blaa type thing, how on earth their memories etc work.
 
Lou B Lou said:
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?




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.




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?



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.


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I saw that post. She almost replied to every comment (even though the article was nothing to do with either her or her area) I've just edited this because her and Garner's reply was mentioned - I think it is worth noting many won't have known who this person was when it was originally up. It could have come across in a very similar manner to e.g. many groups have to watch out for with people talking about their herbal healing potion stories or other things. I suspect the only thing that differentiated her from said spammers was the attitude that started coming through and maybe some people knew her name from having wangled onto these pseudoscience committees like coffeee

Anyway, my point is that is rather naughty twisting because isn't a 'pile-on' supposed to be people 'piling onto said person' and not the other way around where one person runs around making comments at lots of people who seem to barely reply or have done (compared to her much longer written comment) the odd line in reply - as they basically couldn't win, if someone writes to you that length and you don't answer what would she have said either?

EDIT: ahhh interesting, I've just clicked through to the same thread and I'm pretty sure she has edited her posts post-hoc. eg so that ones which were say 200 words long someone replied or reacted to are then one sentence. I also think there were more and those not replied to have now gone. I remember someone mentioning around 4-5 years ago in the Times comments section that Michael Sharpe did that sort of thing on then Twitter? It's never possible to know whether people pick these things up 'naturally' from watching what others do etc?
 
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bobbler said:
I saw that post. She almost replied to every comment (even though the article was nothing to do with either her or her area) I've just edited this because her and Garner's reply was mentioned - I think it is worth noting many won't have known who this person was when it was originally up. It could have come across in a very similar manner to e.g. many groups have to watch out for with people talking about their herbal healing potion stories or other things. I suspect the only thing that differentiated her from said spammers was the attitude that started coming through and maybe some people knew her name from having wangled onto these pseudoscience committees like coffeee

Anyway, my point is that is rather naughty twisting because isn't a 'pile-on' supposed to be people 'piling onto said person' and not the other way around where one person runs around making comments at lots of people who seem to barely reply or have done (compared to her much longer written comment) the odd line in reply - as they basically couldn't win, if someone writes to you that length and you don't answer what would she have said either?

EDIT: ahhh interesting, I've just clicked through to the same thread and I'm pretty sure she has edited her posts post-hoc. eg so that ones which were say 200 words long someone replied or reacted to are then one sentence. I also think there were more and those not replied to have now gone. I remember someone mentioning around 4-5 years ago in the Times comments section that Michael Sharpe did that sort of thing on then Twitter? It's never possible to know whether people pick these things up 'naturally' from watching what others do etc?
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The only way to “preserve” is to enter the link at the time into a web archive site, or to screenshot.

Yes, twitter is full of people who amend their tweets after the fact. This leaves the people replying looking a bit silly and the original tweeter looking much better.
 
MrMagoo said:
The only way to “preserve” is to enter the link at the time into a web archive site, or to screenshot.

Yes, twitter is full of people who amend their tweets after the fact. This leaves the people replying looking a bit silly and the original tweeter looking much better.
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Yes I think she basically was replying to most comments with whatever spiels - like an antagonist might I now see in hindsight - then went back and amended to make whatever reply (which might have been pretty polite given what she wrote) look as if people were randomly puzzled with her etc.

So no I personally now conclude to myself that on having seen this happen in front of my eyes even she is not confused OR ‘invalidated’ and manufactured her comment to make reply look bad (and in the process did actually say whatever was in those responses so potentially just to eg hurt or whatever) having pre-meditated intention to make those claims by writing loads of replies to people many of whom didn’t know who she was (would one call that some sort of ‘fishing’ behaviour?).

Otherwise whoever ‘flagged it’ apparently claiming they saw a pile-on’ would/could have likely ‘stumbled upon’ it eg minutes earlier and seen something very different if that also had been just accidental ?

which answers a lot of questions to me about who she is and what she is about


@MrMagoo ’s note about her having been involved in the MEA 5yrs ago I find interesting now - and would be intrigued with more detail ?
 
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MrMagoo said:
The only way to “preserve” is to enter the link at the time into a web archive site, or to screenshot.

Yes, twitter is full of people who amend their tweets after the fact. This leaves the people replying looking a bit silly and the original tweeter looking much better.
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I think that next time MEA mention her in an article or comments the sensible thing is to warn readers of this likelihood before she does begin writing to them (the rest of the fb commenters, by her replying to their comments).
I only noticed that her and Paul’s reply was mentioned in their post at the top of the comments as they do when I went back in so I think there will have been many who read the article and the main post then had this person writing a long random reply to their comment not knowing who they were, which in that context given how it was said would have been very out of the ordinary (im not sure even the herbal sellers do it as a reply with peoples name much) so definitely warranting said warning

or alternatively can they lock comments?
 
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Kitty said:
On FB it's very easy to screenshot the post you're commenting on, and add it to your post as a picture. I've done that before just to make clear who I was replying to on a busy thread.
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But MEA need to protect their fb users if they do a thread where she is mentioned by them agsin I think - plus there I think were many many more comments from her not replied to which wouldn’t be caught in a screenshot but have contextualised someone eg saying a polite ‘thanks but no thanks’ as incredibly polite when every single comment had long replies out under them but when all those got disappeared and theirs edited the screenshot shows only part of the story. If there had been a warning at the top too at least people would both have this opportunity and later readers would know why someone had done that to spare the ‘paranoid’ accusation.

or they can just require that there is moderation of whatever on posts where she is going to be involved so she can’t delete at will and certainly not without the responder informed and the MEA being able to keep records etc
 
Open NHS documents

https://www.oxfordhealth.nhs.uk/news/election-to-council-of-governors-results-2022/

Public Oxfordshire

Mike Hobbs
Natalie Davis
Srikesavan Sabapathy
Fiona Symington

https://www.oxfordhealth.nhs.uk/about-us/

https://web.archive.org/web/2022080...bout-us/governance/members-council/governors/

Fiona Symington

"Chronic health issues mean I have 25 years of lived experience of being a patient in the NHS. This has left me passionate about our publicly funded healthcare system as well as the values its staff strive to demonstrate on a daily basis. A huge improvement in my health conditions three years ago have left me with a particularly keen interest in contributing to conversations about how services can be strengthened in order to best meet peoples’ needs.

I have a first class honours degree in psychology and am currently studying an MSc in health psychology. I have particularly enjoyed lectures on public health, the use of evidence to inform practice and health promotion. I am also working part-time as a stop smoking advisor, where I am working with a variety of people with different needs who are all working hard to better their health.

I love the opportunity to put what I’m learning to good use as a governor. I have a strong interest in leadership but also really relish working as part of a team and learning from others’ expertise."

Current Governors https://www.oxfordhealth.nhs.uk/about-us/governance/members-council/governors/ - Symington is not listed although a 3 year term is not expired.
 
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