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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Mrs Sowester said:
I know this BS study feels like a blow, but look at the quotes from the SMC, they are not exactly glowing with praise, are they?
They read to me like they were distancing themselves from this Creepy Crawley-ness. That is a win and not a small win either when you think about it.
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Recently every time they have crawled out from under their rock to repeat their delusional claims they have just shot themselves in the foot again and given us another platform to patiently show them up for the outrageous quacks and frauds that they are.

And this time they have excelled themselves. The Psychosocial club, the SMC, the UK media, Parker the circle-drawer, have just created another permanent record of the delusional and vindictave hate they feel for ME sufferers just for daring to have an illness that they don't understand.

So although today is annoying, in the coming days and weeks the snowball of incredulous scientists, academics and reporters will continue to grow, as it does every time, as team UK provides more free entertainment and makes itself look more and more ridiculous.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Binkie4 said:
https://www.actionforme.org.uk/news/smile-trial-results-published-action-for-me-comment




EDIT: subtle change of tone??
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That looks to me (on the face of it) as being pretty significant. Ok so AfME always speak with forked tongue..we know this and so what they say and what they mean are very possibly not one and the same thing (in my opinion!) , but you do get the sense AfME might be rustling through their filing cabinets looking for that old P45 don't you? If I was Esther (thank goodness I'm not!) I'd be feeling decidedly vulnerable right now.
 
Y

Yogi

Senior Member
Messages
1,132
A

anni66

mum to ME daughter
Messages
563
Location
scotland
lilpink said:
That looks to me (on the face of it) as being pretty significant. Ok so AfME always speak with forked tongue..we know this and so what they say and what they mean are very possibly not one and the same thing (in my opinion!) , but you do get the sense AfME might be rustling through their filing cabinets looking for that old P45 don't you? If I was Esther (thank goodness I'm not!) I'd be feeling decidedly vulnerable right now.
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I went along to a seminar run by them i am new to ME and its politics), there was a what seemed genuine wish to collaborate with other charities to make funding pots go further and address severe ME issues. There was a concern re harm had been done by GET, and the problems children and parents face.
Perhaps, having rejigged the board, there is a change. To be relevent , there would have to be.
 
Mrs Sowester

Mrs Sowester

Senior Member
Messages
1,055
TiredSam said:
I've posted this before, but Parker's idea is only about 2000 years old:

https://en.wikipedia.org/wiki/Honi_ha-M'agel

I wonder if Phil Parker has a special relationship with God too?
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Ah, but circles (and boxes, but whatevs) have magical cat luring properties and everyone knows that cats walk between the magical and spiritual realms.
Cats can see magical orbs too, and they are like the ultimate magical circles cos they are spheres.
Circles are magic. Logic, innit?
 
S

Solstice

Senior Member
Messages
641
anni66 said:
I went along to a seminar run by them i am new to ME and its politics), there was a what seemed genuine wish to collaborate with other charities to make funding pots go further and address severe ME issues. There was a concern re harm had been done by GET, and the problems children and parents face.
Perhaps, having rejigged the board, there is a change. To be relevent , there would have to be.
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The problem is that they always look symphatetic but as stated above their actions don't match their words. When asked to put up or shut up they always shy away from doing the right thing. Lastly by not signing the letter demanding PACE be retracted. Crawley is still employed by them too I think.
 
adreno

adreno

PR activist
Messages
4,841
user9876 said:
I don't think Crawley is hippie dippy but then a lot who believe in mind over matter aren't.
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Actually, in my view, NLP (and therefore LP) is quite hippie dippy. It was created in the 70s. From wikipedia:

Sociologists and anthropologists—amongst others—have categorized NLP as a quasi-religion belonging to the New Age and/or Human Potential Movements. Medical anthropologist Jean M. Langford categorizes NLP as a form of folk magic; that is to say, a practice with symbolic efficacy—as opposed to physical efficacy—that is able to effect change through nonspecific effects (e.g., placebo). To Langford, NLP is akin to a syncretic folk religion "that attempts to wed the magic of folk practice to the science of professional medicine". Bandler and Grinder were (and continue to be) influenced by the shamanism described in the books of Carlos Castaneda. Several ideas and techniques have been borrowed from Castaneda and incorporated into NLP including so-called double induction and the notion of "stopping the world" which is central to NLP modeling. Tye (1994) characterizes NLP as a type of "psycho shamanism". Fanthorpe and Fanthorpe (2008) see a similarity between the mimetic procedure and intent of NLP modeling and aspects of ritual in some syncretic religions. Hunt (2003) draws a comparison between the concern with lineage from an NLP guru—which is evident amongst some NLP proponents—and the concern with guru lineage in some Eastern religions.
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W

Wonko

Senior Member
Messages
1,467
Location
The other side.
TiredSam said:
I've posted this before, but Parker's idea is only about 2000 years old:

https://en.wikipedia.org/wiki/Honi_ha-M'agel

I wonder if Phil Parker has a special relationship with God too?
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There are perfectly rational explanations for those events, described in the wiki, the most obvious being he got a bit lost and was in a different village, but they choose to believe the irrational. People are often a bit weird.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
anni66 said:
I went along to a seminar run by them i am new to ME and its politics), there was a what seemed genuine wish to collaborate with other charities to make funding pots go further and address severe ME issues. There was a concern re harm had been done by GET, and the problems children and parents face.
Perhaps, having rejigged the board, there is a change. To be relevent , there would have to be.
Click to expand...

Personally I wish to have nothing whatsoever to do with this charity which has happily connived with the BPS school even part funding some of their ventures. As a pwme I have no faith in anything they say and if AfME ceased to exist it would be helpful for ME advocacy imo. I think it's interesting that they seem to be distancing themselves from Crawley's latest debacle... it shows they are being more strategic in how they present themselves and that they are starting to see Crawley as a liability (taken them quite a while) but there is nothing they can now do to redeem themselves imo. They have been part of the problem for advocacy not part of the solution.
 
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