Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Daisymay said:
Maybe, but that's no excuse. The charities should be there to unequivocally promote the interests and care of patients. Personally I don't think any ME charity should in anyway sit on the fence or appease the BPS brigade, no matter what.
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As far as I am aware, historically, in the UK the only way the MEA could get into the room with any one with any clout in the establishment was if an opposing view was also aired i.e. The BPSers. This appeasement was the only way to get a foot in the door.

At this point in time, I would like to think we are at the stage where we can stop appeasing the BPSers.

I cannot see anything to be gained by collaborating with Esther Crawley in any way and,in my eyes, those who support her are tainted by association. In particular Stephen Holgate.

Enough is enough.
 
“I don’t want to come down like a ton of bricks on Esther Crawley because I think she’s doing her best,”

Really?

Although not recent, this highlights the totally inaccuracy of ECs 'claims':
http://voicesfromtheshadowsfilm.co.uk/news-2/

"One of my friends has a daughter who is ill with severe ME. In her medical notes it was recorded, less than three years ago, that the hospital was advised by the influential regional CFS paediatrician that; “N.G. [naso-gastric] tube feeding is not part of the spectrum of even severe CFS”. Alternative diagnoses of an eating disorder, or a mental health problem were therefore suggested, even though the child had not even been seen by that paediatrician, at that point.

The child had originally been admitted to hospital with a mistaken diagnosis of idiopathic chronic pain syndrome – for which the treatment was intensive physiotherapy. This had caused her to deteriorate disastrously, to the point of needing tube feeding and experiencing intermittent paralysis in her legs and arms. Further problems arose later when the same paediatrician, (having by then seen the child briefly), informed the hospital that paralysis is not part of the clinical presentation of CFS/ME, and gave a new diagnosis of Disassociation/conversion disorder."

Did EC have the best intentions for this child?
 
Yes, @Sly Saint I did see this in passing. Basically someone who suffered from chronic anxiety, which is something that resetting how you think of yourself really can help fix you - done it myself decades ago. Nothing new there. But then the article drops in how it supposedly magically cures things your self perceptions have no influence over ... twaddle. So it helps fix condition A, so must also be good at fixing conditions B, C, D .... :rolleyes::rolleyes::rolleyes:
 
Sly Saint said:
Did EC have the best intentions for this child?
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Possibly, but that doesn't matter. If an adult is abusing a child with the belief that abuse is in the best interests of the child (spare the rod spoil the child, letting the kid eat normally will make her fat, thinking the child is possessed by the devil, etc), it's still harmful. It just means the abuser is somewhat delusional rather than purely sadistic.
 
A fascinating interpretation of the article from medical doctor Henrik Vogt who has just founded a "patient organisation" together with an LP-coach of people who has made recoveries by "their own efforts".
He got a like from prof. Sharpe.



Edit to add: The other like comes from a professor in biology, Kristian Gundersen. He is a keen sceptic of alternative medicine, but for some reason makes an exception for LP. He is also a fierce defender of the PACE-study because as long as it was published in the Lancet, there simply can't be anything wrong with it.
 
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Kalliope said:
A fascinating interpretation of the article from medical doctor Henrik Vogt who has just founded a "patient organisation" together with an LP-coach of people who has made recoveries by "their own efforts".
He got a like from prof. Sharpe.

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'Spreading negativity'? Doesn't a medical doctor realise when they sound more and more like a crystal healer or homeopath? I mean, you're about one step away here from 'negative energy' or 'harmful vibrations'.
 
Londinium said:
'Spreading negativity'? Doesn't a medical doctor realise when they sound more and more like a crystal healer or homeopath? I mean, you're about one step away here from 'negative energy' or 'harmful vibrations'.
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Well, obviously, all he needs to do is to get one of those magic circles I've been hearing about, step into it and shout "stop" at us all. I'm sure it'll work wonders.. ;)
 
Andy said:
Well, obviously, all he needs to do is to get one of those magic circles I've been hearing about, step into it and shout "stop" at us all. I'm sure it'll work wonders.. ;)
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Won't Elves be a problem? Apparently they live through magic circles, and don't generally speak English from what I've read, so wouldn't understand the clear command to stop.
 
Andy said:
Well, obviously, all he needs to do is to get one of those magic circles I've been hearing about, step into it and shout "stop" at us all. I'm sure it'll work wonders.. ;)
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I've belatedly realised (doh!) that of course the LP is strictly under wraps in terms of divulging how this magic comes to be... the 'Magic Circle' Declaration applies : "I hereby SOLEMNLY PROMISE AND UNDERTAKE:-........b) not in any way knowingly, or intentionally, to disclose any secret of magic to anyone unless they be magician, and to confine the discussion of effects and secrets originated within the Society to Associates or Members of The Magic Circle, or Affiliated Societies;" (https://themagiccircle.co.uk/public-events/897-uck-variety-the-magic-circle) ;) :barefeet:
 
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