CFS_for_19_years
Hoarder of biscuits
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Adolescent Behavioral Utilitarian Study ExcuseI was hoping for Cognitive and Rehabilitative Adaptation Processes.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Adolescent Behavioral Utilitarian Study ExcuseI was hoping for Cognitive and Rehabilitative Adaptation Processes.
Letters to Editors of Newspapers ? -- big and small ? Not sure how it works in UK. Here our tiny local paper publishes whatever is sent in. ( edited for language and such of course w. ed. duly noted)I think it best to send them official notice (that they can't say they didn't get)of the damaging effects GET. If they still do it, bad medicine hurting children would not play well in the media. Especially if they were told.
Unfortunately for us Esther Rantzen believes that the Lightning Process cured her daughter of ME, so we'd probably be stuffed approaching them. Would have been a good idea in a perfect world though!NSPCC ?
I think she's Childline, the NSPCC are a different organisation?Unfortunately for us Esther Rantzen believes that the Lightning Process cured her daughter of ME, so we'd probably be stuffed approaching them. Would have been a good idea in a perfect world though!
http://www.meassociation.org.uk/201...aughters-illness-daily-mail-12-february-2012/
I think she's Childline, the NSPCC are a different organisation?
If you read the article, there's quite an interesting take on LP:Unfortunately for us Esther Rantzen believes that the Lightning Process cured her daughter of ME, so we'd probably be stuffed approaching them. Would have been a good idea in a perfect world though!
http://www.meassociation.org.uk/201...aughters-illness-daily-mail-12-february-2012/
Hardly the miracle cure that it's supposed to be then. It sounds actually more like they got her pushing closer to her limits, and that the technique managed to dampen some symptoms down, rather than eradicate them. My line on the Lightning Process is that it seems to be doing something for some people, but until we know what it is, and certainly whilst it's being marketed in its current 'cast off your crutches' form, it is potentially very dangerous and also highly exploitative, with it's whole 'why aren't you better yet?' schtick. I do not expect Esther Crawley to get to the bottom of this.But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behavioural therapy or neuro-linguistic programming), Emily decided to try it.
It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.
It is a fun thought exercise though. I often imagine what would happen if one of the BPS crew leaders came down with the disease. Would it transform the field? Or would they simply be ostracized and cast out with the rest of us heathens.
My line on the LP is that it's a complete load of bollocks from start to finish. We know what it is, even though participants are sworn to secrecy, there are accounts of what happens on an LP course somewhere on the internet. Can't remember where I read it, but the course I read about involved standing on a paper circle chanting, then being told off and bullied if you dared tell the instructor or other participants that it didn't seem to be working for you.It sounds actually more like they got her pushing closer to her limits, and that the technique managed to dampen some symptoms down, rather than eradicate them. My line on the Lightning Process is that it seems to be doing something for some people, but until we know what it is, and certainly whilst it's being marketed in its current 'cast off your crutches' form, it is potentially very dangerous and also highly exploitative, with it's whole 'why aren't you better yet?' schtick. I do not expect Esther Crawley to get to the bottom of this.
I thought Esther Rantzen's daughter Emily was eventually diagnosed with Coeliac disease in 2011?Unfortunately for us Esther Rantzen believes that the Lightning Process cured her daughter of ME, so we'd probably be stuffed approaching them. Would have been a good idea in a perfect world though!
http://www.meassociation.org.uk/201...aughters-illness-daily-mail-12-february-2012/
AlI I saw was the daily mail article, which is when ER claimed LP had saved her daughter from ME. Not being based in the UK, I've no idea what Esther and her daughter have been up to since then. Has she changed her position on ME and CBT since her daughter's diagnosis?I thought Esther Rantzen's daughter Emily was eventually diagnosed with Coeliac disease in 2011?
AlI I saw was the daily mail article, which is when ER claimed LP had saved her daughter from ME. Not being based in the UK, I've no idea what Esther and her daughter have been up to since then. Has she changed her position on ME and CBT since her daughter's diagnosis?
Yes TiredSam I think she now believes her daughter never had ME but had Coeliac disease all along.
The book also claims that it can 'cure' the symptoms of MS....... Not the actual disease, but because symptoms don't necessarily correlate with what can be seen on MRI scans, obviously some of the symptoms of fatigue etc are maladaptive rather than pathological. It's horrifying stuff.That means LP "cures" both ME *and* Coeliac !! Hot Damn !! Sign me up
Maybe with the ruckus around PACE the possibility of harms to children will start to get through. It's a tough message to distribute since the psychobabblers pretty much own the press via their SMC public relations firm.It seems to me that a trial cannot take place without participants.
Parents may feel forced into a particular treatment, but they can't be forced into taking part in a trial. If parents just say no the trial will never happen.
Freedom of the Press belongs to those who own one.
What especially bothers me about the LP isn't that they just take money off vulnerable people and offer nothing or only harmful treatment in return, plenty of charletans are doing that, but not satisfied with getting away with a tasteless con, they have gone one step further and wormed their way into public policy so people can be threatened with benefits being withdrawn or families of children too ill to go to school can be threatened to attend.