Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 7, 2013.
*I've given each sentence its own paragraph
Some notes and observations:
They got their patients by placing a note on the AYME website, and thanked AYME for their assistance.
They point out that it may not be a representative sample for a few reasons e.g. people who got well may not go to the site; alternatively people who have greater health problems ("greater ongoing fatigue") might have less energy to volunteer to participate in a research study. Also people who believe they have benefited from a therapy might be more likely to share their positive experiences. They also say that the large entry fee for the course may affect how people rate it. Furthermore people are selected, and select themselves (/exclude themselves) based on "readiness for recovery" criteria which might select those with the best prognosis recovery.
The three mothers who talked all had children who had positive experiences. Also I think they all (IIRC) did the course themselves.
Recovery is mentioned quite a bit including by the authors. It is frustrating to me that the authors don't ever question this in any way. Just because somebody says they are recovered doesn't mean they are actually functioning without symptoms just like a healthy person (and also won't relapse). And participants in a LP who have been effectively hypnotised for three days and told to tell people they are doing well are particularly unreliable people in terms of accepting subjective recovery claims.
Similarly "instant healing" is used without question twice.
Also, they don't make much of an effort to say why the treatment might cause problems (e.g. from overdoing it). (All of the authors are behavioural therapists).
Some more extracts:
One case history:
Annoying point in discussion - and it didn't seem to be justified by what they said about YP7
One thing I do have to give the BPSers some credit for - they're at least less direct in blaming the patients when the voodoo doesn't work.
And the objective evidence for any 'recovery' is...?
BPSers and LPers both seem to believe fatigue is the only important aspect of ME/CFS, and that fatigue is entirely subjective. As far as they're concerned, objective evidence would likely be irrelevant, especially since it rarely correlates with subjective improvements in fatigue.
Its hidden in the basement of the mansion where Elvis is still hiding out. I thought everyone knew that?
And of course, Emily Ranzen was cured of her "CFS" not just the once, but twice using this remarkable (wallet) lightening process.
Then it was discovered she had Chron's disease all along and had only been pretending to be cured, to please everybody.
Edited to correct my failure to check I'd got the facts right - it was Coeliac, not Chron's, DOH! thanks, Dolphin, for correcting me.
Agree with basic point, but on the specifics, it was Coeliac (Celiac in the US) disease: http://www.meassociation.org.uk/?p=4517 (ETA: also, as purple said, only LP the 2nd time)
After fronting several hundred pounds of cash for LP, there will be some objective changes to the patients' bank account.
It is right next to the PACE recovery data.
If I recall correctly, the first time was due to GET, the second time was LP and then it was thought she had Celiac disease - this is one of the articles about this (from the Daily Mail) - http://www.dailymail.co.uk/health/a...cret-Emilys-14-lost-years-Esther-Rantzen.html
ETA - this is in response to peggy-sue
Emily Wilcox's case might be a useful to mention if ever writing a formal letter on LP (it shows people who have done LP may not be as well as they are saying they are).
It did rather stick in my brain that it was LP twice. But then, my brain fails me a lot!
When I was first ill, I did discover these expensive "miracle cures" on the net - lightening process, mickey mouse therapy, and "reverse" therapy.
I read the sites, the claims and disclaimers, decided they were all hogswash without the slightest basis in science and dismissed them immediately.
When some brave whistleblowers did actually describe the "secrets", processes and methods, I knew I'd been perfectly correct to dismiss them as complete charlatancy.
Charlatancy will work on some folk with mental illnesses. It depends entirely on the placebo effect (recently found to have a strong basis in genetics - very interesting indeed!).
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