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FINE Trial: Pragmatic Rehabilitation Presentation (initial presentation to patients)

D

Dolphin

Senior Member
Messages
17,567
Pragmatic Rehabilitation was assessed in the UK£1.3m FINE Trial. It is similar to CBT and GET and a previous trial of it (Powell et al., 2001) has been used in reviews of GET and CBT for CFS (as evidence of their efficacy).

I have just come across the following:

"Pragmatic Rehabilitation Presentation" (initial presentation to patients)



http://www.fine-trial.net/downloads/CFS patient presentation.pdf


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Note: I have also just set up a thread: "FINE Trial: Pragmatic Rehabilitation manual" http://forums.phoenixrising.me/index.php?threads/fine-trial-pragmatic-rehabilitation-manual.21415/ .

I thought it would be easier to have separate threads given there is a good chance people will start discussing the contents as it might get confusing with the page numbers, etc.
 
Simon

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Just flicked through this and was surprised by so many strong assertions that, I suspect, are not backed up by robust evidence (no references cited in this presentation). In particular, the claim that 'There is No Disease' is a bit strong. Especially for a trial that found no change in the primary outcomes of fatigue and physical function compared with 'GP treatment as usual'

A couple of quotes below:

page 11
So let’s put this altogether.

Your bottom line problem is :
  • The body clock has lost control of body rhythms.
  • A sleep disorder develops.
  • With Daytime fatigue.
  • And with these other rhythms affected.
  • It’s hard to be as physically active.
  • Which over time leads to deconditioning of the heart, lungs and muscles.
  • Daytime fatigue and deconditioning, frustration and striving to get back into life arousers the nervous system and produces adrenaline which hits the patient’s weak spots (heart, muscles).
These are the problems.
Click to expand...
Final slide:
ROUSING REASSURANCE

  • From the moment you walk out of this room your recovery is beginning.
  • Every exercise is strengthening your body.
  • Exercises need to be paced.
  • To do too much will drain your powerhouses.
  • Stop before you hit the brickwall.
  • There is no disease
  • Go for 100% recovery.
Click to expand...
 
S

Sam Carter

Guest
Messages
435
ROUSING REASSURANCE

  • From the moment you walk out of this room your recovery is beginning.
  • Every exercise is strengthening your body.
  • Exercises need to be paced.
  • To do too much will drain your powerhouses.
  • Stop before you hit the brickwall.
  • There is no disease
  • Go for 100% recovery.
Click to expand...

Gawd, it's like joining a cult!

The presentation appears to be dated 22/07/04 (ie. well before the trial reported) and I do just wonder how much the gung-ho enthusiasm on show here later contributed to the attitude that "The bastards don't want to get better" when pragmatic rehabilitation abjectly failed to "reverse" CFS.
 
S

Sean

Senior Member
Messages
7,378
Gawd, it's like joining a cult!
Click to expand...

I swear, by the time I got to

...it is reversible.

I was thinking exactly that!

And then these claims came up
  • There is no disease
  • Go for 100% recovery.
100% recovery, huh? What was the actual results of FINE? No statistically significant effect overall? That extraordinary gap between their assertions and the actual reality of the outcome didn't ring any warning bells for them? Really?
Cult is the politest possible description of their infantilising, insulting, and highly irresponsible approach. Medical science should hang its head in shame for allowing them to get away with this utter shyte.
 
D

Dolphin

Senior Member
Messages
17,567
Orla did a detailed thread http://forums.phoenixrising.me/inde...f-cfs-clinic-patient-handout.3066/#post-71339 on the manual used for the Powell et al. (2001) trial and the Liverpool service. Here's an extract from the thread on recovery:
I have a funny story about this clinic and recovery. I have heard that as part of the programme people who had previously been on the programme, who were now said to be recovered (by those running the programme), were brought in to meet with patients who were currently the programme. But after talking to them, the patients currently doing the programme realised that these "recovered" patients, were not in fact recovered at all!!
Click to expand...
 
V

Valentijn

Senior Member
Messages
15,786
Another brilliant group that obviously didn't bother to talk to patients. My sleeping problems started about 6 months after all the other crap, and resolving sleeping problems has had 0 effect on other symptoms, aside from making me less grouchy!
 
peggy-sue

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Ah well, I'm ok according to this. I don't know about the rest of you, but I do not have "powerhouses".
I have mitichondria and they're not doing their job properly.

And where, might I ask, is the "body clock" situated? Have they evidence that it
a) exists
b) has "lost control"
 
S

seanpaul

Messages
43
To use s phrase from Dr Crawely when she talked about the WPI clinic -- "whats it all about....its all about money"

who gets the Money, the FINE Trial Group, Liverpool, Manchester and so on, who gets promoted, Chew-Graham, Peters, Salmon. Who gets the money, the schools they work for.

Who approves these studies in the MRC - those who already get the money and dont mind sharing it with their friends.
 
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