UK Dept of Work & Pensions site hype efficacy of GET & CBT based on their PACE Trial

[*GG*]

Medical care in this case wasn't very "medical" - not something somebody in the US would travel long distances for (say). Also in case it's not clear, the comparison was CBT+SMC or GET+SMC vs APT+SMC vs SMC-alone.

What is APT?

GG

 

[Dolphin]

What is APT?

GG

Adaptive Pacing Therapy (acronym is given above). A form of pacing based on time-keeping (not everyone uses that form). Was tested in the PACE Trial.

 

[SilverbladeTE]

Sean
yeah, Specialist ME care...

one expects this:

But one gets this:

sorry, couldn't resist

 

[justy]

I particularly enjoy the choice of language used in this report.
Patients "report" and "describe" symptoms implying that they are not real but just percieved.

Then of course theres the old favourite

"Interpretation of symptoms...which they may percieve as damaging"

And dont forget if your a man you will probably get better as your not as neurotic or hysterical as us women, and they helpfully point out that the most severely ill or those with the most symptoms are the least likely to fully recover -No shit sherlock!

Lets hope that now the Government in Scotland have seperated out M.E v chronic fatigue then they will also do so in terms of benefits etc and that this will help to shame the uk govt inot changing there policies. Just imagine changing the letters C.F.S/M.E when you are reading this and instead place the letters M.S in. How does that sound then? Reasonable?

If only i had the energy (of course i have M.E so i dont) what i want to do is make an undercover documentary follwing myself actually asking for their help per the gudelines and filming it all to see what would really happen. Of course this would never happen anyway because even though they are obsessed with fixing our false illness beliefs with CBT and helping us to recondition through GET.( Oh and of course helping us not to do too much but no to do too little -until we are like normal people -except thats not possible because normal people dont have to watch they dont do too much or too little) The real situation is that we are so little cared for that even their "proven" treat,emts are not actually available or offered to us. Ive been sick for 17 years and ive never been offered any treatment by any GP beyond antidepressants, certainly not the 6-12 month hospital treatment they reccomend for my rehabilitation.
Sorry -rant over!

 

[Holmsey]

Playing them at their own game

I'd always considered that my own GP had been as helpful as he could, given there's as yet no magic wand for this illness, but like Justy I'd found that despite the guidelines, I wasn't being offered anything by the way of care from the NHS.

After being stamped 'ME/CFS' (by a consultant) I found that my GP wouldn't say 'ME' or even 'CFS', more than that in over four years he's never once put that down as the reason for signing me off work, it's always a symptom description which avoids using those terms, something that can make things difficult at work when you're trying to convince them you have a recurring crippling condition. But of course, to use either term would be to reinforce my illness belief.

I got to the point where I was asking myself why it was that I was trying to justify my illness to the people who had saddled me with the title and I'm pretty sure this is the psychology behind it. They have a duty of care for us, we present ourselves requiring care, they collectively are unable to provide that care, BECAUSE THEY DON'T KNOW, THEY DON'T HAVE THE ANSWER. But hold on, that's their job, they get paid staggering amounts of money from our taxes and, well, get to go home jolly dammed pleased with themselves for the service of life they bring.

So feel for them for a moment, you've just walked into their office and shoved a personal shortcoming right up their nose, so what are they going to do to recover from such a blow. Easy, they reverse responsibility, yes, he thinks, I don't know the answer because there is no answer, there is no illness else I must be fallible, ergo it's all in the patients head (sorry I'm thinking Homer Simpson here).

Seriously though, look at the attack on Mella and Fluge right after publication, the denigration of good science on XMRV regardless of the outcome and you realise that it's not us who are invested in this illness but them, from GP right up the chain, for them to be infallible we have to be delusional, that's the only way there can be no error on their part, nothing they don't know.

Once you realise that this is where your GP is working from and how little he actually knows about this illness you can start to have fun chipping away at his cloak of infallibility. How, well if you've ever had private lab work done, share the results and ask for his opinion, that's sure to crack his all knowing aura. Another good one is to ask him if he's aware of whatever the latest studies are, if he's like mine he won't have a clue so tell him, practice what youre going to say if needs be, the more you can show him how in touch you are and how out of touch he is the more you'll chip away at what is ultimately a myth, infallibility.

"Pushings easy, when you don't have any backward stepping bones"

 

[*GG*]

Adaptive Pacing Therapy (acronym is given above). A form of pacing based on time-keeping (not everyone uses that form). Was tested in the PACE Trial.

Thanks, guess I missed it!

GG

 

[Vitalic]

I'd always considered that my own GP had been as helpful as he could, given there's as yet no magic wand for this illness, but like Justy I'd found that despite the guidelines, I wasn't being offered anything by the way of care from the NHS.

After being stamped 'ME/CFS' (by a consultant) I found that my GP wouldn't say 'ME' or even 'CFS', more than that in over four years he's never once put that down as the reason for signing me off work, it's always a symptom description which avoids using those terms, something that can make things difficult at work when you're trying to convince them you have a recurring crippling condition. But of course, to use either term would be to reinforce my illness belief.

I got to the point where I was asking myself why it was that I was trying to justify my illness to the people who had saddled me with the title and I'm pretty sure this is the psychology behind it. They have a duty of care for us, we present ourselves requiring care, they collectively are unable to provide that care, BECAUSE THEY DON'T KNOW, THEY DON'T HAVE THE ANSWER. But hold on, that's their job, they get paid staggering amounts of money from our taxes and, well, get to go home jolly dammed pleased with themselves for the service of life they bring.

So feel for them for a moment, you've just walked into their office and shoved a personal shortcoming right up their nose, so what are they going to do to recover from such a blow. Easy, they reverse responsibility, yes, he thinks, I don't know the answer because there is no answer, there is no illness else I must be fallible, ergo it's all in the patients head (sorry I'm thinking Homer Simpson here).

Seriously though, look at the attack on Mella and Fluge right after publication, the denigration of good science on XMRV regardless of the outcome and you realise that it's not us who are invested in this illness but them, from GP right up the chain, for them to be infallible we have to be delusional, that's the only way there can be no error on their part, nothing they don't know.

Once you realise that this is where your GP is working from and how little he actually knows about this illness you can start to have fun chipping away at his cloak of infallibility. How, well if you've ever had private lab work done, share the results and ask for his opinion, that's sure to crack his all knowing aura. Another good one is to ask him if he's aware of whatever the latest studies are, if he's like mine he won't have a clue so tell him, practice what youre going to say if needs be, the more you can show him how in touch you are and how out of touch he is the more you'll chip away at what is ultimately a myth, infallibility.

"Pushings easy, when you don't have any backward stepping bones"

To be fair GP's are somewhat at the mercy of the guidelines passed down to them, if they stray from those guidelines then they enter into GMC action territory as we have seen numerous times.

The GP I was with when I first got ill and before I knew what I was ill with, had no idea what was wrong with me and put it down to hayfever or allergies, I attribute that mostly to incompetence rather than deception though. I switched GP a few months later and this GP was the one that actually diagnosed me with ME/CFS, he took it seriously, ran all the tests he could and then referred me onto the "best" available clinics on the NHS, which I believe is the most he could really do. The real problem is when you get to these CFS clinics, they run some tests and if nothing obvious shows up you are funneled into a CBT/GET program with no prospect of any further investigation or treatment. The NICE guidelines actually state that the patient is free to reject CBT/GET and they should still be given medical care by the clinic, but I find that hard to believe, I sent a letter to the clinic I was referred to asking what other tests and treatments would potentially be available and have not even had a reply yet.

 

[biophile]

SilverbladeTE wrote: Sean yeah, Specialist ME care... one expects [House], but one gets [Borat in a mankini].

LOL, good one!