Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

[Esther12]

I think they most likely think "getting people to behave normally" (my words) is the answer and looked around for reasons to claim it might work.

I think you could well be right. And they seem genuinely bemused as to why patients feel that they're not being treated with respect/

Yes. Of course, they have actometers and when they got AfME to agree to it in 2001, they were using actometers at the end as well as at the start. But somewhere along the way, they dropped the actometers at the end (so we don't know if people are actually doing more) although still get the patients to wear them for a week before the trial.

The PACE Trial is costing 5m while the FINE Trial cost a mere 1.3m.

I'm sure you know more about the details than I, but I'm still struggling to believe they could really spend that much money on PACE without collecting the sort of data that would be of interest to those sceptical about GET and CBT. If I were them, I would want to desig trials that had a good chance of proving my ideas wrong, or else over-coming the objections of those who disagree with me. Not many CFS researchers seem very good at this.

 

[Orla]

I'm sure you know more about the details than I, but I'm still struggling to believe they could really spend that much money on PACE without collecting the sort of data that would be of interest to those sceptical about GET and CBT

.

Esther, Tom has already explained this point to you a few times, and provided a link to the information on the Pace protocol. I don't have the energy to look for this link right now, but if you haven't read it why try to throw doubt on what Tom is saying, when he has read it? It is not a question of belief in anything, it is a question of reading what is in the protocol and seeing what they say. It is that simple. If you are really interested in outcome measures and so on, why not just go and read up on it?

If I were them, I would want to desig trials that had a good chance of proving my ideas wrong, or else over-coming the objections of those who disagree with me. Not many CFS researchers seem very good at this.

Not the psychiatric ones. The psychiatric school just want more propaganda to promote their cause. They get away with it because they have the establishment ear at the moment. GET has already been proved ineffective when objective outcome measures are used (see the quote in my signature below), which is why they avoid them like the plague.

Orla

 

[Esther12]

.

Esther, Tom has already explained this point to you a few times, and provided a link to the information on the Pace protocol. I don't have the energy to look for this link right now, but if you haven't read it why try to throw doubt on what Tom is saying, when he has read it? It is not a question of belief in anything, it is a question of reading what is in the protocol and seeing what they say. It is that simple. If you are really interested in outcome measures and so on, why not just go and read up on it?

Orla

I've read them Orla. It is as I say - I struggle to believe they've spent that much moeny without having anything more to show for it. I think I'll be hoping for something more up until I read the final paper. It's not an underhand attempt to throw doubt on what Tom's said, but an honest representation of my own state of mind.

 

[Dolphin]

I'm sure you know more about the details than I, but I'm still struggling to believe they could really spend that much money on PACE without collecting the sort of data that would be of interest to those sceptical about GET and CBT. If I were them, I would want to desig trials that had a good chance of proving my ideas wrong, or else over-coming the objections of those who disagree with me. Not many CFS researchers seem very good at this.

I think what you desire would be the right way to go.

But (guessing) they may like that GET etc appear to be evidence-based so why take risks. The Chalder Fatigue Scale and SF-36 physical functioning scale gives them the results they want. And the latter sounds as if it measures physical functioning so allows them to talk about recovery, ability to work, etc.

I try not to spend too much time thinking why they are doing things. All I know is that they dropped using pedometers at the end even though they are using them at the start so (i) would have data to compare with (ii) would already have the equipment.

 

[Esther12]

But (guessing) they may like that GET etc appear to be evidence-based so why take risks. The Chalder Fatigue Scale and SF-36 physical functioning scale gives them the results they want. And the latter sounds as if it measures physical functioning so allows them to talk about recovery, ability to work, etc.

That's just such a corrupt approach to research, but because there's being such a history of making misleading claims in order to help patients remedy their destructive thought patterns, it's difficult to give them the benefit of the doubt.

I think that the most damaging thing the GET/CBT lobby have done to CFS patients is introduced the notion that it's acceptable for medical professionals to mislead patients for their own good. It's destroyed our ability to trust our doctors or researchers and left us endlessly teetering on the edge of conspiracy theories. You're probably right to not spend much time thinking about it.

 

[justy]

Ive just arrived at this thread and also the other related thread. Thanks to Dolphin for having links in your signature nd many many thanks to Orla for writing and compiling all this stuff. I havent read every post but have got a pretty bad taste in my mouth from what i have read so far.

Purely anecdotally from one woman; i have never spent long periods of the day sleeping or in bed, i have hd sleep problems but have always continued to go to bed at a relatively normal time and get up in the morning early to get my kids to school. I actually do practice a type of sleep hygiene in order to get good sleep. I never though for one minute i would be cured by it and i havent been. it is so offensive for them to say that we would get better if we werebt deconditioned or had proper sleep patterns. I do have a proper sleep pattern and i do as much as i can in a day including a very short walk and light gardening on good days. I cook, clean my house infact i probably do as much as an average underactive housewife who does not have M.E. I also have reduce the stress in my life s much as possible, i meditate and do relaxation, i practice correct breathing. If health allows i do a few minutes gentle stretching, i eat well and healthily, i have recieved 6 sessions of CBT. ( i had already in the past done a 6 month course in CBT as a therapist - i am a trained counsellor)

Am i better? NO. Does it look like i want to be? too bloody right!

 

[Dolphin]

Extract from (UK) CBT course notes:
This is taken from page 7 of the Spring 2012 edition of the (UK) ME Association magazine, ME Essential
http://www.meassociation.org.uk/?page_id=1093 (it can take me a while to read things).

I thought it was a succinct quote to summarise the graded-activity/fear-avoidance CBT approach (and similarly the approach underlying GET):

---------

On to December when a young relative, diagnosed last summer with ME, was sent on a CBT course.

To quote from her course notes:

"Don't use your body as a cue to guide your actions, instead stick to your structured plan of set activity no matter what symptoms you are feeling. Don't see rest or avoiding activity as a safety net/cure; rest and avoidance does not reduce your symptoms and prevents the body building tolerance"

 

[m.e.kez]

I am currently waiting for my appointment to come through for the cfs clinic at Liverpool and after reading all of this i am appalled at how they treat us and i am looking forwards to going...i will not be brainwashed and after reading Dr myhill report and international consensus primer i am shocked at the way they push there beliefs for there own gain.... I would like to download the full booklet so i can prepare for my scientific answers from my own research.
The link for the booklet that is already on here won't load i would be grateful if this could be re posted i will let you all know how it goes and if anything has changed.
Thanks Kerry

 

[biophile]

rest and avoidance does not reduce your symptoms

Except when it does.

 

[m.e.kez]

Im looking forwards to the fun and games... Let the games begin

 

[Esther12]

The link for the booklet that is already on here won't load i would be grateful if this could be re posted i will let you all know how it goes and if anything has changed.
Thanks Kerry

The booklet was too large to upload. I attached a patient presentation that was also part of the FINE trial (which found that giving pragmatic biopsychosocial rehabilitation was no more effective than control group). I'll have a look for an easy way to put the handout on-line if I cannot see it elsewhere.

PS: I think a lot of the claims Myhill makes are dodgy too, even if they don't seem to cause such problems for patients.

 

[Dolphin]

The full pragmatic rehabilitation manual from the FINE Trial is likely to be similar to the Liverpool manual: http://www.fine-trial.net/downloads/Patient PR Manual ver9 Apr05.pdf

 

[MeSci]

I think a lot of the claims Myhill makes are dodgy too, even if they don't seem to cause such problems for patients.

Which of Myhill's claims do you think are dodgy? I have doubts about the efficacy of d-ribose (which she recommends), and had to stop it very quickly after trying it, due to adverse effects. I had been improving and it set me back.

 

[m.e.kez]

I don't know about it being dodgy ...but one thing i did like was the investigation process as to anything she suggested i can't get any doctor willing to test or try them out so it would be unfair if me to comment i did find the check list useful

thanks for the fine info going to have a read now.

 

[Esther12]

http://issuu.com/estherxii/docs/p_powell__liverpool_cfs_centre_patient_handout

There's the handout.

My guess is that they would be much more surreptitious about their approach nowadays, and would be keen to start by building a strong doctor-patient relationship.

Which of Myhill's claims do you think are dodgy? I have doubts about the efficacy of d-ribose (which she recommends), and had to stop it very quickly after trying it, due to adverse effects. I had been improving and it set me back.

The more I read about it, the more sceptical I become about anyone making money from specific claims about treating CFS, and Myhill can seem unduly forthright with many of her claims and suggestions. I don't think that there's much evidence to support the claims Myhill makes about a lot of the supplements she suggests. There was some stuff on her website about vaccines which was inaccurate... it's not something I paid a lot of attention to, but there were problems there, and I don't think people should trust the claims made on her website without doing some double-checking.

 

[m.e.kez]

I agree with the international consensus primer in most areas few i am undecided on i have to re read few times before i make decision but one thing i do know phyco babble is just that babble and i know i don't have any mental health problems and after a neurologist sent me to see a neurophychologist said i don't have any anxiety or depression i rest my case. I will have fun when i go to the Liverpool cfs clinic

 

[m.e.kez]

Thank you for the booklet one thing i like to do is cross reference and disprove what is put in things like this they should know better

 

[MeSci]

The more I read about it, the more sceptical I become about anyone making money from specific claims about treating CFS, and Myhill can seem unduly forthright with many of her claims and suggestions. I don't think that there's much evidence to support the claims Myhill makes about a lot of the supplements she suggests. There was some stuff on her website about vaccines which was inaccurate... it's not something I paid a lot of attention to, but there were problems there, and I don't think people should trust the claims made on her website without doing some double-checking.

I agree about double-checking anything, especially if it comes from a site where the writer stands to profit from the sale of the product in question. I think a lot of Myhill's info is sound though, and she has (co-)published some research papers that read convincingly and aren't about commercial products.

 

[Esther12]

I agree about double-checking anything, especially if it comes from a site where the writer stands to profit from the sale of the product in question. I think a lot of Myhill's info is sound though, and she has (co-)published some research papers that read convincingly and aren't about commercial products.

This is a bit out of my comfort zone, and this isn't an area where I've done much reading, but weren't a couple of those papers co-authored by those who run the labs whose testing was being used? Isn't Shepherd of the ME Association pretty critical of the claims made in those papers (I could be misrepresenting him here)? I've not really spent the time needed to look seriously at those papers, and I really don't have much faith in peer review ensuring that they are good pieces of work either.

 

[m.e.kez]

Dr myhill does have good research and alot of what she has found does make sense but i wouldn't know if in practice it works as I've not got the finances to do it my self and no doctor i have seen will try even they are sceptical.

As for the fine info I've just scanned over its incorrect in so many ways i only looked at the first few pages and i can disprove with evidence on my own medical records over 9 issues and that's only a few pages ... So how many this could i prove wrong in the full document ... My problem with this is its taken as fact.
I will need time to read through these documents and list the fiction in what they claim.