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

[V99]

Does the APPG on ME know that this is happening? I relise I am most likely uninformed, and they may already know.

 

[Orla]

Chapter 12

There is only one page in this chapter. They talk about diary sheets but unfortunately I don't have copies of them, though you get an idea of what they are like from this page. I will scan it in when I get a chance.

Chapter 12 Diary Sheets

Thought diary
Some patients found the following sheet helpful in dealing with worrying thoughts about symptoms or other problems.
We know such thoughts can delay recovery (p95)

[Orla - there is no evidence for this]

Activity diary
..Patients do find it useful to have a record of their achievements, especially if they suffer setbacks while on the programme.

...We would advise against keeping a record of your symptoms even thought they are intense and unpleasant at time.
Monitoring and recording symptoms causes increased arousal or activity of the nervous system and increased adrenaline production. This can cause further symptoms which can delay recovery (p95)

[Orla - And if you keep a symptom diary you might actually see the world as it really is, instead of the way we want you to see it. And there is a danger that you might answer your questionnaire questions incorrectly.]

 

[Orla]

Patient experience

This is an account from one patient who attended the Liverpool Clinic. This was posted on another forum in early 2007. I have permission to repost it here. I am going to try to find out more information about the current situation at the clinic, though it is still run by CBT-school believers. I have put some of the text below in bold to highlight some of it.

Hi, <name removed>, i'm another one that had 'treatment' from Liverpool, and had the same responses from the medical team as you.

Dr X [I know the name, I have removed it] was my consultant prior to his retirement. The first (and
only) time I saw him he answered my questions for me - "you sleep during the day" (I didn't, I worked), "you hate your job" (I loved my job and was up for promotion) - clear he had a set stereotype of who has ME.

He sent me on a year long 'treatment' programme run by Doctors in the Liverpool Tropical School of Medicine, consisting of GET/CBT and resetting body clocks.

All the group tried these through the year and put forward reasons why it wasn't working (if they did work, surely this would show up in a year of treatment ) but the Doctors were set on what they believed - this was 'deconditioning' not ME. There was no discussion, and if you weren't on board you were being negative.

We were given tons of their literature around GET/CBT, and how if we 'reset our body clocks' we will sleep better and therefore feel better-simple as that! One guy in the group was a builder lugging
around bricks, cement etc every day, he asked how could he be 'deconditioned' doing so much exercise every day!

We were told to do something even on our worst days, even if it was only 3 pedal rotations on an exercise bike (exercise bike was their recommended fitness tool and we were all encouraged to get one or get access to one).

The tone was that after diagnosis, we were in a bit of a 'sorry for ourselves' depression with having ME - all 'treatments' were 'one size fits all regardless if it applied to you or not.

That has been my 'treatment' to date - 7 years on from getting ill, it's tragic. Tragic that when I try and apply for sickness related benefits (having lost my last 3 jobs after relapsing) I have these Doctors giving evidence to DWP about my condition - needless to say this has gone against benefit applications

So if you have ME you hate your job, you're very inactive, you'refeeling sorry for yourself and you sleep erratically by choice.

 

[Galena1]

Thank you Orla for this considerable contribution. I've only managed up to page 7 so far but will read the rest eventually. It's a very worrying document. Fortunately, my GP doesn't believe ME:Retro smile:is a psychiatric condition. He freely admits that he hasn't a clue what causes it. From time to time he offers CBT/GET but neither of us really believe that it will make any difference.

My two pence/cents worth re CBT and GET.
- I was diagnosed in 2005 with ME, 18 months after having to give up work.
I attended 8 (or 10) x 2 hour sessions combined CBT/GET about 4 years ago. These sessions were specifically for ME sufferers. I only participated because then, as now, there's bugger all else on offer. This was a 'pilot project' organised by my local hospital and referral was by my GP. My conclusion? A waste of time, the only 'up side' was that I met some very friendly people:Retro smile: The GET component was, basically, do less and stop before you get tired. The whole fiasco was psych based and even requests for basic allergy tests were refused, despite everyone at the sessions having intolerance problems. No physical testing of any sort was part of these sessions, although the odd sound of whale/dolphin 'music' was thought to possibly be beneficial

I am currently part way through another group of 10 x 2 hour CBT? sessions as part of another Research Project. This is not specifically ME related ( I'm the only one) but my GP asked if I was interested in getting involved and I only agreed because my doc may lose interest if I don't at least try something he suggests!:Retro wink: Apparently, these sessions are definitely, absolutely, irrefutably, not CBT. Heh! Heh! they can 'dress it up' how they like, but it is still CBT:Retro mad:.
On to the 'measuring success'.
1. Each week I complete a Beck Depression Inventory Form. These are 'scored' and returned the following week.
2. The scores from the Forms are transferred to a graph covering the 10 week period.
3. A drop in the score over the 10 weeks is used as an indication of improvement and proves that this form of CBT, that isn't CBT , is effective. Absolutely, no use for ME but hey... what the hell!
Looking at my own graph it would seem that, apart from the occasional very minor 'blip', I have pretty much 'flat-lined' and therefore am as deranged as I was when I started
The positives so far? Met some really nice people, again. Thinks.............Yup! That's about it. How the hell anyone can believe that CBT is an effective treatment for ME continues to escape me.
There is no doubt that some of the non-ME sufferers have benefited from these sessions, but others, including myself, did question my inclusion.

My own personal GET - I tried to gradually increase my levels of exercise over a lengthy period, and it failed miserably The effects/level of unwellness related in no way to the amount/type of exercise taken. A short walk could result in considerably worse discomfort than a 'longer' one, or vice-versa. It is impossible to know how my body will react to any 'exercise' and this is why GET, for me, is a failure. The concept that I should be able to increase my exercise gradually and get fitter is a myth.
Clearly I'm not thinking positively enough

 

[Orla]

Hi Galena,

Sorry for not replying sooner. Thank you for describing your experience. I do feel patients feel pressure to a greater or lesser extent to attend the clinics and try CBT/GET. I can understand this, as it is difficult not to worry about looking uncoperative if you refuse the only thing on offer. Of course sometimes refusal is a safer option if it is some particularly hideous place they are trying to refer to (so I am not trying to put people off refusing, just I can understand that it can be difficult). This is one of the reasons I am glad I am not in the UK, so I am not being pressurised into this stuff.

People also often seem to attend these courses also because, as you have said there is nothing else on offer and they feel they may as well try it.

It is the reality of life that makes a myth of patient choice and right to refuse. And as for informed consent, HA HA. The people running GET programmes do not even acknowledge that we have a physical disease, or that GET can have long-term adverse health consequences, never mind inform the patients of this.

It is very frustrating that these places do not offer testing. The CBT costs quite a lot per patient (I have figures on this somewhere so will have to dig them out). It would actually be cheaper to offer a few tests instead of CBT.

Looking at my own graph it would seem that, apart from the occasional very minor 'blip', I have pretty much 'flat-lined' and therefore am as deranged as I was when I started

And yes, as you point out, the fluctuating nature of the condition makes GET impossible,

Edit: some people have posted about CBT experiences here

http://www.forums.aboutmecfs.org/showthread.php?4127-CBT-and-GET-The-patients-have-their-say


Orla

 

[Orla]

Liverpool CFS Clinic handout

You can now download a copy of the Liverpool Handout for patients here (thanks to the person who did this)

http://www.megaupload.com/?d=6WMGQHQX

There is some additional material used at the clinic which I had not highlighted or commented on and will do it when I have the energy.

Orla

 

[Dx Revision Watch]

Dr Alastair Miller, Liverpool, is Action for M.E.'s new Principal Medical Advisor:

http://www.forums.aboutmecfs.org/sh...ew-Medical-Advisor&p=78444&posted=1#post78444

 

[Orla]

Hi Suzy, I also started thread on Alastair Miller at http://www.forums.aboutmecfs.org/sh...l-Adviser-Dr-Miller-(who-promotes-CBT-and-GET)

I have asked mods to merge threads.

Orla

 

[Dx Revision Watch]

Yes, thanks.

Suzy

 

[V99]

Doesn't alter my thoughts on AFME. Not a positive step.

 

[Orla]

Handout

This page, below, was part of a short handout given to a patient in late summer 2009, who attended an information talk by some of the clinic staff for patients. (patients attended the talk and could then decide whether to do the CBT/GET course or not).

This page is very similar (possibly identical, I need to double check) as a page from the long handout I had commented on. The ideas are exactly the same.

 

[fingers2022]

Mimicing - could be the answer?

Thanks, Orla, I feel so much better now that I know my symptoms are only mimicing.

F*** me, for 20 years there, I thought I was ill. Phew!!

Looking forward to this guy sorting out AFME. He's into infectious diseases so obviously understands all this stuff.

I'm feeling ever so upbeat now.

F

 

[Esther12]

Are they testing these claims? They don't sound impossible to me (although the third box seems a bit silly). It seems really premature to tell patients that this is what's happening, but a lot of it sounds plausable to me.

 

[Robin]

Um, so there's "deficiency of cortisol" in box 1, which leads to "adrenaline production" in box 3? So which is it, is the cortisol low or high? That makes no sense.

I don't believe there's any evidence for deconditioning causing any kind of pain; there's theory about deconditioning increasing existing back pain. Also, I doubt there are any physiological inks between deconditioning and nausea or dizziness either. A lot of CFS patients experience these symptoms all the time, not just during exertion. And heightened CNS causing flu-like symptoms? That's a stretch. People can have full blown panic attacks and feel all kinds of symptoms but they're usually brief in duration and self-limiting.

They need to cite some sources!

 

[Esther12]

It's a bit of a shame that we've been so badly treated that I really don't know whether the '3 Box Model' is a genuine attempt to understand CFS which they're now busy trying to prove true or false, or just a load of guff come up with to try to entice stubborn CFS patients into accepting their medicine.

If the PACE trial included before and after measures of the thickness of the heart wall, oxygen consumption, adrenalin production, etc, etc, it would be genuinely interesting.

 

[Dolphin]

Are they testing these claims? They don't sound impossible to me (although the third box seems a bit silly). It seems really premature to tell patients that this is what's happening, but a lot of it sounds plausable to me.

Although one might say it wasn't a direct test of the claims, the FINE trial was based on the information from the Liverpool clinic:

We previously reported on a large-scale hospital-based trial in Liverpool, with out-patients suffering from CFS/ME, of a treatment termed "pragmatic rehabilitation" [26]. The treatment is based on a model proposing that CFS/ME is best understood as a consequence of physiological dysregulation associated with inactivity and disturbance of sleep and circadian rhythms [27]. We have argued that these conditions may be provoked by a number of biological and psychological factors but are often maintained by illness beliefs that lead to exercise-avoidance. The essential feature of the treatment is the provision of a detailed explanation for patients' symptoms, couched in terms of the physiological dysregulation model, from which flows the rationale for a graded return to activity. The explanations for various symptoms of CFS/ME highlight the interaction between psychological and biological factors. They are given to the patient both verbally during an initial discussion with the therapist and in the form of a fully-referenced manual, which has been developed in close collaboration with patients who have successfully completed the treatment. Having taken control of their symptoms through a programme of graded activity, normalisation of sleep patterns, and simple anxiety and stress-reducing procedures, patients are better able to consider the role of psychological and social factors in their condition.

The (recently published) FINE trial was largely unsuccessful (no significant differences at follow-up in any of the five outcome measures they reported, even though it was a large study).

 

[Dolphin]

It's a bit of a shame that we've been so badly treated that I really don't know whether the '3 Box Model' is a genuine attempt to understand CFS which they're now busy trying to prove true or false, or just a load of guff come up with to try to entice stubborn CFS patients into accepting their medicine.

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.

If the PACE trial included before and after measures of the thickness of the heart wall, oxygen consumption, adrenalin production, etc, etc, it would be genuinely interesting.

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.

 

[Dx Revision Watch]

@ Orla

I haven't had time to read through all of this thread yet (and I'm not sure my BP would stand reading it through in one go) but from the posts that I have seen, I just wanted to say thank you for all the work you have done on this issue.

Suzy

 

[Orla]

Thanks Suzy, I was thinking I could market the booklet as a cure for low blood pressure

It actually gets worse as you go along :worried:

I have some more info to post but don't have the energy at the moment, but will hopefully get to it soon. Though that booklet was the main thing.

Orla

 

[Dx Revision Watch]

Thanks Suzy, I was thinking I could market the booklet as a cure for low blood pressure

Absolutely. Why bother messing around with increased salt intake and Florinef when a daily read of this stuff will have you back at 120/80 before you can say "sphygmomanometer".

It's very similar to that ghastly KCL article by Mary Burgess, based on the work of Pauline Powell.

I have some more info to post but don't have the energy at the moment, but will hopefully get to it soon. Though that booklet was the main thing.

Will look out for that.

Suzy