Bart's Therapy: CBT but not as we know it

[alex3619]

I agree with SOC. I have had CBT to some benefit, GET led to long term decline. I have also done meditation to try to help. We use whatever tools work. We just object to tools being foisted on us that do not work, and unsubstantiated claims of cures, dramatic improvements and so on. The claim that false illness beliefs are at the heart of our disorder is an unsubstantiated theory. Its based on old Freudian thinking. It has no place in modern medicine in my view. Given our understanding of ME pathophysiology exercise is very problematic - good research programs run by exercise physiologists that know the science might learn something, but psychiatrists doing exercise research have taken us backwards. Bye, Alex

 

[Cort]

These threads always get so heated! I think its very easy to explain why any kind of stress reduction therapy - whether its called CBT for meditation or mindfulness or whatever - can work for some people with ME/CFS.

Studies have repeatedly found evidence of problems in the two major stress response systems in CFS.

• One - there is increased sympathetic nervous system (flight or flight) activation and decreased parasympathetic (rest and digest) activation (mostly through HRV studies). There are few findings in CFS that have been demonstrated as consistently.
• Two - there is is also considerable evidence of HPA dysfunction including low cortisol levels in a subset of patients.

These systems are the two major immune system regulators in the body and regulate metabolism, blood flows, heart rate, etc.) If they are off then the immune system is off. When you throw in evidence of problems with natural killer cells - which can get walloped by stress - and the NPY findings - then it just seems logical that stress reduction therapies should be able to help. Finding ways not to stress these systems and hopefully help them heal makes sense to me.

I imagine there are many subsets in CFS - in fact I know it and these types of therapies may have no positive benefit at all in some people perhaps even most people with ME/CFS. And there is a group that they do have benefit.

Why is that? Probably different illnesses, different approaches, different commitments....there are alot of factors.

I find stress reduction exercises to be helpful. After 30 years of CFS I had never tried them but a couple of years ago I did and wallah - they actually improved my quality of life and my ability to exercise without relapsing has finally gone up just recently. I wish it worked better but absent something else I'm going to stick with them and hope that something better shows up (as soon as possible).

I'm using a blood volume enhancer that's helping out as well. I see, in my case, that a blend of things is helpful..

 

[Jenny]

What is the blood volume enhancer Cort?

 

[Dolphin]

These threads always get so heated! I think its very easy to explain why any kind of stress reduction therapy - whether its called CBT for meditation or mindfulness or whatever - can work for some people with ME/CFS.

FWIW, the Barts CFS service submission objected to mention of relaxation techniques in the draft NICE guidelines:

6.3.6.4 If a comprehensive, evidence-based programme, such as CBT or
GET, is not appropriate, the programmes or components which appear
helpful for this condition (and which are also components of GET or
CBT) which should be offered individually or more effectively in
combination are:
activity management strategies (see recommendations below)
sleep management (see recommendations below)
relaxation techniques (see recommendations below).

6.3.6.33 Relaxation techniques are appropriate for the management of
sleep problems and comorbid stress, anxiety or pain. Relaxation
techniques can also be incorporated into periods of rest.

---------------------

SH St
Bartholomew'
s Hospital
Chronic
Fatigue
Services
68 FULL 181 6.3.6.4 &
6.3.6.33
We are not aware of any evidence to
support the use of relaxation therapies
by themselves in CFS/ME. In fact this
technique has often been used as the
main component of ineffective
comparison treatment arms in several
RCTs (see: Fulcher KY & White PD.
Randomised controlled trial of graded
exercise in patients with the chronic
fatigue syndrome. BMJ 1997;314:1647-
52. And: Deale A et al. Cognitive
behavior therapy for chronic fatigue
syndrome: a randomized controlled
trial. Am J Psychiatry
1997;154:408-414.) Why, therefore, is
an ineffective therapy included? We
suggest this is omitted, unless it is
clearly qualified by its indication as an
aid to sleep, anxiolysis, et cetera, as is
done well in 6.3.6.33.

 

[Wildcat]

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Astrocyte, you claim that Barts has changed.

I wonder if you have seen the reports written about you by PDWhite? Or the report written by the nice therapist? Those patients who have requested copies of the reports discover that what the Barts consultants and therapists say to their face, and what they write in the reports, are two totally different things.

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[Wildcat]

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Barts-trained CFS professionals specialise in surface niceness whilst treating ME as a psychological disorder. That became apparent to patients who were referred to the local Sussex CFS Service, designed and run by Barts-trained Dr Brian Marien, who is a specialist in Psychological Medicine and Corporate CBT, and who owns a number of commercial CBT training companies.
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I suggest reading in full the RiME Report on the Barts-linked Sussex wide CFS/ME MDT service.

The Referral Criteria contains one symptom only (Fatigue) and places emphasis on illness beliefs


.

RiME: Sussex Services 13 June 2009

http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:
The Sussex MTD will be linked to Barts who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts CNCC will also offer one-off consultation on more complex cases where this is appropriate

 

[Wildcat]

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Its not just the case that other Barts patients have had crap experiences. It is the case that there have been a lot of ME deaths in Barts-controlled Sussex, including Lynne Gilderdale and Sophia Mirza.

Most Kent and Sussex ME sufferers avoided the local CFS services (the referral criteria includes only one symptom fatigue with emphasis on illness beliefs) and those who have attended the local CFS Services were severely disappointed and demoralised by them. There are numerous hidden horrors that have gone on in the Barts referral areas.



Sussex ME sufferers who were referred to Barts direct were offered CBT/GET only, and if they declined, or were too sick to attend sessions, the patients were abandoned and stonewalled by the Consultants (including Professor Pinching).

 

[Wildcat]

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Firestormm believes that it is nave of ME sufferers and carers to state that the money spent on the UK CFS clinics would be better spent on Biomedical research.


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Please note the 2005 Quote in the RiME Sussex Services Report from a mother of a young ME sufferer from Wadhurst, Sussex, who said that public money would be much better spent on Biomedical research into ME than on the CFS clinics:

http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

Wadhurst 2005

my daughter has been chronically affected with ME and bed-ridden for fourteen years now. These new clinics have nothing to offer people like her. We would much prefer that public money was spent on biomedical research into ME

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The mother of the young ME sufferer from Wadhurst Sussex was later interviewed here: http://www.dailymail.co.uk/news/art...e-cleared-attempted-murder-daughter-Lynn.html. 26 January 2010.

'Why was this loving mother ever put on trial?' Judge's anger as woman is cleared of attempted murder for helping her daughter die after 17 years of suffering



Mrs Gilderdale, from Wadhurst, East Sussex, did not give evidence during the trial at Lewes Crown Court.
But describing her terrible dilemma in an interview, she said: 'You are torn apart. You have one part of you wanting to respect your daughter's wishes and understanding everything they have been through.
'You have got your heart being ripped out at the same time because all you want to do is to get them better and keep them alive.'
Following the not guilty verdict, Mr Justice Bean gave Mrs Gilderdale a conditional discharge for assisting the suicide, to which she pleaded guilty last July.

He said: 'I do not normally comment on the verdicts of juries but in this case their decision shows that common sense, decency and humanity which makes jury trials so important in a case of this kind.' .

.

 

[Enid]

Ah come on - a little talking with support for an illness not yet fully understood gives some medical quedos - that is all.

 

[Wildcat]

Hi Enid - I don't quite understand your Comment (are you being ironic? - that is how I read it)

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The deepest irony is that the Barts and other 'CFS' Services avoid all attempts at 'Understanding' ME. Though the Canadian Consensus Criteria did provide such understanding, the UK 'CFS' Services studiously avoided using the CCC and avoided all the evidence that ME is a serious organic Neuro-Immune Disease.


At the (first) Royal Society of Medicine 'CFS' Conference of 2008, Peter White preposterously claimed that the Canadian Consensus Criteria *increased* the chances of psychiatric disorders being misdiagnosed as ME!!!!!

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Yet another example of the Barts and King's College Hospital Psychiatrists reversing reality.

.

 

[Enid]

No irony Wildcat - the psycho lobby was and is a desperate clinging on ignorant totally of scientific findings. There is a saying something like if you are a carpenter everything is a nail. But real medicine and research is totally malleable - it has the capacity to learn and adapt/absorb all new discoveries in understanding and progress (that is science - that is life for those with sufficient humility to learn more to aid).

Eight years ago I was told my collapses in A & E were no more than "all in my mind"- who is the more intelligent as I found with much difficulty a pathetic psychiatrist - 4 very junior docs (note no caps) - made with great relief far from them and eventually home. The language would be blue here were I allowed.

 

[Wildcat]

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What a terrible situation, Enid. That must be so very distressing and frightening (not to mention the medical malpractice!).


8 years ago I was told by an A&E Nurse and Doctor that my badly broken and displaced rib was "muscle strain" - they achieved that grotesque non-diagnosis by refusing to examine, or even look at, let alone X-Ray and treat, the badly broken rib that was actually sticking out of my chest!

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After 17 years of dealing with doctors in such extremes of denial that it made them overule all their actual medical training - I can only conclude that the idea that ME has a "psychological component" can and does make medical professionals stupid, abusive and very dangerous!

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BW
Wildcat xxxx

 

[Wildcat]

Astrocyte - you claim that your 'treatment' at Barts and at the hands of PD White has done you so much good - yet you have not responded to my post on this thread:



Wildcat wrote: "@ Astrocyte: I wonder if you have seen the reports written about you by PDWhite? Or the report written by the nice therapist? Those patients who have requested copies of the reports discover that what the Barts consultants and therapists say to their face, and what they write in the reports, are two totally different things."

 

[Wildcat]

.
Astrocyte?????

 

[taniaaust1]

My 'problem' has always been extreme difficulty in coping with acceptance and adjustment following relapse. I needed to get my head straight and try to understand myself as well as the limitations of my condition better. To see if I could give myself a break I suppose and stop beating myself up about it - lessen the guilt somewhat - and learn to readjust and pace - not PACE

In the past all my referrals have been to psychologists who see other patients - more often than not those practitioners worked with long-term chronic conditions. On occasion I met with what I would term - 'run of the mill' - practitioners and they were 'crap' :Retro rolleyes:

same here. In Australia as far as I know there isnt any psychologists who are trained to deal with ME/CFS patients.. so if one has a problem one needs to see one for, one just goes to any old psychologist. How good they are for dealing with any of the emotional and psychological issues we have around being ill.. all then depends on what they believe about ME/CFS.

I posit that reform is better than closure. Maybe it is too late in Belgium, maybe Belgium has no other choice. But closure has - like it or not - been vetoed. Patient involvement and patient's taking some responsibility would be great (IF they can manage it).

Similar thoughts are being applied to services in the UK. I noticed the other day there was a petition to close all specialist centres in the UK and pop the money into research!!

I would not be adverse to seeing an independent evaluation of our remaining clinics - but closure outright in the belief that the money 'saved' will enter into research is idealistic in the extreme.

I too think many are idealistic in thinking that if they get rid of the centres, they will then put more money into research. That isnt necessarily the case at all.

It is likely the situation could then end up how it is here in Australia.. no centres and no money really being put into research (most research in Australia is funded by private means and donations). There is a possibility that CFS may be less known in Australia then England due to the no CFS centres, with more patients completely undiagnosed and left not knowing what on earth they could have. In Australia it can be a complete abandonment by the medical profession.

Ive never had a doctor send me to do CBT for ME/CFS as no centres exist.. the treatment I got for 13 years of this illness was NOTHING AT ALL.. NOT EVEN SYMPTOM RELIEF MEDS when I had severe symptoms of all kinds .. I used to have severe FM and everything else (until past few months when FINALLY Im getting treated). Its like ME/CFS is completely ignored here by most of the docs.

That is what may happen in England if all the centres there were closed. (pity for those who have CFS of not the ME kind who psych therapies can really help with more then just dealing with the illness).

What there needs to be is big reforms.. world wide.. and separation of different subgroups of patients .. (with hopefully different names) so that suitable studies and treatments can be done for the different groups.

I dont know if it would be a good thing for England to get rid of those centres and start from scratch or be thrown into a point where there is no where to go at all for those who are ill.. no one to talk to. no one to even want to help in any way, or have them all reformed.

Anyway. I just wanted to point out that getting rid of all those centres dont necessarily at all mean that the money spent on them will go into ME/CFS research.

 

[RustyJ]

same here. In Australia as far as I know there isnt any psychologists who are trained to deal with ME/CFS patients.. so if one has a problem one needs to see one for, one just goes to any old psychologist. How good they are for dealing with any of the emotional and psychological issues we have around being ill.. all then depends on what they believe about ME/CFS.

There is no doubt there are biological symptoms associated with me/cfs. They are being ignored. As long as this is the situation, the focus on psychological cause is misdirected.

Regarding psychologists, when I was first directed to a psychiatrist (at my own request) he referred me to a psychologist for an intelligence test (I think that is what it was called, probably a neurological function assessment). The test showed dramatic deterioration of function during the course of the test, so much so that I was unable to complete it. Even I was surprised at how poorly I performed. The psychologist's report was enough to support my claims to the psychiatrist who since steadfastly believes I have a biological problem.

Perhaps such a test would be enough to convince other psychiatrists, if requested by the patient. They don't have to acknowledge the existence of me/cfs, just that the patient has neurological problems.

 

[Valentijn]

Astrocyte - you claim that your 'treatment' at Barts and at the hands of PD White has done you so much good - yet you have not responded to my post on this thread:

If you look at Astrocyte's profile, they haven't been on the forum in a month.

 

[Googsta]

Hi Jace Thanks, I'm glad it helped me too. Perhaps you havent read the beginning of this thread? I have first hand experience of what is practiced at Barts.

http://forums.phoenixrising.me/showthread.php?16830-Bart-s-Therapy-CBT-but-not-as-we-know-it&

That's the link of my experience. Very different from your understanding. PACE was a research study, what I am getting is clinic based and therefore has been tailored to my needs.

Thankyou for posting Astro, I for one don't give a rats where you got your helpful CBT so long as it helped.
It took me many years to find supportive help & that wasn't even due to M.E, it was just finding a therapist or psychologist who treated me with human decency. I have applied what I have learned to managing my lifestyle with a chronic disease. I'm still learning! but life is better all round.

I applaud your courage for sharing a positive experience with us on such a contraversial subject

 

[jace]

So, we have one positive report that Barts has changed, to set against all the evidence of harm that they, and the Sussex ME service under their wing, have caused to people with ME.

Rusty's experience with the intelligence test reminded me of the event that made me realise something really was wrong with me. I was brushing up my office skills, prior to taking on a new job. Doing the typing course, which had real-time feedback, I'd be whizzing along at around 40 wpm, no errors, when suddenly the instructions stopped making sense, and my speed fell to around 12 wpm with lots of errors. Really strange. It was as if someone had cut a connection in my brain's library of knowledge. It's something that without the real-time feedback, I wouldn't have known about.

 

[Dolphin]

New thread: BACME conference '12-link to short report on Peter White's keynote speech

New thread: BACME conference 2012 - link to short report on Peter White's keynote speech:
http://forums.phoenixrising.me/show...-short-report-on-Peter-White-s-keynote-report
(I had seen a summary like this on Peter White's talk over a month ago so was confident his views had not changed substantially)