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

You are making the assumption there at all the other patients are getting helped (rather then harrassed) like yourself did. Unfortunately that isnt always the case when it comes to CBT as with many its effects wasnt so good. There are many who would of been better off without the CBT they had.

I just wanted to second SOC's excellent posts on this thread. As I understand it, the CBT practiced at BARTS is the type that was used in the PACE trial; nothing to do with coping with the illness, rather it is designed to realign our false illness beliefs:

As White himself said, in a letter to the Lancet: The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME.

He goes on to say CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria). [2]

Tom Kinlon's excellent meta-analysis of harms from the psychiatric treatments as recommended by the NICE guidelines, that NHS clinics adhere to, shows that up to 38% of patients undertaking CBT for ME felt they had been harmed by the 'therapy'. If it was a drug, it would have been banned.

Glad it helped you though Astrocyte.

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome





1] White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011 doi:10.1016/S0140-6736(11)60096-2
2] http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm

I think what is happening in Belgium amply demonstrates why psychological approach is destined to fail. Meanwhile those peddling their comforts and psych cures make their money and move on to other victims.

As the dot points illustrate, despite being set up for multidisciplinary treatment, only CBT and exercise therapy was offered, thereby channeling funds to the same old frauds.

http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers/

http://forums.phoenixrising.me/show...reference-centers-quot-Tx-rehab-(CBT-amp-GET)

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.

I'd agree taniaaus1 that quality may well vary. My therapy, and it was more than CBT, happened to worthwhile and that's what I wanted to explain. This forum is so anti psychology, you're unlikely to get a balanced view of whats going on in the UK. I know the Sussex NHS clinic did a patient survey and about 75% of patients said they found therapy/CBT helpful (not a cure). But nobody who finds NHS therapy useful is going to come onto these forums and say so. It always descends into politics and animosity.

I'm very unusual in that I've spoken up and so the assumption is that my experience is unusual.

Thanks for sharing your own experience earlier in the thread. I think you're right. It really is so important to find a therapist who feels comfortable to be with.
And I like your phrase - therapy for 'trouble shooting life'. That's spot on. I'm glad you found somebody to help and its interesting that there are so many names for therapy.
DBT, health psychology, etc I suspect good therapists use whatever is useful for their patients.

I don't think that this forum is unbalanced. I've belonged to groups before where pro-CBT people and pro-graded exercise people have posted to in the past. I've belonged to groups where they have dominated over time and then disappeared to turn up later on other groups that talk soley about beliefs.

There are a great number of ME and CFS patients who are unhappy with the UK clinics and I meet them whenever I go to local support groups meetings and national group meetings. I meet very few patients who are happy with CBT and remain happy with CBT. Sometimes they are happy when it is being carried out but after it has finished, they feel that the money could better have been spent on addressing their physical problems.

Of course the patients at a NHS clinic are going to report in a particular way. The survey would need to be all ME patients in that area for it to be in any way meaningful. We have the surveys carried out by the MEA of course.

My experience of belonging to local support groups, national groups and internet groups for decades is that few long term or medically experienced / educated ME and CFS patients support CBT and GET as it is provided by some of the NHS clinics. The supporters tend to be either new people or those with a psychological illness or an interest in these methods. I've seen new people report at local support group meetings about how good their CBT (or whatever is) and then seen them change their mind over the years as they remain ill and that approach doesn't help them further.

I didn't come into this area with ideas about psychology. I'm not anti psychology but anti the NHS methods that were tried on me and were harmful. That's learning through experience sadly.

The BARTS patient I am in regular contact isn't happy with her treatment either.

I think that goes to the heart of this thread. Astrocyte's experience of Bart's therapy is very positive and the therapy is very unlike that used in PACE (and I have read the PACE manuals). A lot of criticism seems to be based on what PACE or Peter White (who runs the Bart's programme) has said, or the experience of others with CBT either not at Bart's or from quite a while ago.

What would be very interesting to know is how typical Astrocyte's experience is of therapy at Bart's. Presumably other patients with the same therapist (don't know how many therapists Bart's have) will have similar experience.

My own experience of CBT, from years ago, is mixed. The first lot was highly militant CBT, the second was altogether more pragmatic; neither helped, though I certainly didn't have anything like the therapy that Astrocyte describes.

It's very common to find that therapy on the ground is quite different from the therapy described and controlled in clinical trials. In terms of the argument 'we would be better off closing down Bart's CFS service and having nothing instead' (the money wouldn't go into any other therapy for CFS) it really would be helpful to know what that service is really like right now. As Astrocyte says, this forum is unlikely to attract too many positive comments about CBT (just read the flak Astrocyte's posts have generated). I don't know if there is any reliable way to get such information, but I do appreciate Astrocytes' posts on one patient's experience of Bart's therapy

Thanks Astro for describing your experience in such detail. It's interesting to see what really happens. As I've said on another thread, the term CBT needs unpacking, and we really don't know what is going on at the moment.

I might ask my GP for a referral to Barts. I had a referral to the Royal Free clinic - for years I wasn't even well enough to attend, but once I was, they tried to discharge me! They said there was nothing they could offer, as Haringey (local Trust) wasn't funding any treatment any more.

First, I'd like to see if Haringey will agree to a referral at all. If they do, I'd like to see what options Barts offer. It seems the situation with regard to these clinics is rapidly changing, and we need up-to-date knowledge of what's going on in order to inform our advocacy efforts.

Jenny

Fine. But the reality is that most people do not have access to such thoughtful and apparently understanding therapists. People are hostile to psychologists because the biggest ME bio-marker so far is to be told that it's all in your head. This is the CBT that I've been exposed to and what 99.9% of the ME population gets. My session(s) with neuro-psychs were extremely unproductive and very, very harmful. I, personally, will never see another one and think the whole "industry" is a huge waste of money, time and energy.

Glad you found that one person who could be helpful in the psycho-babbling world.

Nothing I read in Astrocyte's posts has convinced me that Bart's has moved away from the "it's all in your head approach". The "it's not a cure" assertion is just misdirection. As far as I am concerned that's just a wedge they use to break down their victims, a standard approach in any treatment protocol. Meet the patient on common ground, half way, make it seem like the victim is right, then erode the victim's beliefs over time - that's a standard sales approach in any psychological treatment.

There are short-term improvements, mainly bought on by adrenal changes - patients are excited, they want to improve. I've never met a cfs patient that didn't want to improve - this is significant and unique in cfs. The adrenal changes alone lift biological systems for a short time. I experience this effect all the time. I employ tricks to deliberately boost my adrenaline if I need to perform tasks. But in the long run this leads to further exhaustion. The pattern has been observed often in cfs patients.

Apart from a few transitory and very limited energy changes, basically the Bart's protocol is about making patients feel better about their illness.

I've experienced these sorts of improvements from taking a couple of Vit D caps at a cost of $20/month. Put the thousands of dollars spent on each patient at Bart's into biological studies, PLEASE. I want a cure. I can feel good about my disease any day, but it doesn't get me a job or a sex life.

I don't believe that is a fair characterisation of the majority of posters here.

I don't believe most of us are in any way anti-psychology. In fact psychologists rarely figure in ME/CS research or discussions here and when they do they are often positive (the sterling work of Lenny Jason springs to mind). Many of us frequently use psychological techniques such as mindfulness meditation because we find it helps but doesn't require value judgements on whether or not our beliefs are 'maladaptive'.

I also don't believe we are anti psychiatrists in general. Most of the neuro-immune research that may be relevant to ME/CFS originates from psychiatry. What you will find hostility to is the small but influential group of psychiatrists who proselytize for their psychosomatic model and version of CBT and inflate its effectiveness from moderately effective in some cases to restoring patients to normal functioning.

I appreciate that you found the Barts' therapy genuinely helpful and thank you for posting about your experiences. That is encouraging but hard for me and others I suspect to square with the whole PACE approach and subsequent reporting.

If the PACE approach represented a minority viewpoint then we might be more relaxed about CBT but PACE was intended to maintain and entrench this approach as the 'first line treatment" for ME/CFS. Hence suspicions when told that NHS treatments are 'not like that at all'.

If this is generally the case (i.e. CBT delivered via the NHS is not the same as that used in the PACE trial) then two points logically follow. Firstly it would confirm that the PACE proponents represent a minority view and therefore in no way should be considered the go-to experts when ME/CFS is discussed. The opposite appears to be the norm. Secondly, contrary to the NICE guidelines, current NHS treatment of ME/CFS using CBT has no evidence base as most of the ME/CFS CBT studies, of which PACE is by far the largest and most influential, are based on the 'illness belief' paradigm.

Why this matters of course is that the claims made for PACE directly impact on biomedical research and the likelihood of treatments that do more than aid coping. Aside from diverting scarce funding what virologist, neurologist or immunologist would rush to carry out research into a somatoform disorder that can be cured by CBT?

The argument is often made that CBT is also used for other illnesses that are 'physical' which is very true as CBT use now seems to be ubiquitous. I needn't bother repeating that CBT used in other illnesses is not based on the same assumptions underlying PACE.

But comparisons are useful. When discussing the PACE results we looked at many analogues including the use of CBT in multiple sclerosis where it appeared to be somewhat more effective when compared objectively to the PACE results.

In other words there is a moderately effective treatment currently available for MS. Nevertheless it can't have escaped your attention that NICE has just reversed a previous decision to make available a new drug treatment for MS at a cost of approximately 19,000 per annum - incidentally in the same ballpark as the cost of Rituximab. The symptoms of MS are often indistinguishable from ME/CFS and levels of morbidity are similar.

But should the Rituximab trials clearly show it as a succesful treatment for ME/CFS, what chance of NICE approving it given the cost and known side effects when CBT and GET PACE style have been shown to restore patients to normality. It must be true after all as it was widely reported in the media and no-one, such as the Science Media Centre, demanded that these claims were withdrawn.

So I'd be very interested to hear from others who found NHS provided CBT helpful and what form it took.

I'd also like to hear those health professionals delivering 'non-PACE style CBT' speaking up truthfully about what they expect to achieve using this therapy and what they think of the curative value of CBT.

I think you're right. And I'm saying that as someone that has been seeing a psychologist at a fatigue center for three months now. There have been intermittent warning signs, like saying once that it would help me recover ... but she'd change her tune any time I asked for clarification on those statements : "This is just to help you cope, it won't cure you" etc, etc.

I went to my appointment today hoping to vent about a bad visit to neurologist, but as soon as I mentioned "neurologist" she was asking me "But what if the specialists can't help, and everything stays the same?" So I told her why the specialist could have helped, and the last one on the list (orthostatic specialist) almost certainly would help. But she insisted I focus on what my life would be like if nothing improves, and how I should start doing more things that I enjoy, even when I stated REPEATEDLY that I can't do anything currently because the OI is so bad. "But you get worse just sitting around, you need do things you enjoy to improve!"

She also told me I'm not a patient, and that I should be enjoying life. I'm not in a hospital, after all. When I asked her what additional activities she thought I might be able to enjoy while not able to leave the couch, she said she couldn't answer that and that I had to answer it myself. The only suggestion she made was ... swimming

It's been so back and forth between "I'm here to help you cope" and "psychology can make you better" with her that I really have no idea what's going on anymore. I suggested that I might get a wheelchair, so I could get out and enjoy activities like grocery shopping again, but she didn't respond at all to that, neither to say "yes, that would improve your quality of life" or "no, you'll become less active if you get a wheelchair".

All I know is I spent most of the appointment crying because she kept saying that seeing specialists usually doesn't help with ME and "what if you don't improve", which is pretty nasty for me to think about at this point in time. Even if she isn't in the Nijmegen "You're Not A Patient" camp, she's a crappy psychologist. And it took a while for it to become apparent.

Patients may get offered graded activity oriented-CBT then mindfulness CT in future

(I'm not up-to-date with this thread yet but I thought I'd point out that)

With deep enough pockets, people could keep going to therapists/psychologists for a long time.

This could happen with ME/CFS.

We have already had trials like:

An awful lot of money can be spent on non-doctors (who can't prescribe drugs or order tests) if a system allows it.

Evidence-based medical therapy vs evidence-based psychological therapy

(Again still haven't caught up)

NICE only recommended GET and graded activity-oriented CBT.
Everything else was barred as there was not enough evidence for it.

However, some services do offer some other non-pharmacological therapies incl. psychotherapies.

These can be expensive.

As I try to say in the last message, services could easily find ways to spend money on psychotherapies if given enough money - they can keep trying different psychotherapies on individuals. While still not offering drug therapies because there is said not to be enough evidence for them. And not offering more detailed testing saying there is not enough money for them.

Barts are talking about recovery on their website now

Barts are talking about recovery - this is on their website:

Like Esther12, I don't remember these.

That sounds terrible Valentijn. What a crappy therapist. So sorry to hear about your OI too. That can be very disabling.
But RustyJ is wrong about you being a victim. Don't ever take that one on board. You've always got the choice to walk away (or wheel yourself away if you choose).

If your therapist is 'insisting' on anything she's not doing her job. A good therapist will help you find answers that are best for you.
And she needs to be able to recognise your needs, rather than making you cry!

However your doc is probably the one to help you with OI. Might be able to offer some meds if your neurologist isnt much good. You sound as if you're in a really difficult situation.
I wish you the best of luck with all of that. We don't need crummy health professionals on top of crummy health!

While it can be argued that the Cornwall service when it was headed by Prof. Pinching, gave more benefit than harm, I think the Barts service are in a very different ball park.

If one follows the link in my signature, one can see the comments they made on the draft NICE guidelines http://bit.ly/AcWj0V . They want to deny patients supports except for a very short period (when people starting the rehabilitation). They influenced the final guidance.

And this was on top of people already connected with the service being on the NICE guidelines committee: Ms Jessica Bavinton and Amanda ODonovan.

It is quite easy to imagine that those who wrote that, would say with regard to disability payments people should only get them for a while.
Indeed, I have heard cases where when assessing insurance cases, Peter White says people shouldn't get payments before doing a GET or CBT course. And indeed, at least one person who had already had done a course of both of them, was told that they should do another course of them before they could get a payment
http://forums.moneysavingexpert.com/showpost.php?p=31131087&postcount=1
http://forums.moneysavingexpert.com/showpost.php?p=31141399&postcount=9.

Also, in general, it is not difficult to people working in clinics can have a vested interest that therapies they can offer get recommended in future NICE guidelines.

Thank you Dolphin. I read all your links some time ago.


RE the Bart's website and 'recovery'. Hmmm. I can tell you that I have recovered my quality of life. I have recovered a sense of equilibrium and a sufficient mental energy that I can at some stage very soon contribute something again to my fellow human beings, my local community perhaps. This is no small thing.

You do like to rely on second hand information don't you! But I understand that to you, my posts are second hand too. Yet you much prefer these old posts picked from the internet to my up to date experience of a Barts clinic. Why is that?

RE this and the Nice Guidelines link.

My first-hand experience of Peter White is that is he is exactly as you would expect a doctor to be, professional, kind and supportive. I'm sure that's difficult for you to believe from the endless rumours that are spread on the internet. I find him to be a good doctor who makes referrals to competent people, rather than the crap neurologists and crap psychologists that poor Valentjin has to suffer. But then she/he is in the Netherlands.

Peter White works with a competent team of physios, psychs and OTs and other medics, to provide medication and support. GP's are kept up to date with what is going on so they can continue that support. And all is done with respect.


Patient advocates should provide current up to date information that patients can use to help them make the best choices about their health.