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

[taniaaust1]

I'm not suggesting any of that. I think we've established that the therapy I'm doing at Barts is very useful. In the end the 20 Billion pounds worth of cuts is going to deprive patients of the type of care I've received. And it is good care.

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.

 

[jace]

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:

Cognitive behaviour therapy (CBT)
CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue.

The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participants symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments.

These experiments consisted of establishing a baseline of activity and rest and a regular sleep pattern, and then making collaboratively planned gradual increases in both physical and mental activity. Furthermore, participants were helped to address social and emotional obstacles to improvement through problem-solving. Therapy manuals were based on manuals used in previous trials.1921 CBT was delivered mainly by clinical psychologists and nurse therapists (webappendix p 1).[1]

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

 

[RustyJ]

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.

Is this the end for the Belgian CFS reference centers?

by JOHAN on MARCH 15, 2012

Game over for the reference centers for CFS (chronic fatigue syndrome) in Belgium, where proponents of the biopsychosocial model held sway for 10 years.

By the end of this year the 5 centers situated in university hospitals in Leuven, Ghent, Antwerp, Louvain-La-Neuve, and Brussels will have to close their doors as decided by the National Institute for Health and Disability Insurance (NIHDI).

That was the big news on Friday, March 9 2012. Patients rejoiced. Until the Health Minister, Laurette Onkelinx, cast her veto against the closure on Tuesday, March 13 2012. Back to square one?

Why close the centers?

• Nothing but negative evaluations
  
  
• No results for the treatment with cognitive behavioral therapy and exercise therapy
  
  
• The centers did not bother to involve the first (GPs) or second line (specialists) in the treatment of the patients
  
  
• The centers refused to share their knowledge with general practitioners (GPs)
  
  
• The centers did not, or did so insufficiently, grasp their last chance to create consortia with associations of general practitioners.
  
  
• Multidisciplinary care was one of the key tasks for the CFS centers, but during the ten years of their existence they kept the knowledge within the walls of the CFS centers and stuck to cognitive behavioral therapy and exercise therapy.

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)

 

[Astrocyte]

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:

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.

 

[Astrocyte]

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'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.

 

[ukxmrv]

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.

 

[oceanblue]

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:

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 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

 

[Jenny]

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

 

[Esther12]

This forum is so anti psychology, you're unlikely to get a balanced view of whats going on in the UK.

I expect that the experiences some patients have had means that they are anti-psychiatry, whereas some may be pro-psychiatry. Personally, I think that it's best not to place too much value upon anecdotes.

Most of the criticism of the approach taken by White, Chalder, Crawley etc, is driven by pro-honesty, rather than anti-psychiatry.

It's difficult to have an interesting conversation about the merits of psychiatric approaches to CFS when those looking to defend White et al. often seem to hide behind claims of the 'fear of the stigma of mental health issues', or 'anti-psychiatry', rather than addressing the specific problems with the claims made by these researchers in their published work.

It is possible for psychiatrists to be quacks, just as it is possible in other areas of medicine. A willingness to view criticism of psychiatric quackery as just a manifestation of unreasonable views about mental health will make it much harder to root out these problems, and leave more patients to be affected by the misleading and dishonest claims which these researchers make.

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.

The problems of the past still need to be addressed, and those responsible for them should not be be left to go on taking money for the good they do CFS patients.

How are we meant to balance out and possible benefit from a more reasonable approach to CBT with the psychosocial harm of the misleading claims made by White et al. and the problems that their continued presence within the field does to patient's ability to trust their doctors, or believe that they will be treated fairly by the NHS? Such pragmatic calculations will always be performed in a way that serves the interests of those currently in positions of authority.

Better to be intolerant of quackery, and insist that those trying to make money from false claims about their treatment's recovery rates should be fired, regardless of whether they later decide that they should behave more reasonably. If these sorts of acts are allowed to go unpunished, then they are more likely to be repeated by others in the future.

Crawley's claims about a 30-40% recovery rate in PACE were utterly indefensible. Talk from Chalder and White of getting patients 'back to normal' was misleading, and almost certainly intentionally so. That should matter more than whether dishonesty is able to misappropriate funding to provide therapy that some patients find a bit helpful.

(Never mind the other social harm caused to on-going research funding and investment for CFS, the way patients are treated, etc. Promoting distorted views of reality is always harmful in a wide range of ways, particularly when it's done by those in positions of power and authority - I am just repeating myself now, but these are important points that I don't think are being meaningfully addressed).

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

I just read back through this thread, and thought that I'd probably given more flak to Astrcyte than anyone else - but I also didn't think I'd responded in a way which would have shut down the discussion, or made others feel that they should not post their views.

I've posted positively about CBT in the past - indeed, I remember a few threads about possible benefits of different types of CBT. I'm also still open to the possibility that my own condition is entirely the result of cognitive and behavioural problems, and had quite a few heated discussions about that on this form - (and this does seem less likely to me now that I have read more of the research around CFS).

However that's quite different from defending Crawley's claims about recovery rates in pragmatic and political terms - and that is something that I am strongly opposed to. I think it's this misplaced pragmatism which people (certainly I) have been disagreeing with, rather than a positive anecdote about CBT.

 

[floydguy]

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.

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.

 

[RustyJ]

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.

 

[Marco]

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.

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.

 

[Firestormm]

Good comment Marco.

Couple of points if I may? The approval of Fingolimod will not see and end to the use of CBT for MS and neither (I don't believe) would the approval of Rituximab for ME do likewise.

Personally, I believe (research and PACE excluded) based on my own personal experience, that CBT is useful for coming to terms with life with a chronic illness. It helps - if you need it. It isn't 'right' for everyone all of the time.

I have had a mixed experience with CBT over my, what, 13 years. The last experience was good. She was a person I 'gelled' with I suppose and that's important.

Most recent comment about that is here: http://forums.phoenixrising.me/show...treatment-without-a-cause&p=247065#post247065

In the absence of a drug that does indeed 'cure' then even the drugs mentioned will only improve ones quality of life. Fingolimod will only be offered to a sub-set (if you like) of people with MS, and I suspect it will be a similar thing with Rituximab (if that ever comes to pass) and any of the anti-viral's pending approval/research over in the States.

I do know of friends who have received CBT straight out of the manuals referred to here and elsewhere. I am thinking of one who's practitioner used and quoted from the FINE trial. Now they - collectively - found that the language, prescribed interventions, the use of the whole 'this will cure you' or 'return you to normal' or 'you must be doing something wrong if you are feeling worse' - was too much. And they left.

And I don't blame them. I personally haven't encountered this approach myself. I have not encountered disbelief in my primary diagnoses. I have encountered different 'styles' of CBT application. Most recently I was seeing a practitioner on a one-to-one basis for I think 13 weeks.

That was very unusual. In the past I have been 'lucky' to get six sessions. When I have requested or been referred it hasn't actually been a decision based on the purported routine of: 'Have CFS/ME? Off you go to CBT!' More often than not a referral is never even considered. I generally manage quite well especially in the last few years.

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

Last time I went to my specialist - after Xmas 2011 - I asked for a referral to the clinical psychologist attached to the CFS/ME Service. This time is wasn't because I felt I needed it but because I wanted to see if there was a difference in approach for someone working solely with CFS/ME patients.

Maybe there is? I don't know (will let you know about my experience after I have been). maybe it depends on the practitioner even then? I mean we seem to forget sometimes that they - like clinicians - do have experience in the main and not all of them read verbatim from said manuals.

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'

Very dismissive. Not of me. Not of ME. But there attitude was appalling. Too much filling in questionnaires and not enough personalisation. Indeed one such person encouraged me to consider 'coming off all your medications'!! Astounding. But I was on a 'bounce' at the time and seriously considered it - until my Consultant told me to stop being a muppet!!

So patient experiences count. And a patient can always walk (in theory) as I have and tell the practitioner 'No' or ask for another. But an objective evaluation of the effectiveness of a given therapy is so important as well.

I have contributed to Johan's blog and I think it provokes some interesting thoughts: http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers/ and it was great to hear the news from Dr Enlander.

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.

What research? Define research that would benefit patients more than the closure of their clinics. Research that would deliver fast results. Results that would be conclusive and accepted and result in drugs (presumably).

And what about those patients who DO find their clinics helpful and supportive, even vital? Not everyone in a specialist service is a psychologist you know?

What of the clinicians, the consultants, the occupational therapists, and yes even the psychologists. Are we really tarring the whole lot with the same brush as applied to e.g. White and Wesley? Despite what other patients - the majority - might think?

In an independent patient assessment of neurological healthcare in my country of Cornwall - based on the National Service Framework for Long Term Neurological Conditions published last year.

The ONLY service to feature as a 'good' multidisciplinary approach was the CFS/ME Service. Of course that was before Professor Pinching retired - and I would suggest that seeing as the Service has now closed (albeit temporarily) that same evaluation would not result in the same rating.

But nevertheless that Service provision is still highly valued if not seen as vital by the patients in my community. Now you could - and I have - argue that it reflects the poor provision for other conditions. You could argue quite a lot. But patients who used the service are appalled by the decision of the Hospital Trust to close the service and of the desperate state into which they had let it decline.

485 patients are awaiting follow-up appointment. 60 new referrals awaiting diagnosis. One GP was saying very recently that his patient had been waiting for 15 months!! And the Hospital Trust - rather than replace the consultant - want to drop the lot back onto the GP's!! No. We need specialists. We need consultants to lead the services. And practitioners of complementary therapies to help as and when needed - not to lead - but to assist.

I was appalled by the PACE trial and more so perhaps by the bloody marketing/hatchet job that followed. Talk about trying to justify such a colossal waste of money!! Of course the results of that particular bit of research did not justify the money at all or indeed prove to be something that even NICE jumped on the back of. Nothing changed as a result of PACE and I hope to the Gods nothing does when NICE next review their Guidelines in 2013 or 2014.

I hope desperately that research will lead to better drugs - any drugs - that allow for the better management of our condition. That, like Fingolimod improve quality of life if only for sub-sets of those with ME. But I don't believe any such developments - other than a cure - will see the end of CBT.

This is a really cool conversation/thread. Thanks to Astrocyte and everyone else. I am a bit shattered now so will leave it there.

 

[Valentijn]

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.

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.

 

[Dolphin]

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:

Mindfulness-Based Cognitive Therapy for People with Chronic Fatigue Syndrome Still Experiencing Excessive Fatigue after Cognitive Behaviour Therapy: A Pilot Randomized Study.
Clin Psychol Psychother. 2011 Oct 9. doi: 10.1002/cpp.793. [Epub ahead of print]
Rimes KA, Wingrove J.
http://www.ncbi.nlm.nih.gov/pubmed/21983916

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

 

[Dolphin]

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.

 

[Dolphin]

Barts are talking about recovery on their website now

I think the way PACE has been overplayed has two aspects to it. And these are entirely my own views. They underestimated what the media would do with PACE by a long way and they underestimated the role new media would play in blowing it out of proportion. I saw a TV interview of Mike Sharpe post- PACE and he concluded by saying something like, lets be clear these are only moderate results and..' and he went onto say something else that moderated the hard line the interviewer was taking. THat moderation was cut the next time I saw the same clip to make his views sound extreme. Editors want extremes because they make better stories. They dont care about the impact that has on the patients.

And then the spin in the journals which I know is your big grumble. This is endemic in science not just CFS science. As you have said before with Esther Crawleys 30-40% recovery paper was aimed at NHS commissioning and keeping her clinic open. Not at patients. When interviewed she's the only one that describes the actual experience of CFSers in concrete terms that Jo Public can understand. And she talks of pacing not recovery.

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

What outcomes can I expect from the CFS/ME service?

We have found that three-quarters of our patients with CFS/ME significantly improve or recover with treatment in our clinic. Research has suggested that a quarter recover their health and a further half significantly improve. For some people recovery may not necessarily mean a return to their previous lifestyle, if this contributed to them becoming ill in the first place.

http://bartscfs.eastlondon.nhs.uk/our_approach/

If you read some of Peter Whites early responses post PACE he talked about massive cuts that are ocurring in the NHS.

Like Esther12, I don't remember these.

 

[Astrocyte]

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.

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!

 

[Dolphin]

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.

 

[Astrocyte]

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.