Discussion in 'General ME/CFS News' started by Firestormm, Nov 7, 2013.
Have been a bit tied up, so am late in posting this one:
Wasn't Wessely one of the people hyping this?
He wrote some report that seemed to make some rather bold claims about the benefits of more spending on talking therapies, and I thought that was IAPT stuff (although after IAPT had been introduced). I thought it was with Layard and Gerada too, but cannot find the one I remembered now, only one with more co-authors. (Actually, I think I'm remembering this related letter: https://www.politicshome.com/uk/article/61114/privacy_policy.html )
There was a really effective campaign in the 90s to portray scepticism of the medicalisation of people's cognitions and claims of expertise from therapists, as indicative of a bigoted stigmatisation of the mentally ill, and I think that I rather fell for it. The more I've since read about talking therapies and their affect upon people, the more I think that a lot of them are just a way of making money from quackery, hiding behind claims of compassion.
Psychs trying to line their own pockets but they cant hide their failures for too long.
I think what they are saying - and I haven't read the papers - is that the service (IAPT) is not living up to expectations; not that counselling is 'bad'.
If recovery from other conditions is anything like "recovery" defined in PACE for CFS, then I doubt the recovery figures are remotely accurate. There is no question there needs to be better support for mental health, that seems to be a problem everywhere. Nobody has quite figured out how to do it well though.
One thing I would like to see, because it can be a basis for objective comparison, is the use of objective markers such as days worked, benefits (including private and insurance) received, medical visits or prescriptions required etc. Its not that this is everything, but at least it provides a benchmark. Only then are subjective quality of life issues able to be put in context.
I would also want to know what people recover from. Again this has only limited usefulness as psychiatric diagnoses are not soundly supported by science, but its at least a place to start. It may turn out that one diagnosis benefits greatly from sustained early intervention, but that another does not.
I don't think you can ever 'standardise' a response to/from psychological therapy even to the extent of chronic illness management and/or acceptance of a medical condition e.g. cancer.
I am very tired, but I'll try and explain...
PACE set out to provide in a manual an approach to delivering something - essentially counselling - an approach to living with a condition that was affecting a person's health.
Similar approaches - also termed CBT - have been applied to a whole host of medical conditions and to 'daily life' stresses and strains.
A manual approach may well be necessary for a 'research study' where it is desired to have some form of control, to measure levels at entrance, during the treatment, and post-treatment.
But, and as I have always said, this cannot be applied to individual patient delivery of counselling even to the extent that CBT is tailoured to ME/CFS or indeed Cancer etc.
We are all different. Counsellors/psychologists are all different. A 'manualised' approach to delivery does not work in practice.
The results - such as they are and given that better and more objective measures are needed and are being demanded - from research studies are not representative of the delivery in 'real life'.
Once upon a time in a land far, far away, some time during the Golden Age of medicine, one might have believed a GP would engage with his/her patient and 'listen'.
These days, patients are increasingly finding - whether they need to learn to live with chronic illness or need to learn to better cope with 'life' - they can't even turn to their family or friends: and GPs claim not to have the time.
Enter the psychologists and counsellors...
How do you measure 'helpfulness'? If someone 'feels better' for having talked, for having had their muddled thoughts and anxieties set in some better order, of having their irrational fears discussed etc. how do you measure that?
Is it even fair to consider measuring the outcome of psychological interventions in terms of e.g. return to work, less reliance on benefits: when for an illness that does have a drug which delivers symptom management if not disease management, such outcomes are not used?
I don't know.
Anyway, the article above was - as I said - referring to a specific service and not I think counselling in general. I'm not familiar with this IAPT - I don't believe it applies to the NHS delivery of ME Services and the CBT aspect of them.
The article also talks about patients only attending one session i.e. not a complete course. Sometimes this might be enough - though I doubt it - but it's hardly fair to judge recovery on those who don't complete the course.
Then again - it would be more fruitful to discover why people don't complete courses and that's something that could be useful - has been useful - in respect of CBT for ME patients.
I am of course struck by the similarity of recovery rates in the article with those we have seen erroneously reported since/before PACE was published, as well as the 22% figure which - coincidentally - equates with @Bob 's work I seem to recall.
But I think the figures are only coincidental and can't really be compared to PACE and ME.
The predominance of psychological therapy in the NHS - and elsewhere - is fascinating. The whole drive to better help people 'learn to live with' a chronic illness.
That the measures used to judge effectiveness are inadequate is being increasingly recognised I think. Personally, I don't have any answers as to how you might better measure outcomes more effectively without there being an element of subjectivity.
Objective outcomes are not straightforward either.
A few comments on this having skimmed both papers on 'recovery rates' and costs.
I would have thought 2 recovery rates matter:
1. Based on referrals - since this is the overall effectiveness of the process for GPs and patients = 12%
2. Based on those starting treatment - since this gives a better measure of how effective the therapy itself is when applied (22%)
- note in a clinical trial patients have not only been referred but also assessed and agree to take part in the specific therapy, so this is a closer benchmark to that used in trials.
Note that the recovery definition is not based on living a normal life, working full-time etc. It would be possible for someone to move one small step from just inside the 'caseness' definition to just outside and hence to be 'moving to recovery'. Which might sound familiar to PACE afficionados. Crucially, there is no data on how 'ill' the patients were when they started the course - maybe they were all severely ill, maybe they were all borderline cases. So the recovery definiton is ill-defined and probably rather weak.
Which makes 22% of those starting therapy 'moving to recovery' seem even less impressive.
Another 'Key Performance Indicator' is:
However there was no data on this for the period analysed.
Note the emphasis on moving OFF benefits, not INTO work. There was, apparently, some data collected in the pilot phase of the governments work and this was used to justify the approach on cost-benefit.
However, this pilot work (CBT assessment) coincided with the pilot work for the much-criticised ESA 'work assessment test', and the new paper suggests these assessments were deeply flawed. In the pilot phase of ESA, 2/3 were assessed as 'fit for work', after some improvements that has now improved to roughly 1/3, with 2/3 getting benefit. (Improvement: more people now getting ESA than failing test).
The cost per therapy was approximately 3x higher than that given by the Dept Health estimates, and was very similar to the figure from another independent evaluation of DoH figures. There were some weaknesses in the independent analyses esp that they used budgeted figures and didn't have actual spend levels. But it seems highly unlikely that would explain the massive discrepancy. The DoH also don't seem to have supplied updated actual costs, only their original 'estimates'.
So it seems costs are much higher than claimed. While recovery rates are lower, and it is likely that the rates for those coming off benefit being achieved now by the CBT programme are well below those achieved in the pilot phase that was used to justify the cost-effectiveness of this whole approach.
According to wikipedia, IAPT is a UK NHS program which only uses CBT.
Nobody is arguing that you can completely characterize responses to a psychological/psychiatric therapy. However there seems to be a total acceptance of vague waffle. The IAPT uses their own standardized recovery procedure, using methods at least briefly mentioned here: http://www.ncbi.nlm.nih.gov/pubmed/23872702
So they already standardize it, just do so without any objective validity. This broad acceptance of subjective evidence as scientific needs to be put under major scrutiny. It may or may not be the best they can do, but its not scientific. Yet they like to speak with certainty, authority and the authority of science. The reality is its not certain, its not coming from soundly based authority, and its not science.
Objective outcome measures are needed wherever its possible to get them.
I have some doubts about "recovery" and "moving to recovery". Some of the published papers use terms like "recovery" and "reliably recovered". Reliable how? I am looking into this.
What does this really tell us?
This document outlines the coalition's plan and its justifications. I have not fully read it yet. Two things do stand out though. First, they rely on claims that CBT is at least as good or better than medication for dealing with depression and anxiety. Second, a primary motivator is that a third of all new benefits are due to mental health issues, though I am not sure what scope that actually has - so far I am not clear on which benefits they are talking about.
The whole notion that CBT even works is currently being hotly debated. This is coming from within psychiatry and psychology. They do not use first rate scientific methodology, and the bedrock of that, sound diagnosis, does not even exist.
The more I look into these issues, the more disturbing it becomes. While I think some of Szatz's arguments are nonsense, its looking more and more to me that his basic claim, that psychiatry is the science of lies, is sound. I have years more research to do on this, but I think the faster the scientific world wakes up and sees what psychiatry is passing off as science the better.
Unfortunately I do not have the resources to really look at psychiatry as a whole. Psychogenic medicine is my focus. However the increasing use of CBT in psychogenic medicine does mean I need to be looking at CBT claims to see if they are sound. Those claims are not looking good.
"moving to recovery", "moving towards recovery", "progressing towards recovery", "starting the process of recovery".
All of these terms should be banned from scientific literature, as they are meaningless and purely intended to massage figures and to mislead. What these terms actually mean, at best, is 'improvement', so why don't they use the word 'improvement'? It's because shorthand for "moving to recovery" etc., is 'recovery'. And the authors know that 'recovery' will often (lazily, unwittingly, or ignorantly) be used as shorthand instead of the full terminology, and a full explanation of the definition of 'moving to recovery' will rarely be given in discussions, thus promoting the results in exceptionally flattering light.
Apart from using the term 'moving to recovery', notice the other weasel words and manipulation used to defend the program...
This purposely evades the accusation which was that each 'session' was costing more than the original estimate.
But if many patients are simply receiving one session of advice, as their entire treatment program, then this will drastically bring down the average cost per person treated, if these patients are included in their costs stats.
If more patients are being given single advice sessions than originally estimated, then this would improve their overall outcome figures and it could lower the costs per patient treated.
Of course I wouldn't cynically suggest that this would be done on purpose, because I have utmost faith in the people who run psychological programs.
(Actually, I haven't looked up exactly which figures are included in costs, so I am making the assumption that they include single-session treatments in the costs per patient. But perhaps they're not including the costs for those patients who only receive one session.)
So, patients are only being given single sessions of advice: 'in many cases entirely appropriately.'
Perhaps the patients whom they think will not easily respond to treatment (difficult cases) are being filtered out, sometimes 'entirely appropriately'.
According to the way they promote their stats, this would have the effect of making the general success rates look better, and perhaps it would lower the costs per person.
Unfortunately, this would mean that some patients are being dismissed from the service, not always 'entirely appropriately'.
But of course I'm not cynical enough to believe that any of this could actually happen purely to massage the stats.
This is exactly what I have been saying about many terms they use. They redefine, misuse it, then rely on others to use or interpret what they are saying in the wrong way. Recovery is one of the most loaded words they use. I am planning a whole section on that word in my book.
Other words we got from the PACE trial include "normal" which most closely resembles the definition of abnormal in the way they use it. Then everybody misinterprets it, and they ride on the propaganda wave that creates.
"Evidence-based" is another. There is very little that is evidence based that is used in CBT research. Its hypothesis base, and they can trot out dubious statistics to "prove" they are right, and even use inappropriate statistical measures. How come the statisticians are not screaming something is wrong?
There has been a movement to convert Evidence Based Medicine to a form of management, suitable for government and insurance companies. Evidence Based Management is not science, its about justification of economic and political decisions.
It is way too soon for me to be writing about this stuff, but given the IOM debacle I am glad I started looking into this nearly two years ago now. There is a steep learning curve, and oodles of information, but most of the problems have been identified and written about in the psychological and medical literature, by psychologists, psychiatrists and medical doctors, they are just being ignored.
Much of what they say in supporting rhetoric has no evidence base either. Its ranging from unsubstantiated opinion to unproven hypothesis.
Interesting research - not because it has anyhting to offer for those of us with M.E/CFS but because i am interested generally in 'talking therapies'. I started training as a counsellor some years ago, but nver completed due to family and health demands, however my hhusband is a practising psychotherapeutic counsellor, taking an integrative approach, meaning he is trained across the board in the different 'approaches' from person centred counselling to Gestalt to CBT to psychodynamics.
This NHS 'system' for encouraging talking therapies is omething we have discussed frequently and is often discussed within the counselling and psychotherapy profession. As far as we can tell the NHS is offering CBT only, from a trained 'practitioner' the 'practitioner does not have to be a qulaified counsellor or psychotherapist, they need only have completed a training course. Patients are then only offered 6 sessions - with a further 6 offered if you beg. That is only at the most 12 weeks of being taught what CBT is, possibly by a nurse practitioner who has no formal qualification or experience in counselling.
I have infact been a patient in this system - i self reffered for anxiety and agoraphobia. I was given an appointment with a nurse. I complained and said i wanted to see a counsellor. I was then passed on to a woman who was neither a nurse nor a counsellor but a university lecturer in mental health at a local university. I spent 6 sessions with her, she was very nice and is the one that said i could have M.E and told me about Dr Myhill. But i am quite clear that what we did was not therapy or even talking. She showed me WHAT CBT was. She didnt DO CBT with me or on me but bascially gave me a 6 week course in CBT, such as i had already completed years before at college and then declared me ready to go out in the world. Needless to say my agoraphobia was not evn slightly helped.
A year later i appraoched my GP again and said my agoraphobia was still active and that i knew it was very treatable and i would like to have some counselling. I was finally referred to an counsellor who worked through the NHS who had no idea about agoraphobia, told me CFS was curable by a mna named Amir in south Wales (LP) told me my life 'wasnt that bad' and then wanted me to do trauma therapy by re living my traumas - it was a complelet disaster and i left after 4 sessions.
Back to CBT. The govt is obsessed with CBT becasue they believe it can be 'measured' because it contains the notion of 'goal setting' I do believe CBT can help some people in some situations (if done correctly) but it can in no way be seen as a panacea for all mental health issues as it is by the Govt and health service.
I cannot find the research currently - brain is finding this hard enough - but i do remember clearly that in the past there was good work done to suggest that talking therapies helped, in the long run with depression and other mental health problems as much as drug therapies and that the efficacy of drug therapies for mental health problems has been wildy exaggerated.
Talking therapies i.e counselling with a properly qualified therapist, who you have a rapport with, with no fixed time limit (some people may need months of help) are i believ very beneficial. But as to 'recovered' and 'recovery' most therapists i know would hotly debate what that even means or if it is possible. I think when i see a therpaist or when my husband has a client we are aiming to be heard and listened to and validated in our experinces and that can lead to breakthroughs which may help people to cope better or make different decisions, or just give them some hope that they are not alone.
I believe it was the father of person centred counselling Carl Rogers who said something along the lines of
'counselling is not there to make you feel BETTER
counselling is there to make you FEEL better '
sorry i havent read the whole thread as there is too much text to take in and reply.
Thanks Justy for providing your own experiences.
I do think it is difficult to, for example, have someone referred to an ME specialist service, and be referred to a clinical psychologist for CBT for ME, when that person as an individual may have - additionally or wholly - greater problems with anxiety, depression, or something else: than with ME.
That is to say, again, we are all different, and a referral to a specialist via an ME Service, does not always mean the issue can be laid at the door of ME.
A lot of people have problems living with a chronic illness. 'CBT' represents in my view only part of what is delivered by way of skill by a professional - it is a tool in their kit and not the only tool that is deployed.
'CBT' is something that attempted to encapsulate several skills in an 'approach' but when delivered on an individual basis, a professional will often do more, or less, for that individual.
What I mean is - again - you can't shove 'CBT' in a manual and then role out that manual to each and every person: we are all different and some of our problems are not ME specific but might all be encapsulated in 'coping' I suppose.
I have spoken at length with various people about the means by which groups such as BACME collect 'outcome data' from ME Services, and this 'goal setting' is indeed - according to my own specialists at the ME Service in Cornwall - the ONLY means now by which BACME attempt to measure effective delivery.
It is wrong and was not always this way. Before, a patient's progress was more detailed in it's explanation and when reported back to BACME. Now, the e.g. clinical psychologist is only asked to report on these 'goals' and how the patient feels he/she has performed in relation to them.
They are wholly irrelevant to the 'treatment' delivered in my view. And wholly irrelevant to the patient's level of physical function for example. They can be important at an individual level, but not as a measure of the treatment's efficacy.
To give a personal example or two:
Most recently - last year - when referred to my clinical psychologist - who is part of the ME Service: we dealt with my issues pertaining to a lost relationship that had occurred back in 2001, but was still a personal regret, something I hadn't dealt with, and was a recurring dream/nightmare.
When I attended the group ME Management Course, our personal goals were flexible. They changed as the course progressed, and as we - as patients - determined their suitability to our changing circumstances and priorities. Again, as an example, at one point it was my goal (for want of something to have) to try and eat breakfast regularly every day at roughly the same time each day.
Another - and my final goal - was to better organise my day so that I could manage to achieve 2 hours of 'work' each day of the working week. Something I feel I have achieved - but which I was well on the way to doing (if not already doing) before the course.
The course did help though. In that it helped with confidence. I felt as a result of the course - and from my individual home visits - that I was managing my illness as best I could. That I had made sufficient adjustments to my life to better cater for my medical condition etc.
Now, measure that. I have been holding conversations with the specialists who provide the treatment in Cornwall, and will continue to do so: there is a clear need to improve outcome reporting, and the way in which progress is measured: but I just don't know how this might be achieved.
@justy, your experiences of the NHS's general psychological services are similar to my understanding of them.
The staff are trained but not highly trained, and they offer instructions for typical CBT approaches that can be found in any CBT self-help book.
Patients are given typical CBT hand-outs (also to be found in any CBT self-help book) to work through at home.
I think they typically offer 6 to 10 sessions.
Obviously this approach might be helpful for some, but my guess is that it is more helpful for people with mild, short-term, less complex problems rather than severe, long-term or complex problems.
The potential for harm from psychotherapy is also a relevant issue and was discussed on the thread here:
[edit - sorry about the length of this - probably worth skipping tbh, a bit OT]
"PACE set out to provide in a manual an approach to delivering something - essentially counselling - an approach to living with a condition that was affecting a person's health."
They seem to be keen to suggest it's rather more than that:
These are meant to be medical interventions which reverse people's health problems, and that is how they are being sold. Also, I'm uncomfortable with the notion that these sorts of trials can be used to justify talking therapies, but then in the 'real world' patients are told that they'll be given different and untested interventions. Imagine is pharmaceutical companies decided to behave in this way? How can patients be informed of the likely risks and benefits?
If talking therapies are just someone being paid to act nice to patients (which seems to be the 'effective' part of these treatments anyway), then they need to be honest about this, and stop pretending that they are anything more, or that the advice being given represents any sort of genuine expertise. It would also seem to indicate that most therapists are rather over-paid. Also, while some patients may want this, many have no interest in it, and only put their time and effort into psychosocial rehabilitative approaches because of the specific and exaggerated claims made about recovery - it is abusive to manipulate patients in this way. I have no interest in having other people earn money for helping me cope with my illness... give the cash to me, and I'll use it better myself.
Just because people are suffering from chronic health problems is no reason to assume that they want to have, or would benefit from, people being paid to act nicely to them, or any other talking therapy, however much those making money from acting nicely to patients may like to pretend it always offers great value for money.
re symptom management drugs and objective outcomes: Yeah, but drugs need to be assessed under double-blind conditions, otherwise it's just quackery. Homeopathy can be shown to be effective in the sorts of trials used to justify claims of efficacy for a lot of talking therapies.
Some people like having someone who is paid to chat to them, some do not. Some people like pizza, some do not. I'm not sure that these things should be medicalised. Increasingly, I think that it would be better for society to provide those in difficult positions with the resources that would let them choose whether they want to get more pizza, or spend time with paid chatters, rather than pretending that a paid chat is a more legitimate medical intervention then letting patients have a nice time in whatever other way they decide is best for them.
Given the level of quackery to be found within the NHS's talking therapies, and the near universal tolerance of it from those working in this area, I think that they should only be applied cautiously, and after explicitly warning patients that their therapist is likely to make claims which are unsupported by the evidence, and should not be trusted. Or, we need to do much more to make sure that those therapists who do make misleading claims to patients are removed from medical practice (although I do realise how unlikely it is that anything like this will ever happen).
The more I read about talking therapies, the more I understand people viewing therapists as secular clergy. Let's try to avoid the faith which led to decades (centuries?) of child abuse. There is no reason to believe that those earning their money from talking therapies are any more virtuous than those earning their money from banking or building, and we should be sceptical of all of their claims of expertise.
(This could be taken as being more critical of talking therapies than I mean it to be - some people do get on with this approach and find it really helpful, some people don't have social networks that the can turn to for the sort of support talking therapies can provide, some may become caught up in distortions of thought amenable to talking therapies... some people want access to a secular clergy! But some people really hate it, I think that this is down to personal preference, rather than those who dislike talking therapies and the way they are promoted being unreasonable about psychiatry, or afraid of the stigma of mental health problems, or any of the other excuses that are used to distract attention from the fact that talking therapies are just pretty rubbish at actually helping people).
That's the sort of thing which can sound like a conspiracy theory, but that I think is actually pretty much right (or at least a number of important people are trying to push things that way in the UK right now). Allowing one group of people to claim to be experts in how others should think and behave is an innately political act, and we should not assume that it is done with any more concern for justice or equality than the development of new banking regulations.
@Esther12, EBManagement is a field of study in its own right:
I do however substantially agree with your analysis.
The PACE trial and associated publications, including opinion pieces, do not just suggest its counseling to improve quality of life. They actually claim its an evidence based approach leading to recovery, with unproven claims at up to a sixty percent recovery rate. These claims are rarely challenged. If what they claim really is recovery, then my ability to do two finger pushups with my hand (not my body, just move my hand up and down) makes me an Olympic athlete.
Now I have no problem with counseling as such. People going through rough events in life can do with a little counseling, someone who can listen and think without being stuck in the problem, and so who can give some perspective to a person who is deeply mired in some issue.
CBT for much of its research is different. Many researchers and practitioners make bold claims that go far beyond the evidence base. This is now being widely questioned.
Much, maybe most, and possibly even all of the CBT research is not science. It does not use appropriate scientific methodologies. To a large extent this is because they are working in a field in which the brain and its operation is integral. The brain is the most complex physical structure we have ever studied. The layers of complexity are staggering, and its only just now being dimly understood as new technologies are developed, but even that is not enough as these technologies are still too unevolved to really tell us what is going on.
Adding to this, brains are only hardwired in the general structure and some deep processes. Higher functions are substantially modifiable. Brains evolve in an environment that involves other people, in other words in a culture. This adds a further level of complexity to the already super complex brain. It may be that really understanding the brain is actually beyond the scope of science.
Yet there is a problem. Psychiatry, and especially psychogenic medicine, has tried hard to make itself look scientific. They even claim to be scientific. They make the same mistake as economists. They take a highly complex field, attempt to simplify it, develop complicated unproven and unprovable hypotheses and models based on the simplification, and then try to treat that simplification as reality. Here is a statement I wish most in psychiatry and economics could get their mind around, the most famous statement in systems theory: the map is not the territory.
So hard bio-psychiatry might well benefit from a scientific stance, but psycho-psychiatry wont. Its not science, and it probably never will be.
Now the (to me) misnamed Social Sciences do give us some valuable lessons. They have embraced uncertainty, systems views, and the social embedding of problems. Its not science, but that does not stop it from evolving as a rigorous academic discipline, fully aware of its own limitations. Psychiatry for the most part ignores these lessons, and takes itself far too seriously.
So the biopsychosocial model has an entire discipline it can draw on for further development. Instead they pretend what they do is science. Its not. There is widespread and undue attitudes to present BPS as both science and medicine. There is some basis for the claim it should be part of medicine, but that only has validity if first they recognize that much of medicine is not scientific. Yet the push in medicine is not only to claim its scientific, and has authority, but that it can be put on a scientific basis by embracing evidence-based decisions.
Evidence-based decisions however range from science, to quasi-science, to non-science. Those lines not only have been blurred, but there are vested interests (not conspiracies) to extend that blurring.
Getting back to EBManagement, its about making decisions, usually has a political or economic focus, and is not aimed specifically at anything altruistic.
You can also try a Google Site Search
Separate names with a comma.