ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

[Valentijn]

It's debatable whether it's easier to shut down altogether something that's rotten in its core and start from scratch or try to transform these psychology-driven "rehabilitative" services into ones that accept you can't "activity manage" your way out of an organic illness.

I think there's an institutionalized attitude which would remain. Even if some new people come on board, the old experienced "experts" still around are going to be seen as an authority. And then their nasty attitude just gets passed on to the new clinicians, unless they're already very well-informed regarding biological research.

I really think they need to go. A fresh start gets a complete break from the old attitudes.

 

[Sidereal]

Organisational transformations are hard but when I've been in organisations that have had large transformations I have been quite surprised by how changing one or two key individuals (normally those in charge) can change culture and attitudes. People cling to things they feel have worked in the past but even then attitudes change. For an ME service this would suggest we need people with good ideas and the necessary people skills to transform a service. But the other alternative is to have to find new funding and locations for such services which I imaging will be very difficult without a strong political will.

With respect, I fully accept a change in organisational culture is possible, though difficult, in settings like business etc. But I trained in psychology and as you can imagine have had countless Kafkaesque conversations with my former BPS brainwashed colleagues which make me a firm believer in the fact that psychology simply cannot play any role in our treatment because the kind of person who becomes a psychologist, by definition, believes in the lack of importance of biological factors and supremacy of psychosocial factors. I have been told by such people that all diseases are biopsychosocial and that CBT will soon become the treatment of choice for psychosis. Etc. Even if I were to somehow recover from ME, I would have to find something else to do now that I know what I know.

 

[Cheshire]

It's debatable whether it's easier to shut down altogether something that's rotten in its core and start from scratch or try to transform these psychology-driven "rehabilitative" services into ones that accept you can't "activity manage" your way out of an organic illness.

In France, a few years ago, psychoanalysis was the main treatment for autism (Yes, with all the "refrigerator mother stuff", crazy really...). The parents of autistic kids have been lobbying over and over to get the situation changed. Officially now, the government does not support anymore psychoanalysis as the main approach, but a report strongly condemning it has been amended, because of the pressure of the psychoanalysts.


From what I get, concretely, psychoanalysts are still leading the majority of the centers dedicated to autistic children. Some of them have brought elements of "multidisciplinary approach". Many haven't changed anything, they just stopped oppenly accusing the mothers of everything, because they saw it wasn't very popular.

 

[lansbergen]

The fact that no bucket is perfect is not relevant, it has to hold water. The fact that various august organisations have commented on the positive aspects of the trial design intrigues me because it makes clear the surprising fact that people do not necessarily see the basic point (nature of treatment+unblinding+subjective endpoint) and that water is pouring out of the bottom.

How can the blinkers be removed?

 

[Sidereal]

In France, a few years ago, psychoanalysis was the main treatment for autism (Yes, with all the "refrigerator mother stuff", crazy really...). The parents of autistic kids have been lobbying over and over to get the situation changed. Officially now, the government does not support anymore psychoanalysis as the main approach, but a report strongly condemning it has been amended, because of the pressure of the psychoanalysts.


From what I get, concretely, psychoanalysts are still leading the majority of the centers dedicated to autistic children. Some of them have brought elements of "multidisciplinary approach". Many haven't change anything, they just stopped oppenly accusing the mothers of everything, because they saw it wasn't very popular.

Exactly, and the same thing would happen in any "multidisciplinary" service for ME/CFS, most would still be headed by a consultant psychiatrist or someone like this. The situation in France is even more horrific than in Anglo-Saxon societies because of historical and cultural factors in France that have led to massive entrenchment of psychoanalysis there unlike here where biological psychiatry displaced psychoanalysis and reduced it to mostly fringe lunacy status in recent decades. What has replaced psychoanalysis is not good and is mostly stupid neuro-babble about neurotransmitters and "psychoneuroimmunology" and other crap of this nature but it's better than the outright dangerous abusive cult-like quackery of psychoanalysis.

 

[Jonathan Edwards]

I agree but I think we need specialist services just not the ones that currently seem to exist.

From my own perspective this makes sense. Where I failed my patients with fatiguing illnesses was in being completely ignorant of all the stuff I have learnt since being on PR. If I had known about the prognosis, the theories of causation, the symptomatic treatment ideas etc etc I would have served my patients much better. A GP is not going to be any use unless they specialise in the field. If patients should not have to go to charities or the internet for information then there have to be people who can provide the information because they have studied it. The irony is that I did not refer patients on to CFS services because I had reason to think they would be put into a gobbledygook sausage machine. The one thing I am fairly sure of in the current climate is that if anything is shut down nothing will open up in its place.

 

[Jonathan Edwards]

How can the blinkers be removed?

Here, most of them are reading this or have friends who are.

 

[charles shepherd]

Did anyone mention dietary interventions? Many of us have found these self-selected interventions to improve symptoms enormously, especially when combined with stringent pacing, often aided by the use of heart rate monitors.

We don't necessarily expect to have a cure tomorrow, but many patients' lives can be greatly enhanced by improvements with regard to sleep, anxiety, skin conditions, sinus congestion, weight normalisation, improved gut function, improved muscle strength, etc. (I haven't finished reading the thread yet but am posting this before I forget!).

There wasn't any real discussion on diet and dietary intervention. There was a short discussion on the role of trace elements, vitamins, supplements (magnesium in particular) following on from two questions at the end - one of which came from someone who I think was some form of nutritional therapist who wanted to see research into the efficacy of these type of interventions.

 

[A.B.]

I think it's less stressful for patients if they're told the sober truth (that medicine doesn't understand their condition and that there is no effective treatment). It's not easy to accept but less dangerous than the alternative.

The alternative is pretending that CFS is mostly understood and readily treatable, which sets the patient up for inevitable failure, possible worsening, and abusive behaviour by people who think the patient is just not trying hard enough. In my opinion patients in this scenario are much more at risk for suicide since they will feel isolated and like a failure.

 

[Sasha]

Extremely cheering to come to the forum this morning and read all this! Very positive. Thank you, @charles shepherd and @Jonathan Edwards, for telling us about what happened.

Have I missed something about how big the audience was and how widely the discussion from meeting will be disseminated (if at all) to RSM members and others?

 

[user9876]

With respect, I fully accept a change in organisational culture is possible, though difficult, in settings like business etc. But I trained in psychology and as you can imagine have had countless Kafkaesque conversations with my former BPS brainwashed colleagues which make me a firm believer in the fact that psychology simply cannot play any role in our treatment because the kind of person who becomes a psychologist, by definition, believes in the lack of importance of biological factors and supremacy of psychosocial factors. I have been told by such people that all diseases are biopsychosocial and that CBT will soon become the treatment of choice for psychosis. Etc. Even if I were to somehow recover from ME, I would have to find something else to do now that I know what I know.

CBT is a treatment for psychosis recommended by NICE even though it doesn't work as shown by meta analyses - but there is no patient lobby there just a few psychologists such as Laws and Coyne trying to change things.

I've worked with a number of psychologists and I don't recognise the description you give in fact I think the people I have worked with would be shocked by the whole notion of CBT and the lack of science and psychological theory behind it. But they the psychologists I worked with never did any clinical work and had migrated into computer science departments at various universities so maybe they are unusual.

More to the point I suspect the way to reform the ME services is to remove the psychiatrists running them but the problem is who to replace them with?

 

[Jonathan Edwards]

My question might sound a bit naive, but anyway... I think I intuitively get why a trial must be blinded, but could you explain concretely what biases an unblinded trial involves?
And beyond PACE, is any psychotherapeutical trial possible then?

If your question is naive you are at least in good company.

Not all trials need to be blinded. A trial of cataract extraction is fine unblinded (forgive the pun). The function of blinding is to prevent knowledge on part of either clinician or patient of the nature of the treatment having an effect on the result. It can only have an effect on a result that depends on what the clinician or patient thinks. Whether the patient can read the middle line on the eye test chart does not. Whether somebody says their pain is better or not does. So you have to blind trials with subjective endpoints but not trials with objective endpoints. It may be relevant that a lot of the endpoints we talk about as being 'objective' here, like return to work or actimeter measurements, are still subjective in an important sense - they can depend on what the patient thinks about the treatment. But they may be less subjective than self-reported questionnaire results. In my experience of patients reporting results of treatment the single most important cause of bias is likely to be that they will modify what they say because they want to please me or perhaps simply do not want to have to admit in so many words that they are no better. Clearly if people know they were 'on the control treatment' they are less likely to be bothered by saying they were no better.

So the simple rule is that you cannot do trials unblinded if the endpoint is subjective to the extent that there is a reasonable likelihood that knowing whether you had the 'good' treatment will alter the result. As user9876 points out, the situation for CBT is a sort of worst case scenario. In other situations one might reasonably say that the results are not going to be affected too much by knowing what the treatment was. But the aim of CBT is to change the way patients think about their illness. It is more or less trying as hard as you can to make the patient bias their answers. The aim is to make patients feel they are better without actually changing anything about the way their body is working - other than thinking they are better. It has been said that CBT is a 'deliberate placebo', by the CBT advocates. That means you would expect it to have precisely the effect that blinding is designed to cancel out. I am grateful to various people on PR for pointing all this out to me in such stark terms.

Psychotherapeutic trials should still be possible but to be meaningful they would need to be very carefully designed. If the outcome measure is objective in a relevant sense then blinding is not a problem. Psychotherapy to prevent suicide could be tested unblinded as long as the people in the control group were not so devastated by not getting treatment that they killed themselves. A trial of CBT in ME with return to work in people wanting to return to work as a primary endpoint might be feasible and interpretable. Here there are issues of primary and secondary endpoints and statistics that I will leave to one side. But even here I think it would help to have a crossover design so that everybody got the CBT at some time point and the result was judged on whether people got back to work after the CBT rather than after an alternative.

I also think that it may be possible to compare several different versions of psychotherapy to see which is best, but you have to be very careful to make sure that even the therapist has no idea which is supposed to be the 'good' treatment. It more or less requires that the therapist has no commitment to any belief in a particular method. That gets tricky if the effect of CBT is dependent on the therapist believing in it!

 

[Sidereal]

CBT is a treatment for psychosis recommended by NICE even though it doesn't work as shown by meta analyses - but there is no patient lobby there just a few psychologists such as Laws and Coyne trying to change things.

I've worked with a number of psychologists and I don't recognise the description you give in fact I think the people I have worked with would be shocked by the whole notion of CBT and the lack of science and psychological theory behind it. But they the psychologists I worked with never did any clinical work and had migrated into computer science departments at various universities so maybe they are unusual.

Research psychologists are completely different than clinical psychologists. I was in research myself so any interaction with clinicians (nearly all of whom endorsed insane views I spoke about) was like talking to aliens, quite frankly.

 

[Bob]

I thought there was room for optimism.

I think there probably is room for optimism, but we've seen so much dishonesty that we're cynical and we've learned not to take things at face value.

I have been thinking a lot about the CBT trials this week. What has hit me forcibly, for various reasons, is how off target much of the discussion is. The simple fact is that because of the nature of the therapeutic modality, the fact that it was unblinded and the choice of subjective primary outcome the PACE trial tells us nothing.

I see the discussion has moved on since you made this point, but I just wanted to say that if things were that simple, the Lancet wouldn't have published the study in the first place and then wouldn't have defended it. If we'd only made that simple argument against PACE, we'd have been completely ignored, and so we were reduced to arguing our case on their terms. As you have pointed out, we have made headway with this approach. The non-blinding issue is the central flaw, but I think a cultural shift needs to take place, and is slowly taking place, before psychological trials are held to the same standards as other clinical trials. Our community couldn't single-handedly have caused that cultural shift to happen, however much we advocated for it.

So, actually, this was mostly a talk about realities as decided by the patients. Nothing was said about 'we find this works', only 'the patients said they thought this was important', and what the patients said was important was getting back to being active and being treated in a non-patronising way. The speaker deliberately removed 'exercise' from her programme and talked of activity - indicating that the issue was regaining what the patient wanted, not exercise per se.

I would argue that this could be considered rather a dangerous approach to treatment, depending on its context, and it's an approach that is causing us problems and one that we need to move away from. We're all too often told that if a patient feels better after a specific intervention then we can't argue with this, and that the patient knows best, and the intervention therefore worked. End of discussion. But this is medicine by anecdote, which is dangerous. It encourages quackery, and it can equate to quackery. Surely clinical trials tell us far more about graded activity programs than individual patient experience? We know that exercise programs do not lead to improvements in activity, let alone allowing a return to sports, so why was there a suggestion by the speaker that a graded activity program could return a patient to sports? This is the typical dangerous ill-informed nonsense that we're persistently fighting against. Chronic fatigue fluctuates by itself, and many fatigued patients improve over time, and many therapists seem to make a potentially dangerous assumption that their therapy caused the improvement. We see this time and time again, where therapists make assumptions about the value of their intervention. In the PACE trial, it was shown that 58-65% of participants in the control group improved naturally over time. This clearly came as a surprise to the authors who seem to have expected such an outcome for the main trial interventions (CBT/GET), and not the control group. We can't allow such ignorance to persist. (In fact only 11-15% of participants improved when CBT/GET were added to the control intervention - a figure I've yet to see published prominently, and I would hazard a guess that zero percent of therapists are aware of this outcome.)

Careful language is always used such that any complaint about the underlying therapeutic process would look unreasonable. Please don't be won over by the nice language used. We've got to use hard headed analysis.

I think perhaps the most important issue, in terms of how patients interact with the existing clinics, is the beliefs and attitude of the staff who run the clinics. If they genuinely care about their patients and accept that their therapies are not suitable for everyone, and that they can't help some patients, in terms of an improvement in symptoms and function, then that would at least be a good start. (They can still help patients in other ways.) But an insight into the actual value and potential harms of activity programs is essential for our community. We know that some of the people who run these clinics often believe that their psycho-social interventions actually address the underlying causes of illness, and believe that the therapies actually return a large proportion of patients to normal physical function despite firm evidence (e.g. PACE trial, FINE trial, NOD data, Wiborg et al) to the contrary. We also know that many of the therapists aren't aware of the actual outcomes of the PACE trial.

Also, we know that some staff at one clinic entertain the possibility that CFS is a culturally driven meme. The amount of wrong-headedness involved for a medical professional to even consider such an idea is breathtaking. Patients must surely not thrive at the hands of such "care givers". Hopefully such opinions are an unrepresentative minority, but we do come across it rather a lot. Also, as @user9876 has pointed out, one large paediatric clinic is reported to have dubious practises whereby patients who don't respond positively to psycho-social interventions are rediagnosed as having pervasive refusal syndrome, (we assume) to make the stats look better for the clinic.

Hopefully there is progress, but please don't accept the use of language at face value. We're all far too familiar with how clever language can persuade the government and health authorities that ME patients just need a pat on the head.

 

[chipmunk1]

I have been told by such people that all diseases are biopsychosocial

i don't understand.. did they mean all psychological disorders are biopsychosocial or all organic diseases are biopsychosocial???

 

[Cheshire]

What has replaced psychoanalysis is not good and is mostly stupid neuro-babble about neurotransmitters and "psychoneuroimmunology" and other crap of this nature but it's better than the outright dangerous abusive cult-like quackery of psychoanalysis.

We've got both!

 

[MeSci]

I agree but I think we need specialist services just not the ones that currently seem to exist. I don't know whether a scrap and restart approach is better than a transform one. I wonder what the current services claim to the clinical commissioning groups in terms of treatment and recovery. If they are using the PACE results to claim a 22% recovery rate then it may be very hard to shift them to either new services or a more supportive role because the CCGs would tend to prefer the idea of recovery and improvement as better value. I suspect given the free market reforms in the NHS contract lawyers could have great fun with such claims.

Another problem may be that existing services may have gained a bad reputation with patients, and that it may not be well-known that they have changed their practices, so that bad reputation is hard to shake off. Once something has negative connotations, it's hard to rebuild confidence.

 

[MeSci]

There wasn't any real discussion on diet and dietary intervention. There was a short discussion on the role of trace elements, vitamins, supplements (magnesium in particular) following on from two questions at the end - one of which came from someone who I think was some form of nutritional therapist who wanted to see research into the efficacy of these type of interventions.

Nothing on food intolerance or carb reduction, I presume. This knowledge has been life-changing for many of us.

 

[Sidereal]

i don't understand.. did they mean all psychological disorders are biopsychosocial or all organic diseases are biopsychosocial???

All disease!

 

[alex3619]

Once something has negative connotations, it's hard to rebuild confidence.

A bit like the loss of confidence some of us have about many medical professionals in general? At some point things will change.

However the other situation is that doctors never had good information. We know a lot more now. A more reasonable approach from doctors is warranted, but they often do not know much of the advances that have been made.

If something is important there is no substitute for checking things and updating knowledge from time to time. Sadly the medical profession, in general, tends to be nearly two decades out of date. The last time I saw the figure it was 17 years. This is because while some topics they are very up to date on, others have not been looked at since medical school, and medical school information is often five years out of date. This last if from the Deans at Harvard and Stanford in an article some years back.

Better communication, better ongoing training, and better resources for doctors have been and still are required. We need some way to address getting good information to doctors, but EBM is not so far capable of doing this.

Personally I am in favour of evidence based practice, though it is resource demanding, as it leads medical professions to update and review regularly. However its not clear that this is workable across everyone in every medical profession.