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

[alex3619]

All disease!

Its a tenet of biopsychosocial theory that all disease has biological, social and psychological implications. Which if loosely interpreted is not hard to justify. However it seems this so often becomes about the psychological being paramount.

 

[Jonathan Edwards]

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

According to the biopsychosocial model all diseases are biopsychosocial and on the terms of the original model that is perfectly reasonable. Coronary heart disease is biopsychosocial, prostate cancer is biopsychosocial, AIDS is biopsychosocial. All that the model implies is that psychological and social factors affect the pattern of the disease. Coronary heart disease is more common in Scotland, prostate cancer is affected by alcohol consumption, etc. The inclusion of ME/CFS under the biopsychosocial model has no implications for it being more psychological than a heart attack. It is just that nobody points that out when they use the term.

 

[Sidereal]

Its a tenet of biopsychosocial theory that all disease has biological, social and psychological implications. Which if loosely interpreted is not hard to justify. However it seems this so often becomes about the psychological being paramount.

Right, I think it's a harmless belief when loosely interpreted. But when it's used to deny people disability payments and mobility aids because of psychosocial "perpetuating factors", then it becomes a monstrosity.

 

[chipmunk1]

Its a tenet of biopsychosocial theory that all disease has biological, social and psychological implications. Which if loosely interpreted is not hard to justify. However it seems this so often becomes about the psychological being paramount.

then any human experience is biopsychosocial. anything in life is biopsychosocial.

 

[eafw]

Right, I think it's a harmless belief when loosely interpreted.

It has potential to be a useful model IF we went back to the origins, that is the work done by disability activists that you can't just consider a bodily malfunction in isolation - that access to services and other resources are a social issue, and the way a person is treated and their place in society will impact on the way the illness or disability affects them, ie the original "provide wheelchair ramps" theory.

The usefulness of it has been twisted out of all recognition however, mostly to shore up the ideology that says "no such thing as society" and that it is up to an individual to will themselves out of their incapacity by choosing better thought patterns and more suitable behaviours (and if they don't, then use it against them as proof of their ingratitude, unwillingness to recover and derangement)

For us an interpretation that could work would be something like:

1) the recognition of the organic disease and the recognition that there are no obvious simple drug treatments as yet, though some comorbid conditions can sometimes be tackled (bio)

2) Stop demonising the patient population. Educate GPs and other healthcare providers as to the nature of the illness and the needs of the patients. Make sure services such as pain management, support for day to day activities, welfare etc are available. Spend some money on research. Take the ME clinics out of mental hospitals and away from the psychs. Draw on the expertise we do have from the patient population and the handful of good practitioners (social)

3) ... um ... got nothing here ... (psycho (lol))

 

[eafw]

some speakers were perfectly happy with the NICE guideline, and the validity of the PACE trial results

This continues to boggle my mind, that these supposedly intelligent people can look at the heap of manure that is the PACE trial and be at all happy with it. How do you even get through to them ?

 

[eafw]

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.

What do you think of the chances of moving the services rather than closing them ? Community health rather than mental health for instance ? It would still be best we can manage at the moment (until we get more decent research) but would give us a chance to get away from the stranglehold of CBT and the psych nonsense.

 

[eafw]

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 .. 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.

Bit of an aside, but Lenny Jason is a psychologist. Not that he proposes psychology as a treatment, but he does a lot of interesting work looking at patterns of disease and stigma and social behaviours. It has its place when done intelligently.

 

[Jonathan Edwards]

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.

But it is that simple, Bob. The medical establishment is very good at missing simple things. The powers that be are often not that bright. If you had made the simple argument, yes, you would have been ignored, but if a clinical pharmacologist had been a referee, things might have been different. The cultural shift will come as proper pharmacology comes in to ME/CFS.

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 none of that was said, yesterday. The speaker was very careful not to judge whether anything worked. Medicine by anecdote is dangerous, yes, but there was no 'we find this works' yesterday, just 'this is what we do' and 'this is what the patients say they found most useful'. It was actually an exemplar in neutral reporting. Clinical trials tell us less than this if they are uninterpretable. One major criticism of the PACE study is that it used Oxford criteria - so I think we do not even know if it provides negative information about more narrowly defined ME/CFS. Doing things by the rule book is never in itself an advantage, only if in doing so you make fewer errors than you would otherwise.

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.

I think it is important not to confuse the paediatric situation I was referring to and the adult situation. Children often do recover and they do return to sport. I recovered from my 6 month post EBV illness and returned to sport (which is what mattered most to me). I don't think I ever qualified fully for ME but I think it very possible that a good proportion of children have a more severe version of what I had. The clinician from the Royal Free who talked about adult disease made no claims about efficacy of her treatment, as far as I remember.

I understand your scepticism and I do take your point that an awful lot of hard work from the patient community does seem to be showing some pay off. There was a sense at the meeting that everyone was very aware that they needed to justify what they were saying - a more self-critical atmosphere than often at medical meetings. At least up until now that must reflect patient pressure.

 

[Jonathan Edwards]

What do you think of the chances of moving the services rather than closing them ? Community health rather than mental health for instance ? It would still be best we can manage at the moment (until we get more decent research) but would give us a chance to get away from the stranglehold of CBT and the psych nonsense.

I do not know if there is any stipulation on which service ME/CFS comes under. The clinicians I know are in departments of immunology, medicine and paediatrics and that seems fine to me. I don't think community services should be separate from hospital services. I think we should go back to the days when home visits were done by professionals with special expertise based in hospital units. One possibly positive aspect of the current 'choice' obsession is that if an immunologist set up an ME/CFS clinic and managed to provide good care without having to employ a psychologist then they might draw business from a department down the road. I am not directly enough involved with care to say anything very sensible though.

 

[Esther12]

The clinician from the Royal Free who talked about adult disease made no claims about efficacy of her treatment, as far as I remember.

Why would patients want to spend their time with her? What information is she providing them that would let them decide whether this would be worthwhile for them?

Lots of patients do not want to spend their time with health staff unless they are able to provide effective treatments (or more briefly, meaningful and accurate information). Some may want 'care', 'support', type stuff. Many have better things to do, and their own support networks, particularly when so many of those involved in CFS centres have shown themselves to be 'not great'.

Edit: I'm repeating concerns expressed by others, but some of these things sound like a step backward to me. Medical staff are happy to talk about working in a collaborative and empowering way with patients... but those words seem rather devalued around CFS (and, tbh, more widely too).

Thanks for all those discussing this, interesting to hear what people are saying.

 

[Bob]

But it is that simple, Bob. The medical establishment is very good at missing simple things. The powers that be are often not that bright. If you had made the simple argument, yes, you would have been ignored, but if a clinical pharmacologist had been a referee, things might have been different. The cultural shift will come as proper pharmacology comes in to ME/CFS.

Yes, I agree that the science is indeed that simple. My point was that getting people to listen isn't that simple. If someone with your status says that the PACE trial is useless, then people listen. But if patients say it then they're confronted by a brick wall. I think it has helped to critique the PACE trial from all angles, for various reasons, including questioning the hypothetical models of illness.

I also agree that the cultural shift will come about as soon as pharmacological treatments are discovered.

 

[user9876]

I think it is important not to confuse the paediatric situation I was referring to and the adult situation. Children often do recover and they do return to sport. I recovered from my 6 month post EBV illness and returned to sport (which is what mattered most to me). I don't think I ever qualified fully for ME but I think it very possible that a good proportion of children have a more severe version of what I had. The clinician from the Royal Free who talked about adult disease made no claims about efficacy of her treatment, as far as I remember.
.

I think there is a particular issue with Children in that the guidelines say ill for 3 months rather than the 6 for adults which I think will tend to skew the recovery statistics.

 

[Bob]

There was a sense at the meeting that everyone was very aware that they needed to justify what they were saying - a more self-critical atmosphere than often at medical meetings. At least up until now that must reflect patient pressure.

That's good to hear. I'm pleased that you and Charles found it a constructive and positive meeting. (It's difficult to interpret it for ourselves based upon what you've both said.) Let's hope that your experiences indicate a general shift in attitude.

 

[Cheshire]

I do think you are being a bear with a sore head Esther12, but I admit that I might have shared your scepticism if I had not paid attention. When the first (paediatric) speaker started talking about practical management I was ready to hear a lot of preformulated ideas based on wishful thinking. But there was none of that. She explained where the clinician wanted to get to - which was where the child wanted to be, which turned out to be being able to play sport again (and some other things besides). There was no theorising. The modalities available were given and then most of the discussion was about how the patients perceived the value of the modalities and the clinician's approach.

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'm not saying that is the case of the speaker. But I'm afraid I share Esther12 skepticism. That kind of speech is not at odd with the psychosomatic view of ME. And BPS proponents have become expert at avoiding "psychological" vocabulary.

At my brainwashing/CBT/GET clinic, they had us focus on things we wanted to be able to do again, and tied that in by working towards those goals as part of the CBT/GET process. So while it might be seen as helping patients reach their goals, I think they elicit those goals to set us up for a CBT/GET treatment in reaching them.

And does PEM intervene in such a model? It can be put aside and denied.

 

[eafw]

I don't think community services should be separate from hospital services. I think we should go back to the days when home visits were done by professionals with special expertise based in hospital units.

I was thinking in the context of my local NHS trusts, there are three: hospital trust(physical), partnership trust (mental) and community (all sorts incl diabetes, childrens HepB, speech therapy, community neuro, TB service, podiatry, physio and lots more) trust. Despite the names each of these three has both hospital and community services.

Currently the "CFS" clinic is in the mental health trust and run by psychs. No service at all for severe or housebound patients.

What I was wondering was whether the community trust - which already operates as a set-up with a range of services and clinicians and special expertise, some of whom are based in a hospital setting - would potentially be a better home for a ME unit.

Don't know whether this is the same structure across the UK though

 

[alex3619]

then any human experience is biopsychosocial. anything in life is biopsychosocial.

Yes, its a an obvious trivialization. The real question is whether any social or psychological factor is important enough to be worth even considering. The BPS approach is a framework for justifying whatever you want to say while sounding scientific. I suspect its often pseudoscience despite having valid foundations.

 

[alex3619]

The cultural shift will come as proper pharmacology comes in to ME/CFS.

I agree. However the psychogenic claims will continue to be made for other disorders. This is a blight on science, medicine and government, and its important those who support psychogenic claims stop protecting them, or that the silent majority finally do something about it. Sadly I think this is unlikely, but we have to keep trying.

 

[Jenny]

Why would patients want to spend their time with her? What information is she providing them that would let them decide whether this would be worthwhile for them?

Lots of patients do not want to spend their time with health staff unless they are able to provide effective treatments (or more briefly, meaningful and accurate information). Some may want 'care', 'support', type stuff. Many have better things to do, and their own support networks, particularly when so many of those involved in CFS centres have shown themselves to be 'not great'.

Edit: I'm repeating concerns expressed by others, but some of these things sound like a step backward to me. Medical staff are happy to talk about working in a collaborative and empowering way with patients... but those words seem rather devalued around CFS (and, tbh, more widely too).

Thanks for all those discussing this, interesting to hear what people are saying.

If this speaker was Gabrielle Murphy, from the Royal Free, she was quite helpful to me. She offered CBT and help with pacing but told me they were unlikely to help me (as I already knew), and referred me to an immunologist, also at the Royal Free. He was willing to do lots of non-standard tests that showed quite a few immune system abnormalities, and he also tried quite a few medications, including long term anti-virals.

 

[alex3619]

Currently the "CFS" clinic is in the mental health trust and run by psychs. No service at all for severe or housebound patients.

I know of patients who had home help services supplied, but I am not sure who did that. However it turns out that the help consists of helping you to do more. CBT/GET in disguise. This has led patients to become afraid of the "help" they are offered.