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

[charles shepherd]

Actually not, Kati. The paediatric speaker said absolutely nothing about theory - zilch. And all the other speakers, including the psychiatrist who thought PACE was valid, only talked about biological mechanisms. We had immune, we had endocrine, we had supplements, we had autonomic, we have neuropathological, we even had xmrv. The words 'biopsychosocial' and 'somatising' were never heard all afternoon. The Beard paper on mass hysteria was mentioned by Charles simply to point out how far things have moved on.

You might say that yes, but they were all three (i.e. excluding Charles, Lady Mar and Luis) thinking biopsychosocial under their breath. But I think you underestimate the potential for changing minds. Medical opinion is driven by fashion. When fashions change they can change rather suddenly. I got the distinct impression that everyone had nipped out to Zara and got an IOM burnt orange bio-headscarf yesterday.

And I think I'm correct in saying that I was the only speaker to mention abnormal illness beliefs, abnormal illness behaviour, deconditioning and inactivity…..!

 

[Valentijn]

I got the distinct impression that everyone had nipped out to Zara and got an IOM burnt orange bio-headscarf yesterday.

Excellent ... those should be very popular in the Netherlands, as is anything orange

 

[Jonathan Edwards]

I think the issue of 'what would a clinician do if we couldn't say something worked' is an interesting one. I was asked a related question on what happens for sorts of treatment that might be good but cannot be reliably tested in trials (from a hypnotherapist).

For me the answer is you do what the first speaker does. She turns up to work. She talks to patients and finds out what they need. She discusses with them the options for trying to make progress and agrees on the most sensible plan that patient and clinician can think of. That plan might include no specific therapeutic intervention but it should include a mechanism for providing the patient with as much information as possible in as honest a way as possible. One can argue forever about what is achieved in practice but the central issue is what the speaker emphasised most - good faith.

My father advised me as a boy following him into medicine that if you are uncomfortable about the idea of looking after people when you know you do not know what the best thing to do is and probably have no idea what to do, then you are in the wrong job. The idea that 'we must have some treatment to offer, even if it is lousy' seems to me wrongheaded. I only looked after a few people with chronic fatiguing/ME type illnesses. I found it challenging to have to admit I had no idea what the cause was, no idea what name to give the illness and no idea what the best plan of action was, but I discussed all of this with patients and tried to find any small thing that might help in one way or another. And when I started in rheumatology I knew I had no treatments for ANY of my patients that really did anything useful. I went in hoping we could change that, as the oncologists had done for Hodgkin's disease etc. etc.

We did not discuss this at the meeting. The point was just raised 'but what would we do if...'. To be honest I am not sure how to respond to that mindset. I guess from my point of view the main weakness of the argument is that it is all too easy to think that as long as you have a treatment (even if lousy) you can turn the handle and forget about trying to find out how to do the job the patient has really come to you for - making them better. And you also fail on the consolation prize - good faith.

Of course for at least three thousand years the function of a medical practitioner was to pretend to be able to cure people in the absence of any knowledge of disease mechanism or effective treatment. (Hence the justified contempt from surgeons who actually did useful things like sawing off gangrenous war wounds.) Ironically, there were plenty of customers. Things only really changed in 1946 with penicillin - when my father was already a practicing physician. Traditional roles are perpetuated both by the profession and by the clientele - but at least the issue rose to the surface briefly.

 

[Valentijn]

I've got the impression that at times paediatricians and those treating children do use more sympathetic language and have a more subtle approach basically of GET but using activity management and forced increased education as an activity rather than direct exercise.

That was my concern as well. 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.

Does the clinic with the sporty kid offer him proper pain management, and home and disability support? Or do they encourage him to exceed his limits by attending school, and by discouraging and interfering with him acquiring a wheelchair? Do they seriously investigate symptoms, or do they just give tips on lifestyle management and slowly increasing activity?

Based on their website, they use GET to "help" patients achieve their goals, not biological treatments, and probably not much in the way of disability support.

 

[Sidereal]

In my humble opinion, ME/CFS patients would be better served if these "specialist services" were disbanded and primary care doctors simply learned to say "I don't know" and tolerate their own powerlessness and anxiety when faced with a baffling disabling illness and suffering instead of washing their hands of these patients and passing the buck to these psychiatric "services".

Perhaps the stress and humiliation of medical training which forms a certain mindset makes this impossible but patients should not have to suffer because the doctor is traumatised and incapable of acknowledging limitations of their knowledge. Clinging to delusional beliefs about efficacy of certain therapies which do not work and only push people into greater disability and suicide is much worse than being upfront with the patient and saying we have no idea what causes your illness, your chances of full recovery are in the region of 0% but I can try to help you cope with various symptoms the best I can. That's ALL it would take to establish a much better doctor-patient relationship than most of us have with our doctors. It doesn't cost anything either.

Patients should not have to get accurate medical information about their condition from charities and the internet. What pisses patients off is this pernicious paternalistic patronising attitude many doctors adopt in the face of uncertainty where they deal with their own anxiety by saying that they DO know what's causing the problem and here's how you can fix your defective psyche with a 97% recovery rate...

 

[Sam Carter]

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. Any attempt to extract an interpretation, whether positive or negative, is fruitless because we cannot tell why what happened did happen. Further analysis of details of trial structure is irrelevant. And it is not that the trial suffers from being too formal and ignoring patient individuality. I disagree (very amicably) with Charles on this but only in the sense that I think he is allowing the trial more than it deserves. The realities of individual patient experience are actually all we have to go on. The fact that a trial has a standard approved structure is no guarantee that it does not have a simple flaw that makes it uninterpretable. My NEJM RA rituximab trial had standard structure. The drug company wanted to say it proved that rituximab was specially effective with methotrexate. In fact the trial shows that rituximab is effective but nothing can be said about the use with methotrexate, because of a detail in the protocols. It took a court case to quash the patent the drug company wanted to get on combining rituximab with methotrexate. The devil is in the detail.

I respectfully disagree that further analysis of CBT trials has no value.

Even if the results are uninterpretable from a scientific or impartial perspective, that has not prevented their results from being interpreted and for that interpretation becoming a dogma that most doctors believe (even if they won't admit it to patients).

Had the PACE trial stuck to its original protocol and only a handful of participants met the stricter recovery threshold, it becomes much harder to sustain the idea that the only things holding patients back are fear of activity and deconditioning. As things stand, the PIs continue to claim that a quarter of patients who received CBT or GET got back to normal, and some clinicians have gone further claiming that 30-40% of patients recovered.

I worry about doctors who talk about goals and activity. Does a sick child want to be active again? Of course. But the path to more activity for ME patients is not more activity. After several decades of illness ones learns to be wary of what lies behind such talk.

This matters from a political and from a personal perspective. Good luck keeping your friends when they read that the Lancet has published data showing that psychotherapy and exercise can cure your condition. They've been handed an interpretation from an authoritative publication, and they believe it.

They don't question the methodology of the trial, they question you.

 

[Cheshire]

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.

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?

Any attempt to extract an interpretation, whether positive or negative, is fruitless because we cannot tell why what happened did happen. Further analysis of details of trial structure is irrelevant.

I get your thinking, but as the PACE proponents keep interpretating their data, and even if those interpretations are irrelevant, I think trying to counteract them isn't.

Thanks very much to you and @charles shepherd

 

[user9876]

In my humble opinion, ME/CFS patients would be better served if these "specialist services" were disbanded and primary care doctors simply learned to say "I don't know" and tolerate their own powerlessness and anxiety when faced with a baffling disabling illness and suffering instead of washing their hands of these patients and passing the buck to these psychiatric "services".

Perhaps the stress and humiliation of medical training which forms a certain mindset makes this impossible but patients should not have to suffer because the doctor is traumatised and incapable of acknowledging limitations of their knowledge. Clinging to delusional beliefs about efficacy of certain therapies which do not work and only push people into greater disability and suicide is much worse than being upfront with the patient and saying we have no idea what causes your illness, your chances of full recovery are in the region of 0% but I can try to help you cope with various symptoms the best I can. That's ALL it would take to establish a much better doctor-patient relationship than most of us have with our doctors. It doesn't cost anything either.

Patients should not have to get accurate medical information about their condition from charities and the internet. What pisses patients off is this pernicious paternalistic patronising attitude many doctors adopt in the face of uncertainty where they deal with their own anxiety by saying that they DO know what's causing the problem and here's how you can fix your defective psyche with a 97% recovery rate...

I would actually disagree here. There are many things wrong with the current clinics but there are so many things wrong with a lot of GPs. Finding a good GP can be really challenging and my experience is when we have found one it is one of the younger members of the practice who then moves on.

I think there are things that a good specialist service could offer like help with pain medication, an OT service to help with home adaptations, dieticians for those with problems of weight loss/gain or just people who struggle to get a balanced diet. I think expertise could be developed in these areas to provide very practical help. Also such a service could help with things like benefit claims etc.

For children services could do a lot more to help with education and dealing with schools.

 

[Jonathan Edwards]

I worry about this. Looking at a sample of 1 not all children want to get back to sport. In fact not all children with ME did sport before hand. My wider point is that I worry that they hear things from one or two children and over generalise.

...

Ok so I am ranting but the language that you refer to with the paediatric speaker just sounds familiar.

Point very much taken. But one can only judge by what was said. Moreover, the speaker made exactly the point that not all children want to get back to sport and also that a lot of children find they are interested in something different by the time they start getting better - they find they are bored with the sport they used to do and want to pursue a new interest - and so the point was made that generalisation is inappropriate.

What people say and what they do and what they say they do can float about a lot. There was a nice paper 'Do rheumatologists do what they say they do?' some years ago. I think people may go on saying the same thing while they gradually shift their ways of doing - and vice versa. Who knows how much things are really changing, but I thought there was room for optimism.

 

[Sidereal]

I would actually disagree here. There are many things wrong with the current clinics but there are so many things wrong with a lot of GPs. Finding a good GP can be really challenging and my experience is when we have found one it is one of the younger members of the practice who then moves on.

I think there are things that a good specialist service could offer like help with pain medication, an OT service to help with home adaptations, dieticians for those with problems of weight loss/gain or just people who struggle to get a balanced diet. I think expertise could be developed in these areas to provide very practical help. Also such a service could help with things like benefit claims etc.

For children services could do a lot more to help with education and dealing with schools.

Sure and then there are services which try to push people into more activity and psychotherapy and where the patient is told they don't deal with benefit claims.

 

[user9876]

Sure and then there are services which try to push people into more activity and psychotherapy and where the patient is told they don't deal with benefit claims.

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.

 

[MeSci]

We had immune, we had endocrine, we had supplements, we had autonomic, we have neuropathological, we even had xmrv.

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!).

 

[Sidereal]

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.

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.

 

[Valentijn]

I think there are things that a good specialist service could offer like help with pain medication, an OT service to help with home adaptations, dieticians for those with problems of weight loss/gain or just people who struggle to get a balanced diet. I think expertise could be developed in these areas to provide very practical help. Also such a service could help with things like benefit claims etc.

Yeah, there's a lot of great thinks that the clinics could be doing. But they don't, and probably won't, ever. Most range between "useless" and "very harmful". With clinics being as they are, I think it's better not to have them existing at all. Then we could start fresh some day with an explicitly anti-BPS model focused on symptom and disability management at the very list.

Or the psychobabblers need to be expunged from the current clinics if they aren't willing to change their treatment of patients, but I don't see that happening any time soon.

 

[Valentijn]

But one can only judge by what was said. Moreover, the speaker made exactly the point that not all children want to get back to sport and also that a lot of children find they are interested in something different by the time they start getting better - they find they are bored with the sport they used to do and want to pursue a new interest - and so the point was made that generalisation is inappropriate.

Yeah, they also use shifting targets to prove that patients are cured. "Look, little Johnny can do everything he wants to do! It doesn't matter that he's no longer capable of doing what he did before, because he can do what he wants to do. He's been HEALED, amen!"

They do actually twist things in this way, frequently. In adults, our failure to be able to do very normal things is attributed to aging, for example. If there's a way to spin something, they will do it, no matter how implausible their explanation is. Hence all of the skepticism we experience when someone makes statements which aren't overtly pro-psychobabble. I suppose we'll start believing them when they explicitly reject psychosomatic theories and treatments, such as by getting CBT and GET the hell off of their website.

 

[A.B.]

We would be better off investing the money into research rather than wasting it on dubious therapies in fatigue clinics.

We can also handle being told that there is no effective treatment available.

 

[Sidereal]

They do actually twist things in this way, frequently. In adults, our failure to be able to do very normal things is attributed to aging, for example. If there's a way to spin something, they will do it, no matter how implausible their explanation is.

Right, or they say the patient had reduced premorbid functioning to begin with so it doesn't matter that they can hardly do anything now that they're "recovered". They apparently never stop to consider that low energy and activity before the "sudden" onset ME was likely indicative of underlying problems with energy production during the prodromal phase of the illness, not some weird personality quirk.

 

[Jonathan Edwards]

I suspect that we have over analysed the details. But this is partly due to lack of success in making the wider points around the subjective outcomes and lack of blinding. I actually think there is another important point which is that the trial aims to change peoples perceptions of fatigue and illness and then asks them about their perceptions. But I do wonder if patients experience in understanding the many more detailed methodological flaws has helped in creating a better awareness of the need for good methodology and care over what a trial says at least within the patient community.

I get an impression that some in the medical community would like to ignore the PACE trial because they know it was flawed. The problem is that White and the SMC keep promoting it and that leaves a need to discredit the results. I feel that if all the data was release it would discredit itself or at least the associated spin particularly around recovery. Although I think White didn't mention recovery figures in his medscape piece.

I very much agree. Going through all the minutiae is important before standing back and saying 'it fails here'. Also, I am only now beginning to understand why the basic point has not been got across - however simple it may be it is not widely understood how the argument works. And the bit about changing perceptions is very relevant - I had wanted to imply that in adding 'the nature of the treatment' to unblinding and subjectivity. And I would not have had a clear grasp of that if we had not had these lengthy discussions.

And I agree that the message that the PACE results cannot be reliably interpreted still needs to be got across. But to my mind there is already enough information out there to see not just the basic flaw but all sorts of other problems. The problem with looking for further problems in the data is that there will always be the comeback 'no trial is perfect'. To me the situation is a bit like a bucket with a hole in the bottom. There is no point in saying 'you sold me this bucket and it has a chip on the handle and the paint is flaking off here and there is a small dent in the side and there is a hole in the bottom' when what you mean is that the water runs out and it is no good. 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.

I may be wrong on all this - in all sorts of ways, but I think at least there may be an appreciation now that the criticism of the trial is not simply vexatious arguments about trivia.

 

[user9876]

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.

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.

 

[Sidereal]

We would be better off investing the money into research rather than wasting it on dubious therapies in fatigue clinics.

We can also handle being told that there is no effective treatment available.

And those who can't handle it and have trouble adjusting to this reality should be offered psychiatry referral. We shouldn't all have to suffer under the delusion that there is an effective treatment available because some people might get depressed or suicidal when they hear that there is no treatment.