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

[charles shepherd]

My powerpoint slides can now be downloaded from the MEA website coverage of the meeting if anyone wants to see them:

http://www.meassociation.org.uk/2015/03/23257/

I'm afraid there is no transcript or notes to go with them because I don't use written notes when speaking!

 

[rosamary]

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

I think you are talking sense. I reckon it is crucial to get the clinics far away from mental health. ME/CFS(SEID???) needs to stand alone. There needs to be a team lead who is a doctor but not a psychiatrist. Some kind of general physician (I am making this up as I go along and maybe don't have a clue about what I'm talking about) but someone who only gets the job because they have been interviewed by...let's see...I know: Professor Holgate, Charles Shepherd and Sonya Choudhury and that nice person who is the boss at the 25 per cent charity...oh and we should have the Countess on board too. There are a few other people who could help-maybe Forward ME could sort the interview panel out. So they have to be VERY WELL INFORMED about the whole subject ie ME.

This person needs to thoroughly screen the patients for any other known conditions. (We all know that patients have rarely been screened properly).

Now, if a patient is showing overt signs of psychiatric disease then I think a psychiatrist could be involved if the patient is willing. (But that is the only time they will be allowed to step through the clinic's door at present).

Other staff at the clinic should also be thoroughly educated about the current situation surrounding the diagnosis and the fact that the name of the disease is an umbrella term and no-one really knows what is wrong with the patients other than that which the patients describe.

So I think a dietician should be a member of the team, obviously a few specialist nurses, a physiotherapist and, if a patient would like some counselling, then a psychologist will be required.

If any of the staff utter the word 'somatoform' they should be fired immediately or moved on.

The patients should be asked what they feel would help them.

Finally, this team should be doing domiciliary visits to ensure that housebound patients are not left without attention from the medical profession. They are vulnerable adults and have a right to medical or psychological care if that is what they feel they need.

 

[Esther12]

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.

I'm pleased to hear that you found her helpful, and I am not saying that no patients will, but I really regret ever having been involved with CFS professionals, and think that if I'd been properly informed of the available evidence before seeing them would have known to stay well clear.

I am concerned that totally abandoning things like PACE, rather than just explaining their limitations and ensuring that they are reported fairly, will mean everyone just gets 'help achieving the things that are important to them' or something like that, and that more patients who are like me will get sucked into things that are of no real value to them.

That no-one working at a CFS centre providing CBT and GET seems to have publicly called for the release of the PACE trial's protocol defined outcomes, or highlighted the problems with the way result have been spun, does not reflect well on them.

 

[Isamu]

 

[Isamu]

The biopsychosocial model:

"There are a variety of psychological influences that can contribute to an illness, including depression, negative thought patterns, and a lack of self-control."

This was something dreamed up by the psych lobby in 1977. Infants get diseases as do small children. They haven't had time to become depressed or have negative thought patterns, and they all have a lack of self control. Because they are learning since they are born with no clue what self control is!

 

[MeSci]

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.

Here is the nonsense that the Cornwall clinic offers:

It provides diagnosis, assessment, and a clinical management plan to enable long-term rehabilitation, sharing care with the GP and returning the patient to primary care following re-enablement. The team – led since April 2010 by occupational therapist Carol Wilson – comprises four occupational therapists, clinical health psychologist Dr Cristina Lopez-Chertudi and two GPs with a special interest.

The service used to be run by immunologist Prof Pinching, whom I believe you know. Although I don't know what it offered by way of treatment then, it looks as though it has gone the opposite way from what you suggest! (I had been ill for many years by the time I was referred, and Prof Pinching reckoned I was managing it well and didn't need help unless I specifically required anything. I liked his respectful manner apart, perhaps, from an apparent scepticism about chemical sensitivity, which appears to be common in ME/SEID).

 

[MeSci]

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.

As long as we are not pressurised to take them.

I was refused a bone density scan by my current doctor, despite having suffered a fracture which I suspect was due to the hyponatraemia caused by my ACE inhibitor (now stopped). I had foolishly told him I was not willing to take bisphosphonates, which was why he refused, saying that there was no point if I wasn't willing to take them. (I did find studies later that found that hyponatraemia increases the risk of fractures.)

I wanted the scan done to see whether I might benefit from taking more bone minerals - treating myself, effectively saving the NHS money. I don't want to take drugs without trying natural methods first. And I would like to be able to get tests done, as they seem to be able to get in the US, to improve my self-treatment, giving me a better idea of what I need and what I don't need, rather than working in the dark.

I've improved multiple aspects of my health in the past few years which doctors have failed to do for decades.

 

[worldbackwards]

The service used to be run by immunologist Prof Pinching, whom I believe you know. Although I don't know what it offered by way of treatment then, it looks as though it has gone the opposite way from what you suggest!

There is a tendency in these clinics to go their own way to some degree, dependent on who runs them. With this (and in Leeds) they seem to have gone from something constructive (if very limited) to something potentially very damaging. My own local clinic used to be run along these lines (clinical psych, OTs, etc), but a while ago they left and were replaced by an 'interested GP' and his team who are, from two independent reports I've heard, pretty good in comparison (in case you're wondering, no, I'm not going back).

They are small enough for teams to move on en masse and so they can go both ways.

 

[Aurator]

My powerpoint slides can now be downloaded from the MEA website coverage of the meeting if anyone wants to see them:

http://www.meassociation.org.uk/2015/03/23257/

I'm afraid there is no transcript or notes to go with them because I don't use written notes when speaking!

"I hope that we can now see more ME/CFS medical meetings and conferences where (for some of the time at least) all sides of the debate actually sit down and listen and talk with each other – which is something I have always beieved in doing!"

Just to see where it takes us, I'm not going to mince words.

I had hoped, - naively, it seems - that we were past this stage by now. The PACE Trial, to anyone willing to take even a cursory but clear-headed look at it, was a lemon. Its findings have furthered the interests of the people who were behind it, but almost no-one else. If I'm wrong, where are all the patients trumpeting its virtues? The silence is deafening.

I'm puzzled why we even think it's reasonable for there still to be sides in the larger debate about ME/CFS. We don't yet sufficiently understand what causes PWME to be sick and continue to be sick for years. Why isn't trying to understand why they're sick everyone's priority?

If a PWME were a car, what would a sane person do? They'd look under the bonnet to try and get to the bottom of why the car wasn't running right. A few people around the world with a great deal more sense than resources are having a look under the bonnet as we speak, but a large part of the medical (and political) establishment apparently still questions whether there is any need to look there in the first place.

What more evidence do the sceptics need that PWME are sick, that current treatments aren't helping them, and that the logical thing to do is to throw some serious money at looking under the bonnet? Do we have no alternative but to play by the other side's rules for as long as it pleases them to procrastinate?

I'd make a lousy diplomat, I admit. I have this on good authority, having been told as much by someone who is a diplomat.

 

[daisybell]

The skeptics can't cope with believing we are sick. This is not about us, it's about them... To believe we are sick means such a huge shift in thinking and also acknowledgement of how badly they have treated us. No one likes to admit they were wrong or wants to feel guilt. Much easier to stick vehemently to the belief and simply get more and more defensive....

 

[Jonathan Edwards]

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

From the little I have seen I suspect it is pretty arbitrary. In your set up a move to community might be of practical help but community services tend to be 'ordinary stuff' that does not seem to need to be consultant led. I cannot see why there is a distinction to be honest but maybe the relevant thing is to try to get the best option within the system as it is. I strongly suspect that within 5 years the current structure will implode and so it may not matter much whether the service is 'hospital' or 'community' in the immediate future.

 

[Jonathan Edwards]

Just to see where it takes us, I'm not going to mince words.

I had hoped, - naively, it seems - that we were past this stage by now. The PACE Trial, to anyone willing to take even a cursory but clear-headed look at it, was a lemon. Its findings have furthered the interests of the people who were behind it, but almost no-one else. If I'm wrong, where are all the patients trumpeting its virtues? The silence is deafening.

I'm puzzled why we even think it's reasonable for there still to be sides in the larger debate about ME/CFS. We don't yet sufficiently understand what causes PWME to be sick and continue to be sick for years. Why isn't trying to understand why they're sick everyone's priority?

If a PWME were a car, what would a sane person do? They'd look under the bonnet to try and get to the bottom of why the car wasn't running right. A few people around the world with a great deal more sense than resources are having a look under the bonnet as we speak, but a large part of the medical (and political) establishment apparently still questions whether there is any need to look there in the first place.

What more evidence do the sceptics need that PWME are sick, that current treatments aren't helping them, and that the logical thing to do is to throw some serious money at looking under the bonnet? Do we have no alternative but to play by the other side's rules for as long as it pleases them to procrastinate?

I'd make a lousy diplomat, I admit. I have this on good authority, having been told as much by someone who is a diplomat.

Fair enough, but unlike you or I, Charles is a diplomat - and quite successful at it!

 

[eafw]

I strongly suspect that within 5 years the current structure will implode and so it may not matter much whether the service is 'hospital' or 'community' in the immediate future.

The system in general certainly seems to be teetering already. As to ME, any move anywhere that took us out of psych would be progress. I would set it as a priority to move things forward for us.

 

[rosamary]

Fair enough, but unlike you or I, Charles is a diplomat - and quite successful at it!

Speak softly but carry a big stick.

(Is there a big stick?)

 

[Jonathan Edwards]

Speak softly but carry a big stick.

(Is there a big stick?)

I think you can only get iSticks now - and they keep getting smaller.

 

[eafw]

I'd make a lousy diplomat, I admit.

This is a battle to be fought on many fronts, and we need the diplomats and those working within the system as well as all the other avenues of advocacy. I would prefer the kick-up-the-backside approach myself, but accept there's more than one strategy - we need those who can soothe establishment egos too.

Main thing is that we are working to roughly the same end and can recognise progress, or at least a chance at it.

 

[Aurator]

I strongly suspect that within 5 years the current structure will implode and so it may not matter much whether the service is 'hospital' or 'community' in the immediate future.

I'm hoping the way you've framed your prediction makes room for a positive interpretation, not just a negative one.

Main thing is that we are working to roughly the same end and can recognise progress, or at least a chance at it.

The researchers will probably come up with the compelling biomedical evidence just in time for the implosion that J.E. speaks of, when a multi-tiered, privatised NHS puts effective treatments for all sorts of things beyond most people's reach, particularly the long-term sick.

 

[Sean]

"re-enablement"

What a crock. :thumbdown:

 

[CBS]

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?

Theoretically, the CBT employed in the PACE trial was intended to address irrational (illness) beliefs, much as it does when used to treat phobias, not psychoses. When employed in an appropriate population (say, cardiac patients who are anxious and potentially immobilized by benign sensations following surgery - and who will benefit from resumed activity at appropriate levels), CBT is effective. It's (mis)use in CFS is based upon significant assumptions about the etiology of our symptoms.

 

[user9876]

Theoretically, the CBT employed in the PACE trial was intended to address irrational (illness) beliefs, much as it does when used to treat phobias, not psychoses. When employed in an appropriate population (say, cardiac patients who are anxious and potentially immobilized by benign sensations following surgery - and who will benefit from resumed activity at appropriate levels), CBT is effective. It's (mis)use in CFS is based upon significant assumptions about the etiology of our symptoms.

I realise there is a fashion for CBT currently but I keep seeing various meta-analyses being referred to and not showing great results. I've not done a complete survey though. I suspect within CBT people learn a few thought tricks that help but what surprises me is that their is no underlying cognitive model behind how it would work. Or as far as I can tell any attempt at applying such. To me if falls in a camp along with NLP of pseudo science. It might be an incantation that helps but science should try to explain. In non-blinded trials I think it becomes hard to really test.