Letter from parents of children with ME to paediatricians in the UK

TiredSam said:
If anyone wants to claim that the condition is mental or psychogenic, or that there even is such a thing as a psychogenic illness, it is up to them to provide evidence for that claim, and until they do there is no reason for anyone to believe that it is, let alone have to falsify it.
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I like what you say. If only it were true.

The insurance companies have a reason to believe, without good evidence, that ME/CFS is psychogenic
Knights dependent on ME/CFS being seen as psychogenic and all their followers who have built their careers on ME/CFS being treatable with psychological and behavioural interventions have a reason. Or two.
Doctors (especially neurologists in my opinion) who might have to otherwise admit that they don't have all the answers have a reason.
People who just generally like to feel superior to others and who don't want to consider the possibility that they have a lot less control over their health and privileged lot in life than they think have a reason.
Lots of reasons.
 
Hutan said:
I like what you say. If only it were true.
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Indeed. I was of course making the mistake of assuming that most people are rational, whilst forgetting that there seem to be many who are only self-interested, corrupt or just batshit crazy.

This is similar to the point I was trying to make earlier, whilst referring to paediatricians :

TiredSam said:
Agree a completely neutral presentation of quality evidence is best. But evidence that falls below that standard may not do so much harm. Depends on who it's being sent to and what they want to believe.
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Except I was hoping that acceptance of low-quality evidence might work both ways and possibly to our advantage in that case. Not that I was recommending it as a strategy though.
 
This cannot be considered in isolation. The bigger picture is very concerning in that the ICD issues with BDS/ BDD in tandem with this has the potential to embed the biopsychosocial paradigm for years to come.

This is what should be what is dissected on Twitter, rather than being drawn into PACE details. That is a house of cards that is now seen for what it is, and will fall.

It' s legacy however could be that as a diversionary tactic it has worked well, and its impact could now continue for another generation.
 
Hutan said:
The insurance companies have a reason to believe, without good evidence, that ME/CFS is psychogenic
Knights dependent on ME/CFS being seen as psychogenic and all their followers who have built their careers on ME/CFS being treatable with psychological and behavioural interventions have a reason. Or two.
Doctors (especially neurologists in my opinion) who might have to otherwise admit that they don't have all the answers have a reason.
People who just generally like to feel superior to others and who don't want to consider the possibility that they have a lot less control over their health and privileged lot in life than they think have a reason.
Lots of reasons.
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Language provides such traps. We recognise mischief when we see it.
 
James Morris-Lent said:
Would you say there is sufficient evidence to assert that the condition is not mental or psychogenic? Or maybe such can't be verified or falsified? Just curious.
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The relevant point I think is that we do not have sufficient evidence to be able to say anything useful about the causation of ME, other than it must be consistent with the epidemiological data on gender ratio and ages of presentation. So no credible mechanism can be excluded.

That said, I am very uncertain that 'mental' or 'psychogenic' are useful categories. Certainly people like Michael Sharpe seem to have very confused ideas about what 'psycho-' means in the context of causation.

Used in the layman's sense I find the idea that ME is psychogenic completely implausible just on the basis of having talked to lots of people with the illness. In that sense I think we have sufficient evidence to assert that the idea of it being psychogenic is very unlikely to be true.

My impression is that as long as the debate centres around whether there is or is not evidence for the condition being 'psychological' attitudes are likely to rain polarised and unchanged. What I think the debate should focus on is the undisputed fact that even if the 'mind' is involved in ME the psychiatrists who claim to understand this in fact have no idea what they are talking about. Their theories are scientifically incoherent and their evidence is unusable at best and more likely actually disproves their speculations. It is like the surgeons doing thousands of tonsillectomies - the time has come to realise that there was never any knowledge or skill behind the practice, just marketing.

There came a point in history when the surgeons were told to stop doing tonsillectomies. At that point it also became recognised generally in the medical profession that surgeons were not very good on evidence based decision making. The same sea change is needed for psychiatry. It might be achievable.
 
Cheshire said:
What precisely makes you think it is implausible?
(BTW, on the basis of having talked to lots of people with the illness, many doctors think the exact contrary)
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The people make me think it is implausible.

When I got involved in ME research I very deliberately did not do so as a provider of care, as one of 'them'. I had taken the same approach before in 1998 with a lupus group. I was not a lupus doctor but thought my research might be relevant to lupus. I joined as an ordinary member and offered my opinions like anyone else. I made no secret of being a doctor but was nobody's doctor. I found it very useful in working out in what ways new treatments might solve real problems for patients.

Conversations between a patient and their doctor are very artificial and overlain with presuppositions on both sides. In that context it is all too easy to reinforce myths. On a forum things are quite different. People express themselves freely. I am surprised that so few doctors join. Maybe I am a bit peculiar!
 
Jonathan Edwards said:
Used in the layman's sense I find the idea that ME is psychogenic completely implausible just on the basis of having talked to lots of people with the illness. In that sense I think we have sufficient evidence to assert that the idea of it being psychogenic is very unlikely to be true.
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Can you say more about this? In your view, what would a patient with psychogenic illness be like, and how do ME/CFS patients differ from that?
 
Jonathan Edwards said:
The people make me think it is implausible.

When I got involved in ME research I very deliberately did not do so as a provider of care, as one of 'them'. I had taken the same approach before in 1998 with a lupus group. I was not a lupus doctor but thought my research might be relevant to lupus. I joined as an ordinary member and offered my opinions like anyone else. I made no secret of being a doctor but was nobody's doctor. I found it very useful in working out in what ways new treatments might solve real problems for patients.

Conversations between a patient and their doctor are very artificial and overlain with presuppositions on both sides. In that context it is all too easy to reinforce myths. On a forum things are quite different. People express themselves freely. I am surprised that so few doctors join. Maybe I am a bit peculiar!
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An interesting model for doctors who are new to a particular disease and want to specialise in it. Spend a year as a member of a patient forum for that disease and learn from patients talking honestly about their symptoms, treatments and the good and bad experiences with doctors. It would have to be a well run forum, though. Some online groups filter out bad news and only want positive uplifting stuff, or are fronts for quacks.

Would it be a good move, for example, for forums like this one to actively encourage doctors, psychologists etc to join us?
 
I'm on board with what you've said @Jonathan Edwards .
I guess I'm just wondering how best to square the need for very neutral and dispassionate presentation of scientific evidence with the reality that so many sufferers are understandably bursting to scream at the establishment that they (or their child) are not mentally ill or deluded or whatever. It might be easier to wrangle people behind a solid, common message if it allows them to scratch the itch a little bit in a way that is not counterproductive. Just some thoughts for what they're worth.
 
James Morris-Lent said:
I guess I'm just wondering how best to square the need for very neutral and dispassionate presentation of scientific evidence with the reality that so many sufferers are understandably bursting to scream at the establishment that they (or their child) are not mentally ill or deluded or whatever. It might be easier to wrangle people behind a solid, common message if it allows them to scratch the itch a little bit in a way that is not counterproductive. Just some thoughts for what they're worth.
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I think it's possible to have both passion and evidence - just not in the same section of the text. I hope the organisers of future campaigns will try to work with people like #MEAction who were set up to support exactly this kind of patient-led activism by individuals and ad-hoc groups, and who include people with the skills to do it.
 
Jonathan Edwards said:
Dear @Liv aka Mrs Sowester,
If it were a matter of reaching out to ordinary people I can see that make sense. But my concern here is a purely pragmatic one. Parents reaching out to paediatricians emotionally is pretty guaranteed to confirm the paediatrician's prejudice that the BPS people are right and parents are over-emotional. All paediatricians either have this prejudice to start with or they are already converted to the cause. Neither group is going to be won over, I fear.

I think this is what people call playing the ball not the man. If you want to achieve something it is important to keep in mind the best method of achieving it, not to be sidetracked by scoring points against enemies.
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I don't entirely disagree with you @Jonathan Edwards, but I'd imagine paediatricians must be quite used to parents being very emotional when it comes to their sick children, whatever the ailment.

I'd assume parents who are logical and unemotional when their children are very unwell are probably in quite a small minority. I know that a social worker would flag up an unemotional parent as being of concern; cold fish parent, emotionally neglectful primary carer = attention seeking child, take it into care and make it do GET for it's own good!
Damned if you do, damned if you don't, the BPS brigade will get you every which way.

It's not a letter I would write or share, attacking Esther Crawley is playing into her victim narrative and putting hyperlinks in a printed letter perhaps isn't the greatest move, but in this post-truth era emotion seems to be trumping logic fairly frequently. Hell, Esther Crawley seems to be winning over 'hearts and minds' with her appeals to emotion. The health care professionals who attend her talks aren't asking for references to back up her claims. They're falling hook line and sinker for her 'grown-ups do the right thing, granddaddy was a fighter pilot, won't somebody think of the children' simpering routine.

Maybe we're missing a trick if we only provide argument in a style that would persuade ourselves? We're already persuaded.
Maybe we should be analysing successful ME advocacy campaigns and working out the golden ratio of facts/emotion and trying to repeat that. Unrest has gone down very well with health care professionals, Jen didn't pull any emotional punches. @Robert 1973's Blowin' in the Wind was also very effective in message delivering to healthies.

Obviously persuading some groups calls for cold hard unemotional logic, NICE being the most obvious, but I reckon gently pulling the odd heartstring will help the message sink in most other settings.
 
James Morris-Lent said:
I'm on board with what you've said @Jonathan Edwards .
I guess I'm just wondering how best to square the need for very neutral and dispassionate presentation of scientific evidence with the reality that so many sufferers are understandably bursting to scream at the establishment that they (or their child) are not mentally ill or deluded or whatever. It might be easier to wrangle people behind a solid, common message if it allows them to scratch the itch a little bit in a way that is not counterproductive. Just some thoughts for what they're worth.
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I can see that and it may not be easy to find a rallying cry that suits all. My itch line would be:
'Whatever the cause of ME the psychiatrists in charge of services have absolutely no clue what they are talking about and their hijacking of the services is nothing more than a scam. And that view is based on standard analysis of quality of medical evidence. It is an abuse of human rights to encourage treatment based on no valid evidence. They are nothing more than shamans using pseudo-scientific language. Anyone who takes them seriously has no understanding of critical thinking in medicine and is guilty of assigning patients to the dustbin. If their spouse or child is afflicted by the illness they will come to think differently.'

But it would be no good a parent sending that to a paediatrician. I might enjoy saying it on a BBC documentary but the BBC chaps seem to be frightened of doing it.

Maybe in some different way it would be useful to tell paediatricians to be aware that it has now been established in clearly written published reviews that the current recommendations for management of ME in the UK (which have been withdrawn in the US) are not based on any valid science or evidence. What is needed instead is a support service that treats people with respect and focuses on practical help.
 
Liv aka Mrs Sowester said:
I'd imagine paediatricians must be quite used to parents being very emotional when it comes to their sick children, whatever the ailment.

Maybe we're missing a trick if we only provide argument in a style that would persuade ourselves? We're already persuaded.
Maybe we should be analysing successful ME advocacy campaigns and working out the golden ratio of facts/emotion and trying to repeat that. Unrest has gone down very well with health care professionals, Jen didn't pull any emotional punches. @Robert 1973's Blowin' in the Wind was also very effective in message delivering to healthies.
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Yes, paediatricians are used to emotional parents (as I was when in this role). But we should not confuse appropriate emotional distress, which is the same for ME or leukaemia, with emotional advocacy. Doctors develop very well rehearsed ways of separating these out. Emotion needs to be kept out of decision making. The biggest mistake I made was to agree with an emotional mother that perhaps her son should try CBT. I was right to respond to her emotion in terms of trying to help but wrong to allow that to override the need to check that the treatment was valid.

You say Unrest has gone down well with health professionals but I wonder what that means. I suspect lots of health professionals will have commended the film for it courage and skilled construction. But I have not noticed any change in colleagues views based on the film. It is not as if at the NICE meeting all the psychiatrists turned up saying 'we realise now we were so wrong, after seeing that film'. Health care professionals involved in ME will agree that ME needs more attention, but I doubt it even crossed their minds when watching that they should do any soul searching. And when it came to the science, I am afraid the film was very thin and rather misleading, and medics will have noted that. I have not heard Robert's song but I can imagine it may have a significant impact on healthy people - but again I doubt it will change the way health professionals see what they do.

The really successful advocacy campaign was Alem's. Alem has completely transformed the perception of CBT and GET within the medical academic world - at least that part of it that is aware of the story. Psychiatrists at NICE were sitting a little nervously in their chairs because of Alem, not because of Jen. Paediatricians were being a little more cautious about what they said, because of Alem - and Keith and Tom and Robert and Carolyn W and all the others involved. The CMRC has changed its spots because of Alem and Simon. Academics at QMUL regard PACE as a 'complete bloody disaster' because of Alem et al.

I think the problem is that PWME and their carers are in a unique double bind. Emotional advocacy is seen as evidence of irrationality. Something of the same applies to new hi-tech treatments for children with brain cancer but with ME it is an almost complete Catch 22. That is no doubt really hard to cope with but that is where we are at the moment.

In a sense I would suggest a letter to Paeditricians should be just one sentence:
'Have you read the Journal of Health Psychology volume on the PACE trial - we think you would find it interesting.'
 
strategist said:
Can you say more about this? In your view, what would a patient with psychogenic illness be like, and how do ME/CFS patients differ from that?
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It is complicated because there are all sorts of situations that might fall under 'psychogenic illness'. As a doctor I recognised at least four quite different situations. They are real, but bear no resemblance to ME. The key point is that when symptoms or signs are influenced by thoughts in various ways it is usually fairly easy to trace consistent patterns of behaviour and speech that fit with that. You do not need a degree in psychology. In fact a degree in psychology seems to blind people to sensible analysis. The way people talk on this forum makes absolutely no sense in terms of 'psychogenic illness'. Some people seem to have rather crazy beliefs about the cause of their illness but all of them stem from doctors of some sort or another. And people with every type of illness can have crazy beliefs about the cause.
 
Jonathan Edwards said:
In a sense I would suggest a letter to Paeditricians should be just one sentence
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I would send them this link:
http://voicesfromtheshadowsfilm.co.uk/

"“Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections."
 
Jonathan Edwards said:
The CMRC has changed its spots because of Alem and Simon. Academics at QMUL regard PACE as a 'complete bloody disaster' because of Alem et al.
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Is this quote attributable to anyone? I would love to be able to quote this.

Liv aka Mrs Sowester said:
I
Unrest has gone down very well with health care professionals, Jen didn't pull any emotional punches. @Robert 1973's Blowin' in the Wind was also very effective in message delivering to healthies.
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The song has had quite a few views but it seems to have struggled to get beyond the ME community bubble. Most to the people who have commented, liked or shared it seem to have been people with ME.

Where Jen has succeeded is in getting the message beyond the ME community. I agree with Jo about the importance of the work done by Alem and others who have challenged the flawed science, but I don’t think we should underestimate the importance of other forms of advocacy. Without the science, other approaches would be far less effective, but the two approaches are symbiotic. My song was an attempt to spark interest in the medical and scientific issues. Unrest is enabling ME researchers to connect with medical students at Q&As etc.
 
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