Private Eye - ME Cluster Bomb

[Hilary]

MD acknowledges there is a huge need for "definitive tests and effective drug treatments". He admits he has been guilty of the same prejudices that are still so prevalent (yes yes!! a convert?!), that ME is a very serious,disabling illness with a biological basis and that CBT is not a cure. He also acknowledges that some people just CANNOT increase activity no matter what, and that there is a group of the severely affected for whom there is currently no help at all.

As far as his references to CBT and managed activity are concerned, from what I have seen over 23 years, some people do appear to recover (even if they retain a susceptibility), especially young people, and this seems more likely if they 'manage activity levels' - in other words, pace themselves rather than trying to keep pushing. (I think the words 'managed activity' have unfortunate connotations... a whiff of compulsion or something?) My own experience also tells me that better sleep tends to lead to a general improvement - and for me anything that helps improve sleep is a Good Thing

I agree with @TiredSam that it's a good article - there are other things he could've said (such as adding a critique of 'faulty illness belief' CBT) but he presumably had limited space, so on the whole, yes, I'm giving him the benefit of the doubt.

And ah delightful irony - I subscribe to PE for my brother in law's Christmas/birthday present. He has been an ME sceptic (though I think he is also approaching conversion) - I shall now point him in the direction of this article..

 

[Jo Best]

It's damage limitation I think. He's had some response to his recent interview with Esther Crawley and has been working with her at the CFS clinic for quite some time. I think his reputation and popularity are important to him as he has a long career in entertainment as well as medicine. I used to enjoy his TV series 'Trust Me I'm a Doctor' and I think he's too smart to appear to be stuck in the dark ages and that he's well aware how disarming it is to 'admit' he got it wrong as a young doctor, after all, that wasn't his fault, and he is currently seeing paediatric patients, whose parents will be aware what he's saying and how he's presenting in the public eye.

 

[Barry53]

Sounds pretty delusional to me. And it's typical of BPS propaganda to emphasize how serious and disabling the disease is, while still slipping in CBT and GET as effective treatments.

No, I do not see it meaning that. I think he is simply saying that for those people who have the luck to be able to recover anyway, then CBT may assist them in that, even though it cannot cure ME.

Also, if someone is again lucky enough to self-recover anyway, then they will of course increase their exercise as they get well enough to do so. I do feel however that his phraseology is a little double-edged re this, because it sort of hints that the increasing exercise might be the cure, rather than the simple fact it is an inevitable consequence as auto-recovery progresses.

But overall, cautiously encouraging. Maybe he is also trying to separate himself from the embarrassing EC. Peer pressure?

 

[Barry53]

It's damage limitation I think. He's had some response to his recent interview with Esther Crawley and has been working with her at the CFS clinic for quite some time. I think his reputation and popularity are important to him as he has a long career in entertainment as well as medicine. I used to enjoy his TV series 'Trust Me I'm a Doctor' and I think he's too smart to appear to be stuck in the dark ages and that he's well aware how disarming it is to 'admit' he got it wrong as a young doctor, after all, that wasn't his fault, and he is currently seeing paediatric patients, whose parents will be aware what he's saying and how he's presenting in the public eye.

If it helps show EC et al in their true colours, then frankly I don't care. Whatever his motives, the effect is right.

 

[Barry53]

And ah delightful irony - I subscribe to PE for my brother in law's Christmas/birthday present. He has been an ME sceptic (though I think he is also approaching conversion) - I shall now point him in the direction of this article..

PE is great at getting a serious message across via one of the most potent of mediums - satirical humour. It could possibly achieve considerably more than any formal article. And it will reach a very different readership demographic. Excellent PE! (and Dr Hammond).

Edit: I did not clarify. The satirical humour here is in the title .

 

[TiredSam]

It's damage limitation I think. He's had some response to his recent interview with Esther Crawley and has been working with her at the CFS clinic for quite some time. I think his reputation and popularity are important to him as he has a long career in entertainment as well as medicine. I used to enjoy his TV series 'Trust Me I'm a Doctor' and I think he's too smart to appear to be stuck in the dark ages and that he's well aware how disarming it is to 'admit' he got it wrong as a young doctor, after all, that wasn't his fault, and he is currently seeing paediatric patients, whose parents will be aware what he's saying and how he's presenting in the public eye.

I appreciate your viewpoint. I had never heard of Phil Hammond until a few weeks ago so don't know his history before he came to my attention with the radio interview. If he's being as devious as you suggest, then he's made so many concessions that he may as well have thrown in the towel, and why choose Private Eye? But of course we can't ever let our guard down given the history of ME and how we have been treated, so your viewpoint is an important one.

Personally, with all this Thanksgiving fuss going on at the moment I was thinking I may as well get into it too, and had been looking for a turkey to pardon all day when Phil Hammond came along ...

 

[Esther12]

This avoided all the important stuff. There's no criticism of Crawley for the misleading claims she's made about the efficacy of CBT/GET. That's what matters. Whether they happen to class ME as 'physical' or 'psychological' doesn't alter the main problem of patients being misled about the treatments available to them.

 

[Forbin]

Any idea why this is called "ME Cluster Bomb"? Going in, I thought is was going to turn out to be a reference to the ME "cluster" outbreaks, but apparently not.

Decent enough summation, although I would once again contest the idea that the dizziness seen in ME is solely due to hypotension. Nuerological damage, the chronic presence of nuerotoxins, or perhaps even vaso-constriction to the inner ear could be at play, especially if you're still dizzy while sitting or even lying down.

 

[Sean]

It's damage limitation I think.

This avoided all the important stuff.

Yes, and yes.

I appreciate the article and Hammond's mea culpa. We could do with a lot more of that from across the board, and the changes of position have to start somewhere, sometime.

On the other hand, I am cynical about his timing and the purity of his motives. The time we needed this kind of acknowledgment and support was 2-3 decades ago. This is not a particularly brave or noble act at this point in the proceedings, when it is obvious to all with a dozen healthy neurons and a nanogram of integrity that the BPS school are about to be torn to pieces by the reality of their own shitty history, and he should not be given too much credit for switching sides now.

So, a genuine thanks, but it also only scores a bare pass in my book.

 

[TiredSam]

This avoided all the important stuff. There's no criticism of Crawley for the misleading claims she's made about the efficacy of CBT/GET. That's what matters. Whether they happen to class ME as 'physical' or 'psychological' doesn't alter the main problem of patients being misled about the treatments available to them.

There's an argument to be made for keeping it impersonal and not naming names, it makes the article look more professional and objective rather than risking looking like personal mud-slinging from someone with a grudge, leaving the reader who doesn't know much about it scratching their head and wondering who's right. A follow-up article about Crawley or PACE would be nice, which is why I think heaping on the appreciation and praise might be the best move now.

Crawley will now have people coming to her waving this article and she'll be put into the position of having to dismiss her own colleague's views in the same way she dismissed Fluge & Mella, and looking more and more ridiculous in the process.

But I agree that there should be a big red public warning about Crawley somewhere and she should be banned from going anywhere near children (or anyone for that matter, in the course of her practice or otherwise).

EDIT: Private Eye have a letters page ...

 

[Skippa]

Hurrah for Ian Hislop signing this off - small steps peeps.

Can all you letter writers with PACE fiasco breakdowns perhaps write to Ian Hislop? Spell out the wrongdoings, he seems to relish poking holes at the establishment and getting in legal hotwater.

Maybe he'll do that if enough folks paint a big enough target?

Im heard he finally took to twitter too... they sometimes take the piss out of him for it on HIGNFY

 

[trishrhymes]

I agree it's a great first step in a process. A mea culpa from someone who actually specialises in ME/CFS with children is very important. We may quibble with some of it, as I have done, but it's a giant step in the right direction. We also have to remember that readers will on the whole no nothing about the political / psychiatric story underneath this and there's a limit to what can be said in a single page.

I also think it's a great idea to contact PE / Ian Hislop and Dr Hammond, to both thank them, and point them in the direction of David Tuller. PACE and FITNET would make a great next story, and they might even be persuaded to name names.

 

[Jonathan Edwards]

This seems a well balanced article in general. However, as time goes by I tend more and more to think that the central problem in ME treatment is a false belief by therapists that there is something called 'cognitive behavioural therapy'.

Hammond says: 'Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn’t itself a cure.'

Surely what can establish good sleep routines is advice on good sleep routines, provided in the context of an explanation about the problem of PEM as a very real phenomenon. (If PEM is not real what is the justification for sleep regimens?) This is no different from my telling people with psoriatic knee arthritis to avoid cycling because it seems to make it worse, or people with ankylosing spondylitis to sleep on their stomach with no pillow to keep the back straight at night. Advice on sleeping position is the main reasons why you almost never see people bent double with spondylitis these days in the way one did in the 1970s. This is not Cognitive Behavioural Therapy, it is what doctors are routinely paid to do - to provide useful advice based on acceptance that without it real disability threatens.

Over the years I hardly ever referred patients to pain management clinics or clinics for CFS management because what they seemed to offer was 'a multidisciplinary therapy programme' led by a psychologist when what I thought the patient needed was sensible advice from someone with long term experience of the clinical problem. Hardly any of the psychologists had long term experience because they were all fresh graduates who would fairly soon give up trying to be a psychologist and do something else.

CBT as I understand it is supposed to be a specific technique for altering people's ways of thinking. If patients have already been given a leaflet giving a sensible description of the illness then why would one then need to change a way of thinking? If internet CBT did work that would seem to suggest that the traditional therapeutic interview is actually unnecessary. So what is the specific technique? My sense is that in trying to sell CBT to a wider audience through the internet that the enthusiasts may soon be demonstrating that there was no such thing in the first place. What about giving people an instruction book and then just sensible answers to questions when they arise. It begs the question why Standard Medical Care was so bad in PACE. Presumably because there were no appointments where patients could have sensible answers to questions (which is how Hammond seems to be painting CBT anyway).

Maybe someone should thank Dr Hammond for a balanced article but whisper in his ear that there is actually no such thing as CBT - or at least no proven special technique for ME/CFS that requires 'proper training'.

 

[trishrhymes]

@Jonathan Edwards thank you for this. My thoughts exactly.

I think your good self would be the perfect candidate for the someone to whisper that message in Dr Hammond's ear. Please, please send this to Private Eye and to Dr Hammond. It would make a very good letter for Private Eye to publish.

 

[taniaaust1]

Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn’t itself a cure.

Though a good article and step in right direction, one can see he still hasnt got his head out from the past wrong biases he had when he talks about CBT establishing "recovery routines". That's a wrong choice of words.

Id like to hear how does CBT actually help one to recover from ME/CFS??

yes it helps for anxiety but I cant see how it aids recovery from ME/CFS. At best IF it focused on changing the right things, it would just stop people from the push/crash cycle and from making themselves worst.

@Jonathan Edwards great comment. So true

They dont send people to CBT who have broken a leg and need to learn to use crutches, it makes little sense that ME/CFS patients arent just given good advice that doctors usually give for eg sleep or whatever. There is nothing wrong with our actual thinking.

 

[Chrisb]

This article is interesting in the context of the radio interview with Crawley. At the time I thought he was pushing her in directions and further than she was happy to go. Hard to put a finger on it, just the feeling I had. At the time I dismissed it as merely being part of a rehearsed script, with him playing Devil's advocate. It may not have been so.

 

[user9876]

This avoided all the important stuff. There's no criticism of Crawley for the misleading claims she's made about the efficacy of CBT/GET. That's what matters. Whether they happen to class ME as 'physical' or 'psychological' doesn't alter the main problem of patients being misled about the treatments available to them.

I did think he was repeating claims about CBT and Crawley's theory that they work due to hormone changes.

I got the impression he was confused between people improving and doing more and a doctor telling them to do more as they were feeling better and claiming that it is the doctor that is helping.

 

[JoanDublin]

This seems a well balanced article in general. However, as time goes by I tend more and more to think that the central problem in ME treatment is a false belief by therapists that there is something called 'cognitive behavioural therapy'.

Hammond says: 'Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn’t itself a cure.'

Surely what can establish good sleep routines is advice on good sleep routines, provided in the context of an explanation about the problem of PEM as a very real phenomenon. (If PEM is not real what is the justification for sleep regimens?) This is no different from my telling people with psoriatic knee arthritis to avoid cycling because it seems to make it worse, or people with ankylosing spondylitis to sleep on their stomach with no pillow to keep the back straight at night. Advice on sleeping position is the main reasons why you almost never see people bent double with spondylitis these days in the way one did in the 1970s. This is not Cognitive Behavioural Therapy, it is what doctors are routinely paid to do - to provide useful advice based on acceptance that without it real disability threatens.

Over the years I hardly ever referred patients to pain management clinics or clinics for CFS management because what they seemed to offer was 'a multidisciplinary therapy programme' led by a psychologist when what I thought the patient needed was sensible advice from someone with long term experience of the clinical problem. Hardly any of the psychologists had long term experience because they were all fresh graduates who would fairly soon give up trying to be a psychologist and do something else.

CBT as I understand it is supposed to be a specific technique for altering people's ways of thinking. If patients have already been given a leaflet giving a sensible description of the illness then why would one then need to change a way of thinking? If internet CBT did work that would seem to suggest that the traditional therapeutic interview is actually unnecessary. So what is the specific technique? My sense is that in trying to sell CBT to a wider audience through the internet that the enthusiasts may soon be demonstrating that there was no such thing in the first place. What about giving people an instruction book and then just sensible answers to questions when they arise. It begs the question why Standard Medical Care was so bad in PACE. Presumably because there were no appointments where patients could have sensible answers to questions (which is how Hammond seems to be painting CBT anyway).

Maybe someone should thank Dr Hammond for a balanced article but whisper in his ear that there is actually no such thing as CBT - or at least no proven special technique for ME/CFS that requires 'proper training'.

Well said! I've always said it doesn't take a genius to give good advice to a patient. All it takes is a conversation and maybe even a leaflet to help remember the advice. End of.

CBT is entirely inappropriate for this patient cohort or indeed ANY patient cohort. And I'm saying this as someone who has written CBT manuals for working with those who have addiction issues. The manuals demystify CBT and allow ANY appropriate adult to use the techniques to help someone with addiction issues - practical things like avoiding triggers, recognising unhelpful behaviours, putting some safeguards in place, keeping diaries, etc etc. There is no magic here. Just practical tips for people WANTING to change their behaviours around addiction issues.

Anybody who still believes that CBT can be useful in managing ME gets the thumbs down from me. Its so inappropriate, it's hard to know where to start. It's more of the double speak that only serves to confuse and obfuscate.

 

[UKmum]

I like this article. Dr Hammond is well known for assisting whistle blowing in the NHS and his focus is usually on patients taking more control and being assertive.

He seems well liked by parents of children with ME that he sees ( AYME forums). Prescribing the children with 5 a day of fun activities and helping with the pressures from school.

I think its important to remember he is seeing mainly young adolescents and that not all of them take sensible advice on pacing or anything else from parents or read information leaflets that they are given. (or is that unique to me?) The service that Dr Hammond is working in provides as standard care a roughly 6 weekly skype or meeting with a specialist- usually an OT to try and help with baselines and activity management. CBT gets thrown in to help with any anxieties that get identified and help the kids deal with those anxieties. My son ended up having 3 sessions and came away with learning square breathing which helps when he gets frustrated. His sessions didn't even touch on changing his thoughts about his illness. It was all about recognising emotions. He quite enjoyed the sessions as the therapist was young and attractive and he doesn't get out much.- sorry that sounds rather flippant but its true. The CBT therapist knew nothing about ME/CFS.

 

[A.B.]

This seems a well balanced article in general. However, as time goes by I tend more and more to think that the central problem in ME treatment is a false belief by therapists that there is something called 'cognitive behavioural therapy'.

It seems to be more of a brand than anything else. At best a fancy term for sensible advice. Yet therapy implies that there is some dysfunction in the thinking of the patient. I don't see anything more than ordinary reactions to the combination of a serious illness, uncertainty and having an illness of low status. Unreasonable optimism and wishful thinking also seems to be common, but CBT seems to try and reinforce that rather than getting patients down to reality. In any case, that also seems to be more a result of a lack of experience and knowledge.

For a therapist who has no insight into what it means to be ill this may be difficult to understand however.