HAS ANYONE ONE SEEN /Chronic Fatigue Syndrome: Not Just Tired All The Time! - Dr Alistair Miller ON

[Kyla]

As to Miller, I am personally not a fan.

He could easily rephrase CBT/GET "may" help some patients to CBT/GET may cause harm to some (many) patients.
And as a representative of an ME charity, I think that it should be his duty to try to at least present that info as a possibility.
There is a reason Action for ME is largely loathed or viewed as irrelevant by many ME patients

 

[Eeyore]

I wasn't really referring to CBT for cancer fatigue, but just in general. I don't know if it helps. I'd bet a lot of us don't know for sure that supplements we take help. Still, if I had cancer, and there seemed any chance it might help, I'd do it. And I'd do the surgeries, chemo, radiation, healthy diet, etc.

I do not think CBT has potential to harm patients (unless it is focused on "false illness beliefs"). I don't think it has potential to cure ME, but rather I think of it more like taking an advil. It's not going to cure anything but it might put a small dent in symptoms. Or not.

GET could be more harmful to patients - I think patients who feel worse on it should immediately stop. Maybe try restarting at a lower level, but if it just doesn't work, it just doesn't work. I have no illusions that it could get you back to normal. I wonder if perhaps it might get a few percentage points back in some. It might also cause harm in some. Depending on a patient's experiences, it might be worth trying.

 

[Esther12]

I wasn't really referring to CBT for cancer fatigue, but just in general. I don't know if it helps. I'd bet a lot of us don't know for sure that supplements we take help. Still, if I had cancer, and there seemed any chance it might help, I'd do it. And I'd do the surgeries, chemo, radiation, healthy diet, etc.

I think that CBT for 'cancer' has become seen as disreputable, and 'cancer faitgue' is something therapists and researchers are now fleeing to.

I don't take supplements, and don't like doctors who advise patients to do so in the absence of good evidence of benefit. There's always a chance that quackery might help, and that's how quacks go on making money; but patient's desperation doesn't legitimise the way in which they make their money.

I do not think CBT has potential to harm patients (unless it is focused on "false illness beliefs"). I don't think it has potential to cure ME, but rather I think of it more like taking an advil. It's not going to cure anything but it might put a small dent in symptoms. Or not.

There's really only one sort of CBT for CFS that can claim to be 'evidence based' (even if the evidence is dire):

"CBT was done on the basis of the fear avoidance theory of
chronic fatigue syndrome. This theory regards chronic fatigue
syndrome as being reversible and that cognitive responses
(fear of engaging in activity) and behavioural responses
(avoidance of activity) are linked and interact with
physiological processes to perpetuate fatigue."
[From the PACE trial Miller mentioned in his talk]

I have no illusions that it could get you back to normal. I wonder if perhaps it might get a few percentage points back in some. It might also cause harm in some. Depending on a patient's experiences, it might be worth trying.

Those conducting the PACE trial claimed that 28-30% of patients got back to normal following CBT and GET. Although because of the way they played with the presentation of results, patients could report a worsening of symptoms and yet still be classed as "back to normal". Miller gave a quote to promote their results:

Dr Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:

"Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME.

"It is clearly vital to continue our research into biological mechanisms for ME/CFS but recent 'false dawns' for example, over the role of retroviruses (XMRV) have shown how difficult this can be. In the current absence of a biomedical model for the causation and the absence of any pharmacological intervention, we have a pragmatic approach to therapy that works and we should use it."

I suspect that Miller is foolish enough to believe that this is true: "This trial represents the highest grade of clinical evidence a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported."

Graham did some videos on the PACE trial that could be of interest to people new to this: https://www.youtube.com/channel/UCvWxvwftcLjIQniW3Dgzm5w

 

[Eeyore]

I think that CBT for 'cancer' has become seen as disreputable, and 'cancer faitgue' is something therapists and researchers are now fleeing to.

If you want to use that standard, then every single treatment used for ME is seen as disreputable. There is simply no good, evidence based treatment for ME - and yet people try lots of things because they want to feel better, and I'm convinced some things I do help me, even if they don't help enough to get me back to normal.

Benson's stuff is pretty rock solid - but he doesn't do CBT. He does meditation / parasympathetic response stuff. His work has the most compelling evidence of any self-help kind of treatment by far. They've found it does help with relief of symptoms from cancer chemo, but as far as I know he doesn't claim it extends life in cancer. The point is that there is a mind-body connection though, and hence, there is reason to believe that psych interventions could be helpful. He's also the first to tell you not to skimp on the real medical and surgical options - but rather to add to them.

There's also very good evidence that stress correlates with increased bp and increased cardiovascular mortality and morbidity. Again, a mind-body connection.

I think the claims of the CBT/GET camp are really overblown in ME. At best they have weak evidence for CBT and GET, and it might even be harmful when done a certain way. I just think that people on these forums, including me (although I don't know about you) use lots of therapies that have no proof because we aren't about to wait for the studies that no one will bother funding anyways. I don't think it's completely unreasonable for someone to try it though (again, minus the "illness belief" stuff) - and don't do GET to an extent that hurts you.

 

[Esther12]

The point is that there is a mind-body connection though, and hence, there is reason to believe that psych interventions could be helpful.

That can be used as an excuse to sell psychological therapies to anyone though... and it has been used as an excuse for a lot of quackery over the years.

I just don't like it when people make money from claiming to be able to treat patient's health problems when there is no good evidence that they can. It doesn't matter if it's supplements, CBT, meditation of anything else, I think it's shameful and that those with health problems deserve better.

 

[Hutan]

oN YOU TUBE the bit where he talks about the notion that me is purely physical is an 'extreme' and harms patients' is v v annoying. He presents himself as 'so reasonable' - makes me FUME .

I had the same reaction Shahida. He is so reasonable. I started thinking, oh, he knows what he is talking about.

I had a little doubt when he mentioned the Royal Free outbreak where some people were disabled 'for months after' (well, actually the rest of their lives I think). But that was a little quibble.

Then he mentioned how some patients insist on keeping searching for a cause. And how that is a bad prognosis for the future. Which smacked of paternalism - just accept your diagnosis, do your CBT course and be quiet. (Never mind that we don't have any real treatment for you.) But even that I was prepared to ignore on the basis that I am a bit paranoid about these things. Because he just does seem so reasonable.

But then he presented the PACE trial as evidence of the utility of CBT and GET. This is an ME specialist who works for an ME charity as their medical advisor. And he hasn't bothered to read the fine print of probably the most influential study on ME treatment up until that time (or the criticisms of it made by patient advocates). Or, if he has, he hasn't understood the implications of it.

Miller presented little (no?) evidence about the physiological differences found between healthy people and people with ME. The people he mentioned as having ME were athletes and business people who pushed themselves. I am sure a person with no knowledge of this illness, hearing this talk, would leave with the impression that people with ME are at least partly to blame for their illness and it's partly psychogenic.

Yes, @Eeyore, your points in his defense are valid and well made. But I also think it is reasonable to be disappointed and even annoyed with Miller's talk.

 

[Eeyore]

To be clear I'm not saying he's ME doc of the year, but he's no Simon Wesseley either.

 

[Wildcat]

.
Wessely/White/Sharpe's CBT (and GET) for CFS IS based on 'false illness beliefs', and the discredited deconditioning model.

Alistair Miller is one of the doctors who maintain the foundation of the construct of 'CFS' as false illness beliefs, and maintain the tyranny of the PACE Trial in patient care and treatment in the UK.. Action for ME did not have to make him Medical Director of the charity, but they did.



Peter White, Esther Crawley and Alistair Miller respond to calls to adopt the Canadian Concensus Criteria in the UK, 2011. They won't accept it.
(Please Note: Their arguments are weak. Accusing the CCC of being "vaguely worded" is an astonishing statement, considering the disturbingly vague diagnoses that take place via the Oxford Criteria, the NICE Guidelines, UK clinics, and UK GPs. Not to mention the appalling misdignosis rate. Anyway, we cannot expect Peter White, Esther Crawley or AFME Medical Advisor Alistair Miller to accept the CCC, or the ICC, anytime soon.)



http://www.meassociation.org.uk/201...ose-cfs-british-medical-journal-18-july-2011/

Use of the Canadian criteria to diagnose CFS, British Medical Journal, 18 July 2011
From ‘Rapid Responses’, British Medical Journal, 18 July 2011

Will adopting the Canadian criteria improve the diagnosis of chronic fatigue syndrome?

Esther M Crawley, Consultant Senior Lecturer Alastair Miller, Peter White
University of Bristol

 

[K22]

No-one in UK says Miller is a 2nd Wessely - despite he along with Stephen Hokgate & Esther Crawley writing with others to the times newspaper in defence of Wessely getting an award for his bravery when our wonderful countess of Mar etc criticised that. I think that alone shows which side of the fence he's on & it isn't really sick patients, it's the UK establishment approach to "CFS" . It's not extremist to be a mother of a 7 yr old sick child & maintain their being sick post mumps is not a mixture of mind & body or the psychsocial but a physical response. We need drs to uphold this is primarily a physical illness and the fact that AFMEs advisor doesn't as well as missing out all research findings including the VO 2max test in talks he gives to perpetuate the UK MUS BPS get/cbt approach is a big issue afaic.

 

[Scarecrow]

I see nothing Dr. Miller says that suggests that he doesn't believe ME is a real, organic illness.

I'm not so sure. Just because he refers to 'real' illness doesn't mean he thinks it isn't psychogenic.

I watched this again last night and paid closer attention than I had a few months ago. I tried to post last night but I somehow got logged out and lost it. Never mind - Esther12 and Hutan made the points about PACE and Miller's support far more ably than I would have done.

There were a couple of things I noticed that I hadn't before.

Near the beginning of the lecture, he talks about the names by which ME/CFS has been known in the past. He refers to neurasthenia but in the transcript (which is more properly a script that he loosely kept to), there's an additional reference to effort syndrome. This doesn't seem to be an earlier name for ME/CFS; it's a 'neurotic' version of angina.

Also, towards the end of the lecture, there is a slide that contains 'perpetuating factors', which he doesn't read out.

I'm afraid that his view of ME/CFS is BPS through and through, but packaged up to seem ever so reasonable. His subtlety allows him to hedge his bets and the beauty is that he'll never be wrong. Well, not as wrong as Wessely, White, Chalder and Sharpe.

It's strange that this lecture was delivered only a few months ago but except for the mention of XMRV and PACE, it may as well have been 15 years ago. Why the emphasis on no biomarkers, no consistent lab findings without mentioning the potential of b cell depletion? I mean think about it. You've been unable to substantively help your ME/CFS patients for decades, suddenly a drug opens a door that will lead to an eventual understanding about biological underpinnings of the disease. Yet all you've got to say is 'no biomarkers', 'no lab findings'. What about the future? Open your eyes, man!

 

[Bob]

He does come across as very reasonable, doesn't he, or he would to any casual observer, and it's definitely not the worst presentation that I've seen, but he's got some of his facts wrong, which is a bit concerning considering his influence and position.

He says that there were "multiple endpoints but consistent effects" in the PACE trial, but that's not the case; CBT failed to improve any objective outcomes, including both measures of physical capacity (6MWDT & fitness test) and employment data etc.

He also didn't mention the lack of general data available with regards to harms from CBT/GET, as highlighted in the most recent Cochrane review re exercise therapy. And he didn't mention AfME's surveys or the MEA's latest in-depth qualitative survey re patients' experiences, which demonstrate the harm caused by GET in clinical settings.

And he didn't mention the very large study of England's specialist clinics which demonstrated that CBT/GET do not improve physical function in clinical settings, or the latest Cochrane review (re exercise therapy) that showed that there was no improvement in physical function at follow up, or the Cochrane review that showed that there was no improvement in objectively measured physical capacity which contradicted the self-report measures indicating modest improvements (in non-blinded trials).

And he didn't mention the FINE trial. And he didn't mention that CBT/GET have no evidence-base with regards to severely affected patients.

Or that the PACE trial did not recruit using the NICE criteria that require PEM, but investigated chronic fatigue (which he'd already stated is not the same as ME/CFS, earlier in his presentation).

And the ridiculous discussion re physical vs psychological was clearly influenced by third parties, and perhaps designed to keep all parties sweet.

And then there's all the biomedical research that he could have mentioned.

So, yes, it was a one-sided presentation. He's bought into the propaganda.

 

[worldbackwards]

I have a rule with this - if you can't quite tell who's side someone's on, it probably isn't ours.

 

[hamster336]

'Fudging' is a hallmark of the BPS argument....which is ironic as anyone who's been through their CBT knows that you are asked to constantly clarify your beliefs until you don't believe them.

 

[Eeyore]

Well, as I said above - the ONLY thing I know about the man is from that video, and he sounded quite reasonable to me. I've never heard of him before - he's not that prominent outside the UK. So maybe he's an unreasonable man who gave a reasonable presentation? I don't know...

Also possible is that he's changing his tune as ME is more accepted (if Dr. Edwards is right that it's shifting). I've watched Wesseley do some backpedaling lately too. Maybe Miller is reasonable now, but wasn't in the past, and some anger is targeted at his past positions. Even Wesseley no longer denies that there is an organic component to the disease.

Maybe he's harmed more of you in the UK over the past however many years and that is an open wound which I don't have, having just heard of the man.

 

[Bob]

Well, as I said above - the ONLY thing I know about the man is from that video, and he sounded quite reasonable to me.

I agree that he sounds reasonable, except for the information that he left out, and the unbalanced/one-sided portrayal of the evidence as it relates to CBT/GET, and the nonsense about the dualistic (i.e. no clear boundary between physical and psychological) approach to disease (although he didn't use that term himself). He also failed to describe severely affected patients, and why GET may be dangerous for them. His description of his patients and his approach to therapy sound reasonable, albeit within the severe boundaries set by NICE. But the blanket recommendation of CBT/GET for all patients, with a misleading portrayal of the therapies' usefulness and safety, is unhelpful. On a positive note, he does recognise the importance of PEM, and he acknowledged the difference between ME/CFS and chronic fatigue, which is useful.

 

[Wildcat]

.
The assessments by astute UK patients of a doctor who has historically, and continues to, support and promote the UK psychosocial policy, has nothing to do with "anger" or "open wounds". Its insulting UK patients' intelligence to suggest that.

As you say Eeyore, you had never heared of Alistair Miller, or read anything by him or about him before.

Also, the hallmark of CFS psychosocial communications is vague, reasonable sounding, and well worn double speak, which patients in the UK are all too familiar with.

I don't think Dr Miller is changing his mind about ME, or accepting the importance of the established biomedical research (which he never refers to) or about the CCC or ICC. If Dr Miller was changing his tune, he would surely mention the more recent bioresearch breakthroughs. Instead he treads his old path of vagueness and platitudes.

 

[Eeyore]

I do think a mention of the rituximab trials would have been warranted, even if only a brief one. It's not that preliminary any more - the phase 2 is done, and they are in phase 3.

I also agree that he did have a lot of vagueness, and that there was not much in the presentation that we didn't know already 10 or even 20 years ago.

In general, I'm not a mind-body dualist - and that's not an ME specific thing. I don't think it really makes sense to separate the body into mind and body and believe it's a false dichotomy. I also think psychology and neurology should be combined into one specialty - and believe this will happen with time as we understand more about the biochemistry of the brain. We call some diseases psychiatric and others neurological, but who is to say schizophrenia is not a neuro diseases or alzheimers is not a psych disease? Why have 2 specialties that study the same thing, the brain? I'm even critical of the current approach of medicine that separates the body into systems (cardiology, hematology, dermatology, etc.) I think it often obscures the truth because docs are only looking at one part of a complex machine in which there are many, many interactions.

I suppose I'll just drop this as you guys seem to know a lot more about his history than I do.

That said, I'm still 100% behind Julia Newton. Her research is impressive and cutting edge. It's important we focus not just on treatments such as rituximab but also on mechanisms of disease propagation.

 

[Valentijn]

There are actually studies suggesting psych therapy can improve survival in cancer.

And other studies show that's a bunch of bullshit:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2858800/

Additionally, the CBT used in "real" diseases is aimed at coping. Like most apparent "fence-sitters", Dr Miller does not clarify that the CBT usually used in ME is designed to convince us that we aren't ill.

 

[whodathunkit]

I agree there has been a push for CBT in the UK that we haven't seen in the US. Part of this is because you have socialized medicine and we do not, so treatments are very much more standardized, whereas in the US doctors can set their own courses to a much greater degree.

Another problem is that they are running out of money. Behaviorial therapies are much cheaper than looking for a physical cause or even administering most pharmaceuticals.

 

[Bob]

In general, I'm not a mind-body dualist - and that's not an ME specific thing. I don't think it really makes sense to separate the body into mind and body and believe it's a false dichotomy. I also think psychology and neurology should be combined into one specialty - and believe this will happen with time as we understand more about the biochemistry of the brain. We call some diseases psychiatric and others neurological, but who is to say schizophrenia is not a neuro diseases or alzheimers is not a psych disease? Why have 2 specialties that study the same thing, the brain? I'm even critical of the current approach of medicine that separates the body into systems (cardiology, hematology, dermatology, etc.) I think it often obscures the truth because docs are only looking at one part of a complex machine in which there are many, many interactions.

But Alzheimer's is not a behavioural illness. And that's the difference between what you are suggesting and what the psych-lobby are advocating. They would have us believe that medically unexplained symptoms (e.g. ME, fibro IBS, chronic back pain) are perpetuated purely by maladaptive cognition and behaviour. (Aside: MS was categorised as a neurotic illness once.) So their discussion isn't purely related to whether some diseases should be categorised as neurological or psychiatric.

In terms of the mind-body dualism argument, as I said on another thread, if an HIV, polio, Ebola, or Hep C patient was offered a choice between CBT and anti-viral therapy to manage their illness, i think we know which they'd choose.