(Not a recommendation) Alastair Miller on CFS

[lansbergen]

I do not see Fluks own forum in the To: line.

 

[Andy]

Ok, thanks for the explanation @Tom Kindlon

 

[Trish]

Being relatively new to ME websites and forums, I have no idea what Co-Cure is. Can anyone enlighten me. Google has let me down on this!

 

[Indigophoton]

I think it might be this, https://listserv.nodak.edu/archives/co-cure.html

 

[Invisible Woman]

Subject: Column: Alastair Miller

Seeing the word column makes me wonder if this was written for some magazine or journal or something ...

 

[Esther12]

I'd guess it's a response to this article in the Express: https://www.s4me.info/index.php?thr...n-not-a-mental-illness-says-ellen-wiles.1676/

PS: It wouldn't surprise me if Colin Barton thought this was a really interesting and useful piece.

 

[Barry]

This attitude really really annoys me. What does it mean to have "elements of both physiological and psychological dysfunction". Without proposing any form of mechanism it strikes me as a meaningless statement designed to gloss over issues and avoid having to have any form of coherent thought.

I think Miller should explain in some detail what exactly he means by this.

Seeing as he implies this rationale maps onto cancer sufferers etc, then the psychological issues he refers to must inevitably be secondary. But Dr. Miller doesn't seem to realise that PwME get really p1ssed off being told their condition is perpetuated by primary psychological issues (false-illness beliefs, and unwarranted fear of exercise), and he fails to appreciate that that is the real issue.

 

[Barry]

therefore cognitive behaviour therapy (CBT) and Graded Exercise therapy (GET) as recommended by NICE remain currently the 'best that we have'

If I have a nice roast dinner in front to me, and by some disastrous calamity there is no gravy to pour over it, nor any immediate prospect of any, that does not mean I'm going to pour bullshit over my dinner just because someone insists it is the 'best that we have'.

 

[Sean]

The fact that the behavioural approaches used in the PACE trial, supported by the current NICE guidelines and widely used in all NHS services are effective does not mean that CFS is 'all in the mind'

You do claim it is primarily driven by psycho-social behavioural factors. It says exactly that in the PACE protocol, and endless other publications from you and your like-minded colleagues.

In fact, you claim that is the essence of the disorder. To try to claim otherwise now is dishonest and cowardly. It is all on the public record going back decades, and is beyond legitimate dispute.

1. We do not know that CBT is “highly effective” in relieving symptoms of cancer or RA.
2. PACE protocol CBT is not the same as CBT given to patients with other diseases.

But Dr. Miller doesn't seem to realise that PwME get really p1ssed off being told their condition is perpetuated by primary psychological issues (false-illness beliefs, and unwarranted fear of exercise), and he fails to appreciate that that is the real issue.

Wot they sed.

 

[Alvin]

And by the way Dr Miller, psychotherapy does f*** all for rheumatoid arthritis - absolutely sweet Fanny Adams.

I wouldn't be so sure, they probably complain less because they got frustrated and gave up trying to get treatment. Suffering in silence may be a positive outcome to those who don't offer much else

 

[Art Vandelay]

All the NHS clinicians with whom I have worked believe that there are elements of both physiological and psychological dysfunction in many patients with CFS and that this 'mind/body debate' is essentially a destructive distraction from getting on and offering best management for our patients.

Basing treatment on "beliefs" is a ridiculously inadequate approach to take. Treatment should be based on science and what the patient wants, not the logical fallacy of Appeal to Authority.

Spot on. I don't give a crap what Miller and his fellow quacks 'believe'.

They should have to scientifically prove that ME/CFS is psychological (or partly psychological dysfunction as he claims). Put up or shut up.

 

[Sean]

All the NHS clinicians with whom I have worked believe that...

Somebody should remind Prof Miller that clinician opinion is the lowest formal ranking of evidence in formulating clinical guidelines, and for very good reason.

 

[Forbin]

Call me an optimist, but I'd like to think that whoever wrote this letter had the good sense not to actually publish it just 3 days before Christmas.

 

[Barry]

Aforementioned letter, December 22, 2017:

The fact that the behavioural approaches used in the PACE trial, supported by the current NICE guidelines and widely used in all NHS services are effective...

No comments by Dr. Miller are available at this time regarding the released PACE trial data and if he would still recommend these treatments in light of the discrepancy between the data collected and the data and conclusions published.

http://me-pedia.org/wiki/Alastair_Miller

I think it is apparent that ME-Pedia now needs updating.

 

[Barry]

The fact that the behavioural approaches used in the PACE trial, supported by the current NICE guidelines and widely used in all NHS services are effective

Note "current NICE guidelines", making no mention they are scheduled for a complete overhaul.

 

[Andy]

Aforementioned letter, December 22, 2017:


http://me-pedia.org/wiki/Alastair_Miller

I think it is apparent that ME-Pedia now needs updating.

I don't disagree but what we have here is something that is claimed to be written by Miller, provided by a source that some have indicated to be not always reliable (Fluks) - it was one of the reasons I asked Tom if he had more information about the source.

 

[Barry]

I don't disagree but what we have here is something that is claimed to be written by Miller, provided by a source that some have indicated to be not always reliable (Fluks) - it was one of the reasons I asked Tom if he had more information about the source.

That is a very valid observation Andy, and well noted. It's true, we should not presume this letter is definitely from Dr. Miller, given the apparent unreliability of Fluks as a source.

 

[MeSci]

Note "current NICE guidelines", making no mention they are scheduled for a complete overhaul.

Could his use of the word 'current' be an acknowledgement that they are being reviewed?

 

[Barry]

Could his use of the word 'current' be an acknowledgement that they are being reviewed?

Not sure. I suspect it is standard phrasing anyway, but in this case especially significant.

 

[Tom Kindlon]

Some other pieces by Alastair Miller:

https://www.gresham.ac.uk/lectures-...-fatigue-syndrome-not-just-tired-all-the-time

The only current therapeutic approach for which there is some evidence is using either cognitive behaviour therapy (CBT) or graded exercise therapy (GET). These are controversial approaches because some patients feel it incongruous that they are told that CFS/ME is not a “psychological condition” and yet we are going to use a psychological therapy for it.


However, CBT is extensively and beneficially employed in many other chronic conditions such as cancer and rheumatoid arthritis, so there is nothing illogical in using it for CFS/ME. It does not work for everyone but it is unlikely to cause any harm (White at al. Lancet 2011; vol 377; issue 9768) and is worth trying.


Conclusion



CFS/ME despite a huge research effort remains an ill understood and “medically unexplained syndrome”. It is capable of a positive diagnosis although there is no specific test or biomarker. It should be specifically diagnosed either in primary or secondary care and consideration should be given to referring patients for specific therapies.

http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/

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.”