AfME's New Principal Medical Adviser: Dr Miller (who promotes CBT and GET)

[Bob]

1. Psychological treatment involves delivering a highly complex
understanding of the psychological, physiological and social factors of CFS
to severely disabled, fatigued patients and relatives, in order to change
perpetuating illness behaviour and motivate patients to perform a
self-managed activity programme, regulate disturbed sleep patterns and
modify predisposing personality style.

Ridiculous.

Is this the 'behaviour' where you are in so much pain that you can't walk, or the 'behaviour' where you are so weak and exhausted that you can't even take a shower?
I wonder why they don't give CBT to people who have the flu? People with flu and their stupid illness behaviour! They should get back to work!

2. Clients with CFS, because of their chronically fatigued state,
experience barriers to understanding. For some clients there can be
significant barriers to accepting the changes needed in behaviour, which
have to be overcome in therapy in order to facilitate a successful outcome.

Ridiculous.

5. As some clients with CFS may be resistant to working in a
psychological framework there may be exposure to verbal aggression.

There's a surprise!


This gives a very disturbing insight into the minds of the CBT promoters.

 

[Bob]

I know it's not directly related, but here's a very interetsing quote from Dr Vance Spence, the Chairman of ME Research UK.

Dr Vance Spence says:
"The feelings of pain and sickness are with me all the time. The illness has changed my life. I can do none of my former hobbies, and have been left hanging around on the fringes of a no-man's land between the dying and the well. After 30 years, I need a wheelchair to go even short distances. It's a double torture - having the illness and having it unrecognised - and there are thousands in the same position. Nothing is more important than biomedical research which alone can answer sceptics and lead to the breakthrough we all want to see."

Permission to post - This quote is taken from a donation request insert in the recent ME Research UK 'breakthrough' magazine, Issue 11, Spring 2010

What a difference in attitude to AfME's new advisor!

 

[Dolphin]

One can listen to an interview with Dr. Miller at:
http://parafort.com/ri/?p=394

Nothing too exciting except he doesn't seem to be that interested in infectious angles (Lyme is specifically mentioned but there is some phrase about "speculative infections" or something like that). Given his main value might be if he was into infections, it isn't great (but there isn't a huge amount of info to go on).

 

[Bob]

Response from AfME to the FINE Trial:
http://www.afme.org.uk/news.asp?newsid=822

Action for M.E. is disappointed that the FINE trial found the treatments studied are not as effective as earlier studies had indicated. As such we share the disappointment expressed by many patients that the trial has made such a limited contribution to advancing our knowledge about M.E./CFS. This outcome strengthens our view that the priority for future research funding should be given to studies that will lead to an improved understanding of the fundamental biology of the illness and to setting up the infrastructure facilities necessary to support biomedical research.

 

[Min]

AfME have supported the FINE and PACE trials from the beginning. Only when they call for all research to be done using te Canadian Criteria to select participants I shall believe they are serious in their calls for biomedical research.

The appointment of Dr Alastair Miller would appear to be another of their many underhand attempts to have M.E. viewed and treated solely as a psychological disorder, despite their lip service to the contrary.

 

[Bob]

Yes, I totally agree with you Min...
That's what the flying pigs, after the AfME quote that I posted, were trying to say... but you said it much better!

AfME have supported the FINE and PACE trials from the beginning. Only when they call for all research to be done using te Canadian Criteria to select participants I shall believe they are serious in their calls for biomedical research.

The appointment of Dr Alastair Miller would appear to be another of their many underhand attempts to have M.E. viewed and treated solely as a psychological disorder, despite their lip service to the contrary.

 

[Orla]

yeah, we are now merged (the threads I mean :Retro smile: ). Thanks Sarah,

Orla

 

[Dx Revision Watch]

yeah, we are now merged (the threads I mean :Retro smile: )...

That's alright, then, Orla, for a moment I thought you were reporting some kind of Vulcan mind meld -

My mind to your mind... my thoughts to your thoughts... ​

...you wouldn't want to be inside my head.

Suzy

 

[Dolphin]

Just swotting up on my "Alastair Miller"

http://readmeukevents.wordpress.com...r-alastair-miller-speaker-rsm-cfs-conference/

Correspondence with Dr Alastair Miller, speaker, RSM CFS Conference

[...]

"Turning to the conference itself – I think it is excellent news that a distinguished body such as the Royal Society of Medicine (RSM) should put on such a conference. Clearly there are a number of speakers from a mental health background but equally there are speakers and chairs from general practice, hospital medicine, rehabilitation and from patient groups so I would not regard the coverage as being “unbalanced” and I think it would be a great shame if patients’ views went unheard at the conference. I am thoroughly looking forward to participating and was delighted to be invited."

--------------------------

Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

RSM Conference Resources

http://www.rsm.ac.uk/chronicfatigue08/index.php

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

PowerPoint Slides:

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/miller.pdf

Webcast of Presentation

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

That link didn't work for some reason but this one does (just watching it now):
http://rsm.mediaondemand.net/playersp1.aspx?EventID=1337

It can look like it is 54 minutes long.
However it's only 25:24 long.

 

[Dolphin]

I think I'd be less opposed to Dr Miller than a lot of people here, but this sort of thing pisses me off: "because these approaches are behavioural rather than pharmacologic there is much dissatisfaction with them in the patient community". How about "because many patients find these treatments to be ineffective..." - why is it seen as acceptable to be so dismissive of the concerns of those patients who have not found GET and CBT to be useful?

Well said.

Also, many people like pacing and the energy envelope management techniques - they're behavioural in a somewhat similar way to GET being behavioural.

 

[Dolphin]

I'm really disappointed, reading the letter above... I thought he was supposed to work in an infectious disease unit... but how can you promote treating infectious diseases with CBT? The mind boggles.

Looking at the video, he has no interest in the infectious angle.

And as somebody knowledgeable, he could be more difficult to argue with.

 

[Orla]

Miller on PACE Trial

Latest from Miller:

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.

http://www.sciencemediacentre.org/pages/press_releases/11-02-17_cfsme_trial.htm

 

[Mithriel]

"It'd gie ye the boak" as my granny used to say. (cause nausea)

Mithriel

 

[Enid]

Back to the Dark Ages - again.! One had hoped for something more enlightened from Afme in the light of past and present international expert findings. I accept no compromise. As to continuing "our" research - where is it - CBT/GET? - its all coming from the US and dedicated European researchers (excl UK). The so called experts on the sciencemediacentre page are simply not EXPERTS.

 

[SilverbladeTE]

"It'd gie ye the boak" as my granny used to say. (cause nausea)

Mithriel

haha my granny too! then she'd kick someone's arse for being such wicked, stupid ratbags

 

[Enid]

Silverblade - (my GGF all the way from Aberdeen) - the boot sounds great.

 

[biophile]

AfME are in an odd position!

AfME supported the funding for the PACE trial (?), which supposedly was "designed in collaboration" with AfME, helped to develop the APT protocol and apparently got duped by White et al (what did they expect?). Publicly disputed the published results and are developing a critical "strategy" response against PACE. Meanwhile their principal medical advisor, Dr Alastair Miller, gives glowing praise for the PACE trial: This trial represents the highest grade of clinical evidence a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analyzed 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."

 

[Enid]

Too angry to comment at this attempt to rekindle CBT/GET as a major treatment. And Dr Miller of Afme promotes. Don't see it in the Real Experts protocols - they find and treat pathologies.

 

[Bob]

AfME supported the funding for the PACE trial (?), which supposedly was "designed in collaboration" with AfME, helped to develop the APT protocol and apparently got duped by White et al (what did they expect?). Publicly disputed the published results and are developing a critical "strategy" response against PACE. Meanwhile their principal medical advisor, Dr Alastair Miller, gives glowing praise for the PACE trial: This trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analyzed 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."

Yep, I've found that interesting as well... There's been such an enormous backlash against the PACE Trial... And even AfME seem to be quite pissed off with the results, and feel like they've been duped... Their statements have been quite helpful... And as our community has been speaking with one voice against the PACE Trial... I'm hopeful that this might be a turning point for AfME and for our wider community and that the backlash against the psychologists, and psychological interventions, increases exponentially from this point forwards! (i know, i'm ever the optimist!)

 

[Enid]

Perhaps not being duped should be the guiding light.. Until such time as psychiatrists (or whatever) promoters of CBT/GET etc remove themselves from the frame we might move forward.