(Not a recommendation) Alastair Miller on CFS

[Tom Kindlon]

From: Dr. Marc-Alexander Fluks

Sent: Thursday 28 December 2017 09:45
To: LOCALME <localme@yahoogroups.com>; MEACTIONUK <meactionuk@yahoogroups.com>; MECHAT-L <mechat-l@listserv.icors.org>; CFS-L <cfs-l@listserv.icors.org>; Colin Barton <colin.sussexme@btinternet.com>
Subject: Column: Alastair Miller




Source: Alastair Miller
Date: December 22, 2017
Author: Alastair Miller

I am a NHS consultant physician in Infectious Disease and General Internal Medicine who has been involved in the NHS evidence based management of CFS since my training as a registrar in the late 1980s. I was head of the large CFS service based within the Tropical & Infectious Disease Unit at the Royal Liverpool University hospital from 2006-2014 and prior to that had established and led the County wide service for CFS in Worcestershire. I was a founder member of the British Association for CFS & ME (BACME) and have recently stood down as chair of that organisation (the specialist society for all clinicians involved in the management of CFS) after 4 years. I was Principal Medical Adviser for Action for ME for 5 years.

The most destructive thing about the whole CFS agenda has been the two extreme opinions that this is either a purely physical illness with no psychological dimension or it is a pure psychological illness with no physiological basis. 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. 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'. We know that some of the psychological approaches used in our clinics are also highly effective in relieving the symptoms of cancer or such chronic conditions as rheumatoid arthritis and clearly nobody would suggest that these conditions are 'all in the mind'. CFS is purely a symptomatic condition. If you have no symptoms you do not have CFS. Therefore if we can relieve/improve the symptoms we relieve the disease.

We know that not everyone is helped by the current NICE approved therapies but in my experience over the last 20 years many people are and there is currently no alternative therapy. Despite a huge investment into biomedical research for CFS, there is no unifying pathological mechanism identified to explain its many symptoms and no pharmacologic approach to therapy and therefore cognitive behaviour therapy (CBT) and Graded Exercise therapy (GET) as recommended by NICE remain currently the 'best that we have'. Clearly further trials need to continue to refine our therapeutic approaches and develop new ones.

Having been involved in working with patients over many years in the development of new therapies for HIV and hepatitis, I find that CFS is a most unusual condition where well meaning and dedicated researchers and clinicians find themselves at odds with patient activist groups rather than working constructively with them.


Alastair Miller
Consultant Physician
North Cumbria University Hospitals Trust

 

[Jonathan Edwards]

Having been involved in working with patients over many years in the development of new therapies for HIV and hepatitis, I find that CFS is a most unusual condition where well meaning and dedicated researchers and clinicians find themselves at odds with patient activist groups rather than working constructively with them.

Sorry Dr Miller but you have clearly missed the point completely. CFS is unusual only in that poor clinical trial research is touted as being competent when it is not. Competent researchers in ME/CFS have no problem at all with patient 'activists', who value good quality research. It is not in fact that well meaning and dedicated researchers have problems with 'activists' but rather that self-promoting researchers have a problem with patients and academics such as myself calling them out for shoddy work.

You only have to read your own prose, Dr Miller, to see that you yourself have no idea how reliable evidence is obtained.

 

[Andy]

What a <insert favourite expletive>. So clueless and yet was in such positions of authority for so long. There is so much wrong in what he has written, I just don't have the energy to start with any of it.

 

[Invisible Woman]

Hmmmm...

.

Alistair Millar said :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'.

No, I beg to differ. They are not effective. Can you supply details - actual figures of people who have recovered sufficiently to return to and remain in school of at work long term.

Alistair Millar said:We know that not everyone is helped by the current NICE approved therapies but in my experience over the last 20 years many people are and there is currently no alternative therapy.

Again - we differ: the people who are not being helped by your service or who have been harmed will quietly melt away realizing that it can harmful to remain within the healthcare system. You are, possibly unwittingly, using the fact that many of your patients are too vulnerable and scared to stand up to you and tell you the truth, to prop up a system that is virtually useless.

The mention of a lack of viable alternative treatment shows how little choice we patients have. Just because it's the only treatment doesn't mean that it should continue - that money could be used for research instead.

Alistair Millar said: Having been involved in working with patients over many years in the development of new therapies for HIV and hepatitis, I find that CFS is a most unusual condition where well meaning and dedicated researchers and clinicians find themselves at odds with patient activist groups rather than working constructively with them.

Keep up dear. Your dedicated researchers and clinicians find themselves at odds with dedicated scientific researchers and some other clinicians. Also at odds with patients - the ones to scared to speak up, the ones too sick to and the ones who become activists because you aren't interested in listening anyway.

 

[Tom Kindlon]

 

[Joh]

Despite a huge investment into biomedical research for CFS

 

[Invisible Woman]

Alistair Millar said: The most destructive thing about the whole CFS agenda has been the two extreme opinions that this is either a purely physical illness with no psychological dimension or it is a pure psychological illness with no physiological basis.

This again.

All illness will have a psychological component from cancer to a toothache.

However treating an illness as primarily psych is the issue. Try treating cancer (or a toothache ) for that matter with the toxic brand of CBT designed with the CFS patient in mind.

 

[Jonathan Edwards]

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

 

[Adrian]

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.

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.

 

[Wonko]

I suspect it may mean "alive", as only rocks and the dead do not..........

 

[Hoopoe]

The most destructive thing about the whole CFS agenda has been the two extreme opinions that this is either a purely physical illness with no psychological dimension or it is a pure psychological illness with no physiological basis. 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.

What a dishonest weasel. Every chronic illness with sufficient impact causes psychological suffering. That doesn't mean it can be cured by treating the psychological suffering. Yet that is exactly what these people have been been claiming to be able to achieve by publishing dishonest, even fraudulent science. They have enriched themselves by exploiting patients and it has been going on for decades. I hope that bad science of the type they're doing will be criminalized to protect patients who are very vulnerable.

 

[Snow Leopard]

There isn't a division between psych vs nonpsych. People like Lenny Jason for example are well respected.

The problem is a key loss of trust between patients and certain doctors and researchers. The loss of trust is due to decades of unwillingness of those people to listen to patient experience and their repeated unfounded claims about the effiacy of psychological treatments - claims about recovery for example that are completely unfounded.

Alistair Miller's repeated claims with no admission that they have done something wrong that caused the loss of trust means he has learned nothing.

 

[EzzieD]

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

No, no they're not, Dr Miller. Those 'therapies' were built upon a lie and a sham, a false psychiatric model of ME/CFS that there has never been any evidence for whatsoever and never will be. They have been proved by real-life patient experience as ranging from useless to causing actual physical harm. How is that by any stretch of the imagination 'the best we have'?

 

[Indigophoton]

Alistair Miller's repeated claims with no admission that they have done something wrong that caused the loss of trust

This. They seem to expect to be able to smother the inconvenient truth, and just skate right past it, as if we would just forget once they admit there might be a physiological element too.

 

[Robert 1973]

I find it hard to believe that doctors like Alastair Miller are stupid, but there is so much that is wrong with this letter that it makes me question whether he is intellectually incapable of understanding the issues or whether he is simply dishonest, or both.

Almost every sentence could be picked apart but here is just one:

We know that some of the psychological approaches used in our clinics are also highly effective in relieving the symptoms of cancer or such chronic conditions as rheumatoid arthritis and clearly nobody would suggest that these conditions are 'all in the mind'.

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.

 

[Valentijn]

Well, at least he's making it relatively clear where he stands. Hasn't he been a bit "your symptoms are real, let's try to treat them" as a clinician and "it's all psychosocial" as a researcher? Or maybe I'm thinking of someone else.

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.

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'.

So Miller's either a complete idiot who believes the spin, or he's a manipulative jackass who's cynically using the spin to support his line of bullshit. There is simply no excuse for anyone involved in ME/CFS research to still believe that PACE proved CBT or GET are effective.

And if research isn't proving treatments are effective, they probably aren't effective in clinical practice either, and Miller is experiencing a great deal of confirmation bias and/or spouting more bullshit.

We know that some of the psychological approaches used in our clinics are also highly effective in relieving the symptoms of cancer or such chronic conditions as rheumatoid arthritis and clearly nobody would suggest that these conditions are 'all in the mind'.

Do they tell cancer and RA patients that their disease will go away if they stop believing they have symptoms? Probably not. At most they tell them that their fatigue and pain can go away if they believe hard enough. And that would still be a warped therapy which bears no resemblance to illness coping CBT, even if it has hijacked the name.

CFS is purely a symptomatic condition. If you have no symptoms you do not have CFS. Therefore if we can relieve/improve the symptoms we relieve the disease.

Miller is clearly stating his belief that there is no pathophysiology of ME/CFS. He is not allowing for the possibility that there is anything except symptoms, which is clearly absurd in the context of biological disease. Even if a diabetic takes a drug which prevents them from having symptoms of hyperglycemia, they clearly still have diabetes.

Merely resolving symptoms without addressing pathology only cures someone if there wasn't a disease in the first place. Symptoms without a disease or other pathology would have to be psychosomatic - and that is clearly what Miller thinks ME/CFS is: physical symptoms caused by nothing at all, except patients thinking they're ill.

Despite a huge investment into biomedical research for CFS, there is no unifying pathological mechanism identified to explain its many symptoms and no pharmacologic approach to therapy and therefore cognitive behaviour therapy (CBT) and Graded Exercise therapy (GET) as recommended by NICE remain currently the 'best that we have'.

Huge investment? Now Miller's just a liar.

And many diseases lack a known "unifying pathological mechanism" while still being clearly biomedical. There is a great deal of research consistently proving ME/CFS is biomedical, even if we don't fully understand the mechanisms of the disease yet.

The lack of better options doesn't make CBT/GET either worthwhile or necessarily safe.

Clearly further trials need to continue to refine our therapeutic approaches and develop new ones.

Ah yes. "Don't waste money looking at the biology, just give us funding for developing slightly different forms of illness-denial CBT/GET for perpetuity."

Having been involved in working with patients over many years in the development of new therapies for HIV and hepatitis, I find that CFS is a most unusual condition where well meaning and dedicated researchers and clinicians find themselves at odds with patient activist groups rather than working constructively with them.

Depends on the researchers - I doubt the "Gay-Related Immune Deficiency" model driven by group hysteria made the psychiatrist Casper Schmidt very popular among HIV patients. And much like with ME/CFS, he wasn't the only one promoting pseudoscience - there was the cancer researcher Peter Duesberg, Professor Robert Root-Bernstein with his belief that AIDS was equally contributed to by psychosocial factors, general practitioner Dr Robert Willner, BBC journalist Joan Shenton, etc, etc.

The difference is that ME-denialists are still being somewhat supported by reputable institutions, whereas the AIDS denialists were fired decades ago. But it's just a matter of time until the ME-denialists, including Dr Alistair Miller, also have a note on wikipedia regarding their denialism and systematic opposition to the research that would further debunk their claims. We've long passed the point where the science establishing the biomedical nature of ME/CFS is no longer credibly deniable.

 

[Andy]

@Tom Kindlon , any idea where this text appeared originally?

 

[MeSci]

@Tom Kindlon , any idea where this text appeared originally?

I saw it in an ME-related email group, but it didn't have any details about the origin (nothing like the 'To' details here), and I couldn't find it separately.

And note that it came from Dr. Marc-Alexander Fluks.

 

[Andy]

I saw it in an ME-related email group, but it didn't have any details about the origin (nothing like the 'To' details here), and I couldn't find it separately.

And note that it came from Dr. Marc-Alexander Fluks.

I've tried Googling various sections of the text and nothing comes up, so it doesn't appear to be anything openly on the internet. The way it reads, if it's genuine and I have no reason to doubt it at the moment, to me it seems to be a response of some sort. I'm just curious what it's a response to, assuming I'm right.

 

[Tom Kindlon]

@Tom Kindlon , any idea where this text appeared originally?

I have no more information on it.

Given Colin Barton is in the To: line, I wouldn't be surprised if he is the source. He previously has posted material that was similar enough to this to lists. He is still around and earlier this month asked me to post something for him on Co-Cure. [Aside: I have posted the odd thing for him before but this time refused saying I didn't think it was suitable and said there were lots of discussion fora he could post it to and he lashed out at me].