Skeptics in the Pub: November 19th – Alastair Miller


Quackery in the 21st Century: Unproven Treatments for Unexplained Symptoms

Alastair Miller MA FRCP DTM&H

When: Thu, Nov 19, 2009 8:00 – 11:00 PM
Where: Crown Hotel, 43 Lime Street, Liverpool.
Alastair Miller

Summary

Chronic Fatigue Syndrome (CFS) otherwise called Myalgic Encephalomyelitis (ME) is a medically unexplained syndrome. That is, it is a well defined complex of symptoms that add up to this diagnosis but with no biomedical explanation at a physiological, anatomical, biochemical or molecular level to give a basis for these symptoms. However, there are well established therapeutic approaches (Cognitive Behavior Therapy and Graded Activity programmes) that are evidence based and approved by NICE (the National Institute for Clinical Excellence). Regrettably, because these approaches are behavioural rather than pharmacologic there is much dissatisfaction with them in the patient community which therefore spends considerable time and money on unproven therapies exploited by well meaning or less well meaning practitioners.

Biography

Alastair Miller read medical sciences and law at St Johns College, Cambridge and completed clinical training at Westminster Hospital where he also worked as a house physician and surgeon. He then spent some time in the Royal Naval Medical Service including service with the Royal Marine Commadoes. He specialized as a physician in Naval Hospitals and trained in Infectious Disease at Birmingham and London. He held various consultant posts in Navy hospitals and was Naval Professor of Medicine in his last post.

He then spent nearly 10 years as a consultant physician in West Midlands with NHS appointments at Kidderminster and Worcester and an Honorary Senior Lecturer post at the Dept of Infection in Birmingham Medical School.

Since 2004 he has been consultant in the department of medicine and the Tropical & Infectious Disease Unit at Royal Liverpool University Hospital and an honorary Fellow at the Liverpool School of Tropical Medicine. He is lead for Bone infection and chronic fatigue services and also has major interests in blood borne virus infection. He chairs the Specialist Advisory Cttee on Infectious Disease at the London Royal College of Physicians and is Director of the Clinical Research Facility at Liverpool. His outside interests are mountaineering, sailing and adventure sports.

  1. #1 by perpetualspiral on October 13, 2009 - 10:03

    The “patient community” is “dissatisfied” with Graded Exercise Therapy because it is dangerous and can lead to serious relapse. Some people never recover from these attempts to follow their ignorant doctors’ orders to exercise. Studies prove this: http://wamcare.blogspot.com/2009/07/results-from-10-surveys-re-mecfs.html

    Cognitive Behavioural Therapy may help people cope with having to live with chronic illness, but it does nothing to improve their health. Putting more money into research and treatment along these lines is an unethical waste of resources and the lives that could be salvaged if real medical treatment was available.

  2. #2 by soma on February 2, 2010 - 11:34

    It is amazing what kind of bullshit names some ‘people’ invent just to describe the obvious: total delusional psychopathology!
    CFS & ME are names given from frustrated ignorant witchdoctors, all non-accepted/wanna-be neurologists/psychiatrists who seek revenge for their rejection and general mental incompetence: whether CFS or ME are just snake oil in drug!
    “It’s Mickey Mouse, mate. Spurious. Not genuine. And it’s worth… F@ck-all.”
    Why don’t we call them Chronic Fictitious Syndrome and Chronic Fat-brain-tissue Syndrome (both CFS) or, even better, Myalgic Encephalocolitis (also ME) for a more precise description…

  3. #3 by Craig on February 8, 2010 - 21:37

    Well argued soma – that will convince a lot of people. You have applied truly scientific and logical principles.

    The physical evidence for CFS is now overwhelming. Consider reading the following papers:

    http://www.ijcem.com/files/IJCEM812001.pdf

    or even my own paper:

    http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Craig%20Robinson%20Paper%20-%20Biolab%20ATP%20CFS%20function%20Study.pdf

    Just because something is not understood doesn’t mean it can be categorised as ‘all in the mind’. That way of thinking is the way of religion not science – just making up solutions with no evidence.

    People with MS were called hysterical until actual causes and physical abnormalities were found.

    Think before you post soma or were you in a dream at the time?

  4. #4 by Tom K on February 13, 2010 - 02:51

    The reason that people are dissatisfied by the promotion of Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) based on GET is not because they are behavioural.

    Suggesting Graded Exercise might work doesn’t really say much about the condition. Studies have shown that on average people who go on to develop ME/CFS were more active than their contemporaries before they got ill. If exercise was all that was required, most people would love it!

    Lots of people have tried all sorts of weird treatments.

    The reason people make such a fuss about the promotion is because:

    (i) Their effects are limited. When objective outcome measures are used (such as step counts or hours a patient works), the data does not look very good. However, usually those running CBT and GET trials for CFS don’t use such objective outcome measures and so can hoodwink people (and even NICE) into thinking CBT and GET works.

    (ii) Exercise can make people with ME/CFS worse because of the unusual response to exercise in the condition.

  5. #5 by Denise Longman MSc on February 14, 2010 - 00:11

    I am convinced that ME/CFS/and Fibromyalgia are the results of neurological damage plus ongoing inflammation caused by a range of under-recognised and undiagnosed chronic infections, especially zoonotic arthropod-borne infections. These may encompass up to 200 viruses as well as Babesia, Bartonella, Borrelia, Ehrlichia, Rickettsias and Mycoplasmas.

    Persistent infections at clinical and subclinical levels now exist in many, many thousands of patients and once these people are shoved into the CFS diagnosis, the NICE guidelines preclude any further investigations.

    Symptoms are relapsing and remitting, with some, such as small fibre neuropathies, and cognitive deficits, too trivial for the attention of in-depth neurological assessment, and too subtle to be honoured with a diagnosis. Or so it seems.

    If you would take the time to read my article

    http://www.theoneclickgroup.co.uk/documents/Borreliosis/Annie%20Drummond,%20Mists%20and%20Myths.pdf

    you might begin to realise that the symptoms of ME/CFS/FM match very well with an infectious disease which I was unfortunate enough to catch myself, in 1985, namely Lyme Borreliosis. Now known mostly as Lyme disease, this zoonotic infection is rapidly becoming pandemic in Europe, and has been a notifiable disease in your own country, Scotland, for over 20 years.

    As an infectious disease doctor you will realise that there will be a range of symtoms and a range of severity of those symptoms amongst any population. However, you may not know that there is a controversy raging about Borreliosis and related tick-borne infections, with most of the science pointing to prolonged infection and persistence of the organism despite the recommended treatment with a few weeks of antibiotic therapy.

    To those of us who read the literature, (there are over 9,000 papers in pubmed, at least, on borreliosis,) it seems incredible that the persistence and the almost stealth-like nature of the infection has been disregarded by the public health agencies.

    It is widely known that there is a high chance of misdiagnosis in cases of borreliosis due to the organism’s ability to alter its surface proteins as well as it being able to exist intracellularly, and in discrete pleomorphic forms. The most ill people tend to show the poorest immune response, and some will not develop antibodies until they have begun antimicrobial therapy.

    The UK seems to have a lower incidence of Borreliosis compared with the rest of Europe, but researchers are convinced that there has been some mistake in the epidemiology, since climate and human activities are not different enough in the UK to lead to the ridiculously low incidence recorded, which is 2 orders of magnitude lower than say, Holland or Sweden.

    The Dutch have reckoned that half a million of their 17 million population have acquired the disease, and last week presented a petition of 65,000 signatures to their parliament, asking for dedicated consultants and special cliinics, and long-term treatment with anti-microbials.

    The Swedes are travelling to Germany in specially-chartered flights, at the rate of 1000 patients per year, to obtain expert care, because their own country, like the UK, insists that borreliosis cannot be cured by long term antibiotic therapy. Doctors in Hungary recommend that 5 years of pulsed antibiotics is sometimes necessary, and have helped patients with symptoms classified as MS-like in their severity to become well and fit.

    Those of us who are unable to access any clinical care for our chronic Lyme infections wonder why on earth this is happening, when TB patients are allowed up to 3 years of a triple combination of antibiotics.

    It would be a struggle to catch up on all the borreliosis literature for most doctors, especially as they have been taught for the past 35 years that Lyme is rare, but one good place to begin is at http://www.ilads.org.

  6. #6 by John on February 14, 2010 - 01:46

    Alistair the main source of quackery flourishing today comes from the quacks themselves – the pharma funded psychiatric industry which has no basis in science and a long history of wrongly claiming diseases that were later proven by science.

    M.E. is a WHO neurological disease with an extensive epidemic history and thousands of research papers proving the biological and genetic basis of the disease and viral triggers, research now focusing on an infectious HIV-like retrovirus.

    M.S. was claimed by the quacks until science proved them wrong, so they moved onto M.E. If you really want to expose quackery take a look at the DSM for Mental Disorders, all “voted” in without any scientific proof, just checklists of symptoms or what they call cookbook diagnosis. That’s quackery – look into it!

  7. #7 by John on February 14, 2010 - 06:39

    Alistair I doubt you have ever investigated the rarely discussed infections that can cause mental illness, the neglected nutritional causes and the frequently missed medical diagnoses of hypothyroidism and other treatable conditions that doctors don’t have time to look for before sending the “difficult” patient off to psychiatrists who just happen to have the highest rate of mental illness, substance abuse and suicide. These causes are overlooked because they can be cured, but psychiatric treatments are for life – now just think about the money involved here.

  8. #8 by Porbeagle on February 14, 2010 - 09:23

    Hey there skeptics (including Dr Alastair)

    I would LOVE it if you applied you principles of skepticism to the claims made about the amazing properties of CBT and GET to ‘cure’ an illness in which various important and serious neurological and other system abnormalities have been found.

    i cannot understand why psychiatric claims- based as they are on absurd so-called ‘evidence’ – get such a free ride from those claiming scientific rationality, including in the article above. It points to a possible cognitive dissonance on this subject, or just plain ignorance.

    Either way- if Alastair looked closely at the ‘evidence’ around CBT, GET and the whole ‘evidence’ base around CFS as somehow a behavioural disorder – he would see skewed samples of patients, untestable and illogical pronouncements presented as fact, subjective reporting presented as outcome measures in clinical trials (!), ideological bias, discrepant sizings in samples, weak correlations trumped as causation, affirming the consequents, as just a few of the errors saturating the psychiatric literature on ‘CFS’.

    Ideally – you skeptics and your spidey senses should be tingling big time when you see the discrepancies around ‘CFS’ made by doctors.

  9. #9 by Gillian Broughton on March 10, 2011 - 18:01

    Who will be the skeptics when XMRV gets out , why are peopl with ME/CFS been banned from dionating blood , ? if no infections , viruses . Miller shouldnt really be a medical advisor for the charity group AFME !!!

  10. #10 by ME patient on November 11, 2011 - 08:53

    ” However, there are well established therapeutic approaches (Cognitive Behavior Therapy and Graded Activity programmes) that are evidence based and approved by NICE (the National Institute for Clinical Excellence).”

    You make it sound like it’s a cure, or something close to a cure. It’s not by any chance. And if you’d ask 1000 patients to participate in such a CBT trial, there would be such a large percentage which would say, no, this is not for me, so you’d end up with a unrepresentative patient group. A patient group which is more inclined to /have/ psychiatric illness than the CFS patient group as a whole. And than using the group which have accepted the CBT, and extrapolating the results to fathom the whole group is not good methodology.

  11. #11 by Steve Thomas HE (Dip), MASC, BA (Hons), MASC( Ad.P.Th.) on February 25, 2015 - 01:32

    I’ve been reading up on you (Dr. Alastair Miller), and your colleague at Liverpool Royal (Dr. Mike Beadsworth), amongst many, many others – for my book on the The Science and the Crimes of M.E. – congratulations! You both just made an extensive section of my book and the press releases that go with it – and, no, I’m not joking. As ‘so-called’ scientists I actually respect your work in the field of ‘contagious diseases’ (Inc. Multiple sclerosis – non-contagious, your other papers on Lyme being ‘properly and scientifically examined). But, then you claim – in your published paper with ‘said’ colleague – that to call Lyme disease ‘Chronic Lyme Disease’ prevents and confuses ‘proper diagnosis’, and yet you are ‘hypocritically ignorant ‘ to then state that Myalgic Encephalomyelitis is ‘Chronic Fatigue Syndrome’ – You sold yourself out, yes, there’s a name for that. You ignore or deny over 1,000 ‘Scientific’ findings on M.E., and over 10,000 ‘Scientific’ papers published by Scientific experts, and you ‘agree’ and even ‘condone’ the ‘so-called’ NICE guidelines on CBT as “an effective treatment for CFS” (when there are four ‘proven’ effective medicines that have all been trialled successfully and led to 40%-80% improvement and in many cases ‘full remission’) and as for GET? It has ‘proven to be extremely harmful, and even fatal, to almost all genuine M.E. sufferers, you should resign your part in ‘anything to do with M.E. until you’ve either a) bothered to do your ‘unbias’, and nowhere near as but extremely well paid, #actual scientific research into the actual scientific findings’ or b) you get M.E. yourself, unable to walk, barely able to think for more that a short period of hours at best, eventually laying bedbound in your own excrement with tubes sticking out of you, and then find that your ‘insurance companies’ were in league with psychiatrists like Wesseley, Sharpe, Chalder (clinical psychologist), et al, whilst taking back-hander payments, and your insurance now counts for as much as the stuff you are laying in. Then, and only then, you can start to do some actual scientific work into M.E. and ‘eventually, you may even be able to call yourself ‘an M.E. Specialist’. I’d list you some of the many scientific findings, like 2006 Sophia Mirza’s Autopsy findings by two Neurologists, 2007 Dr. Jonathan Kerr and his team found up to 88 separate genes damaged in numerous M.E. patients, but, why? You’re bought and sold – like I said; “There’s a name for that” – And, like I also said; you’ve now made it into my book on M.E. to be published with national and international press releases. What made you sell-out ‘Science’ for ‘Ignorance’? Just the money? Alternating the perspective; I don’t care what made you how you are. You fit right in at AfME, a sell-out to M.E. Sufferers in favour of money from the government(s). Congratulations.

  12. #12 by David on January 12, 2016 - 18:47

    Dear Mr. Alastair Miller
    I read your comments about ME / CFS and the PACE trials, which I found very interesting. From a scientific & medical perspective and legal perspective, the following needs to be communicated to all doctors and medical professionals.

    A scientific analysis of the PACE trial – http://www.me-ireland.com/bogus.htm#pace
    The documented harms caused by exercise and exertion in cases of ME and CFS – http://www.me-ireland.com/scientific/16.htm
    Scientific and medical evidence – http://www.me-ireland.com/scientifc.htm
    The legal implications for doctors and medical professionals – http://www.me-ireland.com/bogus.htm

  13. #13 by Dr James Billingham on November 30, 2016 - 14:09

    I am reminded of the saying “Golf mirrors life and life mirrors golf”.
    Well I have been reading “Zen Golf” by Dr. Joseph Parent. He relates the story of “The Four Cups”, which are the four traits which people exhibit when learning. The “upside down cup” when the person pays no attention and nothing gets in. The “right side up cup with a hole in the bottom” when the person retains very little. The “right side up cup with dirt in the bottom” when the person can distort what is heard and resists or ignores what does not match their opinion. And finally “the upright cup with no hole or dirt” when the person is open to new and refreshing ideas.

    Which do you think fits Dr Alastair Miller?

(will not be published)