Dr Alastair Miller praises the Sussex & Kent ME/CFS Society in Sussex Argus

Tom Kindlon

Senior Member (Voting Rights)
Source: Sussex Argus
Date: July 5, 2018
URL: http://www.theargus.co.uk

[Letters]

Thriving ME Society
-------------------

I think Sussex ME Society has done a fantastic job to survive and flourish for 30 years in a climate that is often seen as hostile to ME patients, carers and clinicians. It has always been an organisation with a truly open mind that is not afraid to champion unpopular causes and speak common sense in a world where common sense and pragmatism can be sadly lacking. They have supported and made a difference to many many individuals with ME and should be justifiably proud of their achievements.

Dr Alastair Miller
Consultant physician

via http://www.theargus.co.uk/enewspapers/

 
As probably many are aware, at one time Professor Findley was set to run his own pilot on the Lightning Process, and had developed a LP analogue with co-workers, called neurobehavioural training, for which a dedicated website was developed but apparently no longer exists. There was also anecdote on the Bad Science forum dating back to 2011 re a Queen's Hospital in patient stay at the CFS Unit and Professor Findley's involvement with LP at that time. Interesting to note that both he and Esther Crawley are medical advisors to the Sussex & Kent ME/CFS Society.

The exception, he says, is the lightning process, which is the focus of a small independent pilot study conducted by Leslie Findley, a clinical neuroscientist who has spent decades working with Parkinson’s disease, CFS and other neurological disorders.

Because he feels that CFS sufferers "are vulnerable to exploitation, and there have been all sorts of quackery and bogus treatments," Dr. Findley is very skeptical. But after tracking more than 100 of his own patients who have undergone the therapy, he feels that there may be something to it.

About two-thirds of his subjects seem to have some benefit. This is quite a bit short of the success rate lightning-process practitioners claim (they say that, done properly, it should work for everybody), but there is a measurable benefit nonetheless.

"Whenever something new comes along," Dr. Findley says, "I’m keen to see if it has anything to offer – and there’s no doubt that this does." He believes the key is the way the process helps people manage stress, which accentuates any illness. For example, stress worsens the tremors in Parkinson’s patients.

http://www.meassociation.org.uk/2008/03/a-canadian-take-on-the-lightning-process/

Posted on Bad Science: http://www.badscience.net/forum/viewtopic.php?f=3&t=15791&start=1825

“Warning: long post.
I was an inpatient at the CFS unit at Queen’s Hospital, Romford a few years ago. The unit is run by Prof Leslie Findley. Prof Findley is a consultant neurologist, who has been known in recent years as someone who has taken a keen interest in the Lightning Process and has recommended it to many of his patients.

I spent six months in hospital working extremely hard on rehabilitation approaches (ie graded activity). I was then moved to a private nursing home, funded by my PCT, which was where Prof Findley was siphoning off patients to do the Lightning Process (I guess it wasn’t possible to get it funded in the NHS and done in the hospital setting). I had a LOT of pressure put on me to try the LP, and was pretty much coerced into spending £975 of my own money (despite being an NHS patient) on having Prof Findley’s LP “therapist” (not a health professional of any kind) do the LP with me at my bedside (I was largely bed bound at this point, and still am). The LP didn’t work for me and in fact caused a bad relapse as, despite being told over and over at the CFS Unit to keep activity levels consistent and not make sudden increases, the hours of “therapy” went way over what my established baseline of activity was at that time.

When I decided to quit the LP, the trainer called Phil Parker who sent me a message saying that i clearly didn’t want to get well, and subjecting me to horrible emotional blackmail bordering on abuse. They were saying this to a patient who had just enthusiastically complied 100% with the NICE guideline-consistent rehabilitation approaches used at Queen’s Hospital, for 6 months of intensive therapy and hard work, and had continued to comply and basically work extremely hard with therapists at the nursing home for several more months.

I notice that Prof Findley now has his own version of therapy, called Neuro Behavioural Training, which sounds suspiciously like the Lightning Process.

Needless to say, I feel sickened by the Lightning Process and the fact that some in the NHS seem to be encouraging its use. It’s pseudo-scientific nonsense distributed through a kind of pyramid sales system. And it actually does some patients harm, never mind robbing them of what little money they have.

Finally, I would like to add one point about the whole debate over treatment approaches for ME/CFS. It seems that many people with ME/CFS refuse to try any behavioural management approach, feeling that it labels them as having a mental illness which they feel they don’t have.

But when ME/CFS sufferers argue that they want to see something other than these approaches on offer, they have been accused, sometimes on this forum, of maligning the mentally ill, being in denial and so on. I would just like to point out that, as someone who’s been severely ill for many years, my only hope and objective is to get better and get my life back. I have, and continue to try behavioural approaches to managing my illness and increasing my functioning, but sadly this has only been of limited benefit. I am better able to manage some of my symptoms (largely through finally getting more appropriate medication) now, but my level of functioning is not improving. I would be overjoyed to have a more treatable condition, whether that was a mental health condition or not. So for me, when I complain about the over-emphasis on GET and CBT in the NHS, the only reason for that complaint is that I want to get well. And if GET and CBT haven’t worked for me, I’m obviously going to want other options to be investigated. I don’t often see this argument articulated – it comes out more as “how dare you suggest we’re mentally ill/our illness isn’t real”. But for me, it’s not about that fruitless mental v physical debate at all, and I expect others share my view. A great many ME/CFS patients have openly and willingly tried GET and CBT – we’re not all refusenik extremists – but have had little or no benefit from it.” http://www.badscience.net/forum/viewtopic.php?f=3&t=15791&start=1825

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

Archived NeBeT site:

http://web.archive.org/web/20110729072406/http://www.nebet.co.uk:80/

http://measussex.org.uk/about-us/medical-advisors/

Eta quote and for clarity.
 
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MEDICAL ADVISORS
lesliefindlay-150x150.jpg
Professor Leslie J Findley

Prof Findley is consultant neurologist and clinical lead at the Essex Neurosciences Unit at Queen’s Hospital. He is also clinical lead for the Clinical Network Coordinating Centre overseeing the NHS Kent & Medway CFS/ME Service.

Prof Findley received his undergraduate medical training at the University of Sheffield, graduating MB, ChB in 1968. Between 1973 and 1981 he undertook postgraduate training in neurology at the Institute of Neurology, London and St Mary’s Hospital Medical School. He was appointed consultant neurologist at the Essex Neurosciences Unit in 1981. He was visiting consultant neurologist to Queen Elizabeth Military Hospital until its closure in 1991 and was appointed Professor of Health Sciences (Neurology) at University of London, South Bank in 1996. Prof Findley is the Clinical Director of a referral centre for patients with complex fatigue syndromes of all types. He has contributed to WHO and national guidelines on the subject of diagnosis and management of fatigue syndromes.

alanstewart-113x150.gif
Dr Alan Stewart

Dr Alan Stewart qualified in medicine from Guy’s Hospital in 1976 and underwent training in a variety of medical specialities, becoming a member of the Royal College of Physicians in 1979. He has worked in the independent medical sector since the early 1980s and wrote a variety of popular books on nutrition and women’s health. His interest in CFS/ME developed in the early 1990s and was appointed to the post of medical practitioner to the NHS Sussex CFS/ME service at the end of 2012. He maintains a broad awareness of medical problems and undertakes regular training through the Royal College of Physicians as well as through the various CFS/ME medical groups and societies. Whilst the cause(s) of CFS/ME remain uncertain Dr Stewart considers that there is now a clear and common-sense pathway to help many people with this diagnosis as well as other types of fatigue using a multidisciplinary approach. He considers that the success of the service is very much due to the presence of an experienced team of physiotherapists, occupational therapists and psychologists aided by the activities of patient support groups.

esthercrawley-150x150.jpg
Professor Esther Crawley

Dr Esther Crawley, is a Reader in Child Health at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 200 children and young people per annum.

Dr Crawley completed her medical training in Oxford, and then worked in Birmingham and Liverpool before doing her PhD at University College London and Great Ormond Street Hospital. Esther then moved to Bristol and Bath and set up the paediatric CFS/ME service.

Dr Crawley is a medical advisor to the Association of young people with ME, was Chair of the British Association for CFS/ME (BACME, 2007-2010). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME, was on the guideline development group for the NICE guidelines published in August 2007 and the MRC CFS/ME expert working group (2009-2010).

neil.png
Dr Neil Harrison

Dr Harrison is Reader in Neuropsychiatry and Head of the Immunopsychiatry Group at Brighton & Sussex Medical School. He completed a PhD in Neuroscience at the Welcome Trust Centre for Neuroimaging (UCL), and Psychiatry training at the Institute for Psychiatry and National Hospital for Neurology. His research investigates how inflammation in the body acts on the brain to impair mood, motivation and cognition and how it contributes to illnesses like ME/CFS.



gabriellemurphy.jpg
Dr Gabrielle Murphy

Gabrielle Murphy is a specialist physician working in the Department of Immunity and Inflammation at the Royal Free Hospital in London. She is Clinical Lead of the Fatigue Service at The Royal Free Hampstead NHS Trust, and also works part-time in HIV medicine. Gabrielle began working in fatigue with Professor Tony Pinching at St Bartholomew’s Hospital in 2000 and then moved to the Free to re-open the service there. She has been an executive member of the CFS/ME network since 2002 (now BACME), hosted the 2003 and 2005 Conferences, and was Chair of the organisation for 2004-2005.

alastairmiller.jpg
Dr Alastair Miller

Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at Birmingham University. His main clinical interests are blood borne viruses, bone and joint infection and chronic fatigue syndrome/ME.

He has been involved clinically with ME/CFS since his time as a registrar in the mid 1980s. In the Navy he was the lead clinician and in Worcestershire he established a multidisciplinary team for CFS management. Since arriving in Merseyside he became the clinical lead for CFS and ran a diagnostic clinic and a therapy service in collaboration with therapy and psychology colleagues. He is Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME).


I know we've discussed Neil Harrison before - have to say he seems to be among a gang of BPS folk here
 
MEDICAL ADVISORS
lesliefindlay-150x150.jpg
Professor Leslie J Findley

Prof Findley is consultant neurologist and clinical lead at the Essex Neurosciences Unit at Queen’s Hospital. He is also clinical lead for the Clinical Network Coordinating Centre overseeing the NHS Kent & Medway CFS/ME Service.

Prof Findley received his undergraduate medical training at the University of Sheffield, graduating MB, ChB in 1968. Between 1973 and 1981 he undertook postgraduate training in neurology at the Institute of Neurology, London and St Mary’s Hospital Medical School. He was appointed consultant neurologist at the Essex Neurosciences Unit in 1981. He was visiting consultant neurologist to Queen Elizabeth Military Hospital until its closure in 1991 and was appointed Professor of Health Sciences (Neurology) at University of London, South Bank in 1996. Prof Findley is the Clinical Director of a referral centre for patients with complex fatigue syndromes of all types. He has contributed to WHO and national guidelines on the subject of diagnosis and management of fatigue syndromes.

alanstewart-113x150.gif
Dr Alan Stewart

Dr Alan Stewart qualified in medicine from Guy’s Hospital in 1976 and underwent training in a variety of medical specialities, becoming a member of the Royal College of Physicians in 1979. He has worked in the independent medical sector since the early 1980s and wrote a variety of popular books on nutrition and women’s health. His interest in CFS/ME developed in the early 1990s and was appointed to the post of medical practitioner to the NHS Sussex CFS/ME service at the end of 2012. He maintains a broad awareness of medical problems and undertakes regular training through the Royal College of Physicians as well as through the various CFS/ME medical groups and societies. Whilst the cause(s) of CFS/ME remain uncertain Dr Stewart considers that there is now a clear and common-sense pathway to help many people with this diagnosis as well as other types of fatigue using a multidisciplinary approach. He considers that the success of the service is very much due to the presence of an experienced team of physiotherapists, occupational therapists and psychologists aided by the activities of patient support groups.

esthercrawley-150x150.jpg
Professor Esther Crawley

Dr Esther Crawley, is a Reader in Child Health at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 200 children and young people per annum.

Dr Crawley completed her medical training in Oxford, and then worked in Birmingham and Liverpool before doing her PhD at University College London and Great Ormond Street Hospital. Esther then moved to Bristol and Bath and set up the paediatric CFS/ME service.

Dr Crawley is a medical advisor to the Association of young people with ME, was Chair of the British Association for CFS/ME (BACME, 2007-2010). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME, was on the guideline development group for the NICE guidelines published in August 2007 and the MRC CFS/ME expert working group (2009-2010).

neil.png
Dr Neil Harrison

Dr Harrison is Reader in Neuropsychiatry and Head of the Immunopsychiatry Group at Brighton & Sussex Medical School. He completed a PhD in Neuroscience at the Welcome Trust Centre for Neuroimaging (UCL), and Psychiatry training at the Institute for Psychiatry and National Hospital for Neurology. His research investigates how inflammation in the body acts on the brain to impair mood, motivation and cognition and how it contributes to illnesses like ME/CFS.



gabriellemurphy.jpg
Dr Gabrielle Murphy

Gabrielle Murphy is a specialist physician working in the Department of Immunity and Inflammation at the Royal Free Hospital in London. She is Clinical Lead of the Fatigue Service at The Royal Free Hampstead NHS Trust, and also works part-time in HIV medicine. Gabrielle began working in fatigue with Professor Tony Pinching at St Bartholomew’s Hospital in 2000 and then moved to the Free to re-open the service there. She has been an executive member of the CFS/ME network since 2002 (now BACME), hosted the 2003 and 2005 Conferences, and was Chair of the organisation for 2004-2005.

alastairmiller.jpg
Dr Alastair Miller

Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at Birmingham University. His main clinical interests are blood borne viruses, bone and joint infection and chronic fatigue syndrome/ME.

He has been involved clinically with ME/CFS since his time as a registrar in the mid 1980s. In the Navy he was the lead clinician and in Worcestershire he established a multidisciplinary team for CFS management. Since arriving in Merseyside he became the clinical lead for CFS and ran a diagnostic clinic and a therapy service in collaboration with therapy and psychology colleagues. He is Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME).


I know we've discussed Neil Harrison before - have to say he seems to be among a gang of BPS folk here

I was about to say the same thing. Looking at that list made me rather nauseous.
 
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