Blog Archive

Saturday 27 February 2010

CoCure Post 10jul18

ME - Juvenile Treatment-Testing and LP-CBT ethics

Suzy Chapmen on Co-Cure has recently drawn attention to the question of ethics in attempting a Lightning Process (LP) pilot study on children and juveniles suffering from ME. She is right to question such. The very nature and history of this psudo-treatment approach should dictate against even entertaining, yet alone dabbling in its dangerous claims. It is obvious that some individuals in the LP, if they are lucky, do not actually have ME in the first place, while others who do in fact and show some 'improvement' are simply drawing on margins of redundancy for extra energy expenditure that patients automatically build into their cautious use of activity generally. The unluky ones, encouraged and lured with promises of 'cure' in the LP trespass these self-protection margins, face precipitating a serious relapse.


The basic therapeutic 'rational' for the LP has been around for many years during which time its foundations, essentially Neuro Linguistic Programming (NLP) and Affirmation Therapy, have had plenty of time (and patient financing) to establish their scientific and medical validity. This they have failed to do long term.
Practitioners such as Leonard Orr of 'Re-birthing' fame, and others back in the early 1980s motivated their newly diagnosed and pathetically desperate HIV patients, for example, to go jogging along the beaches of California (where else!) while affirming repeatedly to TV cameras, and all, that they were no longer ill, did not have a life threatening medical condition, and were in fact in perfect health. This claim they were directed to assert most emphatically, and especially so - no matter how unwell they were or became, as if the 'magic' of insisting this to be the case could somehow make it so.
Then as now, patients were charged most handsomely for this treatment approach. Many such individuals back then, before the era of medical understanding and proper treatments for AIDS, went to their early death still chanting and 'affirming' their pathetic mantras of total denial. The modern versions of this nonsense, and it has various forms even among some charismatic 'healing' religions, just goes to show how difficult it is to kill off a good money making racket.


But Suzy Chapman has missed one similar and important parallel to the question of ethics in treating and testing child victims of ME with the LP. The proposal has recently been made in Wales that the NHS should be petitioned for an essentially CBT and GET-GAT treatment service for ME youngsters, alongside the already existing services for adults here in the Principality.


But notice how the facts and ethics of the LP and CBT link unmistakably.


Just as CBT thinking really began to replace the old 'talking and insight therapy' and catharsis types of approach to behavioural-psychologically (functional) based problems, at the same time Affermations and NLP appeared on the scene. As with the LP, and after all this time since, the scientific and medical validity of CBT and de-conditioning therapy for ME is also lacking, despite early robust efforts by the Welsh ME/CFS Service (with several others in the UK at the time) over five years between 1999 and 2004 to establish its value, using the best methodological, statistical and University (Bangor) facilities available. After some attempted spin-up, these poor results were later sat on.


Like the LP also, the CBT approach obviates the patient's instincts and intuitions concerning their health situation, as well as the views of their carers, friends and family. The patient in both paradigms has to denounce what they know they know, experience and have learned about their illness and coping in order to, supposedly, get better. And both regimes thereby effectively downgrade or refute the genuine seriousness, gravity and clinical authenticity of ME.


Like the LP, CBT/GAT also make promises that cannot be substantiated or upheld especially for our badly compromised patients; one nine year GP-diagnosed, severely effected and bedridden ME patient near Flintshire North Wales, for example, was told by her ME Clinic that she could be well and functioning within the year if she maintained the methods of their eight day training course. Meantime, similar attempts were made to overturn her longstanding ME diagnosis with her GP. Lightning Process patients are made equivalent promises, and are similarly directed to anathematise their 'ME' title and 'role'.


Most seriously and least obviously, both the LP and CBT/GAT approaches irresponsibly reject, ignore, are indifferent to, or deny the existence of (already) serious ongoing molecular and organic damage that will be exacerbated over time by inappropriate, incremented, upward gradations of kinetic load on those systems, elevating patients to within or beyond their energy redundancy zone, in the name and claim of 'improvement.' The compounding of this molecular damage could have mortal consequences for some ME patients, at least over the long-term wherein this therapy is supposed to operate.
In their recent comprehensive Review of the Research to date, for example, Twisk and Maes (2009 - 10) refer in this regard to forms of bio-chemical long-term damage that CBT and forms of Graded Activity/Exercise for ME patients could produce, stating that the therapy 'is not only ineffective and not evidence based, but also potentially harmful for many patients with ME.'


The question of ethics, of placing ME children in the direct oncoming path of a Lightning Process treatment and assessment - in a 'test to destruction' fashion, potentially a consequence in the short or long term - is therefore as unethical as doing so in its other latest crack-pot corollary recently announced here in the Principality as a new campaign; for another, specifically child and juvenile CBT/GAT Service for Wales.


Rejecting the Lightning Process and its flawed manifestations down the decades, it is for the same parallel reasons here given, between the two treatments, that we also reject and will actively campaign against such an irresponsible, scientifically indefensible and, yes, un-ethical CBT/GET nhs development for our young ME people living here in North Wales.


Karl Krysko, BA Hons, BSc.



ME/FM and Neurological Questions -
to the new BCU Health Board Planning Director.


On Tuesday 10mar09 the Long Term Health and Chronic Condition Alliance conducted a meeting in the main Board Room of the Ysbyty Gwynedd, Bangor. A presentation by invitation was given by Neil Bradshaw, Director of Planning for the Betsi Cadwalader University (BCU) Health Board. The aim is a unified super trust health service across North Wales, named after a Welsh nurse from Bala who served in the Crimean War. There will be a merging of the existing NHS trusts and corresponding LHBs to simplify the NHS structure in the area.

Among many other items, Neil pointed out that part of the intention of the new service is to ‘stop wasteful clinical interventions’ as one of its 14 new principle objectives. As former Chair of the Alliance, and representing ME/CFS FM patients in N Wales at the meeting, I asked ‘if that would include the secession of psychological clinical interventions like CBT/GET for our patients in N Wales, for a medical condition that is designated as Neurological by the World Health Organization?’ His response suggested that if such interventions were found to be wasteful, they would be subject to the intentions of item 14.

Later in Question time, I noted to Neil and the meeting that the Welsh Neurological Alliance (WNA) of which again I was a founding member, had for the last ten years bemoaned the fact that neurological services in Wales were the worst in all Europe. While his presentation had specified several key health ‘genera’ among eleven Clinical Programming Groups he had listed, such as Cancer, Mental Health, Radiology, Pain and so on, I stated that ‘there had been no mention of the ongoing problematic Neurological provision for Welsh patients, though ‘stroke’ alone had been mentioned in passing just once, a condition some might regard as vascular anyway,’ in the two hour meeting. He responded that the list had not mentioned several other key health areas such as Cardio-vascular, but Neil failed to address the concern that I had illustrated noting that ‘such a stroke victim in Holyhead, for example, faced a 100 mile plus rush to the best nearest neurological center, at Walton Hospital near Liverpool, for supposedly urgent assessment and treatment.’

It seems the new BCU has no current plans to directly address the shocking lack of provision for neurological (including ME/FM) patients here in Wales. For those who think that going into England for treatment is at least some compensation, the English neurological service provision is the second worse in Europe.

Karl