A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics

A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics – two views

Shortlink: http://wp.me/p5foE-2XM

“The first thing was to take responsibility for our illness. I had to stop saying I had M.E. Instead I have to say I am ‘doing M.E’, I wasn’t tired, I was ‘doing tired and doing muscle aches’. The implication being if I am doing it I can stop doing it.” [9]

20 July 2010

Published with kind permission of Karl Krysko.

A version of this commentary was published earlier today, on the Co-Cure Listserv mailing list.

Juvenile Treatment -Testing and LP-CBT/GET ethics

Recent attention has been drawn to the question of ethics in attempting a Lightning Process (LP) pilot study on children and juveniles suffering from ME. It is right to question such. The very nature and history of this pseudo-treatment approach should dictate against even entertaining the thought, 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 and unconsciously build into their cautious use of activity generally. The un-lucky ones, however, encouraged and lured with promises of ‘cure’ in the LP trespass these self-protection margins, and face precipitating a serious relapse.

The basic therapeutic ‘rationale’ 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 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 felt 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 the AIDS virus, went to their early death still chanting and ‘affirming’ their pathetic mantras, in 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 the current discussion 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/GET link unmistakably:

Just as CBT thinking really began to replace the old ‘taking and insight therapy’ and catharsis types of approach to behavioural-psychological based problems, at the same time Affirmations 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, here for example, by the Welsh ME/CFS Service (with several others conducted 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, those poor results were later sat on.

Like the LP also, the CBT approach obviates the patients’ 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, clearly so for our badly compromised patients; one nine year GP-diagnosed, for example, severely effected and bedridden ME patient near Flintshire north Wales, was told by her ME Clinic that she would be well and functioning within the year, if she maintained the methods propagated at 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 encouraged to anathematise their ‘ME title and patient ‘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, in the name and claim of ‘improvement.’ The compounding of this molecular damage could have mortal consequences for many ME patients, at least over the long-term and wherein, temporally, this therapy is exactly designed to operate.

In their most recent and 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 methods like 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 hit-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 analogue recently announced here in the Principality as ‘a new campaign’; for yet another, this time 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, unethical NHS development for our young ME victims living here in North Wales.

Karl Krysko  BA (hons), BSc.

 

Although Ms Jacqui Footman signs herself, in this Co-Cure opinion piece, as a “Mother and Information Officer, South Molton ME Support Group”, Ms Footman fails to disclose a conflict of interest.

Ms Footman is a provider of EFT and similar therapies and advertises her business in the magazines of national patient organisations.

Advert from an ME Association magazine – ME Essential

“Jacqui’s EFT practice combines aspects of counselling, life-coaching, NLP and psychotherapies such as CBT and solution-focussed therapy with the powerful new energy-psychology technique EFT, which involves tapping acupuncture points to bring about dramatic personal change and healing. EFT is available by phone.

“Jacqui Footman BA (Hon), PGCE, Member National Council of Psychotherapists, Practitioner of Emotional Freedom Techniques (EFT), NLP, EMDR, WHEE, EmoTrance and Reiki. Registered (General Regulatory Council for Complimentary Therapies). Trained by Dr Myhill to support her ME/CFS treatment programme. Info Officer, South Molton ME Support Group with extensive experience of ME/CFS at many levels.”

Published on the Co-Cure Listserv mailing list  |  20 July 2010

From Jacqui Footman

[CO-CURE] NOT, MED, ACT: A question of ethics

Speaking of ethics, my question – is it ethical to attempt to deny 90 children/young people the opportunity to have their young lives back? or to try to persuade others to rescind that opportunity?

My 12-year-old was diagnosed with ME 3 months after glandular fever. The diagnosis was confirmed by our two UK best-known paediatricians in the field, Drs Speight and Crawley. She definitely had ME/CFS. She went from active swimmer and gymnast to wheelchair. She missed a year of school. Out of desperation with an NHS strict activity management approach which was driving her to distraction and starting to cause her to feel miserable she reached out to Lightning Process(LP) … and was back to enjoying an active life within weeks.

The LP Practitioner she saw has worked with many teenagers and has 100% success rate with teenagers so far.

Because of the obvious change when my daughter did LP, notably that she immediately went from so often looking deathly pale to having a constant healthy rosy complexion, someone in our local ME support group who had been bedbound for 10 years since being made dreadfully worse with CBT/GET decided there must be something to LP and it must have some sort of capacity to directly affect the physiology. She mustered the courage to try LP herself and the same practitioner went to her house to do it with her as she wasn’t well enough to get to a LP course. She was walking round her garden by the third day of the LP course and has gone from strength to strength since. That was over a year ago. She has just won a design competition and is to start the high profile design course in Oxford for which she won the fees in September this year. She has a life again after 17 years of existence in a bed. She had ME/CFS too, no question.

LP is nothing like the NHS CBT/GET/GAT treatments. I’ve detailed knowledge of both. LP bears no relationship to the deconditioning theories etc upon which CBT treatments have been based.

When LP first came out I was sceptical. After this personal experience and observation I don’t hesitate to recommend this LP Practitioner who once had ME/CFS herself and has a brilliant understanding of what people need to get well and gives all the support and follow-up needed. Although I don’t recommend LP per se without qualification. I do believe there should be further research. LP seems to work best with young people.

Jacqui Footman
Mother and
Information Officer, South Molton ME Support Group
info@mecfssupportdevon.org.uk
(please note, long and negative anti-LP emails will not be answered, so save your energy)

Related material:

Press Release issued 2 March 2010: Research study to investigate a chronic childhood condition
 

For background to this issue see ME agenda 5 July report:

Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process)

Poll: Do you think it is ethical to undertake a pilot study looking at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing Lightning Process and specialist medical care when no rigorous RCTs into the application of LP in adults have been undertaken? 

Register your opinion here: http://tinyurl.com/LightningProcessPilotStudyPoll 

References:    

[1] Press Release, University of Bristol, 2 March 2010:
http://www.bristol.ac.uk/news/2010/6866.html   
Media article: Chronic fatigue syndrome study Mineral Water Hospital 

[2] ME Association position statement on Lightning Process, February 2007  

[3] Action for M.E. article on Lightning Process, InterAction magazine, March 2007:
http://www.afme.org.uk/res/img/resources/IA%2059%20lightning%20process.pdf    

[4] Patient Survey 2008, Action for M.E. and AYME:
http://www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf    

Patient Survey May 2010, ME Association:
http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf   

[5] Minutes, Forward-ME meeting, House of Lords, 8 July 2009:
http://www.forward-me.org.uk/8th%20July%202009.htm    

[6] MRC Guidelines Medical Research Involving Children (Nov 2004, revised Aug 2007):
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430    

[7] Request for information under FOI and FOI Office responses: 
FOI – Lightning Study Chapman 17.06.10  

[8] Lightning Process website
http://www.lightningprocess.com/ 

[9] LP Doesn’t Work for ME: Personal accounts from LP “trainees”:
http://www.sayer.abel.co.uk/LP.html 

Letter: Lightning process for ME didn’t work for me:
http://www.thisisnorthdevon.co.uk/news/Lightning-process-didn-t-work/article-613394-detail/article.html    

Personal account of Lightning Process technique as applied to patient with ME: 
http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process&p=77679&viewfull=1#post77679 

Personal account of Lightning Process as applied to patients with ME and MS:
http://forums.randi.org/showpost.php?p=4293368&postcount=1   

[10] Sample Lightning Process application form:
http://www.changeworksforyou.com/applicationform.htm 

[11] ASA adjudication against “Withinspiration”, June 2010:
http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx   

[12] Withinspiration “NHS and Lightning Process research collaboration”:
http://www.withinspiration.co.uk/lightning_process_NHS_research.php    

[13] Radio 4 Case Notes: Dr Crawley on CFS clinic approach, November 2007 
http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml 

[14] RNHRD Bath Chronic Fatigue Syndrome/ME Service for Children & Young People
http://www.rnhrd.nhs.uk/departments/chronic_fatigue_syndrome_children.htm

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