Child Experimentation on the NHS; a new article on MESHARE

Child Experimentation on the NHS; a new article on MESHARE

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

From Peter Kemp

9 August 2010

http://groups.google.co.uk/group/meshare/web/child-experimentation-on-the-nhs

This article and several others about the proposal to test the lightning process on children are now available on MESHARE for group newsletters.

Peter Kemp 

Child Experimentation on the NHS

On 2nd March, 2010, the Royal National Hospital for Rheumatic Diseases announced that £164,000 had been awarded for a trial using the ‘lightning process’ (LP) on children with CFS (1). This move has been condemned as  unethical’ by the ME Association and Tymes Trust, leading UK charities (2).

Needless to say, lightning process practitioners are getting in on the act – with this announcement blandished on the front page of the first 3 LP websites I looked at last week. And why not – after all it does appear that the NHS is giving credence to this expensive alternative therapy.

The proposed research puts parents in a very awkward position when it comes to deciding whether to consent to their sick child participating. Parents may have been exposed to the hard-sell type websites that promote LP and a parent’s own vulnerability due to concern for their child with CFS would almost certainly affect their judgement. Could they deprive their child of a chance to get treatment that might restore their health?

Yet a parent that consents would be choosing a highly experimental treatment for their child, delivered in a way that fails to meet established ethical standards.

The researchers themselves are in a very awkward position. Any medical professional that cooperates with the research would be in breach of ethical codes governing such research. The General Medical Council (GMC) rules are unequivocal: “Children or young peopl should be involved in research only when research on adults cannot provide the same benefits” (3). The Declaration of Helsinki also remarks on using vulnerable groups who are deemed ‘incompetent’ to give informed consent for research – i.e. children:

“For a potential research subject who is incompetent, the physician must seek informed consent from the legally authorized representative. These individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the population represented by the potential subject, the research cannot instead be performed with competent persons, and the research entails only minimal risk and minimal burden.” (4).

And the Royal College of Paediatrics (RPC) states: “Research with children should be undertaken only if work with adults is clearly not feasible.” (5)

So why choose children for lightning process research?

Among several possible reasons for choosing to experiment on children with the LP might be the fact that children are impressionable. They can be controlled and manipulated more easily than adults. As the RCP remarks: “Many children are vulnerable, easily bewildered and frightened, and unable to express their needs or defend their interests.” (5)

This appears to be something that could be taken advantage of. As Marshall and Williams note from a discussion in 2005 which included several Wessely school theorists:

“At this point, Trudie Chalder made a truly disturbing contribution: “Rather than start with the physicians, which might be quite a difficult task, we could make a start with youngsters in schools. My experience is that they are much easier to educate. The only barrier is the parents. Once we have the child on our side we are in a very good position”.” (6)

Removing the ‘barrier’ of at least some parents to permit experimentation with LP on children, might not be a very difficult task. Parents on a low income for whom the cost of LP would be prohibitive might leap at a chance to save around £700 by getting the treatment for their child for free. Parents on higher incomes might choose to play it safe and wait until the trial results come out. Then if the results look good and the risks seem low, they may then choose to purchase LP for their child.

This means that financial inducement could be acting on those who choose participation. This is because the research is proposing to give a commercial product free of charge. The RCP (5) state: “For consent to be freely given researchers must: offer families no financial inducement”.

As the lightning process might be described simplistically as ‘thought control’, children are probably the group most likely to be easily and profoundly affected. They are also the group who could suffer the longest lasting negative effects if things go wrong; as the RCP point out (5):

“Children are unique as a research group for many reasons. They are the only people, in British law, on whose behalf other individuals may consent to medical procedures. Many children are vulnerable, easily bewildered and frightened, and unable to express their needs or defend their interests. Potentially with many decades ahead of them, they are likely to experience, in their development and education, the most lasting benefits or harms from research.”

In the same dialogue reported by Marshall and Williams (above); Professor Malmgren made a spookily prophetic suggestion:

“Helge Malmgren, Professor of Theoretical Philosophy, Goteborg University, Sweden, said: “Considering that so many people go to alternative and complementary medicine practitioners, perhaps we should not only confront alternative medicine, but also try to make alliances. In particular, we could try this with practitioners who use brands of alternative medicine that we think have some plausibility”.” (6)

Is this what is happening?

Peter Kemp
Aug 2010

REFERENCES

(1) Royal National Hospital for Rheumatic Diseases. £164,000 awarded for new research into the treatment of a chronic childhood condition. 2nd March 2010. Media Release. [Online]. Available at:
http://www.rnhrd.nhs.uk/index_sub_menus/news/documents/FINALRNHRDCFS_ME_fundingfeb10.pdf 
Accessed Aug 6th 2010.

(2) ME Association and Tymes Trust. Study involving children and the Lightning Process is unethical, says joint charity statement. [Online]. Available at: http://tinyurl.com/MEA-TYMESTrust-LP-Statement . Accessed Aug 5th 2010.

(3) General Medical Council. 0-18 years: guidance for all doctors. [Online]. Available at:
http://www.gmc-uk.org/static/documents/content/GMC_0-18_0911.pdf . Accessed Aug 5th 2010.

(4) The World Health Organization. Declaration of Helsinki 2008. [Online]. Available at:
http://www.wma.net/en/30publications/10policies/b3/17c.pdf . Accessed Aug 5th 2010.

(5) Royal College of Paediatrics, Child Health: Ethics Advisory Committee; and PROFESSOR SIR DAVID HULL. Guidelines for the ethical conduct of medical research involving children. Archives of Disease in Childhood. 2000;82;177-182. [Online]. Available at:
http://www.rcpch.ac.uk/doc.aspx?id_Resource=2222 . Accessed Aug 5th 2010.

(6) Eileen Marshall, Margaret Williams. PROOF POSITIVE? 30th August, 2005. [Online]. Available at:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0509A&L=CO-CURE&P=R155&I=-3&X=63C6A87C14EE59B163&Y=counsellingme%40yahoo.co.uk . Accessed Aug 5th 2010.

Ed: Context for quote (6)

http://mefreeforall.org/index.php?id=1641

08/10/07

Re: Appropriate treatments for M.E., 10 August 2007

From: Douglas Fraser, M.E. sufferer, London
To: Sir Peter Spencer, Chief Executive Officer, Action for ME.

[…]

However an example of how PACE trialists Chalder, Deary and Gerada-Wessely use information offered them in good faith by members of the public and recycle this against other members of the public, can be observed in an IoP video produced by Satrorious, Goldberg and Gask, during which they practise their contrived art of outsmarting members of the public, a technique apparently requiring ‘role playing’ because ‘it’s only by rehearsing the skills that you need that you’ll be able to use them when faced with the real situation’.

This video was originally titled: ‘Maudsley videos: The treatment of chronic fatigue (“ME”) in primary care – Dr Tylee interviews Dr Trudy Chalder of the Maudsley Hospital. The package demonstrates how not to get into arguments with the patient, how to form a therapeutic alliance with them, and how to carry out a plan of treatment aimed at the restoration of normal function’, and was recently put online in March 2006 at : 

http://webcasts.prous.com/Chronic_Fatigue/program.asp

Encouraging Chalder, Deary, Gerada-Wessely, Deale and the others involved in this self-promotional video, and without a flicker of doubt about their unscientific methods, ignorance of human behaviour, armchair speculation about others, dangerous advice to GPs, specious reasoning and contrived explanations of M.E., Andre Tylee gives voice very expicitly to what they project throughout this performance in terms of their obvious collective contempt at the ‘stupidity’ of M.E. sufferers, with the familiar excuse over failure: it’s these ‘chronic fatigue syndrome patients [that] are difficult’. Chillingly, one of this group of social determinists, naively unaware of the dark lessons of social engineering from the past, recently voiced her ambitions that (Chalder T in PD White 2005): “Rather than start with the physicians, which might be quite a difficult task, we could make a start with youngsters in schools. My experience is that they are much easier to educate and to treat. The only barrier is the parents. Once we have the child or older youngster on our side we are in a very good position. They take up the messages up very quickly.”

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