Action for M.E. and Lightning Process research on children – An opinion: Peter Kemp

Action for M.E. and Lightning Process research on children – An opinion: Peter Kemp

Shortlink: http://wp.me/p5foE-31S

From Peter Kemp

21 August 2010

AfME stated on their facebook page (http://wp.me/p5foE-31M ) on 20th August, 2010:

“It is a fact that many parents are already taking their children to LP practitioners and so there are urgent questions that need to be addressed in order to assure the safety of those children.”

This gobbledegook does not explain or justify AfME’s support for LP experimentation on children.

Are the children in some kind of danger as AfME’s statement implies? If so then LP practitioners should urgently be prevented from tampering with the vulnerable minds of sick children until LP is properly researched. But this does not appear to be AfME’s intention.

Or are AfME suggesting that because some children are already LP subjects this somehow makes it ok to experiment with LP on children in formal research?

If ethics theorists took this approach then codes and guidelines intended to protect children might simply say – ‘if the parents think it’s ok, then children can be experimented on’.

Guidelines don’t say that. They say that adults should always be experimented on first if it is possible to do so. With LP it is perfectly feasible to try it on adults first, “in order to assure the safety of those children”.

AfME seem to be resting on a cop-out to justify their support of experimenting on children’s minds:

“Before any research is approved, an ethics committee scrutinises the proposals to ensure that the rules about research involving children are satisfied. The committee also ensures that proper safety systems are in place and include safety monitoring by an independent committee.”

Ethics is an evolving area of human values. Almost no ethical statement, code or guideline survives more than a few years before weaknesses are found that must be addressed with updated versions. To take a position similar to – ‘if an ethics committee says it’s ok then we agree’ – is capitulating all responsibility to defend the rights and interests of children with M.E. The only thing that any ethics committee can be relied upon to do, is to try and figure out if a particular research project is safe and legal within the limits of current knowledge and human frailty.

AfME are supposed to be an ‘M.E.’ charity. Are they unaware that many people, including many doctors, do not understand M.E.?

Ethics committees are comprised of people who might have no more knowledge of the seriousness of M.E. than those who believe M.E. is simply ‘fatigue’. I can easily envisage an ethics committee approving LP research because of such misconceptions.

If AfME believed, as do others, that M.E. is a serious neurological/immunological illness I think they would join with the credible M.E. patient organizations and individuals who are opposed to children being experimented on with LP. Adults can make their own informed choice – so experiment on them first.

Peter Kemp