networkedblogs.com:
"If you wish to raise further concerns directly with the team investigating the issue, please email info@nspcc.org.uk and put 'Medical trial on children with ME' ...in the subject line. You can use the following template letter or use part of it to build your own:
For the NSPCC team investigating the 'SMILE'/Lightning Process medical research on children with ME.
The protocol for this medical research states that is has been granted ethics approval (despite the treatment in question not having been researched on adults first) because “CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children.”
This contention appears to be based on three UK psychiatric research papers (see 1,2,3 below) and ignores any and all UK and international biomedical research which indicates that ME is the same in children as in adults."
4 comments:
to access the discussion on the NSPCC's Facebook page, it is necessary to click on the 'NSPCC + Others' link:
http://www.facebook.com/group.php?gid=161202941967&ref=share#!/nspcc
MAY BE REPOSTED
Thursday 23 September 2010
Further to the Statement issued by The ME Association and The Young ME =
Sufferers Trust about the proposed study of the Lighting Process in =
children.=20
The two charities followed up this Statement with a joint letter to the =
Chair of the Ethics Committee charged with approval or rejection of the =
study.=20
A copy of the Statement was enclosed.
A reply has not yet been received.
Original joint statement dated Wednesday 4 August 2010:
http://www.meassociation.org.uk/index.php?option=3Dcom_content&view=3Dart=
icle&catid=3D30%3Anews&id=3D1363%3Ascientific-trial-involving-children-an=
d-the-lightning-process-is-unethical-says-joint-charities-statement&Itemi=
d=3D161
Follow up joint statement:dated Wednesday 1 September 2010:
http://www.meassociation.org.uk/index.php?option=3Dcom_content&view=3Dart=
icle&id=3D1389:lightning-process-further-statement-from-me-association-an=
d-young-me-sufferers-trust&catid=3D30:news&Itemid=3D161
Lightning Process: further statement from ME Association and Young ME Sufferers Trust
Wednesday, 01 September 2010 09:08
"On 4 August 2010 The ME Association and The Young ME Sufferers Trust (Tymes Trust) issued a joint statement that expressed a number of concerns about the proposal to carry out a feasibility study, involving children and adolescents with ME/CFS, into the use of the Lightning Process.
We also sent a copy of this statement to the Department of Health with a request that it should be forwarded to the ethics committee that will be examining this proposal. This is because we believe the ethics committee should be aware of widespread concerns being expressed by people with ME/CFS about the trial. Our statement also contained information about an adjudication from the Advertising Standards Authority and interventions by several trading standards officials - both in relation to therapeutic claims being made for the Lightning Process which we believe the ethics committees must be aware of when reviewing this proposal
The Department of Health have refused to forward this information to the ethics committee on the grounds that
"We expect research ethics committees to consider all the relevant evidence, but they have to be seen do so objectively and impartially and to arrive at their decisions independently if they are to command public confidence and the credibility of all the stakeholders concerned. For this reason, it would be inappropriate, as well as potentially counterproductive, expressly to bring your joint statement to the attention of the research ethics committee reviewing the proposal for this project.."
We profoundly disagree with the DoH's reasoning, which we consider carries serious implications for the integrity of the scientific process. Whether or not an ethics committee membership is confidential, it should still be possible for essential evidence to be supplied to them. How else can the public be assured that an ethics committee has all the relevant evidence to consider before reaching its decision?
The two charities are unable to forward this statement direct because the identity and location of the relevant ethics committee is not in the public domain
We are now considering what further action to take."
their original statement is here:
"Study involving children and the Lightning Process is unethical, says joint charity statement "
http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1363&Itemid=229
http://web.archive.org/web/20080326165601/http://www.healinghawk.com/prospectushealing.htm
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