press relese re lightening process challenge research on children

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Sep 2, 2010.

  1. simpsons

    simpsons Member

    or just find your way to the me association web page and go to the news page read it there

    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.
    The statement can be read here.

    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 committeesmust 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.
    Go to previous < < McCarrick Films: two-part documentary 'All About ME' Go to next > > 'ME centre plans a step closer' – Eastern Daily Press, 30 August 2010

    [This Message was Edited on 09/02/2010]
  2. Tizz

    Tizz New Member

    What is "the Lightning Process"?

  3. karinaxx

    karinaxx New Member

    stopped, it is another crime committed on children with ME/CFS!

    It has to be stopped !

  4. Tizz

    Tizz New Member

    Sadly, there is never a shortage of people eager to take advantage of those who are desperate for a cure.
  5. amomwithsickkids

    amomwithsickkids New Member

    The phrases "feasibility study" "involving children and adolescents" & " Lightning Process" used in the same paragraph is terrifying.

    Hopefully the "number of concerns" will be enough to stop this nonsense.

    There was a young woman who passed away in England not long ago who I remember reading about on this board. What happened to her was a sin.

    I pray that the powers that be in the UK come to know how damaging this thought process is and that those who are ill are recognized for BEING PHYSICALLY ILL!