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Rapid Responses: Rapid Responses published:
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MRC WANTS YET MORE AMATEURS TO ADVISE IT
- Clifford G. Miller (30 September 2004)
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Vaccine Reactions and SBS should have priority.
- Michael D Innis (2 October 2004)
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Re: Vaccine Reactions and SBS should have priority.
- John Stone (3 October 2004)
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Re: Vaccine Reactions and SBS should have priority.
- susanne mccabe (3 October 2004)
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Re: Interested member of public concerned about effects of multiple vaccines.
- Carol Johnston (3 October 2004)
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Clifford G. Miller, Lawyer, graduate physicist, former examining university lecturer in law Beckenham, Kent, England BR3 3LA
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Dear Sir, Doesn't it make you proud to be British. It is hardly surprising the House of Commons Health Select Committee is investigating formally 'The Influence of the Pharmaceutical Industry' when we run things like this. It is also hardly surprising that drugs like thioridazine stay on the market for practically the entire life of the Yellow Card scheme until someone belated decides to research what was already known anecdotally for some long time, that thioridazine is a killer (1). Hidden in the subtext of Minerva (2) is shown, as usual, our civil servants want to do everything on the cheap, calling for unpaid 'volunteers' from the public 'with the time, energy and enthusiasm to want to make a difference to medical research and the work of the MRC' and 'The two new groups offer an opportunity to get involved at a level and location that would suit a volunteer’s interests and availability'. Comparing that with the billions drug companies have puts the matter in context. No doubt this one gets special provision as an extra line in the MRC's tea and biscuit budget. The original deadline for applications for appointment to the Advisory Group on Public Involvement (AGPI) and the new Network of Public Involvement (NOPI) expired today, 1st October (3, 4), but this item in Minverva refers to 8th October, an extension of one week. Expenses only will be paid but the MRC "is looking to recruit people from a diverse range of backgrounds and life experiences who have good communication skills, plenty of enthusiasm, an interest in the aims of committee, the ability to devote time and energy to the subject, a wide network of existing contacts and a willingness to make a valuable contribution to public health in the future." and also says "Group members would not usually have a scientific or medical background; however applicants are encouraged to have an interest in current and future MRC activities and research. " Not surprising the shortage of takers then? As the old legal joke goes:- "M'lud in Oldham they talk of nowt else". What really gives the game away and suggests these two talking shops are valued as highly as their remuneration are the kinds of phrases one sees commonly in the world of academe. Examples:- - the original group is claimed to have "made a major contribution" in "bringing a public perspective to decision making" within the MRC. - Members of the group have been "closely involved" in "developing strategies" for "emerging cutting edge areas of medical science". - Members "play" an "active role" in "discussing" ethical issues, "commenting" on documents, such as patient information leaflets, and "take part in consultation". - Group members could find themselves "involved at the earliest planning stage" for some activities, or "bringing new ideas" to later stages of research, or "providing input" to MRC research boards. More openness in public interest decision making is laudable, but is this just another one of those sops to enable the people pulling the strings to claim they consult with the 'public'? What kind of ordinary member of the public has the time and resources to devote to these kinds of talking shops which are so popular they cannot get enough applicants? _____________________________________ 1) Thioridazine is startling because, despite it being a killer (J. G. Reilly, S. A. Ayis, I. N. Ferrier, S. J. Jones and S. H. L. Thomas. QTc -interval abnormalities and psychotropic drug therapy in psychiatric patients. Lancet 2000, 355, 1048-1052) and a certain cause of poisoning of the brain and nervous system leading to 4% per annum developing tardive diskynesia, by dint of a flawed system it continued to be licensed for almost the entire 40 years that the Yellow Card Scheme has existed and the scandal never made the headlines - but then, it was only elderly and mentally ill who swallowed 450,000 prescriptions per annum and the odd death of an elderly or mentally ill patient from ‘heart failure’ (quoted consultant pathologist’s use of that term from one case) would most likely be recorded as ‘natural causes’. 2) MINERVA: Minerva BMJ, Oct 2004; 329: 808. http://bmj.bmjjournals.com/cgi/content/full/329/7469/808 3) HERO Friday 24 September 2004 http://www.hero.ac.uk/media_relations/7358.cfm 4) MRC Press Release, 23 September 2004 http://www.mrc.ac.uk/txt/index/public-interest/public-press_office/public- press_releases_2004/public-23_september_2004.htm Competing interests: Close relative with life threatening food allergy |
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Michael D Innis, Director Medisets International Home 4575
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Editor, As one of the many“ enthusiastic members of the public interested in having their say about how the medical research agenda should be shaped in Britain”. I tried to get more information from fatima.deabreu@headoffice.mrc.ac.uk but the postmaster@headoffice said the delivery failed. I wanted to tell the MRC that besides their research into autism, Creutzfeldt-Jacob disease, and stem cell science they should research the action of multiple vaccines given to children and also the inadequacy of the nutrients in the various substitutes for breast milk put out by commercial firms. On both these topics I could supply the MRC with documented evidence if they care to investigate unpleasant truths. But maybe that's too close to the bone! Michael Innis. Competing interests: As previously declared and a desire to Educate. |
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John Stone, none London N22
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Just to say that I shared Michael Innis's experience of having my enquiry bounce back, though I also note Clifford Miller's warning and view the entire matter with extreme scepticism. My experience of sitting as a parent representative on committees in local government is that they use them to limit your freedom of expression while taking no account of your views in formulatiing policy. Competing interests: parent of an autistic child |
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susanne mccabe, retired cf 24 3pf
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Michael Innes is not the only one having difficulty in getting a response from the MRC, to requests for more information about their stated desire for more 'enthusiastic members of the public to apply. Is it more tokenism? Is is another cosy club? By the way these appointments may be technically 'unpaid' but many accrue the sort of expenses many would regard as a wage. Members of the public should be told the renumeration for 'voluntary/unpaid' appointments; who sits on selection boards; what criteria is used for selection to such bodies - and the same people should not be circulating around forever. However dedicated or 'expert' they become, at some stage other voices, need to be heard. Competing interests: None declared |
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Carol Johnston, Carer Carshalton, Surrey UK
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I have also tried to email the address shown in article, and it has come back undeliverable. Perhaps someone from MRC could email me with some information. Am particularly interested in the area of effects of multiple vaccines. Competing interests: 2 ASD kids post MMR |
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