Doctor Speedy and ME
in search of medical honesty
* * 15:52 Smitten Cowell finds 'the one'_ * 14:52 * 14:52 * 14:32 * 14:22 * 14:22 * 14:22Search Query: Go Advanced searchConstant agony of an ME suffererThursday, 18 February 2010http://www.belfasttelegraph.co.uk/opinion/letters/constant-agony-of-an-me-sufferer-14686747.htmlThank you for the article highlighting ME (February 9). I am now in my fourth year of suffering from the illness.Like Lynn Gilderdale, my ME was brought on by glandular fever and severe tonsillitis as a child.I am in constant pain and suffer from flu-like symptoms, severe fatigue and nausea.My husband also has MS and before I became ill I was his carer. Now we try to help each other as best we can.My husband gets much more help with his MS and people don't doubt his disability although most people treat me with scepticism.I have had to fight for financial support since I became ill and recently the DLA refused to renew my care allowance although my symptoms have not improved and I feel I have actually deteriorated. Since my ME diagnosis I have also been diagnosed with fibromyalgia, depression, allergies and IBS.I have written to Michael McGimpsey, the Health Minister, to ask that more help be given to ME sufferers in Northern Ireland and wait hopefully for him to act.I am only 36-years-old and I feel my life is over.GILLIAN WRIGHTBangor
Permission to RepostThe Ramsay Research FundFollowing Professor Hooper's comments about money being wasted on poornon-replication research (see below) my mind was cast back to not long after8th October 2009.Dr Charles Shepherd was ultra keen to hear from people approaching the MEAssociation for funds towards prospective XMRV research.Dr Shepherd cited back then at least four interested groups who were wantingmonies for XMRV research.We should be asking the ME Association if they are giving their valuableresearch cash to ANY groups presently carrying out what is becoming known as"Quick and Dirty" non-replication research - research that has alreadydemonstrated nothing more than 0% positive findings.As we have already discussed here on MEActionUK, replication researchrequires that all patients tested should transparently meet both the Fukudaand the Canadian diagnostic criteria to ensure that the patient cohort isnot diluted in any way by those who may be suffering from "FatigueSyndromes" unrelated to Myalgic Encephalomyelitis or indeed ICD-10 G93 CFS.As Mithriel said earlier.The WPI had a fairly robust test worked out before they started testingpeople with CFS.This MRC group should have used a positive blood sample to test theirmethods until they were working well. Only then could they say anythingmeaningful about CFS patients.Before a test is optimised, patient samples should be the best qualityavailable if there is going to be any chance of detecting virus and theyshould be from those patients who are most likely to have the infection - infact the group the WPI tested.Just fulfilling the Fukuda definition is not enough.Anyone who has been around ME patients should be able to pick out aconsistent set of symptoms.Once a test has been validated and shown to detect virus in ME/CFS THEN itwould be reasonable to take random samples from the clinics to see if thosepatients had ME/CFS or something else. To use them to test the theory isback to front.MithrielWe need to know what the Ramsey Research Fund is now being used for.Is ME Association Funding being used for the current crop of "Quick andDirty" research that fails to replicate Lombardi et al. yet tries to makeout that it is better than Lombardi et al.?Or is Ramsay Research Fund money being used properly i.e. for genuinereplication research that compares known positive samples from Lombardi etal with proposed tests over here in the UK until such tests in this countrybecome competent enough to actually find XMRV positive patients over here?We already know that there are XMRV positive CFS and ME patients over herein the UK - more and more people tested privately are finding themselvesXMRV positive. To say that such people do not exist only confirms thefailure of the present UK research thus far.If Melvin Ramsay knew that his fund was quite possibly being used for thepurposes of scoring political points due to monies in the fund that carrieshis name being used for "quick and dirty" sub-standard non-replicationresearch then my view is that he would be greatly saddened......
cont....Poor science does none of us any good except for those trying desperately toscore expensive and deceptive political points by claiming headlines thatimply doubtful or no link at all between XMRV, Myalgic Encephalomyelitis andICD-10 G93.3 CFS.If something is worth doing it is worth doing to the highest standardspossible.As Professor Hooper stated earlier today.I would expect such good experimental scientists to honour theLombardi/Mikovits study by the most careful, replication of patientcharacterisation/classification and methodological exactitude.This does not appear to have been the case - what a waste of money and whata waste of an opportunity to substantiate the work of Lombardi et al.No wonder such elementary failures regarding patients and method lead manyto the conclusion that deception and skulduggery is afoot.Malcolm.We all sincerely hope that the Ramsay Research Fund is being used for thehighest quality research that will do its utmost to genuinely replicateLombardi et al.With two 100% XMRV negative studies based on non-replication methods andpatient selection it would seem a waste of money to simply repeat the seriesof mistakes that have already been observed by us all.Yours sincerely,Stephen Ralph DCR(D) Retired.http://www.meactionuk.org.uk
Are we now officially classified as potatoes, Dr Speedy?http://www.cfp.ca/cgi/content/full/56/2/e57"Donald C. Cole, MD MSc FRCPCAssociate Professor in the Dalla Lana School of Public Health at the University of Toronto in Ontario, Head of the Agriculture and Health Division of the International Potato Center"
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