Journal of IiME Volume 1 Issue 2 www.investinme.org The PACE TRIALS (continued) In respect of the FINE trial, it is worth noting that the trial information says that for severely affected participants who are isolated, the trial may be carried out by means of the telephone or by computer. The sheer impracticality of these two methods reveals how little understanding the Principal Investigators have of the reality of the daily lives of those with severe ME/CFS. How many home-bound severely affected ME/CFS patients have got – or are able to use – a computer? Who is going to pay for the purchase and installation of a computer for those who do not possess one, and who is going to pay for and arrange lessons in basic computing skills (even supposing participants were well enough to undertake such lessons)? People who are severely affected by ME/CFS are unable to talk on the telephone for more than just a few minutes, so three-hour telephone sessions are unfeasible, but none of these practicalities seems to trouble the MRC Principal Investigators or the Data Monitoring and Ethics Committee. Overall, there has been immense concern registered about the MRC PACE and FINE trials and about the psychiatrists who are leading them. The support of AfME for these MRC PACE and FINE trials is disturbing; even more disturbing is the fact that AfME’s website states: “Some evidence suggests that the inactivity and resulting loss of fitness (de-conditioning) that occurs with ME can make the illness last longer and that graded exercise can help to reverse this”. Perhaps AfME is unaware of the results of a Belgian study on over 3,000 patients with “CFS” who were referred to multi-centre clinics. Out of those who undertook the “rehabilitation” programme consisting of CBT and GET, whereas before “rehabilitation”, 18.3% were in paid employment, following “rehabilitation”, this figure was reduced to 14.9% the trial information says that for severely affected participants who are isolated, the trial may be carried out by means of the telephone or by computer. The sheer impracticality of these two methods reveals how little understanding the Principal Investigators have of the reality of the daily lives of those with severe ME/CFS. The support of AfME for these MRC PACE and FINE trials is disturbing; even more disturbing is the fact that AfME’s website states: “Some evidence suggests that the inactivity and resulting loss of fitness (deconditioning) that occurs with ME can make the illness last longer and that graded exercise can help to reverse this”. (ie. participants were working less hours after “rehabilitation”). Equally, perhaps AfME is unaware of a Dutch study which found that at the one year follow-up following “rehabilitation”, 17% of ME/CFS patients who were previously working were no longer able to do so. It is AfME’s duty to be aware of the medical literature and to use it effectively to support the best interests of its members. Moreover, AfME seems to be extraordinarily inconsistent: in its press release of 22nd August 2007 issued to coincide with the publication of the NICE Guideline on “CFS/ME”, AfME stated: “Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET”, yet the following week, in an Editorial in the BMJ (1st September 2007:335:411-412), AfME’s CEO, Sir Peter Spencer, agreed with psychiatrist Peter White that these same interventions show “the clearest research evidence of benefit”. AfME might care to consider just why the MRC has a secret file of records and correspondence on ME/PVFS that dates from at least 1988 and is held at the Government Archive at Kew, and why this file is deemed so sensitive and controversial that it has been classified as top secret and cannot be made public until the 1st January 2023. AfME may like to recall that members of the CMO’s Working Group were threatened with the Official Secrets Act. In the best interests of its members, AfME might also wish to ascertain exactly why the MRC so resolutely rejects grant applications for biomedical funding into ME/CFS (see http://www.nationalarchives.gov.uk/search/quick_search.a spx?search_text=myalgic). The full document “CORPORATE COLLUSION?” may be found at the ME ACTION UK site at – http://www.meactionuk.org.uk/Corporate_Collusion_2.htm Invest in ME Charity Nr 1114035 Page 67/72
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