In fact, this motion from thirty years is far more advanced than some recent motions that have been brought before parliament. And what was the request from this bill from 30 years ago? “The Bill is a simple measure which merely requires the Secretary of State to make an annual report to Parliament describing the progress that has been made in investigating the causes, effects, incidence and treatment of ME.” An annual report into progress! Logical, simple, coordinated. Something that any health department of chief medical officer might well see as common sense for a disease that affects so many and costs so much. Yet thirty years on we have nothing of the sort. We can wonder how things may have been if this request had been enacted. Thirty years have passed since the above motion was made, and very little has changed, and the scale of the failure of those chosen to deal with ME is apparent. So many false starts and disingenuous actions by those in influential positions! Since the CMO report on ME from 2002 people in positions of influence have had adequate opportunity to support biomedical research into ME. Instead, we witness dead-end “expert” panels and collaboratives formed – coming and going every few years, ending in failure, before another dead end initiative is set up. This pattern of stalling tactics is there to be seen and should fool no one. It is tempting for some to believe those who perform a 180o change of direction to embrace “biomedical research” into ME, or issue statements that CBT and GET should not be offered as treatments – despite having promoted these views for decades. We do not believe in these epiphanies. After years of collaborating or supporting those proponents of the biopsychosocial theories of ME, the motives for changing of views has more to do with selfinterest and less than the good of mankind at heart. Continually offering second chances to organisations that repeatedly failed people with ME is a perverse form of Stockholm syndrome. As we stated in our letters to NICE we would advise people not to believe these statements and only give trust when one sees concrete action and permanent change. Invest in ME research (Charity Nr. 1153730) Are we any closer today to joining the pieces together and creating the bigger picture than we were twelve years ago when the Gibson Inquiry of 2006 suggested that “£11 million should be made available for research to redress the balance in an illness where too much emphasis had been put on psychological ‘coping strategies’ ”? Yes and no. IiMER were probably one of the first to begin discussing the idea of international collaboration in research into ME many years ago as the way forward. We embedded this concept in all we do following the 2007 conference. Now this term is being used more and more. Yet, if we are honest, it is still not how we wished things to be. If we discount the doubtful areas of research that have received large funding in the past – what IiMER refers to as the “Wrong Stuff” – then rather than real coordinated collaboration what we see at the moment is still largely sets of disparate research threads and “territories” which continue to be, to a great extent, competing rather than joining together. Perhaps it is just the phase we are going through where everyone is finding their place in the new world www.investinme.org Page 9 of 56 Research into ME But what of research into ME? This brings us on to our cover image – which sums up the state of current research into ME.
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