”There was one aspect of the day which did – fleetingly – alter my perception. In fact, I’ve already mentioned it earlier in this post, when I referred to the wave of emotion which I experienced during Sonia Marshall-Gradisnik’s presentation. For just one day, I was surrounded by people who understood the illness. I didn’t have to explain it to anyone, nor justify my lifestyle nor defend myself against the hostility of deniers and sceptics. For a few hours, not only was I permitted to be ill but my life was positively validated and my day-to-day experience reflected back to me by respected scientists, clinicians, patients and carers. It was an extraordinary and life-affirming experience.” Thank you, Valerie, for your excellent report.
On Friday 29 May 2015, the British charity, Invest in ME, held its 10th annual conference at the Institution of Mechanical Engineers in central London. It followed on from the two-day Biomedical Research Colloquium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The scientists who were speaking at the Conference had already had the benefit of the Colloquium in which to discuss recent research developments and foster burgeoning relationships within the international ME/CFS scientific community.
I have lived with this illness for thirty-five years. A conservative estimate puts the number of ME/CFS patients worldwide at twenty million, although diagnostic uncertainty means that this figure could be wildly inaccurate. Despite having been well-known and documented for eighty years, the disease is still not widely recognised. There is no effective diagnostic pathway or treatment. Patients are still routinely neglected and abused; this results from the disproportionate power of the psychiatric lobby (especially in the UK) which continues to trumpet the highly inappropriate psychosocial model…
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