Showing posts from July, 2017


I try not to let the shambolic mess that passes for “ME” advocacy these days get to me too much; through each, long heart-breaking moment of her agony and paralysis, my focus has to firmly be with Linda. Our days are brutal; here on the extreme edge, what you search for, passionately, is truth. Anything else just gets in the way, is potentially fatal. So, it is gutting knowing that 10 000 people have signed an MEA petition for “CFS/ME”, never did I think I would see the day the so-called ME community would cave in and use that most damaging, most insidiously evil, most wicked of labels. We haven’t had much to hold onto down the years , but at least we used to insist upon the correct use of Myalgic Encephalomyelitis, by God, with no mention of “CFS”. “ME/CFS” was bad enough, but it was physically repulsive to use the language of psychiatry that has caused so many deaths. For as people with ME should know by now, CFS/ME is not a single disease, it is a Chronic fatigue- focussed, psychi…

Stakeholders : speak up !!

Stonebird, July 2017
When you look at their track record, is it any surprise that NICE’s “Topic Experts” have decided “to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) at this time. ” , given that :
The NICE Guideline was based upon a handful of low quality Randomised Controlled Trials, that were methodologically flawed.
The NICE Guideline failed to grasp the full nature of neurological ME and the implications for management, and also failed to provide adequate guidance for diagnosis, specifically not separating ME from CFS and CF.
The NICE Guideline failed to include experts from all the relevant professional groups on the Guideline Development Group .
The NICE Guideline did not study the aetiology and pathogenesis of ME, this meant that thousands of papers could not be discussed as part of the process.
The NICE Guideline ignored the international evidence that ME is a biomedical, not psychiatric, disorder, claiming that stu…