Stonebird

3 essential steps to protect people with ME from misinterpretation and mistreatment.

We do not understand why anyone in the UK would proactively recommend the IOM Criteria, which ignores not only the true nature of the disease, ME, but also Severe ME, which the IOM did not study. The IOM report acknowledges, in chapter 4, under the section “External Validity” that the research base likely excludes the bedridden or homebound. In no other disease definition are the most severely affected excluded!! The IOM does not take into account the full symptom experience in ME. How can anyone, then, possibly recommend its adoption? With NICE looming THE ONLY CRITERIA THAT WILL SUFFICE ARE THOSE LIKE THE ICC CRITERIA, WHICH TAKE INTO ACCOUNT the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to t...

ME; THE BREAKING WAVE OF TRUTH Many years ago I published a piece on my blog about how lonely it can be riding the wave of change. You are very much on your own, up there. I am not sure how many today, fully appreciate the contribution of those long-term activists who have been struggling for the truth of ME to be made known for decades. These days there are signs aplenty that the wave of change, which was bound to break eventually, you cannot bury the truth forever, you cannot stand up to the power of the human spirit, has massively increased in its size, strength and power. Witness worldwide, the damning exposure and condemnation of the psychiatric lobby's flagship research programmes : the PACE and FINE Trials. In the last few days, there is the extraordinary news that the Cochrane "CFS" Report is to be withdrawn. What a fatal blow that is to the psychiatric lobby's baseless case. And now Professor Ian Lipkin has issued a hugely impor...

Who is reaching out to the most ill, the very severely affected? Who is trying to make contact with the profoundly isolated? Who is trying to touch, who is actually trying to comprehend their awful reality? Who hasn’t walked away? It is so incredibly difficult. In Severe/ Very Severe ME, the illness constantly shifts in its barbarity, you have to be acutely aware, there is no room for even a moment’s complacency. The slightest things I do, in all innocence, can so easily be devastating to my beloved, my clumsy attempts to help can have the most appalling consequences, my presence can be too much to bear at times. Truly the most ill, in their depths of suffering, are trapped in an unimaginably terrible, lonely place of relentless torture, crushing hypersensitivity, paralysis and agony. Sometimes, when things are very, very bad, no contact whatsoever with the person is possible, as the heartbreaking diagram below shows. I find that the most difficult challenge of a...