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 In the last few days, there is the extraordinary news that the Cochrane "CFS" Report is to be withdrawn.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...

● Never define the person by their behaviour. ● Acknowledge the serious and severe physical illness underlying the person’s symptom experience. ● Adhere to a strictly defined definition of ME (The International Consensus Criteria). ● Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease. ● Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction. ● Honour what the person says regarding their physical and cognitive needs. ● Listen to the person and only interact at the correct time in the correct way.   ● Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just pe...

How can someone who cannot bear touch, has no physical energy to engage in continued sexual intimacy, who feels ill all the time, manage to remain intimately connected to their partner? This is the question facing every couple. ME can have a devastating impact upon relationships; when ME or Fibromyalgia enters a marriage, one casualty can be intimacy between the partners. The sexual act, as a negative experience, has been shown to correlate with the intensity of symptoms in women with ME. (Blazquez et al 2008) Pain, reduced energy, reduced interest, health problems of the partner and increased responsibilities for the healthy spouse can all affect a couple's sex life.  (Allen 2008 ) Sex may be a too high-energy activity for someone with ME. Another cause of trepidation or anxiety for the partner with ME can be a diminished or non-existent libido. A very difficult issue is that if your body, your muscles, hurt all over, so you cannot bear even being touched, then sex wi...

NB If you have visual difficulties please be aware that there are moving parts and changing colours in this video! I reckon our Corgi dog knows more about Severe ME than just about anyone. His love, concern, intuition are extraordinary. Sometimes when I just don't know what to do to help, Camy does, beautifully. This is my loving tribute- and my first reggae song! It has been such a joy to make.