Stonebird

Severe ME (2nd Edition ), greatly expanded and updated,  featuring contributions from Clinicians, Advocates, People with Severe/Very Severe ME and Carers, all around the world, is coming out soon ! http://www.stonebird.co.uk/new/soon.html

The neglected,untreated, ignored, tortured, tormented  reality  of Severe ME, of my wife's life,  is utterly unacceptable !! Today cannot be put into words it is so horrible, such an agony without end. Who knows ? There is currently no treatment, no cure, no hope. Just this cycle of worsening symptoms and deterioration. Today is unbearable.  But bear it, my wife must.

I understand that it is Thomas Hennessy's funeral today . Someone posted here the other day that Diana Krall's version of  "Just the Way You Are" was a special song.  So poignant. "A prayer  for all who are  grieving : We place everyone who knew Thomas Hennessy or whose lives were touched by his great work in the Heart of Love where all healing is found and from whence all mercy flows. May we all  be comforted, consoled, strengthened and blessed in this moment and all moments of grief. May the pain of loss be tenderly eased in the knowledge that Tom  now lives with God  and may this knowledge grow and relieve the deepest suffering of loss. Amen" (from Unstoppable Spirit )

I will never forget what a difference it made when Tom emailed, out of the blue, this giant and said that Stonebird was "EXCELLENT" - his words ! As a tribute I have just built this webpage : it turns out to be the most powerful webpage I have ever built !  Such incredible quotes from a legend, a man we all owe so much to. http://www.stonebird.co.uk/tom/index.html

Poor care practice combined with a lack of understanding,  knowledge and insight into how to approach someone profoundly physically ill, with acute, multiple environmental hypersensitivities, places people with Very Severe ME at particular risk of abuse and harm. The  impact of any intervention, which can be catastrophic, makes Very Severe ME a  complex illness in which to provide safe and sensitive care. This document is intended to increase awareness and to help raise standards of care. http://www.stonebird.co.uk/ Care.pdf

(This is a copy of an email I sent to the US  Department of Health and Human Services Secretary Kathleen Sebelius) Dear Secretary Sebelius, I am writing to state how unacceptable it is that the HHS is proposing to contract with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome", without input, apparently from people with ME. People with ME are dying from this disease, my wife who has had Severe ME for the last 20 years lives a life of unimaginable physical agony, without hope of treatment, cure or even basic respect. That is because  ME is currently being wrongly  misrepresented and misinterpreted as CFS, a fatigue condition with treatable sleep, pain and fatigue using psychiatric interventions that are harmful to people with ME, because they deny their physical reality. People with ME experience severe multi-system dysfunction and serious symptoms- these typically include :

Eleanor Stein has posted an interesting article on Co Cure,however I read it with growing  unease. Perhaps it is  her suggestion that health care professionals model their intervention upon Dialectical Behaviour Therapy. I looked it up. DBT is derived from helping individuals who have : "Borderline Personality Disorder" to accept "their dire level of emotional dysfunction", according to Wikipedia. Apparently : " the therapist aims to accept and validate the client’s feelings at any given time, while, nonetheless, informing the client that some feelings and behaviors are maladaptive, and showing them better alternatives". That is not the-overt- message of the article. There is no reason, I can see, to mention DBT in the first place. Why on earth can people with ME not enjoy an honest encounter with a health professional without some kind of behaviour therapy going on ?  http://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/09/Improving-Ther

Re:  College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules . Greg Crowhurst Greatly criticised by the ME Community and virtually all ME Charities, the PACE Trial allegedly : 1. Brought together (conflated) two diseases that the WHO rightly categorizes separately-neurological "ME/PVFS" (ICD-10-G93.3) and psychiatric "Fatigue Syndrome" (ICD-10-F.48.0) - and misrepresented the latter as the former. (Hooper 2011) 2. Mixed at least three taxonomically different disorders in the trial cohort-those with ME/CFS (ICD-10 G93.3), even though the entry criteria exclude such patients; those with fibromyalgia (ICD-10 M79.0) and those with a mental/behavioural disorder (ICD-10 F48.0). (Hooper 2011) 3.Excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously. (Hooper 2011) 4. Included, (PACE Trial) a large number of participants, 47% -