Showing posts from April, 2017

The Care Needs of people with Severe ME

I am delighted to announce that the 25% Group and Stonebird have published a new Care Guide, which you can download, as a Word document, here : Campaignging/Awareness%202017/ CARE%20NEEDS%202017%20A3.docx

A Reply to the Department of Health

Joint Commissioning Panel for Mental Health, MUS Report This is my reply to the Department of Health, many thanks for all your comments, which were extremely helpful in formulating my response. (Special thanks to  Jerrold Spinhirne .) ---------------------------------------------------------------------------- Thank you for your email dated April 20th. Even though you have stated that the Government recognises Myalgic Encephalomyelitis as a Neurological Disease, patients like my wife are left for decades to suffer, in agony, with no appropriate medical service, no clinical expertise to advise, no investigation, no cure and little hope. The health system does not accommodate or understand their complex needs. Patients with the most severe forms of this illness suffer decades without proper or appropriate input or medical recognition. Rather than identifying the underlying physical cause of illness, discovering t

A Reply from the Department of Health

April 21 2017 JCPMH Report In response to my recent letter to the Secretary of State, (…/an-open-letter-to-secretar… ) the Department of Health have clarified that : " This Government accepts the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a neurological condition of unknown origin and that health and social care professionals should manage it as such. " The issue, of course, is that people with ME do not receive appropriate medical treatment, rather "best practice" dictates psychiatric therapy; CBT and GET for "maladaptive thinking" and behaviour change. The issue, of course, is that the most severely affected are left to cope in unspeakable agony and suffering with no specialist care, support, advice, investigation, cure whatsoever available. Such a dangerous situation. So outrageou