Severe ME Day

It has been a beautiful Summer's Day here, my wife, Linda, though has spent it in the dark, behind thick sound proof curtains.  Her hypersensitivity to the environment has reached frightening levels .

The scandal and injustice surrounding ME is a deep pain. We can only pray that maybe Severe Myalgic Encephalomyeltis Understanding & Remembrance Day next week, August 8th makes some kind of impact.

 To that extent I have just launched Stonebird's webpage :

 http://www.stonebird.co.uk/understand/html/index.html

Comments

Post a Comment

Popular posts from this blog

The psychiatric abuse of Children with ME

The  psychiatric abuse   of Children with ME : some notes from the literature Greg Crowhurst 19 th August 2011 It is not that easy gathering together the information on this subject; yet it is so important ! The quotes below are   the result of a lengthy   search I have conducted. All the material is publically available, I have tried to follow  copyright restrictions where stated. 1. “The number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year. Fifteen year old Leanne Murray has severe ME and struggles with a range of unpredictable symptoms of ME including nausea, muscle pains, post exertion fatigue and light sensitivity.  “ When Lorraine took her to hospital with chest pains, doctors said there was nothing they could do.  Leanne was sent home with no treatment and the consultant reported her mum to social services.   A week later a social worker arrived on their doorstep in Coatbrid
Read more

Risk Assessment for interactions with people with Severe and Very Severe ME/CFS -an essential and important inclusion in the new NICE Guidelines

Image
  Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS.  Having spoken up about and raised awareness of  the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME  https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person.  Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely.  Information, therefore, should be provided to the person concerning the
Read more