Posts

SEVERE ME CENTERED AUDIO PROJECT

Image
Severe ME is a desolate place when you are trapped inside your tortured body.

 Noise sensitivity, in particular is very much ignored or it is acknowledged in passing, but without touching its desperate destruction.

Linda, for example, has been broken, literally, by noise, to the extent it paralyses her repeatedly; she cannot bear to even think about sound. The person with Severe ME can be so vulnerable to the vibration of noise , that it is not just their ears or their head that is affected, but their whole body in unimaginable ways.

 The tormenting impact of noise in Severe ME must never underestimated. If I so much as scratch my face at the wrong moment, the day can be ruined.

 Hyperacusis can seriously damage a person’s health , worsen their symptoms and cause unfathomable distress.

 There is such a desperate need to break the isolation.

 An innovative community audio project is setting out to try and do just that.

 We are not sure how, but we are tremendously excited …

Art in Suffering

Image
Linda has experienced periodic, repeated paralysis for the last 25 years. This a hidden tormenting symptom that very few are aware off. We have made this video to raise awareness of the suffering.

For much more information on paralysis, please see this article on Stonebird http://stonebird.co.uk/channelopathy/paralysis.htm

What is the point of Severe ME Day ?

Image
I wish there was an ACTION button on Facebook. Tomorrow is Severe ME Understanding and Remembrance Day. But WHAT is the point ? If it's just about gathering "likes" on Facebook or "retweets" on Twitter ? There's a film called "Bucket List" , it's about two terminally ill men, Jack Nicolson and Morgan Freeman, with wish list of things to do before they "kick the bucket". I know that because Linda told me - and it was one of the saddest days of my life when she remarked, in a matter of fact way , on how, if she was dying - and God knows, every day, she gets very close, it would make no difference, for she still couldn't do a thing on her long wish list. She is far too ill. Kick me hard in the guts; it would not come close to the pain that Linda's suffering brings me. Our has been a 25 year journey and what we have learned is not unique to us; I know because we are in touch with others who are also severely affected. We have bee…

TEN GOLDEN RULES

Image
You shall not call ME "CFS".You shall not presume that ME is a fatigue illness.You shall not ignore people with ME and pretend that their illness does not exist.You shall not back the psychosocial misinterpretation of ME.You shall honour people with ME and their carers and advocates.You shall not bear false witness against people with ME using psychosocial jargon to misinterpret the truth of their illness.You shall not be careless around people with ME, for your carelessness will cause harm and deterioration.You shall not be complacent or compromise away the truth of ME by any means.You shall pro-actively make a stand and contest all untruth. You shall never accept inferior, dismissive or inadequate treatment.
STONEBIRD

This is not an argument with psychiatry. Really ?

Image
STONEBIRD
Charles Shepherd's otherwise excellent article in the Journal of Health Psychology, contains the puzzlingThis is not an argument with psychiatry", maybe he's right on one level, if psychiatry had properly acknowledged the physical reality of the illness,instead of working to re frame it as a mental illness.
quote " In that sense it's true. However there must be an argument with the psychosocial misrepresentation of ME as practised by the so-called "psychiatric lobby". http://journals.sagepub.com/d…/full/10.1177/1359105317703786
To this day the psychiatric lobby dictates : do not investigate ME patients .do not provide special facilities for ME patients other than psychiatric clinics .do not offer special training to doctors about the disease .do not offer appropriate medical care for ME patients .do not offer respite care for ME patients . .do not conduct biomedical research into the disorder .
To this day the psychiatric lobby : wreaks havoc in …

Hoping for a post-PACE world

Image
Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978)

He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978)

Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”.

These days, it is incomprehensible that TB and Cancer were once seen as a mental illness!
But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there is not o…

A letter to Sir Andrew Dillon , Chief Executive, NICE

Image
Stonebird 27th July 2017
Sir Andrew Dillon, Chief Executive, NICE
Dear Andrew Dillon,
Re : Myalgic Encephalomyelitis
I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry.
In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder.
The response, in a letter to me…