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Showing posts from August, 2017

NICE : a Reply Regarding my letter to Sir Andrew Dillon

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Stonebird Greg Crowhurst Aug 30th 2017
On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. 
I have added the  questions I asked and made some brief comments.
Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf.
I appreciate that this is an important matter for you and I have addressed of your questions in turn below.
In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved.
Comment: Despite my best efforts, letters to the Department o…

A DESIDERATA FOR CARERS

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A DESIDERATA FOR CARERS

Look after yourself, be kind and affirm who you are.
Be loving, especially to yourself. Learn all you can.
Remain focused on the person, who they are and do not forget this, even when illness seems to deny it.
See the person but recognise their illness reality, so that you can understand the impact on both your lives. Take space for yourself to heal your own wounds and losses.
Be gentle to yourself, especially when you struggle to make sense of the illness and its impact. Keep healthy by eating well and keep fit if you can.
Do things you like to do but be flexible as to how and when you do them; think in new ways. Be together in whatever way is possible.
Do not let systems or people be divisive or come between you. Do not ” clientise” your loved one or let anyone else depersonalise them, so that your relationship stays strong.
Find ways of connecting as your essential selves.
Express your emotions safely.
Be all you know in all you do.
FROM : "Living in the Hea…

Time For #MEICC by Colleen Steckel

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(In this month's ME Global Chronicle Colleen Steckel  published one of the most exciting ideas  that  I have heard in ages. She has given us permission to publish her article here  on Stonebird.

First a little background : The International Consensus Criteria (ICC) are immensely important because they  provide a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. 

Importantly  the ICC  separates ME from CFS !

The ICC contains six vital points:

1. A six-month waiting period before diagnosis is not required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the
affliction for six months.

2. Using "fatigue" as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has "chronic fatigue" attached to its name – e.g. cancer/chroni…

SEVERE ME CENTERED AUDIO PROJECT

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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

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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 ?

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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

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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 ?

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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 …