The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
Now is the Time : to say what choices you want.
Now is the Time :
to say what choices you want.
Jan 10th 2011
PLEASE REPOST WIDELY
The Government's White Paper, Equity and Excellence: liberating the NHS sets out proposals which envisage a presumption of greater choice and control over care and treatment, choice of treatment and healthcare provider becoming the reality in the vast majority of NHS-funded services by no later than 2013/14.
In other words this is a rare opportunity for people with ME to give an account of what choices they want to have.
Stonebird is proud to have been a participant in drafting “Now is the Time , to say what Choices you want” , a comprehensive reply to the White Paper , “written by patients for patients”, especially people with Severe ME.
"Now is the Time" asserts the views concerns , bio medical needs and choices that people with ME want , not only in diagnosis, but right across the board, including treatment, and social care.
"Now is the Time", gives voice to all those who find that :“The discrimination and inequality in the current system is unacceptable and a breach of our rights. We call for an end to this discrimination, and our right to be involved in the planning of our health care services to be honored and the patient voice heard loud and clear.”
Urgent : replies to the Government White Paper need to be in this week. There is still time to respond ! We urge you : “Let your voice be heard loud and clear the more who reply the stronger the message is.”
How To Take Part
Download the response document "NOW IS THE TIME" from Stonebird :
(This is taken from :
“Severe ME : Notes for Carers” : http://stonebird.co.uk/Notes/index.html) Many world-class clinicians state that ME is either an infectious disease, or
an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et
al 2014), requiring a skilled biomedical response. ME was recognised as a specific disease entity by The Royal Society of Medicine
in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness.
(Hooper 2004)Cycles of severe relapse are common, as are further symptoms developing over
time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Subs…
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…
People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means :
1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable GP or consultant . 3. There is little, if any, choice of biomedical ME consultants. 4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal. 5. The system expects people to fit into it and is not very accommodating of those who cannot. 6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME. 7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure. 8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely. 9. The impact…