The harm done through ignorance.

People diagnosed with Severe ME have to be so careful. It is very hard to find someone who comprehends the risks and dangers of engaging with them, especially because the illness is so hidden, invisible, misunderstood not adequately investigated. 

 Once you reach a certain level of the illness there comes a point beyond which people cannot risk investigations. The danger to your health and life is so immense.

  People need help badly, but it needs to be given in the right way. 

 The harm done through ignorance is indescribable.

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A letter to Sir Andrew Dillon , Chief Executive, NICE

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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…
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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…
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36 Issues worth pointing out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION

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(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…
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