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

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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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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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55 REASONS why NICE must recommend a home visiting, biomedical service, for people with Severe Myalgic Encephalomyelitis

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Stonebird
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…
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