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Showing posts from November, 2012

A call for a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on Myalgic Encephalomyelitis (ME)

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Announcing the launch of a special Stonebird  page to support the call for an Inquiry into UK ME Policy; it  will provide up to date links and campaign resources :


http://www.stonebird.co.uk/inquiry/index.html

A human rights based approach to people with ME.

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The situation in the UK is a travesty of both medical science and human rights; things have become so serious and patients with ME/CFS in the UK are so neglected – indeed, they  are treated with undisguised contempt and are abused by those working in the very system that is designed to support them…

Margaret Williams (2012)

http://www.mecfsforums.com/wiki/What_Is_Already_Known_by_Margaret_Williams

Since the Second World War there have been many different international human rights agreements; one of the most important human rights agreements is the European Convention on Human Rights , which  sets out a number of fundamental human rights .  Each right is referred to as a separate ‘Article’ : for example the right to life (Article 2) and the right not to be subjected to torture, inhuman  or degrading treatment (Aticle 3) 

The Human Rights Act 1998 (HRA) came into force in October 2000. It incorporates the main rights and freedoms set out in the European Convention on Human Rights into UK …

ME does not equal CFS !

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Many thanks to Jill Mclaughlin for her excellent post : ME, CFS, ME/CFS: Importance of accuracy and consistency in terminology, classification and coding,
which provided the inspiration for this poster.

Jill's post is here :
https://www.facebook.com/notes/jill-mclaughlin/me-cfs-mecfs-importance-of-accuracy-and-consistency-in-terminology-classificatio/434901453241557

Prayers

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Stonebird has just launched a brand new page- prayers for those who suffer the terrible agony  and injustice of Severe ME :

http://www.stonebird.co.uk/prayer/prayer.html

19

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 This  poster is being distributed, good   -  it's excellent - it will hopefully  shock people into the reality of ME.

Yesterday was our 19th Wedding Anniversary, BUT  that pain-scourged , numb, throbbing,  minute by minute excursion through sophisticated  suffering ,  that paralysed, gasping attempt to cope , bears little relationship to the poster...the symptoms listed above  describe  Linda on a miraculously "good" day.

Severe ME, in its depth, scope ,range and magnitude of symptoms ,goes so far beyond the popular image  of "ME", or anyone's experience , that it is wholly  unimaginable, except to those who have it. 

My intimate knowledge, such as it is,  of what Linda goes through, bears little relationship to her actual reality - I know am not strong enough to take it on for a second , without going mad. I tinker around at the edges; as , I am afraid, so does this poster. 

It's very, very good - but it does not convey  the  hor…

Riding the Wave, Still (Part Two)

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(Dedicated to Pixi)

Thank you so much to hiddenlives, for this insightful comment on Part One :

"Change is a fundamentally frightening thing, I think. A kind of primal knee-jerk as well as the age-old and ever-with-us struggle with humility; in the case of change, that seems to take the form of the fear of having to admit an entrenched position/way of doing things was wrong."

...it's well known that the Chinese character for change means "dangerous opportunity". Change, as hiddenlives  says  can be   frightening-even dangerous. There are many who feel very strongly, with good reason ,  that the stand  they have taken in Scotland is riddled with danger - as we saw in Part One.

Trouble is, you can become  fixated on the danger , rather than the opportunity !


The key to coping with change , not getting stuck,rather  learning from and reading the signs of the time is your    value base : do  you, as someone with ME, want to be called a "CFS" patient ? Do you v…