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toggle navigation home care symptoms politics spirit creativity blog stonebird : the experience of severe me the stonebird the stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters. resources : severe me : notes for carers stonebird is proud to announce the launch of severe me: notes for carers! “one of greg's most important works ...the information here isn't dry or wooden, it lives and breathes.” kara jane spencer severe me : featuring justice for karina hansen “with unparalleled imagery and quotations the book describes like a surgeon what it is like to live a life as and with someone who is severely stricken with the devastating disease myalgic encephalomyelitis.” rob wijbenga straight-jacketed by empty air “psychiatry's shameful involvement in myalgic encephalomyelitis.” free ebook living in the heart of love a book to inspire, comfort and uplift those who are suffering. "to say that 'living in the heart of love' is about indescribable suffering would be accurate, but incomplete. it is about much more." david coupar 36 issues worth pointing out if a clinician refuses to “believe in me” or wrongly considers it to be a psychiatric condition channelopathy : an important issue for those with myalgic encephalomyelitis. the care needs of people with severe me wasteland latest postings : stonebird: a response to briefing for ‘myalgic encephalomyelitis: treatment and research’ westminster hall, june 21st 2018 this is severe me 25% me group and stonebird : questions that must be answered we say no more! it is just a fairy tale fundamentally flawed touch, feel,intimacy, all lost may 12th, international me awareness day build a matrix of truth walking lightly : understanding the moment approach, part 2 meeting need tenderly sophie cooklyn : severe to very severe m.e. is not ‘just’ m.e. and it must be treated differently! 13 million, 148 thousand 730 minutes of my precious life brain fog in severe/very severe me pain in severe/very severe me paralysis in severe/very severe me perfume sensitivity in severe/very severe me movement sensitivity in severe/very severe me light sensitivity in severe/very severe me touch sensitivity in severe/very severe me noise sensitivity in severe/very severe me people with me are in grave danger of being misrepresented by people and organisations that will not truly represent their needs merryn crofts: please spread awareness understanding the moment approach severe me : why a moment approach is required decades of psychiatric sway and influence people with me are endangered by a system that does not recognise them a new vision very severe me : risk assessment the power of puppetry : a tribute to corina duyn strait-jacketed by empty air, book review by nancy blake 10 good reasons why me should not be labelled a functional somatic syndrome 55 reasons why nice must recommend a home visiting, biomedical service, for people with severe myalgic encephalomyelitis impossible things game: global advocates 4 myalgic encephalomyelis. notes for nice stakeholders part 2 notes for nice stakeholders part 1 omsorgsbehov hos mennesker med svært alvorlig me (norwegian translation of our 25%/stonebird care document) time for unrest, because me kills by laura vitale the new book: "straight-jacketed by empty air." a mini essay on very severe/severe me and the festive season by ruth braham a review of unrest by clare norton very severe me is like introducing the new book: "living in the heart of love" a reply from nice a world of medical denial a crime against humanity five ways to be a better carer recognise as torture? a reply to sir andrew dillon time for #meicc by colleen steckel in memory of merryn crofts into the light, artist book in a box by corina duyn severe me centered audio project art in suffering on being a carer ten golden rules this is not an argument with psychiatry. really ? hoping for a post-pace world a letter to nice nice guideline cg53 : a human rights issue for people with me? be very careful what you ask for nice guideline 53 is not fit for purpose . new care guide . a reply to the department of health . a reply from the department of health . an open letter to the secretary of state for health, regarding the jcpmh mus report. nice does not list me as a functional somatic disorder. me is not mups, please sign this dutch petition. 25% group and stonebird response to bacme article on care provision for severe me. jcpmh : will you speak out ? why me must be removed from the jcpmh report the power of propaganda ? by margaret williams the cost of collusion by margaret williams a day when i could have, should have, would have..... except i could not. channelopathy : an important issue for those with myalgic encephalomyelitis. have i wasted my time fighting for “me” ? remember the most ill how nice failed people with me severe me, patient surveys the disease that used to be known as me they use our name but they do not treat our disease end carer poverty !! official uk policy towards me ? severe me : contemplate paralysis if you can end the magenta trial ! me consciousness in a post-pace world the skills of an me aware carer : in a nutshell lost services, lost lives lonely does not really cover the experience. we remember stonebird : severe me day 2016 severe me : aware care new guide ( best viewed in chrome ) me : we know better the mysterious chronic fatigue syndrome dominated by illness you cannot pretend to the me community on facebook : an enormous thank you !!! the need for another chilcot inquiry the pit the role call of the dead stonebird is a cfs-free zone. this is why we are all missing breakthrough song why the separation of me from cfs is long overdue a 10 point nursing model of practice for patients with myalgic encephalomyelitis (me) always use the correct term to refer to "me". the misrepresentation of myalgic encephalomyelitis in nursing. can we safely write about me anymore ? excellent editorial by sense about statistics quality of life score in me you cannot imagine how much worse it can get biomedical cfs alert what would thomas wakely say ? contemplate paralysis, if you can. how m.e. was never associated with fatigue. by jerrold spinhirne an open letter to my wife, following david bowie's death. 36 issues worth pointing out if a clinician refuses to “believe in me” or wrongly considers it to be a psychiatric condition there is little hope.... the pace trial was bound to fail. love gives strength a continuum of paralysis paralysed in poetry and images being present through transforming suffering the agony & the isolation “we're responsible...” no more ! is there an me community anymore ? stonebird statement on the pace trial controversy how do you convey how very ill you are ? so tell me. a guest post by kara jane spencer we must unite and stand firm ! a guest post by malcolm. we survive another day please mr corbyn never, ever give up! all days we love each other decades of medical neglect me i choose to survive in honour of those who have passed on terribly sad news living on the edge of existence elizabeth d'angelo : an incredibly talented artist. very severe me, on a summer day. are the sick, housebound and carers part of labour? this video could save your life ! if i was elected labour leader... a vicious attack walking away three reasons why labour's hands are red with the blood of the disabled and the sick. me : the boss battle ? severe me : destroying lives poster books by greg crowhurst this is severe me by merryn crofts the suffering, long beyond words. severe me day 2015 severe me day 2015 me : your worse nightmare stonebird : breaking the silence and you hope the pain in caring announcing “severe me: notes for carers” a merciless attack there is no reasonable logic to the neglect of me patients. what to do? poster

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Whois Information

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Domain name:
stonebird.co.uk

Registrant:
Greg Crowhurst

Registrant type:
UK Individual

Registrant's address:
The registrant is a non-trading individual who has opted to have their
address omitted from the WHOIS service.

Data validation:
Nominet was able to match the registrant's name and address against a 3rd party data source on 27-Nov-2015

Registrar:
Mesh Digital Limited t/a Domainmonster.com [Tag = MONSTER]
URL: http://www.domainmonster.com

Relevant dates:
Registered on: 24-Jan-2010
Expiry date: 24-Jan-2018
Last updated: 09-Jan-2017

Registration status:
Registered until expiry date.

Name servers:
ns.mainnameserver.com
ns2.mainnameserver.com

WHOIS lookup made at 07:17:42 12-Jul-2017

--
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:

Copyright Nominet UK 1996 - 2017.

You may not access the .uk WHOIS or use any data from it except as permitted
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register. Access may be withdrawn or restricted at any time.

  REFERRER http://www.nominet.org.uk

  REGISTRAR Nominet UK

SERVERS

  SERVER co.uk.whois-servers.net

  ARGS stonebird.co.uk

  PORT 43

  TYPE domain

OWNER

  ORGANIZATION Greg Crowhurst

TYPE
UK Individual

ADDRESS
The registrant is a non-trading individual who has opted to have their
address omitted from the WHOIS service.
Data validation:
Nominet was able to match the registrant's name and address against a 3rd party data source on 27-Nov-2015

DOMAIN

  SPONSOR Mesh Digital Limited t/a Domainmonster.com [Tag = MONSTER]

  CREATED 2010-01-24

  CHANGED 2017-01-09

STATUS
Registered until expiry date.

NSERVER

  NS.MAINNAMESERVER.COM 79.170.40.2

  NS2.MAINNAMESERVER.COM 79.170.43.3

  NAME stonebird.co.uk

DISCLAIMER
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
which includes restrictions on: (A) use of the data for advertising, or its
repackaging, recompilation, redistribution or reuse (B) obscuring, removing
or hiding any or all of this notice and (C) exceeding query rate or volume
limits. The data is provided on an 'as-is' basis and may lag behind the
register. Access may be withdrawn or restricted at any time.

  REGISTERED yes

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