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blue ribbon for the awareness of me about brame about me me symptoms may12 poster 12 may 04/05 mp letter '04 14 may 1998 1995 - 2005 update 2005 update 2003 update 2002 update 2001 nice cmo report brame & dwp statement me orgs resp nhs review brame & fsa blue ribbons links contact us welcome to the brame website. feel free to browse through the pages and learn more about brame and myalgic encephalomyelitis. wear a blue ribbon and support brame and those affected by me around the world. please support brame by ordering brame products. brame products brame is a voluntary organisation run entirely by tanya and christine harrison; a severe sufferer and 24/7 carer special thanks to our treasurer dawn for keeping an eye on the pennies for us, and for all her help and support over the years. contact us primary aim of brame the primary aim of brame, both in the uk and worldwide, is to create an increased awareness and understanding that me/cfs is a very real and debilitating illness, and the consequences of living with me/cfs, for the sufferer, carer and the whole family unit. brame also offers support and understanding to those affected by me/cfs. by donating excess funds brame is also supporting much needed research into me/cfs. ************************************************************** the blue ribbon for the awareness of me is proving to be a triple symbol of hope for all those affected by me/cfs: 1 it is creating awareness of me/cfs. 2 it is helping to raise funds for research. 3 it is showing support for those affected by me/cfs. ******************************************************************* brame apologises that the website has not been updated on many occasions in past couple of years – but the effort of tanya campaigning and the continual trips to london for nice, the dwp and the gibson inquiry, as well as all the work required when at home – has led to a severe deterioration of her health. i hope that you understand, we have been so busy working on your behalf, and living with the illness, that we have just not had the time or energy to update you on all we have been doing. calling all me patients/groups in england brame is writing an open letter to everyone affected by me, and patient groups, in england. the strategic health authorities (shas) around england are publishing their consultation drafts of their future vision of health care. please read our letter, and respond to the consultation drafts, they are vital for the future healthcare of people with me in england. to link to your sha, and download their consultation draft, please visit the ‘our nhs, our future’ website. each sha will have their own deadline for consultation to end. brame anniversary & new appointments on 14 may 2008 we celebrate the 10 th anniversary of the brame meeting in parliament , which was such a successful and momentous day, and took me into the heart of government. it was supported by so many of you, in particular those who were severely affected. it was at this meeting that tony wright mp announced the setting up of the all party parliamentary group on me, which has enabled people with me to take issues, and concerns on me, into the political arena. in recognition of this anniversary, we are delighted to announce that dr ian gibson mp , who has supported brame, and ourselves personally, for very many years now, has become a patron of brame . we are equally delighted that the world renowned researcher on gene expression in me, dr jonathan kerr, has become research advisor to brame . we wholeheartedly welcome both dr gibson and dr kerr. we are most grateful to both of them for all their hard work on behalf of all those living with me, and are honoured by their new commitment and association with brame. sophia & me website criona wilson, mother of sophia mirza, has published the sophia & me website , which depicts the battles that sophia, and her family, went through, not only with sophia’s me, but also with the authorities. sophia sadly died from me, and became the first person in the uk to have this illness as the cause of death on their death certificate. we urge you to visit this site and learn more about sophia’s story. nice guidelines on me/cfs – 22 nd august 2007 the nice guidelines on me/cfs have been published today. there are four versions of the guidelines, the full version (only available on the web), the nice short version , the quick reference guide, and understanding nice guidance (for patients). as you are all no doubt aware, i resigned as patient representative from the guideline development group earlier this month. to read my personal statement, giving some of the reasons behind my decision, click on this link. tanya's personal statement - nice guidelines me organisations unite to respond to the nice draft guidelines and dwp guidelines on me/cfs we are delighted to say, that the leading national me organisations (including brame), have joined together twice in the past couple of months, to give a united response to the draft nice guidelines on me/cfs (december 2006) and the new dwp guidelines for me/cfs (january 2007). we have put both of the joint responses on our website (link below) for you to read. we hope that this is the start of many occasions where the national me groups join together, and united, make a more powerful and unified response on behalf of the me population. as you will read, from all our efforts and consultations with these agencies over the past two years, both of these documents are not representative of the reality we all know, and live with, that is the disabling and debilitating illness me and the enormous impact it has on our everyday lives. the publication of the nice guidelines on me/cfs have now been delayed until august 2007, we will have to wait and see how much of the stakeholder and personal feedback has been taken on board from the consultation process. please contact your mps and inform them of the difficulties you face within the nhs and dwp. ask them to raise these issues in parliament, question the relevant ministers, and to get in touch with des turner mp, chair of the appg on me, and offer their support. for your information there is also to be a further meeting of the gibson inquiry on 6 february 2007. best wishes to you all and we sincerely hope that 2007 will be a year when breakthroughs are made and the hope of a cause and treatment will grow ever brighter. me organisations united responses to nice guidelines and the dwp guidelines on me/cfs for background interest please click here to read brame's statement on the dwp guideline process and in the news below click on the link to the 25% group site to read brame's comprehensive response to the nice guidelines brame response to nice & evidence for the gibson inquiry dear all. we apologise for not putting these documents on the website sooner, but we have been experiencing severe technical difficulties in trying to upload them onto the brame website – however simon lawrence has very kindly agreed to put them on the 25% me group website. you can download from their site our brame response to the nice draft guidelines on cfs/me as well as the written and oral evidence brame gave to the gibson inquiry on me the results of which has now been published and can be found on the inquiry website . nice consultation - draft guidelines on me/cfs brame is pleased that nice is allowing the me community the opportunity to comment on the nice draft guidelines on me/cfs . brame is extremely concerned about the contents of the guideline. in particular the widened diagnostic criteria, the lack of recognition of me as a neurological condition (as recognised by who and the department of health), and the recommendation of cbt and get as " the therapies of first choice". brame encourages all those affected by, or involved with me, to please make a response to this document. this can be done through one of the stakeholder organisations listed on t

URL analysis for brame.org

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sophiaandme.org.uk
nice.org.uk
ournhs.nhs.uk
guidance.nice.org.uk
desturnermp.co.uk
cfsresearchfoundation.org.uk

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WHOIS LIMIT EXCEEDED - SEE WWW.PIR.ORG/WHOIS FOR DETAILS

  REFERRER http://www.pir.org/

  REGISTRAR Public Interest Registry

SERVERS

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DOMAIN

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NSERVER

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  NS3.LIVEDNS.CO.UK 213.171.192.254

  NS1.LIVEDNS.CO.UK 213.171.192.250

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