Blue Ribbon for the Awareness of ME


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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 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.


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.

 

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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.

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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 10th 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 – 22nd 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.


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.


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 the NICE website. If you wish to make responses through BRAME this needs to be sent to us, on the NICE comments sheet, by 31st October 2006 to allow us time to collate and write our formal response.

BRAME will, after careful reading, and consultation with sufferers, carers and medical practitioners, be making a full response to the draft guidelines.


BRAME Statement – DLA Medical Guidelines

There have been a lot of things being said about the new Disability Living Allowance medical guidelines which are being produced by the Department of Work and Pensions and BRAME has now put out a statement regarding this – which you can read if you click on "Statement" in the index to the left.

BRAME has been involved in this process since earlier this year and we thought that, because so much fear has been created, that we should inform you of what we have been doing – albeit behind the scenes. As you know we work extremely hard on the behalf of all those affected by ME/CFS, but we often do not publicise our work, however, on this occasion we felt that we must speak up. Please read our statement and be assured we will continue our work, and will not agree with anything we feel detrimental to those affected by this condition.


Latest News / July 2005


Research Breakthrough

As you know the extra funds we have go to research into the biology of this illness. For the past few years we have supported the CFS Research Foundation. We are very pleased to tell you that they have made a major breakthrough in the pathogenesis of this illness. Dr Jonathan Kerr and his team have discovered differences in gene expression in the immune cells of people with CFS/ME, in 35 of the 9522 genes they analysed using DNA chip technology. The activated genes are found to play a role in the mitochondria, the immune system and with nerve cells.

The study is being repeated with approximately 1,000 people with CFS/ME and controls – these participating people and clinics, across the UK, have already been selected. However if you wish to help with the study, donations are always desirable, they can be sent either via BRAME, or directly to the CFS Research Foundation. You can read more about the findings on the New Scientist website, before the full document is published in the Journal of Clinical Pathology on 1st August. This could be the breakthrough we have all been hoping for, as it will hopefully set the old psychological v physical debate to the side, and allow research to progress further and faster.


Latest News / July 2005


New Chair of the APPG on ME

We would like to thank Tony Wright MP for Great Yarmouth for all his help over the past 7 years as Chair and founder of the APPG on ME, following the BRAME meeting in Parliament on 14th May 1998. Tony has decided to step down as Chair of the APPG, although he will remain as Vice-Chair, and still a very active member of the group, as well as the patron and supporter of BRAME and all those living with ME. As well as meeting with Tony, we met with Dr Des Turner MP for Brighton Kemptown, and new Chair of the APPG on ME, on 13th and 14th of July. We would like to warmly welcome him to the forefront of the ME arena, and we will continue to offer the APPG on ME whatever support/information that we can.


Update on BRAME’s Activities in 2005

During June and July we have had further meetings with the executives, and senior management teams, of the Department of Work and Pensions. We are continuing to inform and advise them of the areas of problems facing ME sufferers, and helping them with the solutions they are trying to provide. Of course I am also continuing my work with NICE, and thank all of you have written to tell me about the services provided in your area.

We apologise if many of you have had delays in response to letters/phone calls/e-mails over the past few months, but as many of you know for the past 16 months, but in particular since January, we have been caring for a terminally ill member of my immediate family, sadly they died at the end of June. It has been an extremely hard time, and we are both emotionally and physically exhausted, as well as grieving, so we ask you to bear with us for just a bit longer. Despite this we have continued to respond to people as best we can when we have been at home, and continue with our government work, which is on behalf of you all.



Stop Press: 4 May 2005 

Thanks to Tony Wright MP we were able today to have a brief face to face dialogue with Gordon Brown, Chancellor of the Exchequer.

He has promised to look at the information we gave him today, about the issues we have been campaigning on, and we hope that this will lead to a further constructive meeting with him in the new Parliamentary year.

Stop Press: 6 May 2005

We are delighted to inform you that Tony Wright, MP for Great Yarmouth, Patron of BRAME and current Chair of the APPG on ME, has been re-elected.


Latest News / May 2005


NICE

In February I was asked to become a patient representative on the National Institute for Health and Clinical Excellence (NICE) Guideline Development Group on ME/CFS. The report is expected to be published in 2007. More information about this group can be found on the NICE website.

Please be assured that I will be a ‘patient representative’ and will fight for what I believe in. I am hoping that the group will look carefully at what appears to be the best report available at the moment – the Canadian Guidelines entitled: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols".


Latest News / May 2005


12 May 2005

Due to an unexpected death in the family we will be unable to attend any of the rallies on 12 May due to having to attend the funeral. For May 12, as well as meeting with Gordon Brown, we have written to Tony Blair and David Blunkett (the new DWP Minister), the MRC, amongst others, we did not send out information to all MPs this year due to the general election. Our current newsletter has been sent out to groups and individuals in both the UK and around the world and can be found on this website under ‘Update 2005’. We fully support the activities below which are being held on the 12 May.

MERSC will be holding two rallies this year in London on 12 May. One will be outside the Medical Research Council (MRC), the other will be at the Dept of Health, 10 Downing Street and the Houses of Parliament – more information about these rallies can be found on the MERSC website.

We have just heard today (11 May) that Gary Frankum - a BRAME supporter and ME sufferer - will be appearing on Sky News on 12 May at approximately 10.30am, best watch between 10-11am to be safest.  Congratulations to Gary and Trevor Wainwright (MERSC) for securing this interview on International ME Awareness Day.  Hopefully Sky will cover the rallies as well.

The ME Alliance will be launching their "Early Diagnosis" Campaign which aims at getting medical professionals to diagnose adults within 6 months and children within 3 months. To find out more about this campaign check out some of the member groups’ websites from out links page (MEA, AFME, AYME, TYMES Trust).

You can read more about the events of the day on this website under "12 May 04/05".


Latest News / 24 December 2004


BRAME Update

Please accept our sincere apologies for not being in contact as much as we would have wished this year, but it has been a very difficult year for us, due to Tanya’s increasing poor health, and the health problems of other members of our family. As a result, despite our best efforts, we have been unable to have the BRAME update ready to go out before Christmas.

Despite all of our own problems this year, we have still been involved with the government, the APPG on ME, and the DWP, amongst others, fighting for the rights of people affected by ME, as well as continuing to raise awareness and understanding of the illness, and the reality of living with ME. You can read what we have been up to when the update goes on this website when Tanya and myself are able to write it.

We sincerely hope that 2005 will see continued breakthroughs in the research into the aetiology and pathogenesis of ME. BRAME supports the CFS Research Foundation and MERGE, both of whom are doing excellent research work, and we wish them continued success in the coming new year and beyond.

Thank you for your most valued and continued support of BRAME, and we send you our very best wishes, and wish you good health and happiness in the coming year.

Christine and Tanya Harrison

Secretary and Chairperson BRAME


Latest News / 7 May 2004


Tony Wright MP Secures ME Adjournment Debate

 

Tony Wright MP, Chairman of the All Party Parliamentary Group on ME, has secured an Adjournment Debate in the House of Commons on Tuesday 11th May 2004.

The debate is to be called "Benefits System and Myalgic Encephalomyelitis", focussing on DLA Assessment and the new permitted work rules. We unfortunately cannot give you a start time as this depends on the day’s events, but it is not expected to start before 4pm.


Latest News / May 2004


12 May 2004
 

BRAME plan to be, health permitting, in London for the 12 May Rally. This year we are, as we have done for the previous 9 years, writing to all MPs. We will be highlighting the illness ME and the many problems faced by those affected with ME in the UK.

BRAME is also supporting the May 12 Rally being organised, by amongst others, CAME, The 25% ME Group and the MEA. We supported last year's rally, I was too ill to make the journey myself, but we were represented by Doris Jones. We are also supporting the MEA petition for research into the organic aetiology and pathogenesis of ME.


Latest News / May 2004


New Pages Added To Website

 

This site has been update to now include information about 12 May 2004, and the letter which BRAME sent this year to all MPs. We have also added accounts of 14 May 1998 – The BRAME Meeting in Parliament, our report of the Department of Work and Pensions Annual Forum 2003, and the 2001 BRAME Update.

This website is still under construction and will continue to be updated, please keep checking the site for new information.


Latest News / April 2004


BMJ Article Includes The BRAME Blue Ribbon

An article about Ribbon Development on the British Medical Journal website includes the BRAME Blue Ribbon – to read the article go to the BMJ website. This article lists the Blue Ribbon for ME alongside ribbons for AIDS and Cancer – a recognition of not only the success of the ribbon, but we feel, the severity of our illness.


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These pages were last updated on 7 June 2008