1995 - 2005

Ten Years of Achievements 1995 – 2005

I launched BRAME on the 24 April 1995, and in the past ten years we have achieved so much. By the end of 1995 BRAME was no longer a UK organisation, we were international. Today we have created a network of 21 countries around the world, including the Republic of Ireland who have raised a great amount for research using the aims of BRAME, and Australia.

Our primary aim has always been, to create an increased awareness and understanding that ME/CFS is a very real and debilitating illness. Over the past ten years our BRAME literature, written from our personal experience, has been a huge success, being translated into different languages and used around the world. The BRAME newsletter was highly successful, and at times ran to 100 pages long and full of research information, advice, help and personal stories. Unfortunately over the past few years I have been too ill to continue producing the newsletter, and sadly have had to change to these news-sheets.

On the 14 May 1998 BRAME co-organised and co-chaired, with Anthony D Wright, MP for Great Yarmouth, a meeting in Parliament. This meeting created a shockwave through Parliament with people attending from around the country, many lying on the floor – showing how debilitating an illness this is. 52 MPs attended the meeting, with many more sending their apologies due to previous commitments. BRAME handed in evidence and literature about the illness to the two Parliamentary libraries. A fuller commentary of the Parliamentary meeting can be found on the BRAME website. Since May 1996 we have written to every UK MP and MEP in time for ME Awareness Day on 12 May, enclosing a Blue Ribbon, information about ME and BRAME literature.

Two main results came out of that successful BRAME meeting in Parliament on 14 May 1998:

Anthony D Wright MP announced that he would be setting up an All Party Parliamentary Group on ME/CFS. Set up in early 1999 this group is still going strong with Tony still Chair of the group.

After the immediate contact from the Department of Health asking for our advice and input, we were then advised that on the 16 July 1998 the Chief Medical Officer (CMO) was setting up a Working Group on ME/CFS. The Working Group published their document in January 2002. I was a member of the Key Group, and despite my efforts to have the severely affected better represented, and many of my comments being included in the report, sadly I felt unable to sign up, due to the advocacy of CBT and GET as the best treatments for ME/CFS (my response to the CMO report can be found on the BRAME website).

For the past eight years we have been working closely with the Department of Work and Pensions (formerly the Benefits Agency) to continually highlight the problems ME sufferers have within the benefits system, recently on the following areas: 1) We were asked to advise on the changes to their literature. 2) Direct Payment of benefits into banks – mobility and cognitive difficulties make this a difficulty for people with ME, especially if you have multiple carers. 3) Education and Training of the assessment/visiting doctors and the adjudication officers. 4) The DWP handbook entry on ME/CFS, which has a psychiatric bias. 5) The change in the Permit To Work rules, making therapeutic earning more difficult for people with ME/CFS. 6) A higher level of Carers Allowance for those carers who give 24/7 care and are unable to work – this also includes retrospective Pension Credits for long term carers. 7) Winter fuel payments for the disabled – especially those on high DLA and in receipt of Income Support.

Our government work does not stop with CMO Group and the DWP we have also worked with the:

Food Standards Agency on pesticide toxicity.

Inland Revenue on the new tax credits

Disability Discrimination Act on higher education – I was part of the Reference Group

Medical Research Council – highlighting the need for good quality research into aetiology and pathogenesis of ME.

NICE Guideline Development Group on ME/CFS – In February 2005 I was invited to become a member of the GDG on ME/CFS so that will keep me busy for the next couple of years as it is expected to be published in 2007.

Despite receiving no formal funding, and having to rely on small donations given to us by individuals and groups, we still manage to fulfil our aims, and we sincerely hope that you feel that we have used your donations wisely. Over the past ten years BRAME has made numerous contributions to research, primarily to the CFS Research Foundation and MERGE, although other payments have been made eg. to the Nightingale Research Foundation and the Alison Hunter Memorial Foundation.

BRAME set up our new website in 2004, www.brame.org., for many years our previous website was run by Kay Robinson, and our thanks go out to her. In 2004 the Blue Ribbon for ME was recognised on the British Medical Journal website in an article which listed it with the AIDS and Breast Cancer ribbons.

In 1995 we had a list of goals we wanted to achieve, and of all these goals we only have one left to achieve, for I feel that BRAME and the Blue Ribbon has made a difference in raising a greater awareness of this debilitating illness. We have wanted, since the start of the campaign, to have the BRAME enamel badges in high street stores for May Awareness Week, we feel that this could raise substantial funds for research and awareness, and despite repeatedly trying, we have so far been unable to accomplish this. When we do accomplish this, then hopefully it will be the point where ME has achieved the recognition and acknowledgement of the debilitating and chronic illness we all know this is.

I hope that reading just some of the things that BRAME has achieved over the past ten years will help you to understand what BRAME does, and continues to do, on the behalf of all those affected by ME/CFS year after year. BRAME remains a voluntary organisation run purely by myself and my carer, and we will continue to represent you to the best of our abilities.