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Issue 10           December 2001


Firstly welcome to this brief edition of ME TODAY and our sincere thanks to all of you, in the UK and around the world, who have continued to support BRAME. As most of you know the BRAME campaign was initiated by myself in April 1995 and is run by just myself and my mum/carer Christine. Unfortunately I have been too ill to do a newsletter since November 1999, but we want you to know that we are using what time and energy we have by continuing our work at a more governmental level in highlighting the plight of those living with ME, and creating a greater awareness and understanding of the illness ME and the consequences of living with such a complex and debilitating illness. As I have been unable to do a newsletter recently people may think that we have not been very proactive of late but I hope that this brief news-sheet will give you a synopsis of what we have been doing.

BRAME receives no formal funding, the vast majority of our donations are personal and we are very grateful for these, both large and small. We have not received as many donations recently but we still hope when we do our end of year accounts to send between £2000 and £3000 to research into this debilitating illness in the new year. One group which has adopted the BRAME objectives has been CAME, which was formed and run by Trevor Wainwright, who uses BRAME products and literature in his fund-raising efforts. Since he started in November 1997 he has raised £3196 for BRAME and £9880 for the CFS Research Foundation over the past four years. Our thanks to you all for your generous support.

We would also like to thank ME groups for continuing to send your newsletters, and to everyone for your tolerance with delays in correspondence etc over the past three years. We experienced enormous problems with redirected mail, plus there were more demands on us as we tried to balance my personal goal of going to university with running the campaign. I now have been ordered to rest as I have many health issues to be addressed and must begin treatment for my osteoporosis, which I have put off for the past three years so that I could realise my own personal dream of going to university – even if it was with Mum and two wheelchairs in tow! It was an extremely difficult three years, and several times each year I was so desperately ill I felt it was the end, but thanks to Mum, who moved away with me for three years so that she could give me the 24 hour care I need, I managed to graduate this summer.

I have been a member of the Chief Medical Officer’s Key Group on ME/CFS for the past 2 years, and have fought very hard, and been very vocal within the group, to highlight the illness ME and the impact of this most complex and debilitating illness on the sufferer and the family. I have also fought very hard about the harm caused to so many of you by different treatments, as well as your experiences in general. I have, along with Simon Lawrence of the 25% Group, also fought very hard to highlight the particular difficulties facing those who are severely affected by ME, and for the needs of the long-term severely affected ME patients to be acknowledged and addressed. As many of you may know we have both been severely affected by ME ourselves for very many years now, and are fully aware of the extra problems this group of patients face.

It was through the BRAME meeting in Parliament on 14 May 1998, which I co-chaired with Tony D Wright MP, to highlight the illness and consequences of living with ME, that the All Party Parliamentary Group on ME was formed. At the meeting BRAME also collated a wealth of information about ME and presented two sets for both Parliamentary libraries. I made another presentation in Parliament to the APPG on ME in July 2000 for the need to improve services within the NHS for ME sufferers. You will be pleased to hear that Tony D Wright was re-elected as a Labour MP in June and at the short meeting in November, when the APPG on ME was reconstitutionalised, he was re-elected as Chair, Rev Martin Smythe (Ulster Unionists) and Paul Burstow (Liberal Democrat) have been elected Vice-Chairs, Stephen McCabe (Labour) is Secretary and David Amiss (Conservative) has been approached to become Treasurer. Tony says that they are "looking forward to an important year." We have also met with members of the House of Lords to highlight the needs of ME sufferers and the Countess of Mar has since become our patron. We also supplied information and were used as a named case study within a debate in the House of Commons earlier this year, regarding the plight of carers and the impact caring has on the primary carer and the rest of the family, and the low reward carers get with Invalid Carers Allowance, and the billions of pounds which carers save the government each year.

We have been continuing our work with the Benefits Agency over recent years and were part of the consultative group for drafting the new booklets and leaflets recently produced by BA. We have also been part of the consultation process for the Inland Revenue on the new employment tax credits to replace the Disabled Persons Tax Credits which is to be introduced soon. Through my recent disability work I have also been part of the consultation group on the Code of Practice for part IV of the Disability Discrimination Act produced by the Disability Rights Commission. Part IV of the DDA relates to pre and post 16 education.

We are also currently working with the Benefits Agency, now to be called the Department of Works and Pensions (DWP) on highlighting:

  • the continuing problems generally facing those suffering with ME in claiming benefits such as DLA and SDA, visiting doctors, appeals etc

  • the particular problems which will face those suffering with ME as the government introduces the new ‘Job Centre Plus’ which is already being piloted in some areas of the country

  • the need for improved benefits for carers – eg. 2 levels of ICA to acknowledge full-time carers.

  • beginning to lobby MPs and the Minister for Pensions regarding the proposed ‘pension for carers’, which the government is beginning to draft. This is to be introduced in April 2002 with no retrospective acknowledgement of all the years carers have already given, which we feel is wrong, especially for those who are giving 24 hour care 7 days a week, and are saving the government £34 billion a year. We hope that you will all help support us in this and start lobbying your own MPs.

Whilst I have been too ill to manage to do a newsletter for some time, we hope BRAME supporters will realise that we have not been idle, but have been using what little time and energy we have had to its best use, which has been trying to make the voice of ME sufferers be heard at governmental level to hopefully improve things for those living with ME at the formative stages of new policies.

We would like to thank everyone for their most valued support of BRAME over the years, and hopefully it will not be too long before we receive the acknowledgement and recognition that ME is a complex, debilitating and individualistic illness of organic origin and that one day doctors and researchers will find an answer to this illness enabling you all to experience a better quality of life. Our thoughts are with you all, particularly those of you who have lost loved ones to this illness. Let us hope that 2002 will be a better year for us all.



Chairperson BRAME

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