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BRAME Update – December 2003

My apologies once again this year for not being able to produce a full newsletter of ME TODAY, but my health has deteriorated further and has caused myself, and my doctors, greater concern. I have been ill with ME for the past 18 years and it seems to be taking a greater toll on my body.

ME Awareness 2003

Despite being so ill this year, we once again wrote to every MP in the UK, as we have since May 1996, in time for ME Awareness Day on 12 May 2003, enclosing a Blue Ribbon, information on ME and our BRAME literature. If you have any problems, be it with benefits, new clinics, existing clinics/doctors, the CMO report, the MRC decisions, anything which is affecting you, then please write to your MPs, also sending a copy to Anthony D Wright MP (Chair of the APPG on ME) for his information. The APPG can be far more effective if they hear from you, the people affected by this debilitating illness. They need your case studies and evidence, in order to have the most impact, and to give you the help that you need.

This year, as well as all the MPs, on 1 May 2003 we also wrote at length to the Chief Medical Officer (CMO), Sir Liam Donaldson, and the Medical Research Council (MRC) to once again highlight, the needs of those living with ME; for improved and appropriate medical services for ME patients; for much needed research into the organic illness ME; the special needs of the severely and long-term affected, and for young people with ME. We again wrote to the CMO and the Minister at the Department of Health following the announcement, on 12 May, of £8.5 million for new ME/CFS services within the NHS, for this money to be allocated appropriately and to support what ME/CFS sufferers have found to be good practice of management of ME/CFS. We received lengthy responses and are still currently continuing with this correspondence with the CMO and the new Minister, and so the battle continues!

As you all know I was on the CMO working group and attended all but one of the meetings. I was very vocal in the meetings and fought for ME as a real physical illness, and eloquently related the consequences and effect that ME has on the lives of the sufferers and their families. I then followed this up in writing with very detailed responses to the group. I fought for illness beliefs to be removed as much as possible, and for the sections on the severely affected which were included. But as you are aware with parts of the report being removed by the final stages, and GET and CBT being the recommended forms of treatment, I felt unable to sign up to the final report This was sad as I had put a lot of time and effort in, and many of my comments and input had been included in the final report, but I knew from the patient perspective, once doctors and Local Health Authorities (LHA’s) read GET and CBT as recommended forms of treatment, this would be the treatment pattern they would follow.

My fears about the recommendations of the CMO report have unfortunately come to fruition this year, with BRAME hearing of more and more cases of people only being offered the options of GET and CBT because "the CMO report recommends them". These treatments have been found by the majority of patients to be harmful, or not helpful, and yet they continue to be promoted. This will also not be helped by the MRC funding yet more psychiatrist led research into these treatments. There are real concerns with ME patients around the UK as some LHA’s will now only fund CBT and GET treatments for patients, and in some areas psychiatrists are being asked by LHA’s to set up new ME/CFS clinics.

I was very ill in May, and my consultant would not allow me, to attend the march on 12 May from Department of Health to House of Commons organised by CAME, but we had already written at length to the relevant people and Ministers with our continued concerns about ME, and Doris Jones kindly agreed to represent us on the march.

Department of Works and Pensions Meeting – July 2003

In July we managed to go to London and meet with the Chief Executive and Heads of Departments of the Department of Works and Pensions (DWP), the new Minister for Work, Des Browne MP was in attendance as well. We also met and spoke at length with, the Chief Medical Officer (CMO) for the DWP, Dr Mansel Aylward. We thought he may have felt that we were rather confrontational in the meeting, as we challenged various areas relating to benefits, and medicals, but he was very pleasant and read our literature, and then said he did not disagree with anything we said in our literature, and we then had a very full and frank discussion about ME as an illness, which he believed in, and the problems ME sufferers face. Since July we have been in correspondence with Dr Mansel Aylward and his Principal Medical Advisor Dr Moira Hendserson, and we hope that this correspondence, and an invitation to attend further meetings with them, will continue.

Apart from general open meetings and presentations, we attended two workshops during the day. The first on direct payments was very vocal and at times there was quite fervent dissension. Representatives, including ourselves, have been very vocal about our concerns about introducing direct payments over the past 2 years. We have serious concern about the use of PIN numbers for those who have sight, physical and mental health problems, who may not be able to insert their PIN correctly, and especially for those who have an agent collect their benefits for them, who would then have access to the person’s full account. This is of particular concern where someone has casual or multiple carers. People when phoning the help-line were not always being given a choice if they have a bank account, eg many elderly people have a bank account but do not actively use it for day-to-day living, many are unable to write a cheque for themselves and rely on others to do so. Many local banks are now closed, and the nearest bank could be at least 10 miles away.

We also raised the issue of so many local Post Offices now being closed, which is causing real concern. When asked ‘Will Post Office accounts be phased out?’ we were told that ‘The DWP has a contract with the Post Office until 2010. This product was always seen as a stepping stone and 6 months into a 7 year contract it is too soon to take a firm view about the longer-term future’. So what will happen in 2010? We will continue to fight these issues and raise your concerns with the DWP, but do also write to your MPs, with a copy to the APPG on ME, about any of your concerns or experiences on these issues.

The second workshop was about a new IT programme on Evidence Based Medicine (EBM) for Personal Capability Assessment (PCA), to be introduced initially for Incapacity Benefit (IB). At present the technology does not allow this to be taken by visiting doctors into the home. We were particularly concerned and quite challenging about what research evidence had been looked at, especially with ME, as most papers, which are published in the medical journals, are by psychiatrists. The doctors did try to reassure us that they did look at a broad spectrum of research, and that on answering the questions on the IT programme there should be space to add any other relevant information. We did raise our real concerns when asking a question to be told that apparently some of the assessment would not take place with the patient present – but this was justified in that this happens currently with the old written forms.

Meeting in Parliament – July 2003

Whilst in London, we followed the meeting with the DWP and its CMO with a meeting in Parliament where we again raised all the issues which are ongoing regarding ME, including treatments for ME, approach of LHA’s and PCT’s, concerns over the setting up of new ME clinics, MRC, funding and research issues, and DWP and benefits. We have followed these meetings up with further correspondence, and are currently helping with information for a further adjournment debate on ME and benefits. We also raised the concerns many have with direct payments and the closure of Post Offices. We would like to take this opportunity of thanking Tony Wright for his unstinting support of BRAME and all those affected by ME, and his continued hard work on raising issues affecting people with ME within the APPG on ME, by contacting relevant Ministers and within Parliament itself. A letter from Tony Wright, Chair of the APPG on ME, is at the end of this newsletter.

Food Standards Agency – Investigation into Mixtures of Pesticides and Similar Substances

We have also received a final draft document from the Food Standards Agency (FSA) to read and respond to, as we had been part of their wider consultative group, feeding into the scientific group investigating the affect of pesticides and similar substances. Some ME sufferers feel that organophosphates (OP) have caused their illness, and many others develop chemical sensitivities, often to foods which have been produced using chemicals and additives. We have now responded to this and our response can be found on the BRAME website. The last draft, available to the public at present, can be found on the FSA website.


CFS Research Foundation

To end on a more positive note, last year we managed to make a sizeable donation from our limited funds to the CFS Research Foundation. The CFSRF is a charity founded in 1993, and over the past 10 years have funded research into different aspects of ME/CFS. If you have not received their summer newsletter, we are pleased to tell you that they are making good progress with their genetic research with ME. Speaking to Anne Faulkner (Hon Director) during the summer months, she told us how this research is looking extremely promising, and we have heard now that a paper has been accepted for publication on these initial findings, and so we are not at liberty to write any more about their research, but we can print these brief extracts from the CFSRF summer newsletter regarding their genetic research.

Work was previously funded by the Foundation, using less developed methods that indicated that in a small group of patients a cluster of genes might be activated. More recent work indicated that chemicals that act as messengers in inflammation and other changes may be found in the blood of patients who have developed CFS after being infected with a particular virus, parvovirus B19. Such results indicate that in order to confirm and understand these early, but exciting findings we need to use material from larger numbers of fully studied patients and a full range of methods for detecting activation or depression of as many as possible of human genes.

We are waiting for the results of this full scale pilot study. All being well it will show us that genes involved in some of the many body functions, such as the nervous system, immunity, hormones or infection, are working abnormally in some cases. Assuming this happens then we will want to expand the studies to include patients from other clinics with other ranges of symptoms and start looking at responses to treatment using existing or novel drugs.

Our more recent correspondence and personal contact with the CFSRF has been both encouraging and inspirational as the genetic research is looking so promising that it is being extended to include larger groups from independent clinics around the UK. So there is still hope on the horizon that an answer will still be found for ME, and we do feel that this research is worth supporting. The CFSRF is currently trying to raise funds for this genetic research. BRAME hopes to make a further donation if funds allow. If anyone is able to manage a donation, however small, then please forward it to:- CFS Research Foundation, 2 The Briars, Sarratt, Rickmansworth, Herts WD3 6AU

ME Research Group for Education and Support (MERGE)

MERGE is another medical research charity in the UK, founded in 2000, and, like BRAME, also aims to increase public awareness of ME and its consequences. MERGE primarily commission and fund innovative biomedical research into the causes and treatment of ME and other related conditions. The results of their research have been published in scientific journals and are summarised on their website.

So whilst some may think we are not as active as before, we are, it is just with my health being so compromised and poor now, we have tried to concentrate what time and energy there is, with working at the highest level, to inform and educate about ME as an illness, the problems it causes those living with ME, and to try and effect change for the benefit of ME sufferers and their families. We have tried to do this in as professional, dignified and yet friendly a way as possible. We are greeted when attending these meetings with great warmth and kindness, and so we do feel that we are sincerely building bridges, which can eventually only be of help to us all.

Thank you once again, all supporters of BRAME, for the enormous effort and contribution, which you have made over the years, not only in raising funds to help BRAME continue with its work on behalf of those living with ME, but for also helping us to raise a greater awareness and understanding of ME in your local community. It is working together in this way, united through the BRAME campaign at a local, national and world-wide level that we can really make a difference.

We know how difficult it is to live with ME, and we do sincerely wish you all improved health in the coming year. Let us hope that it will not be too much longer before we receive the acknowledgement and recognition that ME truly deserves, as the chronic, complex and debilitating illness we all know it is, and that we will soon find an appropriate treatment which will enable us all to have a better quality of life once again.

With our very best wishes for 2004

Tanya Harrison

Chairperson BRAME

03-12-03: All Party Parliamentary Group on ME – Update for BRAME

Dear Reader,

I am writing to thank BRAME for providing the impetus to begin the All Party Parliamentary Group on ME, which attempts to raise awareness of the concerns of ME sufferers and work for their benefit. At every opportunity, I ask ME sufferers to write to their local MPs to raise awareness of ME and encourage them to join the APPG on ME. This is essential in making Parliament more aware of the problems for sufferers and carers alike in living with ME.

Meetings of the APPG for this year have centred on the £8.5 million pounds of Government funding announced for the establishment of ME services across the UK. Most notably, the APPG has heard presentations from Professor Nancy Rothwell, Chair of the CFS/ME Research Advisory Group and Dr. Diana Dunstan, Director of the Research Management Group, regarding the MRC’s CFS/ME Research Strategy. Recently Professor Anthony Pinching, Chair of the Service Implementation Group advising the Department of Health, provided a presentation on the process of how the £8.5 million in Government funding for ME services will be allocated.

The APPG will carefully monitor the allocation of new Department of Health funding for ME this coming year and push for additional resources. Additionally as Chair of the APPG, I will seek to hold an Adjournment Debate in Parliament at the start of next year looking at problems facing ME sufferers in our current benefits system, based on correspondence I have received.

Minutes of the All Party Parliamentary Group on ME can be found on the website of Action for ME, which provides the secretariat for the group.

Yours Sincerely,

Tony Wright MP (Great Yarmouth)

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