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BRAME Update – November 2002

Tanya’s last news-update, which she managed to produce a year ago, despite feeling so unwell, included her response to the Chief Medical Officer’s Report, explaining her reasons for not signing up after she had received the final document in November 2001. As you know Tanya was a member of the Chief Medical Officer’s Working Group on ME which met for almost 3 years. Tanya put a lot of effort and work into both attending the regular meetings in London, and the information and feedback into the group.

We are sorry that we have not really been in touch this year but we have both had health problems. Tanya’s health has deteriorated since November 2001 and she is unable to produce a further newsletter at present. Her consultant has now been adamant and insisted that Tanya starts taking greater care of herself and must not keep pushing herself to do so much, as she is damaging her own health. Despite all of the health problems we have tried to use what energy we have as effectively as possible.

Towards the end of 2001 we were invited by the Treasury Department to be part of a consultative process, including the proposed new tax credits to be announced in Gordon Brown’s budget, some of which will be introduced shortly. At the meeting we highlighted the extra problems facing those living with long-term illness and disabilities, and also the affect on families and their incomes when a partner or parent gives up work to become a full-time carer. This was not just an interactive meeting, we also did a long written response, highlighting 21 points, which was acknowledged by the Treasury Department, a carbon copy was also sent to Tony Wright MP, who is Chair of the APPG on ME.

In February 2002 we were invited to be part of a consultation process on the consultative draft report on the Risk Assessment of Mixtures of Pesticides and Similar Substances by the Food Standards Agency (FSA) and the independent Committee of Toxicity (COT). This was a very scientific meeting but also included representatives of people affected by organo-phosphates, organic farmers, food retailers and groups such as Greenpeace and Friends of the Earth. As well as attending the meeting we responded in writing, a copy of which can be found on the BRAME website (address above). The final report was published on 15 October 2002, the press release by the FSA can be found on their website FSA there is a link through from this site to the final document in PDF format for you to read or download. We were very pleased to be invited to be part of this consultative process, and welcome this first step to acknowledging and investigating the impact of the use and cumulative effects of, pesticides and similar substances in food, consumer products and the environment.

At the beginning of May in time for 12 May, ME Awareness Day, and the ME Awareness Week in the UK, as we have done in previous years, we sent a letter, Blue Ribbon and BRAME literature and information to every MP, MSP and MEP in the UK, and sent the same information to WAMES, the Welsh Group, to use with their own work with the Welsh Assembly. We know that some of our international colleagues were also writing to their own MEPs and the Belgium and French ME Groups had a joint conference on ME in Brussels on 11 May, which we also informed MEPs of in our letter to them, and asked them to attend if they were in Brussels.

We attended the Fatigue 2002 Conference in London on 17 and 18 May, organised by the National ME Centre, although Tanya was very unwell at this time and collapsed within a couple of hours on the first day and had to lay in a separate room. The conference included presentations on some really interesting research into the biology of what is happening within the body. We were encouraged by the presentation given by Dr Chaudhuri, who gave the Melvin Ramsay lecture regarding neurology in ME/CFS. There was of course also the speakers who were talking about CBT and sleep patterns etc., and from the many poster displays most were by occupational therapists, counsellors, and psychology departments about CBT, lifestyle management and cognitive function. The two poster displays of interest not on these areas were Doris Jones’ own research into ME, and Professor Pinching’s pilot study on Inosine pranobex (Imunovir) which is an immuno-modulator. The preliminary results of this trial have been encouraging, and suggest that a clinical trial of Inosine pranobex in ME/CFS is justified and implies that immune mechanisms are involved. We were also pleased to hear Dr Charles Shepherd highlight in his presentation, that following the York Review of research evidence into ME/CFS for the CMO Working Group report, that all future research projects should make sure that they reach the strict inclusion criteria, as out of over 300 clinical trials presented to the York Review, only 43 trials were accepted. The National ME Centre are producing a DVD of the meeting which should be available by the end of the year from: The National ME Centre, Disablement Services Centre, Harold Wood Hospital, Romford, Essex, RM3 0AR.

As a result of the CMO report, the Medical Research Council (MRC) have set up a committee to discuss the strategy for research into ME/CFS. We have given comprehensive feedback to the MRC on where we feel medical research is needed ie. the biology of the illness ME. The MRC should be announcing their research strategy in the new year/spring 2003. We have also followed this up with our grave concern over hearing that £2.6 million is to be allocated to further research into CBT and GET (not confirmed as yet), despite the evidence presented of thousands of ME sufferers that, for the vast majority, these methods of treatment are not appropriate or can be harmful. We have been working with the 25% ME Group on highlighting our concerns over further research in this area and the urgent need to promote new research projects and support current research into the biology of the organic illness ME. So the battle continues!! We forwarded a copy of both these responses to Tony Wright MP.

We have met with Tony Wright, MP for Great Yarmouth and Chair of the APPG on ME, on more than one occasion over the past year. When we meet we have had a very open and frank discussion on the concerns of ME sufferers around the UK. In particular we have raised our concerns over the pending MRC research strategy and how, following the publication of the CMO Report on ME/CFS in January, which recommended CBT and GET as effective treatments, we have become more aware, as the year has gone on, of doctors recommending CBT and GET as appropriate forms of treatment on the advice of the CMO Report. This is what Tanya feared may happen and was one of the reasons why she felt she could not sign up to the report. We know that some patients and their carers are now not only reporting what they feel is bad management/treatment, at both GP and hospital out/in-patient levels, to Local Health Authorities, but are sending copies of their documented problems over health care to the Chief Medical Officer and their MP - it is useful to also send a copy for his information to Tony Wright MP as Chair of the APPG on ME so that he can be aware of what problems are arising, and in which areas of the UK, to raise these issues in future meetings of the APPG. It is important to write to your own MP, and meet with them as well if possible, as your own MP will be able to help raise matters at a local, as well as national, level for you. It gives added support to the APPG on ME if more MPs can join the group and highlight issues from around the UK, as well as participate in future debates on ME in the House. We once again informed Tony of the many concerns we receive from individuals and groups around the UK who do not receive the minutes of the APPG on ME meetings for a considerable time. Tony apologised for this and asked us to once again explain that he is a constituency MP with a very heavy workload and has to rely on outside assistance when it comes to providing a secretariat for the group. We thanked Tony for continuing to Chair the APPG on ME when we know what a good and hardworking constituency MP he is, and the busy schedule and workload that involves.

For some years now we have been attending meetings with the Department of Works and Pensions (DWP), formerly known as the Benefits Agency. We recently attended a DWP meeting in London, where we spoke and gave information on ME to the chief medical officer of the visiting benefits doctors, she was very welcoming and receptive and had received our information in the past. She was aware of the past problems faced by ME sufferers with visiting doctors and sincerely hoped that attitudes had changed dramatically, but said that if a doctor has acted inappropriately then they do need to know. Her colleague addressing the meeting said that complaints about visiting doctors do not go unnoticed and are now acted on more quickly. At the BRAME meeting in Parliament in May 1998 we handed over a large dossier about the problems faced by patients with ME. Although improved we continue to highlight the problems some ME sufferers and carers still experience with benefit claims. Tanya also raised once again the problems with benefits faced by those in post 16 education – the DWP representatives were unaware of how disabling, rather than enabling, an experience this is, and said they would take this away with them and raise it at a higher level.

Tanya also raised our concerns over the proposed new benefit payment methods to be introduced shortly, this triggered a reaction from many at the meeting who have similar concerns over direct payment methods and PIN numbers. Several supported Tanya and added their own concerns in the issues she raised, in that she felt it would cause problems for many who are sick and disabled, from having to remember their PIN number to access their account, to having to trust another person with their PIN to access their account if they were unable to collect their money themselves. Whilst we appreciated the reasons behind the introduction of such a system to pay benefits in a cheaper more efficient way and of trying to stop fraud, we strongly advised the DWP of the problems we envisaged, and recommended that clients should still be given a choice of the old method of a payment book or the new direct payments. On our return from London we met with our regional representative of the Voluntary Sector Partnership and have initiated a meeting to be organised in our region to highlight these changes and the problems they may create. This is something which needs to be highlighted around the UK and perhaps groups/individuals could also initiate similar meetings around the UK, with other representative groups in their area, also inviting local MPs and Post Office personnel to attend.

We were extremely sad to hear of the passing this year of one of the leading GPs/Researchers who was a pioneer in caring for patients with ME. Dr John Richardson died in July at the age of 87, he continued to see patients until his admission into hospital. Dr Richardson’s book Enteroviral & Toxin Mediated ME/CFS and Other Organ Pathologies (the detailed study of his patients over the past 50 years) was finally published before his death and is highly recommended. We are delighted that we were able to offer Dr Richardson the opportunity to present his work at our BRAME meeting in Parliament in May 1998. Dr Richardson was a man of many gifts, but most of all his kindness and humanity will be remembered by all who had the privilege to know him, he is a true loss, not only to his family, but to the ME community and the world in general, a real gentleman who will be sorely missed.

BRAME donated £200 to the Newcastle ME Research Group in memory of Dr Richardson. BRAME receives no funding and relies solely on donations, but from our very limited funds we were also able to make donations this year of £2500 to the CFS Research Foundation, £250 to Dr Les Simpson for his research work, and £250 to the Alison Hunter Research Fund.

We hope that this coming year will see great leaps forward in the research of ME and CFS, and better health for all those suffering with these debilitating illnesses. Thank you to all who have supported BRAME and our very best wishes for 2003.

Christine and Tanya Harrison

Secretary and Chairperson BRAME

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