In May 2004 we again wrote to every MP in the UK, as we have since May 1996, in time for ME Awareness Day on 12 May, enclosing a Blue Ribbon, information on ME and our BRAME literature. Please continue to write to your MPs sending a copy to the APPG on ME, for their information. The APPG can only be effective if they have the support of your MP, they can do this by becoming a member of the APPG on ME, and if they hear from you, the people affected by this debilitating illness.

On 12 May 2004 we attended the rally organised by CAME and the MEA. This started with a rally outside the Department of Health, during which the CMO Sir Liam Donaldson tried to sneak past, although he couldn’t escape my Mother as she spotted him. The day continued with myself, and others, presenting documents to Number 10 Downing Street. This was then followed by a walk/wheel to the Houses of Parliament to meet with your MPs. Given that Tony Wright MP (Chair of the APPG on ME) is also my local MP, we had the opportunity of a private meeting in order to discuss the problems of those affected by ME. Tony then joined the rest of the group for a fervent question and answer session, which was also attended by the Countess of Mar (Tony and the Countess are BRAME’s patrons). Following the day’s events, BRAME had the opportunity to have a constructive meeting with the Countess of Mar in the House of Lords. A rally will be held in London on 12 May 2005, organised by MERSC.

Congratulations to BRAME supporter Gary Frankum, a sufferer and former Speedway rider, who in November appeared on the ITV daytime show "This Morning" to talk about how he is affected by ME. Gary and Dr Chris Steele both sported Blue Ribbons.

In 2004 the British Medical Journal, on the web, included an article about ribbons in which the Blue Ribbon for ME was listed alongside the red AIDS ribbon and the pink Breast Cancer ribbon – giving legitimacy to our illness and cause.

Tony Wright MP has continued, as he has done for the past nine years, to support BRAME and fight for the rights of all those affected by ME. In the past year we have met with Tony on several occasions, and on 11 May 2004 he managed to secure another debate in the House of Commons, on the problems ME sufferers find in claiming benefits and within the benefit system. Benefits was the main focus of the APPG over the past year. Tony has informed us that this coming year the APPG plan to concentrate on the need for good quality research into the aetiology and pathogenesis of ME. Tony over the past nine years, eight of which as an MP, has worked tirelessly for those affected by ME, and we thank him wholeheartedly for all that he has done and achieved over that period, in particular his help and support in setting up the meeting in Parliament on 14 May 1998, which was a real turning point, and his setting up of the APPG on ME in 1999.

In 2004 BRAME was invited to become a stakeholder for the NICE Guideline Development Group on ME/CFS. In February 2005 I was invited to become a member of the Guideline Development Group and truly hope that this will be the start of a universally appropriate diagnostic criteria and treatment recommendations. The Guideline is expected to be published in 2007.

As you know BRAME runs on donations received. From our limited funds, BRAME was again able to donate money to research projects into the aetiology and pathogenesis of ME, by MERGE and the CFS Research Foundation (CFSRF) in 2004. The CFSRF now has two studies awaiting publication in medical journals. In August the CFSRF will be continuing the expansion of its research into gene expression to seven clinics around the UK, and also plan to include biomarkers in the cell, which could hopefully lead to the design of a diagnostic test and subsequent development of a treatment. MERGE have continued their research projects and their recent studies include "Altered Muscle Excitability", "Spinal Fluid Abnormalities in ME/CFS", and a "Biochemical Study of Young People with ME" – links to these two research organisations can be found on our website.

Although Tanya’s health was very poor, during 2004 we managed to attend two meetings with the senior executives and management of the DWP, as we feel such constructive meetings and dialogue are so vital to help improve the process of the benefits system for ME sufferers. In June 2004 Mr Terry Moran was appointed as the new Chief Executive of the Disability and Carers Service (DCS) and has brought in a new team of management to help him improve all aspects of the service. Mr Moran took time out to meet with us and listened intently as we raised the continuing problems which ME sufferers face when claiming benefits. We also informed him of the Benefits Paper which was produced in 1999 as part of the CMO Working Group on ME highlighting problems faced by ME sufferers with the benefits system, which was handed to the Minister at the time, and also the large dossier of information which was collated and handed over to a representative from their department at the BRAME 14 May 1998 meeting in Parliament. It also emphasised the length of time we have been battling these issues with the DWP.

Pauline Thompson the newly appointed specialist training manager for the DCS was with Mr Moran, and acknowledged that they realised there did appear to be problems with benefit claims from ME sufferers, and this was something which needed to be addressed. As a result we were asked to do a full report on the problem areas we raised during this meeting and send to Mr Moran and his senior executive team. We collated our 5,000+ word report and sent it off, with supportive evidence, along with a separate report we did on the need for an urgent review of the DWP Disability Handbook on CFS, highlighting specific areas and text which needed to be revised. This handbook is used by the visiting doctors, and so it is vital that the information in it is as accurate about the illness as possible. We have now received a lengthy response to both our report to the DWP, and to Tony Wright’s Letter, on our behalf, to Maria Eagle about Carer’s Allowance and Winter Fuel Payments, which provided us with answers to questions only an MP can ask. In our report we highlighted:

Terry Moran identified the problems with the telephone helplines, and of course the need for improved training and education of the visiting doctors and decision-makers, to try and improve the service. He also wants to reduce the large number of applicants who have to go to appeal. He recognises that many are then successful on their appeal, often without presenting any new substantial evidence, and so often it must be the decision makers making an incorrect award initially on the evidence in front of them. The problems claimants had with decision makers and visiting doctors were discussed at length in a special workshop we attended with Pauline Thompson, and it is hoped to bring in a recognised training accreditation for all new and current employees. The aim is to try and achieve the correct award of benefits at the first application, which is not only obviously of benefit to the claimant, but also cuts down on the work of the DCS, and everyone involved with going to appeal. We asked for better education and training of doctors and also for them to be honest with the DWP if they will not accept ME as an illness. We highlighted the need for specific training on illnesses such as ME, where there seems to be a ‘black hole’ in the system eg the 25% Group survey last year showed 59% of applicants are turned down on their first application, and 85% are successful on appeal. They were not pleased to hear these statistics and said it showed the work that needs to be done to improve the system.

We wrote a separate report on the Disability Handbook going through it point-by-point, highlighting the entries/wording that needed to be changed and why. We accentuated the urgent need to revise the current entry on CFS, to be more descriptive and appropriate for the illness ME/CFS. This would be more helpful for visiting doctors, especially if they have no experience of the illness, or have not seen anyone who is a severe sufferer, who will have a multitude of complex symptoms, be in constant and unrelenting pain, and are often profoundly neurologically affected by their ME. At present the entry on CFS has a more psychiatric/psychological bias towards the illness. We continue to raise our concerns over referenced research papers, as most that seem to be published on ME are by psychiatrists, and there is a wealth of good research out there from eminent scientists investigating the aetiology and pathogenesis of ME, but they have difficulty getting their valuable work published. Certainly for long-term severely affected ME patients there is a huge difference between ME and other ‘fatigue states’.

We strongly recommended, as we had done previously to the DWP CMO Dr Mansel Aylward in 2003, that the recently published Canadian Report on ME/CFS be used as a reference for the training of doctors and for the disability handbook reference to ME/CFS. This is the best overview of ME/CFS published to date – it approaches ME/CFS as a serious and chronic illness as respectively as other illnesses. A link to the Canadian Report can be found on our website.

When we highlighted our increasing concerns about the new permit to work rules, Mr Moran was unaware of the adjournment debate in the House of Commons on 11 May 2004, led by our patron Mr Anthony D Wright MP, who is also Chair of the all Party Parliamentary Group on ME. In the debate Tony Wright MP highlighted that the new ‘permit to work rules’ are far more restrictive than the old ‘therapeutic work’, especially for those with long-term chronic illness and disability, such as ME, who may never be able to work on a regular and sustained basis, even for a few hours every week, but could gain benefit from inclusion in a work environment, as and when they feel able. The system has to be flexible, and over a much longer period of time, as the system of making a decision after a set period of time will create difficulties. A copy of the debate was forwarded to Mr Moran.

We raised our concerns that Carers are being called to attend ‘compulsory job appointments’ and if they do not comply then the disabled person’s benefits could be affected. We have however been assured that the carers will not be forced back into work. We questioned Maria Eagle about the amount of money given to carers, seeing as they save the government a great deal of money, and we were informed that "we should be grateful that carers are now recognised". (Further details can be found on our website on the 'BRAME and DWP' page).

Our proposal, which we have been fighting for since 2000/2001, is for a 2-tier Carers Allowance, with a higher rate of carers allowance of £123.35 a week, to be introduced for those who give more than 120 hours of care a week ie more than 5 days of 24 hour care. This amount is made up of the £44.35 basic carer’s allowance, plus the £79 that other carer’s are also allowed to earn by working part-time, who just give a less intense level of care to their relative/friend and are not providing care for someone totally dependent on them for their every need. We have also been fighting for the new pension credit for carers to be paid retrospectively. These proposals will help to decrease the financial stress for the carer. We will continue to campaign on both of these important issues.

Carers give the essential 24 hour care that these people need, and at £44.35 per week, or 168 hours at 26 pence an hour. In 2001 a report stated that carers save the government £34 billion per year. The majority of these 24 hour carers have given up their lives, and their own income and careers, to care for a loved one willingly, but it does not stop the impact on the family home and finances, the inability to save for their retirement, or as years go by, to do necessary repairs on their homes, as well as the impact on their own health and well-being. Whilst we appreciate that the disabled person has benefits, this is eaten up very quickly to cover their own special needs, dietary requirement, etc. Whilst the Government has done much for the elderly and families with young children, those who care for a dependent adult, ie. over 16 years old, are constantly left worse off.

We have been raising our concerns about the new benefit payment methods ever since its proposal, and have raised issues about it over the past 3 years of meetings with the DWP. These issues include the problems of having multiple carers, the remembering of/using a PIN number, and the subsequent closure of local post offices, leaving the nearest bank/PO many miles away. This system is also more open to fraud, with some people already experiencing problems of money being removed from their accounts.

There is a choice, if you are unable to have your money paid into a bank/building society/PO account – they will send a cheque through the post for you to cash. This option is not perfect, with the worry of whether your payment will turn up through the post, but considering the alternative is, if you have multiple carers, giving your PIN number out to other people, then it is preferable. The remembering of a PIN number is not only difficult for people with ME, but with other conditions such as dyspraxia and Alzheimers, and people in wheelchairs or with visual difficulties have problems with being able to enter their PIN numbers.

Although in 2003 we were told verbally, we have now been formally advised by the DWP that "The Post Office card account contract runs until 2010 and was designed as a stepping-stone for those who had never held a standard or basic bank account to give them the opportunity to become familiar with the banking world, with a view to them moving into a basic or standard bank account in the future." This we fear will lead to the closure of local post offices. So many sick, disabled and elderly people are often totally reliant on their local Post Offices, even more so in a rural community, and also in semi-urban areas. Increasing numbers of small branches of banks/building societies are also being, or have already been, closed. Please write to your local MPs asking them to fight the closure of Post Offices, these are a vital lifeline for so many people.

We challenged Maria Eagle for Winter Fuel Payments to be made to the disabled, in particular those on high mobility/care and Income Support. We were informed by her that the disabled do not suffer "fuel poverty" and "that most people who are disabled are over 60 anyway". We will continue to fight on this issue as with rising oil/electricity/gas prices the cost of heating has risen considerably, leading to many disabled people being unable/struggling to afford to keep warm.

In conclusion, we do feel encouraged that Terry Moran and his new team all seem to be sincerely committed to improving the system, and at present do seem to want to include the views of representatives like ourselves, and for us to highlight the good, and the bad areas, within the system, and how they can improve things for applicants, and their advocates, in contacting anyone within the benefits system, and how it could prove more helpful and efficient in dispensing advice and benefits.

Thank you to everyone for your most valued support of BRAME over the past ten years. We will continue campaigning on the behalf of all those affected by ME, and hope that you will continue to support us in our efforts. Best wishes and better health.

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.