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ME AWARENESS 2007
PROPOSAL FOR A PARLIAMENTARY DEBATE ON At the All Party Parliamentary Group Meeting on ME held at the House of Commons on 12.7.2007 the principal topic of discussion concerned funding problems for specialist services for ME/CFS patients, experienced particularly in the Norfolk/ Suffolk/Cambridgeshire areas, as reported by Dr Terry Mitchell, but also applying generally throughout the country. However, John Bercow MP for Buckingham said he had recently visited Dr Charles Shepherd and was aware of many urgent problems affecting ME patients. The MEA’s office was in his constituency and therefore he had a special interest in the subject. He suggested that the combination of a very critical current situation, a reshuffle of ministers and a change in governmental appointments offered a timely opportunity to call for a parliamentary debate on ME. This proposal was endorsed by Dr Des Turner MP, Chairman of the APPG on ME, and supported by all those present. It was stressed that it would be necessary for numerous requests to be made for such a debate, and therefore patients should contact their MPs urgently with such requests. Dr Turner stated there were a number of critical issues to be discussed: funding for clinical services, the general lack of research, several new guidelines (e.g. NICE, DWP, NHS Plus), Dr Gibson’s Report etc. Hence this would need to be a long debate of at least one hour. It is understood that this proposed parliamentary debate will replace the previously proposed Early Day Motion, following the release of Dr Gibson’s Report. We urge all our members to write urgently to their MPs requesting an early parliamentary debate on ME 
26th June 2007 Press Release concerning Biological Research
This year's ME Awareness Week Campaign is well underway and we are focusing particularly on the problems surrounding the NICE Draft Guidelines for CFS/ME, the DWP CFS/ME Guidelines and the NHS Plus Guidance Documents on ME/CFS. The main ME charities have been united in their response to the above documents and have produced statements on each of them which are enclosed. As always, we need your help to distribute the enclosed information and standard letters. Remember that we are the only national charity solely dedicated to raising awareness of the severely affected and we require your assistance in doing this on a national level, so please do your best to aid us in this work by taking part in the following ME Awareness Campaign. Thanks! Brief explanation of enclosed letters and where to send them: MP/MSP Form Letter: This should be sent to your local MP/MSP, just add your name, address and signature and post to your local MP at House of Commons, London, SW1A 0AA or your local MSP, The Scottish Parliament, Edinburgh, EH99 1SP. If you would like to write your own letter to your MP/MSP, then feel free to use the enclosed material to help you do this. Please remember to be as concise as possible, especially if you tell how the disease affects you. 3 Charity Statements: Send these along with the MP/MSP Form letter. Almost all of the main ME charities have been extremely concerned about the Guidelines which are being (or have been) produced by NICE (National Institute for the Centre of Excellence), the DWP (Department of Works & Pensions) and the NHS Plus Guidance on the Occupational Aspects of the Management of CFS. The overall level of disgust caused by these dreadful documents has managed to unite the main ME charities in order to produce the enclosed statements. We hope by each of our members sending these (along with the MP/MSP form letter) that it will continue awareness of the opposition to these Guidelines by the whole of the ME community
IF YOU HAVE ANY QUESTIONS THEN PLEASE CONTACT THE OFFICE NICE Guidelines Agreed Statement by Charities.doc DWP ME Organisations Response.V9.doc If you would like to send a letter to your Health Authority Chief Executive, then you can download a letter below and send with the documents also listed in this section ALL the Chief Executives of the Scottish Health Boards have already been sent the letter and Florida Report
FOR INFORMATION PURPOSES ONLY - NOT FOR GENERAL USE WE ALSO SENT OUT AS PART OF OUR CAMPAIGNING EFFORTS, LETTER TO VARIOUS OFFICERS LETTER'S TO VARIOUS OFFICIALS ADDITIONAL INFORMATION SENT TO THEM SOME KEY POINTS FROM THE JANUARY 2007 FORT LAUDERDALE.doc CHARITIES STATEMENT CONCERNING NHS PLUS GUIDANCE DOCUMENTS
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