ME ASSOCIATION NEWSLETTER
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IMPORTANT STATEMENT FROM SAJID JAVID
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 The Rt. Honourable Sajid Javid, Secretary of State for Health and Social Care, made an important statement about ME/CFS on May 12 (International ME Awareness Day).
He officially recognised the severity of this condition and effect it can have on everyday activities and family life. Then he outlined plans to advance research and made a commitment towards additional funding, as well as establishing a programme of delivery across the UK of the 2021 NICE Clinical Guideline recommendations.
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THE NICE IMPLEMENTATION STATEMENT
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Paul Chrisp, Director of the Centre for Guidelines at The National Institute for Health and Care Excellence, outlined steps to be taken for the implementation of the improved 2021 NICE Clinical Guideline on ME/CFS.
This is an important statement because it directs health and social care funding bodies to support implementation across England, Northern Ireland, and Wales, and will underpin the ME Association’s efforts to improve existing ME/CFS specialist services or establish new services where none currently exist. We hope that clinical commissioning services in Scotland will follow suit.
Successfully implementing the recommendations will also see improvements in primary care especially in regard to recognition, understanding, early and accurate diagnosis, establishment and maintenance of care and support plans and with support.
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EARLY DAY MOTION FROM CAROL MONAGHAN, MP
 “That this House recognises 12 May 2022 as Myalgic Encephalomyelitis (ME) Awareness Day, which aims to highlight the impact this condition has on approximately 250,000 people across the UK; commends the endless dedication of campaigners and charities working to raise awareness of ME as a serious and debilitating neurological condition; welcomes the publication of the new National Institute for Health and Care Excellence guidelines on ME/CFS which has removed the recommendation of graded exercise therapy; looks forward to the full implementation of these guidelines as part of a complete overhaul of how ME services are planned and delivered; and calls on the Government to take urgent and significant steps to improve health and social care provision for people with ME.”
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| ALL-PARTY PARLIAMENTARY GROUP ON ME TO LAUNCH NEW REPORT |
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 The All-Party Parliamentary Group on ME have announced a reception on 25 May 2022 to launch their first report titled “Rethinking ME”. Carol Monaghan, MP, and Chair of the APPG said,
“At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.”
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ADDITIONAL FUNDING FOR THE ME/CFS BIOBANK
 The ME Association has single-handedly supported the operational costs of the ME/CFS Biobank at the London School of Hygiene & Tropical Medicine ever since it began in 2011. We believe it to be an essential project that provides biological samples and clinical data to scientists working on ME/CFS around the world and that is where The ME Association has single-handedly supported the operational costs of the ME/CFS Biobank at the London School of Hygiene & Tropical Medicine ever since it began in 2011. We believe it to be an essential project that provides biological samples and clinical data to scientists working on ME/CFS around the world.
This is the research that receives our Vegepa Club Donations.
This week we will be announcing additional funding of £175,000 to keep the Biobank running for another 2 years. This will bring our total investment to over £550,000. The goal has always been to support the Biobank until such time as it can become independent by selling samples and data to scientists outside of the Biobank in such quantities that the income supports future running costs.
The Biobank’s team of scientists will be announcing results from their important 8-year study of people with ME/CFS later in the year. This will be the first time that researchers have tracked patients over such a period monitoring biological samples and clinical data, and it should provide some fascinating insights.
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