ME/CFS Priority Setting Partnership @PSPforMECFS
Led by patients, carers & clinicians, the ME/CFS Priority Setting Partnership will identify the top 10 research priorities to influence future research funding. psp-me.co.uk UK Joined February 2020-
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ME/CFS Priority Setting Partnership retweeted
Research priorities for #MECFS: the results of a James Lind Alliance priority setting exercise Members of the @PSPforMECFS published a written paper explaining the process and how the priorities were identified. Read more: meassociation.org.uk/wzws #pwME #MyalgicE #Research
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Presenting the power of involvement of people with lived experience in @PSPforMECFS and @DecodeMEstudy at the #MECFS genetics research summit today being run by @actionforme @SonyaChowdhury @CGATist Great presentation from @SianGotME
Pleased that two members of our steering group, Debbie Smith and @SonyaChowdhury, were able to present the Top 10+ #MyalgicEncephalomyelitis research priorities at this roundtable. Members of our steering group will continue to engage with government at the highest levels. #pwme
Pleased that two members of our steering group, Debbie Smith and @SonyaChowdhury, were able to present the Top 10+ #MyalgicEncephalomyelitis research priorities at this roundtable. Members of our steering group will continue to engage with government at the highest levels. #pwme
ME/CFS Priority Setting Partnership retweeted
ME (chronic fatigue syndrome) affects at least 250,000 people in the UK & can be a debilitating condition. @sajidjavid recently met experts & charities to discuss how we support biomedical research to improve understanding of ME/CFS. @LucyChappell2 @SonyaChowdhury @actionforme
ME/CFS Priority Setting Partnership retweeted
The UK’s @PSPforMECFS Top 10+ #MEcfs research priorities selected by a group of #PwME: psp-me.co.uk #MillionsMissing from life and from #BioMEdicalResearch 👇🏻 @sajidjavid @SonyaChowdhury @actionforme @MEActNetUK @Invest_in_ME
ME/CFS Priority Setting Partnership retweeted
We welcome UK's 'Defining future ME/CFS research' report. Wide consultation to identify Top 10+ Research Priorities gives confidence that final priorities reflect urgent needs of #pwME UK report: psp-me.co.uk Photo: Lea Aring @PSPforMECFS @nhmrc #MedTwitter #MEResearch
ME/CFS Priority Setting Partnership retweeted
Yesterday I spoke at the launch of the APPG on ME's new report. We must improve the lives of people with ME - I’ve seen the devastating impact it can have. For too long it hasn’t received enough attention which is why I will develop a cross-govt plan to improve outcomes.
Glad to be able to say @sajidjavid left this report launch with a copy of the Top 10+ ME Research Priorities in his hands too. With the new NICE guidelines on ME, our Top 10+ Report and now the Rethinking ME report there is an incredible impetus for change. #MEAwarenessHour
Glad to be able to say @sajidjavid left this report launch with a copy of the Top 10+ ME Research Priorities in his hands too. With the new NICE guidelines on ME, our Top 10+ Report and now the Rethinking ME report there is an incredible impetus for change. #MEAwarenessHour
Our Top 10+ Priorities will be present at the All-Party Parliamentary Group on ME report launch tomorrow. We hope these two reports will complement each other, and support our community in leading forward a new era of research into #MyalgicE. #APPG4ME appgme.co.uk
We've looked at why each of the Top 10+ #MECFS research priorities matters, to give public health officials, researchers and others a quick insight into the choices of the ME community. Check them out this #MEAwarenessHour #MyalgicEncephalomyelitis psp-me.co.uk/explore-the-to…
ME/CFS Priority Setting Partnership retweeted
Last week, the UK's Secretary of State for Health and Social Care, Sajid Javid, issued a statement, recognising the impact of #MECFS, pledging to support the @PSPforMECFS research priorities and to develop 'a delivery plan on ME/CFS'. #MEAwarenessHour questions-statements.parliament.uk/written-statem…
Our report Defining Future ME/CFS Research is aimed at changing the research landscape for people with ME in the UK, finally putting the community's voice centre stage. We'll be taking this report to various events and ensuring it remains central to future plans. #LearnFromME
“Not enough is known [about ME] and without better understanding those living with the condition miss out on vital treatment and support. I am determined that we lead the way in this area.” Yet more important statements from @sajidjavid. #LearnFromME thetimes.co.uk/article/relati…
ME/CFS Priority Setting Partnership retweeted
ME/CFS Priority Setting Partnership retweeted
It has been a privilege for the JLA to work with the ME/CFS community on this. Congratulations on the launch of the results
It has been a privilege for the JLA to work with the ME/CFS community on this. Congratulations on the launch of the results
ME/CFS Priority Setting Partnership retweeted
ME, or chronic fatigue syndrome, can be an incredibly disabling condition. @sajidjavid today announced his commitment to develop a delivery plan on how we can improve experiences and outcomes for people living with the condition. #MEAwarenessWeek2022 thetimes.co.uk/article/sajid-…
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