ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile
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.

ID: 1229796750938058752

linkhttps://www.psp-me.co.uk/ calendar_today18-02-2020 15:56:19

417 Tweet

980 Followers

78 Following

Department of Health and Social Care (@dhscgovuk) 's Twitter Profile Photo

ME, or chronic fatigue syndrome, can be an incredibly disabling condition. Sajid Javid 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-…

ME/CFS Australia (@mecfsaustralia) 's Twitter Profile Photo

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 ME/CFS Priority Setting Partnership @NHMRC #MedTwitter #MEResearch

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
<a href="/PSPforMECFS/">ME/CFS Priority Setting Partnership</a> @NHMRC
#MedTwitter #MEResearch
ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile Photo

“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 Sajid Javid. #LearnFromME thetimes.co.uk/article/relati…

ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile Photo

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

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
Science for ME online forum (@s4me_info) 's Twitter Profile Photo

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 ME/CFS Priority Setting Partnership research priorities and to develop 'a delivery plan on ME/CFS'. #MEAwarenessHour questions-statements.parliament.uk/written-statem…

ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile Photo

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 (@pspformecfs) 's Twitter Profile Photo

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

ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile Photo

Glad to be able to say Sajid Javid 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

Sajid Javid (@sajidjavid) 's Twitter Profile Photo

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.

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.
Department of Health and Social Care (@dhscgovuk) 's Twitter Profile Photo

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. Lucy Chappell Sonya Chowdhury Action for ME

ME/CFS Priority Setting Partnership (@pspformecfs) 's Twitter Profile Photo

Pleased that two members of our steering group, Debbie Smith and Sonya Chowdhury, 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 Association (@meassociation) 's Twitter Profile Photo

Research priorities for #MECFS: the results of a James Lind Alliance priority setting exercise Members of the ME/CFS Priority Setting Partnership published a written paper explaining the process and how the priorities were identified. Read more: meassociation.org.uk/wzws #pwME #MyalgicE #Research