ME/CFS Priority Setting Partnership

Led by patients, carers & clinicians, the ME/CFS Priority Setting Partnership will identify the top 10 research priorities to influence future research funding.

[ME/CFS Priority Setting Partnership @PSPforMECFS]

The Top 10+ #MECFS research priorities are here, and all of them call for biomedical research.

The next step must be major investment in high-quality research to create real change for people with #MyalgicEncephalomyelitis.

#WorldMEDay @DHSCgovuk
https://t.co/jOjuwDiVsA

[ME Association @MEAssociation]

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: https://t.co/g5gBufx9xL

#pwME #MyalgicE #Research

[ME/CFS Priority Setting Partnership @PSPforMECFS]

You can read about the Top Ten+ #MECFS research priorities being published and check out more info about our work on our website!

This resource will be maintained for future use by researchers, funders and others to help boost high-quality ME research.
https://t.co/acObchirlz

[ME/CFS Priority Setting Partnership @PSPforMECFS]

The Top Ten+ #MECFS Research Priorities are now published in a peer-reviewed journal!

This marks another important step in our work, and we hope to see this article well cited in future research funding applications.

#pwme @LindAlliance @actionforme

https://t.co/qEfKveg6pU

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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

[Department of Health and Social Care @DHSCgovuk]

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

[Department of Health and Social Care @DHSCgovuk]

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 @PSPforMECFS]

@JKsBlueWhisper Unfortunately we don't have this information; our project was UK based.

Suggest you contact @MEActNet or @PlzSolveCFS - both excellent information and advocacy organisations in the US.

Hope you find someone.

[PwME 4 bioMEdical research @ValeBodi]

The UK’s @PSPforMECFS Top 10+ #MEcfs research priorities selected by a group of #PwME: https://t.co/gN1IgnYxrJ #MillionsMissing from life and from #BioMEdicalResearch 👇🏻 @sajidjavid @SonyaChowdhury @actionforme @MEActNetUK @Invest_in_ME

[ME/CFS Australia @mecfsaustralia]

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: https://t.co/yGr5JVQJxo
Photo: Lea Aring
@PSPforMECFS @NHMRC
#MedTwitter #MEResearch

[Sajid Javid @sajidjavid]

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.

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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

[Sonya Chowdhury @SonyaChowdhury]

So great to be joined by ⁦@sajidjavid⁩ at the #MyalgicEncephalomyelits APPG report launch with ⁦@actionforme⁩ ⁦@MEAssociation⁩ ⁦@CMonaghanSNP⁩ Films of the speeches will be available soon

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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
https://t.co/3t8po6lqM8

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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

https://t.co/D4hPjFcpWX

[Science for ME online forum @s4me_info]

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

https://t.co/W3T66L5bin

[ME/CFS Priority Setting Partnership @PSPforMECFS]

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

[ME/CFS Priority Setting Partnership @PSPforMECFS]

“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
https://t.co/3JT0IP1EFO

[ME/CFS Priority Setting Partnership @PSPforMECFS]

Fantastic to see our report mentioned. "Defining Future ME/CFS Research" lays out the Top 10+ #MyalgicEncephalomyelitis research priorities and will be a key focus for the government as it develops a delivery plan for ME.
#WorldMEDay #LearnFromME
https://t.co/0yuFxBmDeS

[ME/CFS Priority Setting Partnership @PSPforMECFS]

Articles like this on statements made by the highest health official in our country are a true glimmer of hope for changing cultural attitudes toward #MyalgicEncephalomyelitis, and utterly deserved by a community that has fought so hard for change.
https://t.co/MKbZtdiO7y

[James Lind Alliance @LindAlliance]

It has been a privilege for the JLA to work with the ME/CFS community on this. Congratulations on the launch of the results

[Department of Health and Social Care @DHSCgovuk]

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

https://t.co/gCQtV9eFRU