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ME/CFS Priority Setting Partnership
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{{NeedsImage}} The '''ME/CFS Priority Setting Partnership''' or '''ME/CFS PSP''' is a [[UK|United Kingdom]] research initiative to engage [[ME/CFS]] patients in collaboratively deciding research priorities.<ref name="website">{{Cite web|url=https://www.psp-me.co.uk/ | title = Prioritise ME|website=ME/CFS Priority Setting Partnership|language=en-GB|access-date=2021-11-07}}</ref> ==Top 10+ Priorities == The following research priorities were identified and published in May 2022: :1. What is the [[Myalgic_encephalomyelitis#Pathophysiology|biological mechanism]] that causes [[post-exertional malaise]] (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed? :2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as [[low dose naltrexone]], or drugs used to treat [[Postural orthostatic tachycardia syndrome|Postural Orthostatic Tachycardia Syndrome]] (POTS)? :3. How can an accurate and reliable [[diagnostic biomarker|diagnostic test]] be developed for ME/CFS? :4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an [[autoimmune disease|autoimmune condition]]? :5. Are there [[different types of ME/CFS]] linked to [[:Category:Triggers and risk factors|different causes]] and/or how [[severe and very severe ME|severe]] it becomes? Do different types of ME/CFS need different treatments and/or have [[Prognosis_for_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome#Predictors_of_outcome|different chances of recovery]]? :6. Why do some people develop ME/CFS following an [[infection]]? Is there a link with [[Long COVID|long-COVID]]? :7. What causes the [[central nervous system|central]] and [[peripheral nervous system]]s (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments? :8. Is there a [[Genetics of chronic fatigue syndrome|genetic link to ME/CFS]]? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments? :9. What causes ME/CFS to become [[severe and very severe ME|severe]]? :10. How are [[mitochondria]], responsible for the body's energy production, affected in ME/CFS? Could this understanding lead to new treatments? ::10+. Does poor delivery or use of [[oxygen]] within the body cause ME/CFS symptoms? If so, how is this best treated?<ref name="Top10">{{Cite web|url=https://psp-me.co.uk/explore-the-top-10 | title = ME/CFS Top 10+ Priorities|website=ME/CFS Priority Setting Partnership | date = May 2022|access-date=May 16, 2022}}</ref> ==Deciding research priorities == Patients helped decide research priorities by: * online survey * paper form, after contacting the email address or phone number * people with visual impairment can request a large print form<ref name="takepart">{{Cite web|url=https://www.psp-me.co.uk/take-part/ | title = Take part|website=ME/CFS Priority Setting Partnership|language=en-GB|access-date=2021-11-07}}</ref> The process was faciltated by the James Lind Alliance, based on participant by three key UK groups: * ME/CFS patients * Carers of ME/CFS patients * Health professionals working in the ME/CFS field<ref name="FAQ">{{Cite web|access-date=May 16, 2022|url=https://psp-me.co.uk/faqs/ | title = Frequently Asked Questions|last = ME/CFS Priority Setting Partnership|website=ME/CFS Priority Setting Partnership}}</ref><ref name="FinalReport2022"/> ==Notable people== ===Organisation Representatives=== * [[Sonya Chowdhury]], PSP Lead, Chief Executive of [[Action for ME|Action for M.E.]] * [[Russell Fleming]], [[Forward-ME]] * [[Debbie Smith]], [[Science for ME]] Forum * Representatives from the ME Research Collaborative Patient Advisory Group: ** [[Adrian Baldwin]] ** [[Rachel Ephgrave]] ** [[Simon Everitt]] ** [[Gemma Hoyes]] ** [[Susan O’Shea]] ** [[Opal Webster-Philp]] ===Patient Representatives=== * [[Annette Barclay]] * Dr [[Monica Bolton]] * [[Sian Leary]] * Dr [[Ben Marsh]] ===Carer Representatives=== * [[Rachel Elliott]] * [[Mike Emmans Dean]] * [[Ann West]] ===Health and Care Professional Representatives=== * [[Tina Betts]] * [[Joan Crawford]] * Professor [[Vinod Patel]] and proxy [[Helen Baxter]] * Professor [[Sarah Tyson]] ===James Lind Alliance Advisors and Specialists=== * Toto Gronlund, JLA Facilitator * Beccy Maeso, JLA Team * Kristina Staley, Information Specialist * Caroline Whiting, JLA Team ===Coordinators=== * [[Claire Dransfield]], Action for ME * [[Sam Bromiley]] (previously Action for ME)<ref name="FinalReport2022">{{Cite web | date = May 2022|url=https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/downloads/Defining-future-ME-CFS-research-The-ME-CFS-Priority-Setting-Partnership.pdf | title=Defining future ME/CFS research {{!}} final report|last = ME/CFS Priority Setting Partnership|website=James Lind Alliance}}</ref>{{Rp|22}} ==Notable publications== *May 2022, [https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/downloads/Defining-future-ME-CFS-research-The-ME-CFS-Priority-Setting-Partnership.pdf Defining future ME/CFS research (final report)] ==Funding== The funding was provided by the UK's [[National Institute for Health Research]], the Scottish Government Chief Scientist Office and the [[Medical Research Council]] to [[Action for ME]] for "administrative, communications and coordination support", and facilitated by James Lind Allianc, a non-profit organisation.<ref name="FAQ"/> ==Contact details == Email: questions@psp-me.co.uk<br> Phone: <nowiki>0117 927 9551</nowiki> ==Online presence== *[https://twitter.com/PSPforMECFS Twitter] * Facebook *[http://www.psp-me.co.uk/ Website] * YouTube ==See also== *[[United Kingdom]] ==Learn more== *[http://www.psp-me.co.uk/ ME/CFS Priority Setting Partnership] *[https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/top-10-priorities.htm Top 10+ Priorities] - James Lind Alliance ==References== {{Reflist}} [[Category:Research initiatives]] [[Category:British research initiatives]]
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