CrunchME @wecrunchme
Mapping the scientific, tech & advocacy ecosystem around #MECFS, #LongCovid, and other infection-associated chronic illnesses 🗺️ | Organised by @rorpreston crunchme.org United Kingdom Joined June 2023-
Tweets78
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Followers725
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Following35
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One important thing to do today before I fly off… Cards to Parliament @wecrunchme #DearMinister campaign for #MEAwarenessDay No doubt be in time for @sajidjavid 1st May session for #pwME #SevereME #HouseOfCommons too 💙✨💙✨💙✨💙✨💙✨💙
One important thing to do today before I fly off… Cards to Parliament @wecrunchme #DearMinister campaign for #MEAwarenessDay No doubt be in time for @sajidjavid 1st May session for #pwME #SevereME #HouseOfCommons too 💙✨💙✨💙✨💙✨💙✨💙 https://t.co/TMSfgCs4RR
A reminder that we have only a few days left - till 24th April - to make our voices heard by email on the need to include #MECFS & other #IACC in the #LongCovid Moonshot Proposal 🚀 This could trigger the biggest ever transformation in ME/CFS & IACC research. Email address &…
We've just started a new @wecrunchme database on Philanthropy & Foundations that have donated to #MECFS, #LongCovid and other #IACC 💸 We hope this will be useful when labs go for funding - and what to be aware which private sources are out there! crunchme.notion.site/Private-Philan…
Another look at the balance of research activity across the infection-associated chronic illness space ⚖️ In terms of publications mentioning each disease for the last full year of 2023 This is why I think initiatives like @U2Fight_World are so important - to create real unity…
A reminder on a day of action for #BringMillieHome We have created, and continue to update, a list of journalists, creators & media personalities covering #MECFS & #LongCovid from a biomedical standpoint Potentially useful for tagging! crunchme.notion.site/Journalists-Me…
We've just added the @polybioRF Spring Symposium to our calendar of scientific conferences on #MECFS, #LongCovid and other #IACC 🎤 crunchme.notion.site/fb6a1475795749…
More detail on @AlexBrown8120's projects with @wecrunchme: 1) We're aiming to extend the best current work on economic costs for #MECFS & #LongCovid to create country-by-country estimates, per person per year As a tool to help unlock fair funding levels globally 🗝️ 1/2
Very exciting to have our first healthy volunteer joining @wecrunchme - ahhhh the sweet sweet energy ⚡ Alex Brown is a data analyst, who previously worked at the data consultancy @JMANGroup. A couple of exciting projects lined up with her 💙 #MECFS #LongCovid
I've just been having a look at what the most viewed pages are on @wecrunchme, and they are...🥁 1. Clinical Trials 2. Legal Actions A good indicator of what the community really wants I wonder? 🤔 #MECFS #pwME #LongCovid #pwLC
@ahhrrr @wecrunchme also has an excellent tracker of trials for LC/ME. What they both highlight is just how lacklustre the UK trials are in comparison to Europe and US. All low risk; low reward. Its not good enough @VictoriaAtkins #longcovid
@maosbot These are ones I've heard about so far and noted down 👀
How many research groups focusing on infection-associated chronic illness, and where are they located? 🌎 A new graphic from @wecrunchme to help summarise our 'Research Groups' database: crunchme.notion.site/b42a3ebf606d42… Think we're missing something? Let us know! #MECFS #LongCovid
CrunchME @wecrunchme We have made images of the charts from the analysis of PubMed publications data for #MECFS & #LongCovid available in our Google Drive, for use by anyone in advocacy 📊 drive.google.com/drive/folders/… #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
An illustration of how the ME/CFS prevalence figure for England, provided by @GOVUK in their interim plan for tackling the disease, seems *much* too low, and not consistent with leading researchers 🧐 Even before the wave from Covid is accounted for 🦠 #MECFS #pwME #LongCovid
We have made images of the charts from the analysis of PubMed publications data for #MECFS & #LongCovid available in our Google Drive, for use by anyone in advocacy 📊 drive.google.com/drive/folders/…
Wanna know who's doing what in the world of #LongCovid & #MECFS? 🧐 Here are our databases, currently maintained my myself & @Michaeltikus 👇 Have an area you particularly care about? Please drop me a message & contribute! 🙏 crunchme.notion.site/CrunchME-bdad5…
An illustration of why a joint #LongCovid & #MECFS conference like @U2Fight_World is so important 👇 Only a tiny % of LC papers reference ME/CFS (c. 2.5%) - even tho we know a large % of LC meets the ME diagnostic criteria. Both can be accelerated 🚀 #UniteToFight2024
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Fran Haddock @franhaddock_
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Catherine Hale @octoberpoppy
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Becca @Bexypie
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Gaia Tempest 🦄🦼.. @GaiaTempestUK
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Nic McPaul @NicMcpaul
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Nicole Dowley 🇮�.. @nicoledowley
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ME/CFS News @MECFSNews
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Andrea Pring @Andrea_Pring
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Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
@TheChronicCollaborat.. @TheChronicColab
4K Followers 2K Following A resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality.
Sophie Boyd 💙🌈 @svmboyd
1K Followers 3K Following Head of user-centred design @DHSCgovuk. Mindfulness teacher. Loves growing plants & inclusive communities 🌱 #ActNow 🌍 she/her
Anna @halcionandon
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Illness Insights @IllnessInsights
20 Followers 67 Following My #personalblog about living with #chronicillness Including what I've learned about #selfawareness #wellness and #wellbeing
Rachel @rlcmdnyc
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wiredearp @wiredearp
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Angela @woollycat808
180 Followers 729 Following Local girl from O'ahu with a love of politics, animals, and the environment. Advocate for the rare disease, LGBTQ+, and chronic illness communities.
Sarah H @Sazzi91
2K Followers 5K Following creativity, baking👩🍳 tv 💻 podcasts 🎧 nature 🌷 chronically ill; M.E./CFS since 2002 🐌 🇪🇺 IG: @sazzi_crafts #MillionsMissing
Amy Rochlin @amyrochlin
855 Followers 2K Following Executive Director, @MetrodoraFdtn - Proudly working to advance progress for patients living with chronic, multisystem disorders. Opinions are my own.
Elly Bailey @ellbail
1K Followers 2K Following 🇵🇸 Welcome to the Recumbent Renaissance. Freedom’s just another word for nothing left to lose. Amor fati. Dercum’s/ME/longcovid. Remission Biome R50
Julie Sullivan @CureLongCovid
193 Followers 718 Following Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate, not argue 💕
Ripple Pictures @PicturesRipple
37 Followers 302 Following
Gro Mesna Andersen @MesnaG
533 Followers 480 Following Klarinettist, kulturskolelærer og mor til barn med ME. Twitrer nok mest om det siste.
Melissa Sargaison @honingtons
535 Followers 3K Following Specialist Physician ME/CFS & Fibromyalgia | Portfolio GP | hEDS Long Covid | SAS UCLH
KarenPhysioCoUk @karenphysiocouk
4K Followers 2K Following Neurological physiotherapist with https://t.co/3BfNtxTDCW working with conditions affecting brain, spinal cord and nervous system / Co-founder @PhysiosForME
Manu Bañuelos. @manubanuelos
181 Followers 613 Following #Covid19 #LongCovid #15march #longcovidawareness #covidpersistente #longcovidkids #covidisAirbone #enfermedadcronica #fibromialgia #MECFS #postviral #Salud.
Tina Rodwell #TeamPat.. @TinaRodwell1
3K Followers 3K Following They called us activists 🤦♀️ I wear that slanderous name calling with pride for all the #MEheroes out there Fighting for my #MEhero son #TeamPatient💚
Sarah @SarahLizzyLou
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Jessica Taylor-Bearma.. @jayletay
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Gregory Smith @postgresperf
376 Followers 69 Following #PostgreSQL startup founder @crunchydata, author, lapsed #planetpostgresql blogger. Family advocate for #MyalgicEncephalomyelitis #POTS #PwME #MEcfs patients.
Visible @visible_health
5K Followers 134 Following The activity tracking platform for illness, not fitness. #MECFS #LongCovid #invisibleillness
Alistair Forbes @alistairforbes
2K Followers 1K Following Founding Director and CEO @ScotTechArmy, global technology entrepreneur and executive, Angel Investor, Business Mentor.
Long X STEM Directory @LongXSTEM
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Noah MacCallum @noahmacca
759 Followers 2K Following Optimist and builder. I write about health, AI, and tech. Currently exploring what's next 🌈. Past: @EurekaHealthApp @goforward @Microsoft @Harvard @MIT
Ror Preston @RorPreston
2K Followers 555 Following Lead Data Scientist @visible_health 💙 | Organiser @wecrunchme 🗺️ | #MECFS since 2018 | Own Opinions
Eureka Health @EurekaHealthApp
4K Followers 212 Following We're on a mission to accelerate the discovery of new treatments and cures for chronic disease.
RTHM @RTHM_Health
4K Followers 3K Following RTHM connects you with a digital care team specializing in Long COVID and ME/CFS that provides access to a range of therapies based on the latest research.
Michael A Osborne @maosbot
33K Followers 1K Following Dad, spouse, Professor of Machine Learning @UniofOxford, Co-Founder Mind Foundry, Director @aims_oxford. Bayes, Long Covid, porridge, AI must be good for humans
Renegade Research @RenegadeRes
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David Joffe PhD, FRAC.. @DavidJoffe64
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Rae @Sunny_Rae1
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DecodeME the ME/CFS S.. @DecodeMEstudy
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Phi @phi_psd
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Patient-Led Research .. @patientled
27K Followers 615 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!One important thing to do today before I fly off… Cards to Parliament @wecrunchme #DearMinister campaign for #MEAwarenessDay No doubt be in time for @sajidjavid 1st May session for #pwME #SevereME #HouseOfCommons too 💙✨💙✨💙✨💙✨💙✨💙
Than you so much to @TheCanaryUK, @MrTopple and @h_sharland for picking up the @wecrunchme #DearMinister postcard campaign for #MEAwarenessDay on 12th May💙 We are calling for proper funding levels for biomedical research into #MECFS, and writing postcards to key government…
@RorPreston There is an app called Spoony launching soon for chronically sick, disabled and neurodivergent people. 🥹
@RorPreston @wecrunchme Absolutely brilliant 👌🏼 thank you for compiling and sharing 💙🙏🏼 💙
What could we as a community of #pwLC & #pwME do to encourage more researchers to study PEM? Maybe this is just me but I feel so many of our lives would be so much better w/o PEM (even if all the other symptoms remain). Would appreciate any thoughts on this. #LongCovid #MECFS
A reminder, or heads up, to people with #LongCovid who experience PEM (which is c. 50% or so)... The Long Covid research field as a whole is *not* currently representing you properly! Only 0.44% of papers mentioning LC last year also mentioned PEM (red) The fastest way to…
A very useful list of UK mps for #pwME and #LongCovid by @wecrunchme...👇✊️
@TheChronicColab @SeemaMalhotra1 @MEActNet @MEAssociation @actionforme @long_covid @InclusionLondon @LongCovidKids @LC_UK_Action @StripyLightCIC @MEActNetUK Fyi have added Seema to the @wecrunchme list of politicians expressing an interest in IACCs crunchme.notion.site/Politicians-In…
Remember to send your feedback on the Sanders’ bill for long COVID research by email to [email protected]. Right now pre-2020 ME/CFS is not included. Why not $1 billion for Long COVID-- AND-- $1 billion for ME/CFS?
@RorPreston @profmsharpe @findboundary @GeorgeMonbiot @ThosVarley @4Workwell @DrMark_Faghy @OxMEDiscovery @wecrunchme Sharpe doesn't care about coming up with testable falsifiable hypotheses or about #MECFS biomarkers. ME/CFS is blood banned in the UK and documented passing by blood transfusion. He could probably watch a healthy cell turn into a ME/CFS cell in the Nanoneedle and still not care.
@RorPreston @wecrunchme This is incredibly helpful Ror, thanks so much for sharing
@RorPreston @wecrunchme Hi Ror - please feel free to add @MetrodoraFdtn. We will be providing funding as well.
@amyrochlin @wecrunchme @MetrodoraFdtn You're already on there 😀
We've just started a new @wecrunchme database on Philanthropy & Foundations that have donated to #MECFS, #LongCovid and other #IACC 💸 We hope this will be useful when labs go for funding - and what to be aware which private sources are out there! crunchme.notion.site/Private-Philan…
@OxMEDiscovery Would love to know which foundation funded this if you're able to share? We're creating a philanthropy database in @wecrunchme to help labs get funding in #MECFS, #LongCovid, #Fibromyalgia etc!
@RorPreston @polybioRF @wecrunchme Thank you let me check it out
Another look at the balance of research activity across the infection-associated chronic illness space ⚖️ In terms of publications mentioning each disease for the last full year of 2023 This is why I think initiatives like @U2Fight_World are so important - to create real unity…
A milestone really worth celebrating: Over £10k now raised by @LCMEBillboards for billboards demanding treatments based on biomedical research + trials for #MECFS & #LongCovid 🥳 Huge kudos to @AaronCa11 & @AlexSprackland
A reminder, or heads up, to people with #LongCovid who experience PEM (which is c. 50% or so)... The Long Covid research field as a whole is *not* currently representing you properly! Only 0.44% of papers mentioning LC last year also mentioned PEM (red) The fastest way to…
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