Last week was ME/CFS and Fibromyalgia Awareness Week; an opportunity to raise awareness of the illness and call for action. We hosted a wonderful picnic in the Sheffield Peace Gardens - it was lovely to see so many of you there and to meet new members. We were particularly lucky with the weather! At the Royal Hallamshire Hospital, we had an information stall and spoke to many healthcare professionals and members of the public about the conditions. We signposted the healthcare professionals to our new website page with resources especially aimed at them, with info on care and treatment, further training and research. Head to the link in our bio 🔗 And on social media, we shared information and campaigns from other charities and projects to help amplify their voices during the week. We wanted to say thank you to everyone who took part, in whatever way, during the week. We know it takes a huge amount of energy, focus and persistence to share your experience or advocate for others. Many of the voices we heard during the week either have the conditions themselves or care for loved ones who do. We see you. We hear you. And we thank you. But we are also very aware that the realities of these conditions mean that many cannot take part, so we understand the importance of advocating on your behalf. Our work doesn’t stop just because the week is over. Together we can raise our voices, be heard and call for action. Hashtags: #pwME #pwFibromyalgia #GlobalVoiceForME #WorldMEDay #MEFibromyalgiaAwarenessDay #MEAwarenessDay #FibromyalgiaAwarenessDay
🚨 We have issued a statement on our website following the Government’s announcement of a general election. “We are aware the general election causes concern for many people within the ME community in relation to the progress of the Delivery Plan. We have been assured on numerous occasions that the Plan holds cross-party support and expect work to continue as planned […]” 🔗 You can read the full statement in the 'News' section of our website (link in bio). #pwME #MECFS #MyalgicE
Nederlandse Hersenbank voor ME/CVS Eén van de 6 projecten vanuit het NMCB consortium, die zich bezighouden met biomedisch onderzoek naar ME/CVS, is de Nederlandse Hersenbank voor ME/CVS (NHB-ME/CVS). Dit is een nieuw donorprogramma specifiek voor ME/CVS, met als doel hersenweefsel te verzamelen en beschikbaar te maken voor onderzoekers wereldwijd. Daarom roept de Nederlandse Hersenbank mensen met ME/CVS op om aandacht te besteden aan de mogelijkheid om zich te registreren als hersendonor. Momenteel zijn bij de Nederlandse Hersenbank al 20 mensen met ME/CVS geregistreerd. Om goed onderzoek mogelijk te maken, moeten dat er een stuk meer worden. Alle informatie vind je op de website van de Nederlandse Hersenbank. Link in Bio #mecvs #biobank #hersenbank #NMCB #NMCBconsortium #MEcvsonderzoek #MEcvsVereniging #MeCvsVereniging #pwme #MEcvs
@roslemarchand DAY 22 - SO MUCH TIME When you become ill with a chronic illness like M.E. everything changes. All previous activities are curtailed or stop completely. Now you have all this time. You have time to reflect and start to appreciate and value your life and all around you. Has that been the case for you? #MyalgicEncephalomyelitis #MEAwareness #MECFS #pwME #MillionsMissing #MEWarriors #SevereME #VerySevereME #MEawarenessmonth Creator @roslemarchand
“The tiredness of M.E. or Chronic Fatigue Syndrome is so different to normal tiredness. We all say “I’m so tired”. No you’re not because you are still standing. The tiredness of M.E. is so different because it doesn’t get better when you rest. It is tiredness through your bones. It is such a profound weariness. It’s not due to muscle weakness. It is not loss of motivation or pleasure such as you get in people who are depressed. It is just exhaustion to your bones.” Quote Credit: Sarah Jarvis #CanYouSeeMeNow #youarenotalone #pwME #MyalgicEncephalomyelitis #MECFS #mecfsalonetogether #MillionsMissing #MillionsMore #youdontlooksick #mecfswarrior #LongCovid
DAY 23 - STRUGGLE People with M.E. are not really living but rather they are just surviving. Each day is a struggle. We have to pace and rest in order to do the bare essentials in life. There is little or no energy for anything else. #MyalgicEncephalomyelitis #MEAwareness #pwME #MEWarriors #mecfs #MillionsMissing #SevereME #VerySevereME #MEawarenessmonth
De Nederlandse Hersenbank start een hersendonor programma voor ME/CVS om hersenweefsel voor onderzoek naar ME/CVS beschikbaar te maken. Dankzij een ZonMW-subsidie is het Nederlands ME/CVS Cohort en Biobank-consortium (NMCB) opgestart. In dit consortium gaan zes projecten zich bezig houden met biomedisch onderzoek naar ME/CVS. Eén van deze projecten is de Nederlandse Hersenbank voor ME/CVS (NHB-ME/CVS): een nieuw donorprogramma specifiek voor ME/CVS met als doel dit weefsel te gaan verzamelen en beschikbaar te maken voor onderzoekers wereldwijd. Daarom roept de Nederlandse Hersenbank mensen met ME/CVS op om aandacht te besteden aan de mogelijkheid om zich te registreren als hersendonor. Momenteel zijn bij de Nederlandse Hersenbank 20 mensen met ME/CVS geregistreerd. Om goed onderzoek mogelijk te maken, moeten dat er een stuk meer worden. Onderzoek met menselijk weefsel vormt namelijk een van de meest effectieve methoden om ziekteprocessen te bestuderen en te begrijpen, omdat in dit weefsel de veranderingen in cellen en moleculen gezien kunnen worden. De afgelopen jaren zijn onderzoekstechnieken steeds verder ontwikkeld, waardoor er steeds beter en nauwkeuriger ingezoomd kan worden op dit weefsel. Het identificeren van wat er verandert en misgaat, brengt de wetenschap een stap dichter bij voorkomen of herstel. Het hele artikel kan je lezen via de link in onze bio onder het kopje "laatste nieuws". Hier vind je ook meer informatie over donorschap. ID: een nieuwsitem met de titel "Nederlandse Hersenbank start donorprogramma voor ME/CVS. In het midden staat een illustratie van twee "doorschijnende" silhouetten die elkaar aankijken. Hun hersenen zijn felgekleurd en duidelijk zichtbaar. Daaronder staat de titel.
May is Myalgic Encephalomyelitis Awareness Month. Artist Katie shares her passion for art and her journey living with ME and how it has impacted her life. "I have had severe ME for 11 months now, I spend most of my days in bed doing art. A pastime that I love. This piece of art is called “Blue Society” It represents the people struggling with ME/CFS. The ones that are trying to break through, the ones that are learning the hard lessons, The ones that manage to find solace in a bed-bound hobby, The ones that follow all the rules and paths, the ones that can now find joy in the smallest of things. They are all still battling every day". "This Piece is called “Blue Society under the Microscope.” Most people don’t want to be put under the Microscope, the Blue Society does. study us, research our symptoms, advocate for us, support us, HELP US!" Check out Katie's art on Instagram: @ktjsee #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay
ICYMI: 📖 Something’s Wrong with Micah by Jamison Hill Special Offer: May 20 - May 27 For every book sold this week, $1 will be donated to OMF! About the Book: "In the wake of a devastating car accident, sixteen-year-old Micah Hunter's world begins to unravel. A mysterious illness leaves him unable to pursue the football dreams that he once shared with his father. At the peak of his illness, Micah bumps his wheelchair into Evie Thompson, a headstrong fifteen-year-old living with her own challenges. Coming of age and coming to terms with their disabilities, Micah and Evie find solace and companionship in each other. As their connection deepens, Evie helps Micah discover the truth about his illness, allowing him to reconnect with his past. But, in doing so, Micah fails to discover Evie’s deteriorating health, which she keeps hidden. When Micah finally realizes the gravity of her situation, he must make the most difficult decision of his life: get Evie the help she needs or respect her wishes and risk losing her forever." Discover more about Jamison Hill and his journey, including his diagnosis of ME/CFS 👉 jamisonwrites.com Available for purchase on Amazon, Audible, Spotify, and more! 🌟 Grab your copy now and support a great cause! 🌟 #MayMomentum #BookPromotion #JamisonHill #SomethingWrongWithMicah #OMF #BookLovers #MustRead #pwME #mecfs
ICYMI: 📖 Something’s Wrong with Micah by Jamison Hill Special Offer: May 20 - May 27 For every book sold this week, $1 will be donated to OMF! About the Book: "In the wake of a devastating car accident, sixteen-year-old Micah Hunter's world begins to unravel. A mysterious illness leaves him unable to pursue the football dreams that he once shared with his father. At the peak of his illness, Micah bumps his wheelchair into Evie Thompson, a headstrong fifteen-year-old living with her own challenges. Coming of age and coming to terms with their disabilities, Micah and Evie find solace and companionship in each other. As their connection deepens, Evie helps Micah discover the truth about his illness, allowing him to reconnect with his past. But, in doing so, Micah fails to discover Evie’s deteriorating health, which she keeps hidden. When Micah finally realizes the gravity of her situation, he must make the most difficult decision of his life: get Evie the help she needs or respect her wishes and risk losing her forever." Discover more about Jamison Hill and his journey, including his diagnosis of ME/CFS 👉 jamisonwrites.com Available for purchase on Amazon, Audible, Spotify, and more! 🌟 Grab your copy now and support a great cause! 🌟 #MayMomentum #BookPromotion #JamisonHill #SomethingWrongWithMicah #OMF #BookLovers #MustRead #pwME #mecfs
(Clickable link in bio [doras]) Thanks very much to Therese Regan @therese_regan who is taking part in the upcoming VHI Mini Marathon for us. She looks like she’ll be the only participant who will be raising money for us. People can support her here: https://www.idonate.ie/fundraiser/ThereseRegan (Clickable link in bio [doras])
#MEAction is honored to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive, with you by author Lauren Saikkonen! This book is an autobiography that covers Lauren’s entire life, but heavily focuses on her battle with Ehlers-Danlos syndrome, ME, and fibromyalgia. @Laurensaikk has graciously offered to donate a portion of her proceeds to #MEAction for all books purchased from now until May 30th! Please check out an interview with Lauren here: https://www.meaction.net/2024/04/29/interview-with-lauren-saikkonen-author-of-invisible-illness-coming-of-age-chronic-illness-and-a-mothers-will-to-survive/ Link also in our bio. Here is a sneak a little snippet: What made you decide to write this book? "I started a blog documenting the ordeal with my health on and off since 2012 that I always dreamt of turning into a book . I met soon-to-be famous author Stephanie Land at a Millions Missing event in Washington D.C. in 2016. I read Maid when she published it in 2020, it was about a mother overcoming tremendous adversity. Her book, and subsequent Netflix series made me think, 'I have an incredible story, why not me?' I decided to pull the trigger on my dream of writing my own book." On writing as a form of activism: "I was very involved in ME activism from 2015-2022, until my health spiraled out of control. I went to D.C multiple times for #MillionsMissing, and Lobbying Day, and any other ME events and actions that came up. When my health deteriorated after my crisis in 2022, I saw writing my book as a work of activism. And the hardest one at that." A huge thank you to Lauren for donating a portion of her proceeds to #MEAction! #PwME #MyalgicEncephalomyelitis #MECFS #author #Book ID: Graphic with two photos. Text: Interview with author Lauren Saikkonen. Lauren Saikkonen shares her story in her new book Invisible Illness: Coming of Age, Chronic Illness, and a Mother's Will to Survive. A portion of proceeds will be donated to #MEAction for books sold this May. Top left photo: book cover with photos of shoes at #MillionsMissing. Bottom right photo: Lauren smiling at a table with a mug wearing red shirt.
🌟 Join us in celebrating the incredible work of Kim Eggers and Andrew Gifford, two remarkable supporters of OMFCA! Their tireless efforts to raise awareness and understanding of #ME/CFS are truly inspiring. Let's take a closer look at their impactful contributions 👉 link in bio. 👩💻 Meet Kim Eggers: Kim Eggers has had ME for 34 years, and as such, is passionate about the mysteries of the disease being solved. She keeps busy writing for medical systems-type sites, working as a patient advocate with her provincial health care system, and enjoying the beautiful outdoors where she lives in northern Canada. Kim shares her visceral experience with ME/CFS through a powerful metaphor: the impact of a car crash. 📸 Discover Andrew Gifford's Photography Project: Inspired by Whitney Dafoe's moving photography, Andrew wanted to see how far he could go with #photography to represent the insidious nature of ME/CFS in ways that are relatable for people unfamiliar with the condition. ❣️Time is Running Out to Have Your Donation Matched! In the final days of our annual May Momentum campaign, we are calling on you for your support. Donate before May Momentum ends on May 31! Double Your Impact 👉 link in bio. Thank you for your support 💙 #pwME #mecfsawareness #MayMomentum
🌟 Join us in celebrating the incredible work of Kim Eggers and Andrew Gifford, two remarkable supporters of OMF! Their tireless efforts to raise awareness and understanding of #MECFS are truly inspiring. Let's take a closer look at their impactful contributions 👉 link in bio. 👩💻 Meet Kim Eggers: Kim Eggers has had ME/CFS for 34 years, and as such, is passionate about the mysteries of the disease being solved. She keeps busy writing for medical systems-type sites, working as a patient advocate with her provincial health care system, and enjoying the beautiful outdoors where she lives in northern Canada. Kim shares her visceral experience with ME/CFS through a powerful metaphor: the impact of a car crash. 📸 Discover Andrew Gifford's Photography Project: Inspired by Whitney Dafoe's moving photography, Andrew wanted to see how far he could go with #photography to represent the insidious nature of ME/CFS in ways that are relatable for people unfamiliar with the condition. ❣️In the final days of our annual May Momentum campaign, we are calling on you for your support. Your donation, of any amount, moves us closer to treatments and a cure. Donate before May Momentum ends on May 31! 👉 link in bio. Thank you for your support 💙 #pwME #mecfsawareness #MayMomentum
Wild Columbine is the newest native plant introduced to the garden this year and will bring added colour from late spring to early summer. Mid summer the seeds can be harvested and spread to other parts of the garden. #nativeplantgarden #nativeplantgardening #nativeplantsontario #nativeplants #gardening #gardeninglife #disabledgardener #disabledoutdoors #inclusiveoutdoors #myalgicencephalomyelitis #mecfs #pwme #sdit #servicedogintraining Image Description - Picture One: a tan, auburn, and white shaggy dog is standing on cobblestones to the left of a garden. The garden is filled with green plants and to the right of the dog is a plant with red and yellow flowers. Behind him are some purple flowers. On the ground in the garden is a blue rabbit figure. There is a brown fence beside the garden. The sun is shining and casting some shadow on the fence. Image Description - Picture Two: In the foreground is a flower with five red tubular spurs, yellow petals, and yellow stamens hanging below the petals. There are water droplets of the flower. There is another of the same flower in the lower right corner of the image. Behind the flower is vegetation is various stages of green.
21st May • A fluffy little fledgling blue tit ☺️ #EmbroideryDiary #EmbroideryJournal #Glimmers #pwME
🎙️ Learn about ME & occupational therapy podcast. In the latest Learn about ME podcast, we discuss how Occupational Therapy can support people living with Long Covid and ME/CFS with pacing, taking a person-centred approach. Our guests on this episode include Kate Davies, Occupational Therapy Team Lead in NHS Grampian; and Corrine, a patient with Long Covid. You can find a link to the Learn about ME podcast series in our Linktree, found in our bio. #pwME #MECFS #MyalgicE #LongCovid #LearnAboutME
Welcome to all our new followers who have found us via #MillionsMissing #TeachMETreatME! We want to keep in touch! You can subscribe to receive emails here: https://www.meaction.net/subscribe/ You can find us on most social media (Facebook, Twitter/x, Instagram, TikTok, YouTube, & BlueSky at @ meactnet. LinkedIn is the outlier at #MEAction. Make sure to hit like and follow! #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid ID 1: Simple graphic with white background and red accents. Text: "Sign up for emails from #MEAction www.meaction.net/subscribe" ID2: Social media apps shown by their logos with an arrow to the tag MEAction uses. All apps are @meactnet except for LinkedIn which is #MEAction.
🌀Myalgic Encephalomyelitis🌀 I’ve been debating for months since my relapse whether to document my journey with M.E online. I’ve been hesitant because I don’t want to seem negative or that I’m complaining! But my life is dominated by my M.E now every literal step I take or conversation I attempt I have to bare my M.E in mind & how it will effect me. It rules my life and not everyone realises to what extent. I don’t want M.E to silent me, which is ironic as one of my symptoms that flares up regularly is an inability to talk or remember words. I’m also hoping that through writing about my M.E that I can start making some sort of sense to it. *Photo is of me on a good day wandering around the beautiful Mount Stuart House on the Isle of Bute with my love. 🏴 #pwme #meawareness #meassociation #myalgicencephalomyelitis #mecfslife #pem
(Clickable link available via Doras in bio) From ABC (Australia): “Parents of son with #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome want more research into disease” https://www.abc.net.au/news/2024-03-18/myalgic-encephalomyelitis-chronic-fatigue-syndrome-research/103521080 (Clickable link available via Doras in bio) Also involves EMERGE Australia CEO & medical adviser
Ten years ago today I got the best news I’d ever had, I was offered a job at Port Lockroy in Antarctica, aka the ‘Penguin Post Office’. I was supposed to spend four months, from November 2014 to March 2015, living on a tiny island in Antarctica with three colleagues and thousands of penguins, but I got ME and had to withdraw from the team. It remains one of my greatest losses to this disease. First photo: My copy of the Port Lockroy Operations Manual. The photo on the front is of Bransfield House, the restored original station building, which houses a museum, post office and shop, built in 1944. Staff live/sleep in a modern reproduction of a Nissen hut, located on the site of the original Nissen hut from 1944. Second photo: Taken the day before I got my good news, at the end of the two day selection process at Mepal Outdoor Centre in Cambridgeshire. That’s me second from the left, being terrible at jumping/performing for a camera! #MyalgicEncephalomyelitis #PwME #ChronicIllness #Disability #MEAwarenessMonth #PortLockroy #GoudierIsland #AntarcticPeninsula #Antarctica
A different format for this month because unfortunately, my symptoms and abilities are the same as month 6 (see my previous post for more). Month 7 has been difficult. Especially as I was let go of my job on medical grounds. A job I loved and was doing well in. I’ve had some real lows with my mood and some new symptoms to manage such as TMJ pain. I know that my body is doing its best (I think!) so I have to be patient. #mecfs #postviralfatigue #postviralfatiguesyndrome #chronicillness #chronicillnesssupport #longcovidrecovery #longcovid #longcovidhauler #pwme #chronicfatigue #fatigue
Embroidery commission Work has begun on this embroidered monogram, I do love the bright colours of the embroidery thread against the natural linen. I'll begin work on the Violets next. #violets #floralembroidery #monogramembroidery #j #linen #embroiderydesign #pwme #babygift #jessica #threads #craftymissb #commission Image: close up of embroidery, work in progress, leaves and a name, on linen. You can see pencil outline of the design.
🚨 ‘Inquiry to begin into DWP’s treatment of ill & disabled people on benefits’ Britain’s human rights watchdog is formally investigating the DWP over its treatment of chronically ill and disabled people. The inquiry will focus on health checks that assess individuals’ eligibility for disability benefits such as PIP and ‘fit for work’ tests that qualify claimants for the disability elements of universal credit. On the inquiry, James Taylor, Executive Director of Strategy, Impact & Social Change at Scope, said: “Our welfare system should be a safety net, built on kindness and trust, where disabled people can access support. Instead, many disabled people have to fight for even basic support.” 🔗 A link to the full article can be found in the 'News' section of our website (link in bio). #pwME #MECFS #MyalgicE #PIP #DWP
We have loved seeing the ME community come together for #BlueSunday2024 to raise funds for ME charities across the world! Margaret, who is pictured, got in touch with Action for M.E. to share a photo of her joining the #TeaPartyForME2024. We are so incredibly thankful to everyone who joined, shared, fundraised or donated on Blue Sunday to help us raise vital funds for people with ME 💙 #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #LivingWithME
Graphic: Claire Tripp Day 22 #MEawerenessmonth #MEWishes #Ajourneythroughthefog #pwME #MyalgicE #LongCovid #LongHaulers #PACS #PSAC #MEcfs #MedEd #MillionsMissing #MillionsMore #YouAreNotAlone
Image is a screenshot of a X post. Post content is below. 'Just said to my Dad - 'I have a lot of brain work to do today, but I don't know if my brain is up to it'. No meetings/appointments/other reasons to leave the house today so laptop work from BED is in my future.' #pwME #MEcfs
Blue Tea for ME - #BlueTea4ME Join us in fundraising to support people in New Zealand living with myalgic encephalomyelitis. May 12th is ME Awareness Day, and we're rallying together to spread awareness for ME/CFS throughout the entire month! Join us for #BlueTea4ME and make a difference in the lives of those battling this condition. The first 50 donations above $25 will receive an exclusive Blue Tea for ME pack. sponsored by: @kisstheearthnz To make a donation: https://mebop.infoodle.com/form_process?g=94442f8c-9292-452a-8b17-f9e4efc2ec4b Thank you for your support. @theslowlane.me #WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzlongcovid #towardswellness #mecfsawareness #longcovidkids #longcovidsupport #longcovid #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay #InternationalMEAwarenessMonth #LearnFromME #missingmillions #MECFS, #EMSFC, #MECVS
Latergram of my very modest #bluesunday2024. This was my first year recognising this wonderful day. I didn’t have the capacity to do much else than make a cuppa with by blueberry waffles for breakfast. I am grateful for Anna @theslowlane.me for creating this #TeaPartyForME. I am hopeful for the future and humbled to have shared in this day with this beautiful community. My heart and spirit are continuously with all of us around the world living with M.E., especially those who are severe and very severe. ID: Photo 1- an overhead shot of a blue floral patterned plate with blueberry waffles on it, and a blue mug filled with tea and milk. Photo 2- A close up of the teabag steeping in the blue mug, the tea bag tag reads “Drink Life In”. • #bluesunday #teapartyforme2024 #pwme #mecfs #mecfsawareness #meawareness #meawarenessmonth
April’s Monthly Member’s Topic was: Nationwide Health & Disability Advocacy. A guest speaker from the Nationwide Health and Disability Advocacy Services joined our monthly meeting. They spoke about their services and how our members can access them. Together, we aim to empower and support each other in navigating the challenges and opportunities in the healthcare and disability advocacy landscape. Every month CCI Support shares parts of our award winning “Towards Wellness Programme” as part of our monthly educational topic. Information and resources are shared in our private Facebook group, discussed at our monthly members’ meetings and also posted in our members' only section of our website. Members are able to learn, discuss and ask questions in a safe and caring environment. CCI Support's “Towards Wellness Programme” & services are endorsed by Doctor Ros Vallings & Emeritus Professor Warren Tate. For more information: www.ccisupport.org.nz/towards-wellness-programme/ #WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzfibro #nzfibromyalgia #nzlongcovid #pots #dysautonomiaawareness #dysautomnia #towardswellness #mecfsawareness #longcovidkids #potssyndrome #longcovidsupport #fibromyalgiaawareness #fibromialgia #fibro #fibromyalgia #longcovid
(Clickable link available via Doras in bio) The slides are now available for the 5 talks we arranged for Dr Nigel Speight around Ireland this month. PDF file type: https://1drv.ms/b/s!AoHfldspRkWU1PBSYDEV2OKShgbB9w?e=DObRGW (Clickable link available via Doras in bio) We hope to release a video recording fairly soon to our YouTube channel
(Clickable link in bio) I’m pleased to be able to support David Tuller DrPH to help him continue his important work. He has particularly focused on (bio)psychosocial claims/researchers: we’ve learned they need to be watched closely. https://crowdfund.berkeley.edu/project/42302 (Clickable link in bio)
@worldmealliance Meet Ivana, from Brazil, one of our #GlobalVoiceForME advocates sharing their story for #WorldMEDay this May 2024. She tells us “It’s desperate to think about the number of patients who are helpless in Brazil. I’m proud that I’m still able to fight for their rights, even though the struggle is thankless and often frustrating.” “It is extremely important that knowledge is disseminated because the Brazilian community knows nothing about the subject.” Read Ivana’s story. Hear our voices. Link in bio to our website where you can find the full series of #GlobalVoiceForME stories. #MyalgicEncephalomyeltis #MyalgicE #LongCovid #pwME #EMSFC #mecfs Alt text: Ivana, a Brazillian women with short, curly dark hair, lies in bed wearing a t-shirt with colourful plants and a toucan on it. Text overlay reads “Please prevent thousands and thousands more people from developing ME.” #GlobalVoiceForME World ME Day May 12th.
Home #Test2Treat program for COVID and flu is critically needed. Let’s fight for it! Sign a letter to NIH Director Dr. Monica Bertagnolli. https://bit.ly/4bwHhnO Also write to the White House and your representatives: https://bit.ly/3TX5gGM Links are in our bio! #Test2Treat was designed to reduce disparities for the most at-risk populations, by offering FREE tests, telehealth and treatment for both COVlD and flu, and was recently ended even though 100 million people are eligible. Tests and treatment help our communities manage current sickness while helping reduce the chance of #LongCOVID or " #LongFlu." Join us to ask our government to restore, expand and widely promote #Test2Treat as a critical layer of protection for ALL! Sponsor: @maskedtogetheramerica Cosponsors: #MEAction @meactnet Senior and Disability Action @sdaction1 COVlD ACTION GSO @covid_action_gso Solve M.E. @solve_cfs Health Watch USA LONG COVlD JUSTICE @longcovidjustice Strategies for High Impact @highimpactstrategy Clean Air Club @clean.air.club Covid Safe Colorado @covidsafecolorado Umoja Health Bay Area @umojahealth Awareness for POTSies @awarenessforpotsies Long COVID Moonshot @longcovidmoonshot People’s CDC @peoplescdc World Health Network @whn_global Long COVlD Foundation @longcovfoundation Pan End It! @pan_end_it #pwME #MECFS #MyalgicEncephalomyelitis ID: Black text on top says, “ Test to Treat Program for COVlD & Flu Saves Lives. Let’s fight for it. Green text below says: "Join us to write to NIH and officials." In the middle is a "Home Test To Treat, COVlD-19 & Flu" kit box. At the bottom are logos of organizations cosponsoring the letter to NIH.
20th May • Runner beans are in. Grow grow grow 🌱 #EmbroideryDiary #EmbroideryJournal #Glimmers #pwME
Meet Ivana, from Brazil, one of our #GlobalVoiceForME advocates sharing their story for #WorldMEDay this May 2024. She tells us "It’s desperate to think about the number of patients who are helpless in Brazil. I’m proud that I’m still able to fight for their rights, even though the struggle is thankless and often frustrating." "It is extremely important that knowledge is disseminated because the Brazilian community knows nothing about the subject." Read Ivana's story. Hear our voices. Link in bio to our website where you can find the full series of #GlobalVoiceForME stories. #MyalgicEncephalomyeltis #MyalgicE #LongCovid #pwME #EMSFC #mecfs Alt text: Ivana, a Brazillian women with short, curly dark hair, lies in bed wearing a t-shirt with colourful plants and a toucan on it. Text overlay reads "Please prevent thousands and thousands more people from developing ME." #GlobalVoiceForME World ME Day May 12th.
Cartoon of a skeleton sitting at a table, looking down at a cat. “What a year, huh?” “… it’s May” #meme #humor #Myalgicencephalomyelitis #longcovid #MECFS #fatigue #postviral #spoonie #chronicillness #chronicfatiguesyndrome #ME #CFS #LC #millionsmissing #pwME #MyalgicE
The last one though 😜 Can’t wait to hang with some of you lot this eve for the second ever Spoonie Hangout!! Remember to get ya questions in for the Q&A!! And song requests!!!! Any ideas? 🤷🏻♀️💜🥄 Love and spoooooons xoxo #ChronicIllnessHumor #ChronicallyAwesome #HealthMeme #Illness #ChronicIllness #InvisibleIllness #InvisibleIllnesses #ButYouDontLookSick #CFS #MECFS #PWME #DoctorMemes #SickGirls #ChronicIllnessProblems #SpoonieHumor #SpoonieLife #MemePages #MedicalHumor #MedicalHumour
On Sunday, the M.E. community all across the world joined Anna @theslowlane.me for the Blue Sunday #TeaPartyForME2024. We loved seeing all the photos of you joining in the fun and enjoying tea and cake! Anna’s incredible fundraising total currently stands at over £17,000 including over £1,400 for Action for M.E. We are so grateful to Anna and to everyone who took part in #BlueSunday2024 to help us raise awareness of #MECFS and vital funds for #pwME. There is still time to donate! Head to Anna’s fundraising page, linked in our bio. #MyalgicE #MyalgicEncephalomyelitis #LivingWithME
Up most of the night with a horrific bladder flare = cry and make some memes about the horrors. Severe M.E + an I.C flare + the start of PEM is too much. #Accessibility I.Ds Image 1: the words "My bladder for absolutely no reason at all" sit above a still of a music video showing a femme presenting person with short hair and red lipstick, their mouth is open and the lyrics "Pissing the night away" sit across their chest. Image 2: the words "My bladder right after I finish my sleepy time teal" sit above a still of a music video showing a femme presenting person with short hair and red lipstick, their mouth is open and the lyrics "Pissing the night away" sit across their chest. Image 3: the words "My bladder after a day of hydrating and Electrolites" sit above a still of a music video showing a femme presenting person with short hair and red lipstick, their mouth is open and the lyrics "Pissing the night away" sit across their chest. Image 4: the words "My bladder after I consume trigger foods/drinks" sit above a still of a music video showing a femme presenting person with short hair and red lipstick, their mouth is open and the lyrics "Pissing the night away" sit across their chest. Image 5: the words "My bladder, every single night" sit above a still of a music video showing a femme presenting person with short hair and red lipstick, their mouth is open and the lyrics "Pissing the night away" sit across their chest. #ChronicIllnessMemes #Memes #LaughOrCry #LaughAndCry #Health #Spoonie #ChronicPain #ChronicIllness #InterstitialCystitis #ICMemes #MECFS #BladderPain #PWME #InterstitialCystitisAwareness #AutonomicDysfunction #Disability #MyalgicEncephalomyelitis #SevereME #SpoonieCommunity #SpoonieHumour
Today is a crashy day. All the light was nice but that doesn't go unpunished either. So after the nice pics yesterday for balance I need to share today as well. Grigor could lay in the sun, but prefers to hang out with in the dark. Cool cat! See you on the other side again! #pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #spoonie #banPEM #art2cureME #beard #gayscruff #canyouseeMEnow #balletdancer #zorgbetervoorME #selfie #selfportrait #chronicillness #science #abyssinian #catsofinstagram #catsofholland #catdaddy #beardsandcats
• @actionform.e The All-Party Parliamentary Group on ME (APPG) has launched its inquiry into Severe ME. Action for M.E., the @meassociation, and the 25% M.E. Group will be working closely to support the APPG throughout the inquiry and gather evidence from people with ME. 🔗 Read more in the ‘News’ section on our website (link in bio). #pwME #MyalgicE #MECFS #SevereME #APPG
The All-Party Parliamentary Group on ME (APPG) has launched its inquiry into Severe ME. Action for M.E., the @meassociation, and the 25% M.E. Group will be working closely to support the APPG throughout the inquiry and gather evidence from people with ME. 🔗 Read more in the ‘News’ section on our website (link in bio). #pwME #MyalgicE #MECFS #SevereME #APPG
The aftermath of my PIP assessment. I have to say, doing it from bed (telephone appointment) was a huge pro, although they did cause me panic when they said the next one wouldn't be on the phone and it took a while to realise they meant for any future renewal and not a second assessment for this application 🫣 That being said it was very stressful and the questions are very much set up to find ways of justifying not giving you the benefit rather than, you know, actually ascertaining whether the disabled person needs and qualifies for help. But we shall see how it goes. At least I can now put it away in the back of my head until that decision letter arrives. #pwme #mecfs #endometriosis #fibromyalgia
6 years since my body decided that penicillin was the bad guy and tried to unalive me all because I fell on a cactus #anaphylaxis #penicillinallergy #nearlydied #butididnt #pwME #iwasfineandtheniwasnt
@roslemarchand DAY 21 - SADNESS When you suffer with a lifelong chronic illness like M.E. it’s hard to stay positive. Depression is a secondary effect but not the cause of M.E. Sometimes I just have those days when it all gets too much and I feel sad. Do you have days like that? #MyalgicEncephalomyelitis #MEAwareness #MECFS #MEWarriors #MillionsMissing #pwME #SevereME #VerySevereME #MEawarenessmonth
The #ContaminatedBlood scandal was/is horrific and my heart goes out to all who have been impacted for decades. Yet again, victims/families have had to fight for decades to get justice. The 'system' is flawed and cover ups seem to be the go-to. M.E is similarly impacted by 'establishment' decisions, policies, and cover ups. Our injustice persists in abundance in 2024. How many more decades must we fight for an inquiry? With M.E the 'bad actors' have been- -@GOVUK / @DWPgovuk - @NHSEngland - Royal College of GPs - Royal Collefe of Psychiatrists - Science Media Centre - The media (MSM - inc you @GMB @BBCNews) All of these bad actors have created a false narrative around a serious, often disabling, complex neuroimmune disease. Deliberately created stigma. In 2024, we have NOTHING No treatments (approved), no cures, no biomarker, research is very poorly funded in comparison with comparable diseases. M.E can kill. There are MANY questions to be answered in an official inquiry When will it be our turn? @rishisunakmp 1.25 million (est) people who meet M.E criteria in the UK now need help/answers. Not speaking out = complicit #MEcfs #pwME #UK #Health
I visited family and caught a Norovirus confirmed with a lab stool sample. I ended up being admitted to the hospital. Having chronic illness likely made this acute illness worse. I think I vomited 40 times. My potassium was 2.9, very low, a critical level. Vomiting does lower potassium. My magnesium was a little low too. Maybe my levels were low before I got the virus? My white blood cells were 26,000, critically high. Normal is 10,000. The doctor called it a stress reaction leucocytosis. I told him it was normal. My white blood cells increase suddenly whenever my body is stressed, even my routine labs show WBC elevations after activity, and whenever I’m in a crash. Myalgic E is a neuro IMMUNE disease after all. My lactic acid was high which baffled the doctors, but I told them it was normal, a part of having myalgic E. (With the mitochondria blocked in myalgic E, the body uses mostly lactic acid and ketones for energy. I was traveling and doing stuff, of course my lactic acid was high.) My anion shift showed I had metabolic acidosis, most likely from the myalgic E, even though I was vomiting and loosing all my acid. I was kussmaul breathing, blowing off carbon dioxide, a normal part of being in an acute myalgic E crash for me. My labs showed my carbon dioxide was low but my anion gap was high. Metabolic acidosis. I finally stopped vomiting after *5* doses of antiemetics (anti vomiting meds) after I had been there for 12 hours. Of course they asked and I told what medical conditions I had, like Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome, and myalgic encephalomyelitis. The doctor had the gall to suggest I go to a bigger hospital or go home where specialist doctors for these conditions can take care of me… um there ARE NO specialist doctors for ME or POTS. LOL *I* am the specialist. I literally just had a virus. And now my hospital paperwork has all my meds incorrect and suggests ruling out *psychosomatic* causes. For fs sake. #norovirus #hospitalization #Myalgicencephalomyelitis #longcovid #MECFS #fatigue #postviral #spoonie #chronicillness #chronicfatiguesyndrome #ME #CFS #LC #millionsmissing #pwME #MyalgicE
Some people wake up feeling like a Million Bucks, I wake up-feeling like Insufficient funds. #meme #humor #Myalgicencephalomyelitis #longcovid #MECFS #fatigue #postviral #spoonie #chronicillness #chronicfatiguesyndrome #ME #CFS #LC #millionsmissing #pwME #MyalgicE
We have a special message to share with you from our Research Manager, Candace Rond.👇 🎤Clinical trials are vital to developing new medications, treatments, and better patient care for individuals with ME/CFS and Long Covid. On this Clinical Trials Day 2024 I would like to recognize the exceptional research team who work tirelessly to advance research in the ME/CFS and Long Covid field! We also would like to thank all the patients who have participated in clinical trials for the crucial role they play in research. Lastly, I would like to thank all the clinical research professionals who help to advance future treatments and improve global health. Happy Clinical Trials Day 2024! If you are interested in participating in any of our current trials, please check out our research page to see the studies we are currently conducting. Link in bio. Candace Rond, CCRC -Bateman Horne Center Research Manager🎤 🧪Embracing the Clinical Trials Day campaign slogan, "Trailblazers Among Us," members of our clinical research team proudly share their handwritten signs, highlighting why they dedicate their professional expertise to pioneering advancements in the field of ME/CFS and Long COVID. #ClinicalTrialsDay #CTD2024 #pwME #MECFS #LongCOVID #ClinicalResearch
You're invited to attend our online Support Group! What: Beyond Betrayal, Cultivating a Positive Relationship with Our Bodies When: Tuesday, May 21 @ 1p.m., Mountain Time Where: Zoom registration link in stories. Upon registration, you will receive a confirmation email with instructions for joining the group event. Led by a licensed professional with personal experience navigating life with complex chronic illness, each session includes a topic and guided discussion. All are welcome, and we encourage you to participate at your level of comfort. We'll send you a recap of the discussion with the tips, resources, and links shared during the session. See you soon! Team BHC #pwME #MECFS #longcovid #fibromyalgia #support
Get some rest ☁️⭐ by @rana.theartist This next piece in our art showcase highlights a gentle but essential message: the need for rest. "Being chronically ill is hard enough," Rana says, "please don't be hard on yourself." As someone grappling with multiple chronic illnesses while also running a small business, Rana says, "I could sleep forever and still be tired." She has a reminder both for herself and everyone else living with energy-limiting conditions: "Our best may look different every day and that's okay. It's okay to rest. It's okay to take breaks. Rest does not have to be earned. Rest is necessary." 👉 Love Rana's artwork? #EnterToWin some of her signature stickers (and lots of other goodies) through the link in our bio til June 1st. 100% of proceeds aid people with #Fibromyalgia, #MECFS and #LongCovid through the ME | FM Society of BC! [Image description pinned in comment. Post features alt text] #BAMonth2024 #BenefitAwareness2024 #DisabledArtist #ChronicallyIllArtist #BlackArtist #DisabilityArts #ArtAsAdvocacy #DisabilityCommunity #SpoonieSupport #Fibro #pwME #LongHaulers #ChronicIllnessAwareness #RestIsResilience
May is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), and we're beyond grateful for Dr. Rowe and the incredible team at the Chronic Fatigue Syndrome and Related Disorders Program at the Johns Hopkins Children's Center. Check out this quote from the wonderful Dr. Broussard Robinson! [Image Description: a light blue watercolor background that has royal blue text. In the upper left hand corner reads Dr. Rowe's Team. Below is a big royal blue quotation mark. Below that in royal blue text reads: Dr. Rowe is an excellent teacher and mentor! His passion for this work and the patient population is why I love working with him and this team everyday. Happy to have colleagues that inspire me every day as we work toward a common goal of caring for patients and advancing the science. - Dr. Camille Broussard Robinson In the lower right hand corner is the Rowe's Research Runner's logo in royal blue and light blue.] Hashtags below: #MECFS #MECFSAwarenessMonth #MyalgicEncephalomyelitis #PwME #ChronicFatigueSyndrome #Dysautonomia #LongCovid #ChronicIllness #InvisibleIllness #ButYouDontLookSick #Spoonie #Spoonies #SpoonieCommunity #ChronicallyIll #Advocate #Advocacy #ChronicIllnessAdvocate #FibromyalgiaAwarenessMonth #Fibromyalgia #EDSAwarenessMonth #EDS #EhlersDanlosAwarenessMonth #HSDAwareness #POTS #ChronicIllness #InvisibleIllness #ChronicIllnessAdvocacy #Advocacy
💚 The experience of medical and parental neglect from a teenager with Long Covid/possible M.E.💚 I am posting this anonymous story to amplify the experience of a young person living with Covid/probable M.E, in a neglectful household. Please read and share and offer kind comments. If you have a message you want to send to them, I can forward this on. Below is a message from this person including action points 👇 “Hi all! I know it feels like there isn’t much to be done in situations like mine, but there are still things people can do to help. You can educate yourself on the signs this is happening, and support and validate anybody going through it. You can also generally keep spreading awareness on chronic illnesses, especially M.E. The most important thing to know is that reporting to authorities is very very rarely helpful- welfare checks are not safe. You put the patient at risk of severe distress, disruption to their entire lives, further abuse from family and potentially psychiatric incarceration. If you do know someone being neglected or abused at home, discuss with them how to support them- do NOT involve the police unless that’s agreed with them. One day I’ll share my story publicly, but until then I’m so so grateful to Fran for doing this for me. I ask that you please don’t speculate at all over who I am, even if you think you know me, for my safety. And please know that I will read every comment under this post- the kindness already shown to me by this community has been life-saving and it does not go unappreciated. Thank you so much for reading 💙” #LongCovid #MECFS #LongHauler #LongCovidKids #MedicalNeglect #LongHauler #pwME #MillionsMissing #myalgicencephalomyelitis #MEAwarenessMonth [Image IDs - continued in comments - all images have a light green background, the first image has graphics of daises either side of the text] [Image 1: The experience of medical and parental neglect from a teenager with Long Covid/possible M.E - anonymous - TW: suicide, self-harm, mental and physical illness, abuse and neglect. This post is abridged and doesn’t even cover half of what the writer has experienced.]
📣 OMF's StudyME Registry has over 8,800 Participants! 🎉 Have you signed up?? Help accelerate research for #MECFS, #LongCOVID, and related diseases through research participation. Join OMF's StudyME and let's show the world how many people want a cure 👉 Link in bio. 🌐 What is StudyME? OMF StudyME is a recruitment tool to connect individuals interested in participating in research studies with the researchers conducting them. Over 8,800 participants have signed up already from around the world! Researchers are interested in individuals suffering from specific illnesses as well as healthy individuals who can act as “controls” or reference points. Thus, even if you are in good health, we encourage you to sign up for OMF’s StudyME to support patient communities and promote scientific research. Sign up today 👉 https://www.omf.ngo/studyme/. #pwME #mecfs #LongCOVID #ResearchParticipation #ChronicIllness
📣 OMF's StudyME Registry has over 8,800 Participants! 🎉 Have you signed up?? Help accelerate research for #MECFS, #LongCOVID, and related diseases through research participation. Join OMF's StudyME and let's show the world how many people want a cure 👉 Link in bio. 🌐 What is StudyME? OMF StudyME is a recruitment tool to connect individuals interested in participating in research studies with the researchers conducting them. Over 8,800 participants have signed up already from around the world! Researchers are interested in individuals suffering from specific illnesses as well as healthy individuals who can act as “controls” or reference points. Thus, even if you are in good health, we encourage you to sign up for OMF’s StudyME to support patient communities and promote scientific research. Sign up today 👉 https://www.omf.ngo/studyme/. #pwME #mecfs #LongCOVID #ResearchParticipation #ChronicIllness
A big thank you to Anna Redshaw and to everyone who donated to ME Research UK for Blue Sunday / Tea Party for M.E. We hope you were able to enjoy a slice of cake or two. Also, a big thank you to Isaac for organising 'Blue Sunday - Tea Party for ME - The Concert'. There is still time to donate as the fundraising pages will be open for at least 7 more days: Found via Anna's linktree/link in bio: @theslowlane.me #bluesunday2024 #TeaPartyForME2024 #meaw #meaw2024 #pwME #MyalgicEncephalomyelitis
Mr. amazing moved some stuff around so I can finally reach the door with my wheelchair and open it. Before I has to climb over the bed which is often too much effort. Now that I can drive to the door and it opened a whole lot of possibilities and feelings of autonomy. For Grigor, myself and all the birds (and once a mouse) that I can feed a lot easier. Everyone is happy. 👨🏾😸🐦🐤🐭🐁🖱️ #pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #spoonie #banPEM #art2cureME #beard #gayscruff #canyouseeMEnow #balletdancer #zorgbetervoorME #selfie #selfportrait #chronicillness #science #abyssinian #catsofinstagram #catsofholland #catdaddy #beardsandcats
#MEAction is hosting a new virtual, 30 minute, very modified movement class on Thursday, May 30th at 11 am PT/2 pm ET/7 pm BST that has been crafted specifically for people with ME. We are always thrilled to partner with Shannon Williams-Bramburger of @NourishTherapeuticYoga to offer this class and we hope you join us! More info: https://www.meaction.net/event/a-very-modified-movement-class-on-5-30/ Link also in our bio. The whole class will be lying down and can be done from bed. There is an option to stay at the end of class for an additional 30 minute Community Chat. This gives the opportunity for you to ask questions and engage in a positive, supportive community with others who “get it.” If you are not able to attend the class in-person, the class will be recorded and shared at a later date. We also recognize this is out of reach for the most severely ill but we constantly strive to find ways to provide options to include all members of our community. You might want to check out the meditation specifically for those with severe ME created for #MEAction by Shannon on #MEAction's Youtube channel. While this class is free to attend, it is not free for #MEAction to host. If you are able to donate, we would greatly appreciate it. This helps to support this type of programming and allows us to continue to offer these type of classes free of charge to the community. #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis ID: Purplish marble background with a purple box in the center that says: A Very Modified Movement Class May 30. With the Meaction logo and the Nourish Yoga Logo at the bottom.
Rotary International for Excellence in Service to Humanity The Rotary Women of Impact (RWI) Awards & Fundraiser Dinner is an event that celebrates women who lead change in various fields and serve as role models for positive change. I am deeply honored and grateful to have received the Rotary Women Of Impact Award. This recognition means a great deal to me, and I am humbled to be acknowledged by such a prestigious organization dedicated to service and community improvement. #healthequity #publichealth #healthdisparities #covid #healthcare #health #womenshealth #equity #blackhealthmatters #blackhealth #mentalhealth #community #wellness #healtheducation #communityhealth #healthdisparity #pwme #socialdeterminantsofhealth #publichealthmatters #globalhealth #equityjusticework #rotaryawards2024 #rotaryinternational #womenrolemodels
When Blue Sunday meets PEM Monday. I’m posting this picture on the Monday morning after #BlueSunday, a day late. You know why? Because I’ve got ME/CFS and yesterday’s PEM (post-exertional malaise) kept me out of commission. Still feeling gratitude for all the amazing people with ME/CFS who advocate for positive change from their beds. And to the newly diagnosed people with long COVID – we see you! So I’m raising a cup to my fellow ME peeps, or MEEPS, on the day after #BlueSunday with equal measures of love and respect. I am also fortunate enough to enjoy the most delicious baked treats thanks to @coryanderson_ and her @babydeerbakery. Cory set up a fundraiser for @meactnet, using her talent and limited energy to raise funds for the MEAction Network. The fundraiser is still live, so if you are able to donate, please do! Click on the link to help support the #millionsmissing. Thank you! https://meaction.funraise.org/fundraiser/babydeerbakery?fbclid=PAZXh0bgNhZW0CMTEAAaaGEOIf661VyuDH7CJqr7bzTRi47bjQENRwSE-O43r9qDNLClFUvkC-o1U_aem_AaS8pZJDNhNBgnx8qM54RUvW3BYp4IOFDsr6g-2Shoy_agT0A8UYJYrkj5RLCc5DcRwzlaQ6XPSqtkMqC9EJXSyX #BlueSunday #TeaPartyForMe #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #Nonprofit #charity #TeaParty #stillsickstillfighting
For ease of access, we have collated all our symptom postings from ME Awareness Week into one article. Tap link in bio to read article via our website #MEAW2024 #MEAwarenessweek #Myalgicencephalomyelitis #mecfs #MyalgicE #MEAwareness #PEM #pwME #MECFS #MyalgicEncephalomyelitis
19th May • I made a shiny new friend. Aren’t they gorgeous 😍 #EmbroideryDiary #EmbroideryJournal #Glimmers #pwME
I love this water bottle I recently bought. It’s a good option if you find it difficult to lift your arms. It has a straw inside, and a soft mouth piece that flips up to approximately 45 degrees. It has a generous size wrist strap. It doesn’t leak, too. The lid catch is very secure. Comes with a cleaning brush for the straw. And, not a bad price either. I’ll put a link in my stories if you’re interested. #pwme #mecfs #chronicillness #chronicillnesslife #chronicillnesslifestyle #chronicillnessaids #disability #disabilityaids
I was fortunate to experience a nice family #BlueSunday2024 #TeaPartyForME2024 celebration today in aid of the Irish ME/CFS Association https://www.idonate.ie/event/bluesunday2024fortheirishmecfsassociation . Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏 Thanks also to Anna @theslowlane.me the overall coordinator of #BlueSunday #TeaPartyForME for ME charities around the world. Some people have given me cash donations off-line but I don’t have a final total yet.