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
As this year marks 55 years since M.E. Was classified as a neurological illness by the WHO organisation the Hope Craft group created a range of neurographic artwork displaying their own thoughts and feelings whilst using the style to bring mindfulness into their art. Here we have put together everyone’s artwork and combined it into the shape of 55. This is being displayed today to the Queens medical students also. I hope you will join me in praising all of the members for taking part and using their time and energy which is so precious. I am so so proud of everyone! Funny fact: I put it all together upside down 😂. The 55 is the wrong way and it can't be turned round or you can't read it 😂. This is the reason I am the clumsy sketcher as I am forever doing silly things! Thank you for looking! Please share your comments below so I can let everyone from the group know what you thought of it 😊 @hope4mefibro.ni --- #chronicillness #millionsmissing #globalvoiceforme #MEAwareness #MEWarrior #MEAwarenessDay #chronicfatigue #invisibleillness #InvisibleIllnessWarrior #hope #neurological #northernireland #chronicpain #invisibledisability
Day 22 #MillionsMore #MEAction #YouAreNotAlone #MillionsMissing #MEAwareness #MEAwarenessDay #MECFS
Day 22 #MillionsMore #MEAction #YouAreNotAlone #MillionsMissing #MEAwareness #MEAwarenessDay #MECFS
Lieverd @angelagroothuizen stond zomaar op de stoep, Gewoon, om me een hart onder de riem steken en een dikke berenknuffel te geven. Ze vroeg of ze kon helpen en deelde vandaag de podcast in haar stories. We kletsten even aan de keukentafel, over vroeger, muziek en onze gezinnen. Het zijn de kleine grote dingen die zo raken en van betekenis zijn… ✨💛 #microavonturier #family #glimmers #MEawarenessday #MEawarenessmonth #MEcfs #MEcvs #canyouseeMEnow #chronicillnessfighter #millionsmissing #me #chronicillness #chronicpain #art #invisibleillness #spoonie #autoimmunedisease #spoonielife #chronicfatigue #chronicillnesswarrior #mentalhealth #butyoudontlooksick #health #chronicallyill #pots #eds #chronicfatiguesyndrome #niethersteld #notrecovered
Today on #BlueSunday (initiated be @theslowlane.me & held on the sunday following #MEAwarenessDay) we are taking the chance to show our support for everyone with, or supporting those with, Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS). Most of you that our very own Louise has M.E. (and has been living with it for over half her life) so it is something very close to her heart 💙 Louise says: "When you see someone with a chronic illness 'out', 'working', 'looking nice', 'smiling', 'having fun' etc. try to remember that they will have had to plan carefully and reduce other activities both before & after just to be able to do that 'something' others may see as 'normal' or not even think about doing ... very few people will actually even see them on their low/bad days" #MyalgicEncephalomyelitis #MyalgicE #ChronicIllness #ChronicIllnessWarrior #ChronicFatigue #ChronicPain #RaisingAwareness
We go blue for ME awareness month! This month is ME awareness month. Why is awareness about this disease so important? I’m gonna try to explain. ME is a highly disabling disease, but absolutely not rare! I could even say very common. 1 in the 100 people has ME. So you probably know 2 or 3 people who have ME. And everyone can get it! Worldwide there are 55 million people with ME. Then why know so little people and even doctors about it? I’m not gonna explain the whole history now, but it comes down to: science slept on it!! For decades doctors even encouraged their patients to do a harmful treatment named GET, where you have to exercise more and more. This is extremely dangerous for people with ME, because it’s PROVEN that this exacerbate their illness, in a lot of cases irreversible. They call the neglecting of ME the “biggest medical scandal of the century”. Frankly I’m not happy to have a disease with that title.. Myalgic Encephalomyelitis aka ME is a neuroimmunological disease that causes extreme exhaustion as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise (PEM). So if you are doing something (for some people as little as brushing your teeth), you can get this PEM reaction and get even sicker. Not being aware of how PEM works can have devastating consequences. Most people get ME as a immunological reaction to a virus of bacteria. Like I said: this can happen to anyone. Because of a lack of awareness, there is a lack of funding for research. There is still no cure for this disease. Most people are not recovering and are only getting sicker. And the most sick people are even in risk of dying. Because of a lack of awareness, for lots of people it takes years before they receive the correct diagnose (if they even get it, because the majority of people with ME are undiagnosed). I was “lucky” when I was 13, I got my diagnosis after 6 months. But I also got this GET treatment that made me even sicker. Text continues in comments, also #imagedescription
We did it!! 🎉😍🥹 I never imagined we’d raise $500, and I can’t wait to see the grand total once we add our monthly fundraising amount to it too at the end of May. To celebrate and say thank you, we’re giving you 15% off all books and bookish goodies on our website from now until Wednesday 11.59pm (including this weeks Tuesday Book Drop 🥳) We’ll leave the Givealittle page up for a while more for anyone that wants to join, but couldn’t join us today. So please keep sharing, and check out #bluesunday2024 & #teapartyforme2024 to see people joining in from around the world 💙
Happy #teapartyforme 🫖☕️ This is the fourth year I’ve taken part in the Tea Party for M.E., but it’s the first year I’ve felt brave enough to do something beyond just Moses and I, and a little celebration at home. M.E. is such an isolating illness. It strips you of everything you thought you knew, and leaves you with only tiny pieces. Last year I left the house 37 times. 37 times in the entire year, most of which were for medical appointments. I can’t describe how amazing it is to be a part of something that makes a difference like this, but doesn’t require me to sacrifice my health and wellbeing to participate. I love that this fundraiser is accessible to anyone, and I’m feeling so thankful to all of you who set aside some time today, to acknowledge and advocate for ME/CFS. I’ve been saying that this fundraiser is important to make others feel like they’re less alone, but the truth is it shows me I’m not alone either. This business is my connection to the world while ill and housebound, and it’s pretty special to see how many of you support not only this business, but me and this fundraiser. So thank you 💙
Can we fundraise $500?? 🫖 We’ve smashed our goal of $300 (🙏) so let’s see if we can go higher! If we make it to $500 by the end of today we’ll give you 15% off books this week! This is a truly incredible result, and I am so so thankful to each and every one of you 💙
What a number to wake up to 🥹😍 I can’t believe we’re at $200 raised already and it’s not even midday! I’m loving seeing your tea party photos come through, so I hope you take the time this afternoon to join us. Even a $1 donation can help us reach our goal, and go towards supporting people with ME/CFS in NZ. P.s. be prepared to hear how amazing our customers are on loop for the next few days, because you lot are simply the best! 💙
Today is officially #BlueSunday which means it’s time for the annual #teapartyforme, or our very own Virtual Tea Party for M.E! ☕️ If you’re joining us, please remember to share your tea party photos by tagging us and using the hashtags #litteararyteaparty & #teapartyforME2024 💙 We’ll share fundraising updates throughout the day, as well as what we’re reading and eating/drinking and you can connect with more tea parties by checking out the #teapartyforME2024 hashtag for tea parties around the world!
In case you want some (themed) reading inspiration for tomorrow, we’re continuing our books with M.E. series with a couple of adult fiction books that feature characters with ME/CFS 📖 The John Connelly book was a surprise find for me, but from all the reviews it sounds as though he handled the representation super well. It can make a real difference to have an illness represented well in popular media like this, both for making sufferers feel understood, but also as a way to explain what it’s like to family and friends. I’ve read The Matzah Ball, but it looks like I’ll be adding these other three to my TBR list! I love reading books with good disability rep 💙
𝐈𝐧𝐯𝐢𝐬𝐢𝐛𝐥𝐞 𝐃𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲 . M.E. is classed as an invisible illness or invisible disability which immediately raises eyebrows - because what really is an invisible disability - if you’re disabled it should look pretty obvious right? . Wrong! An invisible disability from an M.E. Patient perspective is that there are times when we can manage more - due to the fluctuations in symptoms and severity. So you may see us in the shop getting groceries (especially if your carer is a spouse or loved one who also works or in education); or on the school run for that matter. And outwardly we may look okay . That can be due to that we are having what is called “a good day” where our symptoms may have eased or appeared to have gone - which is good in the sense we can than get shit done - but it’s bad as it is where we tend to cram in all that we haven’t been able to do and trigger a flare, relapse or PEM (talked about on Wednesday) . For some, like myself, we require walking aids such as sticks for balance or very short distances - to a wheelchair for longer distances or prolonged standing due to the nature of M.E. Being a chronic energy limiting condition . But it comes with a host of symptoms you can’t see, like headaches, body aches, sore or swollen glands, tachycardia, brainfog - and yes, depression which you can’t necessarily see or it could be that we get very good at hiding it as well . This is why charities such as the @sunflowerlanyardscheme team that are making the invisible, visible. Wearing the sunflower lanyard is a sign that we have an invisible disability and is being recognised in more and more establishments - it shows the staff that we do have a disability that could rear its ugly head at any moment and we may need assistance . Continued in comments…
We’re getting ready for tomorrow’s Lit-tea-rary Tea Party for M.E. by dusting off the tea pot and getting our baking sorted 🍰 Are you ready to join us tomorrow? 🫖📖 We’re already $70 towards our goal of $300 to support people with ME/CFS in NZ. Every bit of support - donations or sharing online - helps raise awareness of ME/CFS and the incredible charities helping people living with M.E. As someone who has had M.E. for five years now, I know how vital these charities are to supporting those living with these life long conditions. My goal is to highlight the work of these charities, while showing those with ME/CFS know that they are not alone or forgotten. There’s no right or wrong way to join in, so whether you’re having a tea party in bed, or just reading on the couch, we look forward to seeing everyone share their tea party treats, and hearing what you’re reading tomorrow!
Reposted with permission from @mutualaidforme. 💙 [Blue heart]. This ME Awareness Month, we are excited to announce a mutual aid drive for 5 incredible members of the Myalgic Encephalomyelitis and Long Covid communities. ⠀ We aim to raise $1500, or $300 each, to allow our fellow spoonies to pay for medical care, rent, food, and basic necessities. ⠀ ME affects over 55 million people worldwide: 70% are unable to work, and 25% are housebound or bedbound with severe ME. Only 5% recover. Yet invisible illnesses like ME rarely receive government funding for research or disability pensions. ⠀ We urge you to take action this month to materially help people with ME, starting with the people in this drive. ⠀ Follow @mutualaidforme to hear about future ways to help our community and learn more about how this illness impacts the most marginalized people in our community. Go to linktr.ee/mutualaidforme or link in our bio to donate to one or all of our featured community members. Remember to like, save, comment, and share so this reaches more people! No spoons now but interested in donating? Comment “Hi” or “Hey” and someone from our team will remind you in DM’s. Thank you for your solidarity. Comment question: (in solidarity with those who are severe and bedbound) What is your favorite hobby to do while in bed? This post features alt text. Image descriptions will be pinned in comments. Hashtags: #MutualAid #CommunityBuilding #ChronicIllnessCommunity #MECFSFundraiser #Fundraiser #MutualAidDrive #Solidarity #DualPower #MillionsMissing2024 #GlobalVoiceForME #MillionsMissing #MillionsMore #GoBlueForMECFS #AllyForME #NEISVoid #ChronicIllness #InvisibleIllness #MEAdvocacy #MEAwareness #MEAwarenessDay #MEAwarenessMonth #GlobalMEDay #spoonie #chronicFatigue #chronicFatigueSyndrome #MyalgicE #CFS #MyalgicEncephalomyelitis #MECFS #longCovid
✨Ik ben soms zo bang je te verliezen in deze razende orkaan Maar in plaats van verder bij je weg Sta ik steeds dichter tegen je aan Ik vind mezelf elke keer weer bij je terug💛 #supersan #supersoof #microavonturier #family #glimmers #MEawarenessday #MEawarenessmonth #MEcfs #MEcvs #canyouseeMEnow #chronicillnessfighter #millionsmissing #me #chronicillness #chronicpain #art #invisibleillness #spoonie #autoimmunedisease #spoonielife #chronicfatigue #chronicillnesswarrior #mentalhealth #butyoudontlooksick #health #chronicallyill #chronicfatiguesyndrome #niethersteld #notrecovered
𝐆𝐨 𝐁𝐥𝐮𝐞 𝐅𝐨𝐫 𝐌.𝐄. . Last year I made contact with Rory’s school’s wellbeing teacher to see if they could start raising awareness on ME Awareness Day/Week as it felt quite important to myself, Rory and our family to let people in to what our life as family with a papa who has M.E. is like . They said yes and they went with the ‘Go Blue For M.E.’ and allowed the children to come in wearing blue on some part of their uniform . They are doing so again today. We picked Friday as it is a good way to end the week with Blue Sunday in two days time . Rory is going in armed with leaflets, magazines and wristbands from Action For ME; her magazine from the ME Association where they shared her as a carer and how she helps at home; and also fact sheets printed off from World ME Alliance letting people know what M.E. is and the school will be putting some up on their notice boards . It is so useful for awareness and for discussions to be talked about with the young, as they will be our future champions and advocates . As well as this, Linds’ will be hosting a coffee morning at her work during 10am tea break this morning too so that she can raise awareness and hopefully some funds for either Action For ME or the ME Association and to let her team understand how it doesn’t just impact me or us as a family, but from a carers point of view, what the obstacles are on a daily basis
Are you joining us for a spot of reading and a virtual tea party on Sunday? ☕️ There are only a couple of days to go until our Virtual Tea Party for ME fundraiser, and I couldn’t be more excited! The idea is to take some time out to join us by setting aside an hour or so to read (on Sunday, or whenever suits you), eat and drink something yummy and donate the price you’d pay in a cafe to our givealittle page towards supporting those with ME/CFS in NZ. It’s really that simple! 🫖 My goal is to show others with ME/CFS that they’re not alone or forgotten, so I’d love to see how you’re joining in on the day by using the hashtags #litteararyteaparty, #teapartyforME2024 and by tagging us in your photos. Every dollar donated will be added to our monthly fundraising total at the end of the month and donated to NZ ME/CFS charities. So help us reach our fundraising goal of $300 and help support an amazing global campaign to support people with ME/CFS. So if you need an excuse for some extra reading time this weekend, remind yourself (or whoever's interrupting your reading time 😂) you're doing it for a great cause 💙
@tigertailtextiles Today is #MEawarenessday 💙 •ME (Myalgic Encephalomyelitis) is a chronic illness that causes dysfunction in the neurological, immune, endocrine and energy metabolism systems of the body. There are a huge range of symptoms that are severe and devastating including extreme fatigue, pain, headaches, nausea, brain fog, dizziness, sleep disturbance and more. • The key diagnostic symptom is PEM or post exertional malaise which is an increase in symptoms after even minor physical or mental exertion. The often quoted statistic is that 250,000 people in the U.K. have ME however this is an outdated and misleading statistic that has not been updated in years. The emergence of Long Covid has shined a new light on the illness as they share many overlapping symptoms and viral infection is a trigger of ME. It is estimated that covid has led to a 400% increase in the number of people with ME. • 25% of people with ME are classed as severe and very severe. These patients are often bedbound in quiet and darkened room and some require tube feeding. • There is no diagnostic test, cure or treatment and it is chronically underfunded in biomedical research. A lack of understanding of the disease often leads to neglect and disbelief by medical professionals. • If you would like to get involved with raising awareness and money for ME charities, next week is the Tea Party for ME! This is an annual event that has raised over £100,000 for ME charities. To get involved, on Sunday the 19th of May wear something blue, have a slice of cake and donate the price you’d pay in a cafe to an ME charity. To find out more go to @theslowlane.me • It is also #fibromyalgiaawarenessday today 💜 It is a chronic illness that causes pain all over the body as well as an increased sensitivity to pain, headaches, fatigue, muscle stiffness and much more. There is no cure. #tigertailtextiles #meawarenessday2024 #goblueforme #globalvoiceforme #chronicillness #chronicillnessawareness #myalgicencephalomyelitis #myalgice
fragmented.me.uk @allontheboard Sending love to everybody affected by ME/CFS. It’s a long-term condition with a wide range of symptoms. Unless somebody has this condition they don’t know how exhausting it can be. #MEAwarenessDay #MECFS #MECFSAwareness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 - 𝗣𝗮𝘁𝗶𝗲̈𝗻𝘁𝘃𝗲𝗿𝗵𝗮𝗮𝗹 Mijn naam is Evelien van den Brink. Ik ben ziek geworden toen ik veertien was en inmiddels ben ik veertig. Ik kreeg longontsteking en knapte niet goed op. Een paar maanden later kreeg ik griep en daarna ben ik nooit meer gezond geweest. Het is een breekpunt geweest in mijn leven. Nadat ik ziek ben geworden bestond mijn leven plotseling uit ziekenhuisbezoeken, onderzoeken, behandelingen en wachten op beterschap. Maar die kwam niet. Eind jaren negentig overheerste nog de biopsychosociale visie op de ziekte. In de praktijk betekende dit voor mij dat ik behandelingen kreeg gebaseerd op CGT en GET en dat ik daardoor niet verbeterde maar juist verslechterde. De laatste specialist die ik zag, zei me toen: “Weet je, Evelien, ik heb het héél erg druk. Er zijn hier heel veel kinderen die allemaal wél beter willen worden en dan besteed ik mijn tijd liever aan hen.” Die woorden galmen nog altijd na. Als patiëntvertegenwoordiger voor het NMCB hoop ik een bijdrage te kunnen leveren, hoe klein die ook mag zijn. Laten we ons allemaal blijven inzetten om alle vooroordelen en ongefundeerde meningen te weerleggen met wetenschappelijke feiten. Ik ben ervan overtuigd dat kwalitatief hoogstaand wetenschappelijk onderzoek de onmisbare basis van vooruitgang is. Zo komt er ruimte voor nieuwe wetenschappelijke inzichten die eindelijk kunnen leiden tot behandelingen die wel effectief zijn. Dat is mijn droom nu. Dit is slechts een klein stukje uit het verhaal van Evelien. Wil jij het hele verhaal van Evelien lezen? Kijk dan op onze website (link in bio) #MeAwarenessDay #12mei #LevenMetMe #MeCvsVereniging #pwme #MEcvs
𝐓𝐡𝐞 𝐌.𝐄. 𝐒𝐲𝐦𝐩𝐭𝐨𝐦 𝐁𝐮𝐟𝐟𝐞𝐭 - sorry if this comes off preachy - it’s really not supposed to . I get tired too - the dreaded short sentence that most if not all M.E. patients will have heard at some point in their chronic life journey . The term Chronic Fatigue Syndrome has been a very big problem by making people believe that this is the main issue. The fatigue felt, within M.E. is unlike any form of exhaustion you will have ever known . You are allowed to get tired after a busy day, or if there’s some outside stressors - but please don’t confuse your tiredness with our fatigue - it really is different . We do also get, that you may be trying to say it’s okay, we get tired too as support - it just doesn’t come across that way, considering the amount of medical gaslighting we receive I saw a good slogan the other day “you don’t get M.E. until you get M.E.” and it is so true, it’s unlike anything I’ve ever had before and the symptoms are so vast and included in these slides . To be diagnosed you have to have a certain amount of the main symptoms like PEM (already covered this week) and then a selection of the secondary symptoms - and this is where the condition gets crazy as it comes with a whole baggage of extras . Headaches, migraines, flu like symptoms, tender/sore/swollen glands, sore throat, brainfog, cognitive issues, poor temperature control, dizziness, POTs, freezing extremities, IBS and other gut issues, poor quality of sleep, sleeping through the day, insomnia, pins and needles, numbness, tachycardia… the list goes on and feels endless . And this list can be checked off by many patients. Some will suffer with some of these symptoms, they may fluctuate and they may happen all at once or you may find that you don’t get every symptom . This is where the ‘fatigue’ part of CFS really discredits the patient - when we say M.E. isn’t just tiredness - we’re not joking and yes, we can have all these symptoms all at once - it really isn’t a joke or all in the mind . As mentioned earlier “you don’t get M.E. until you get M.E.”
“We can't even string a sentence together and yet we need to be the ones to bring research evidence to our sessions. It's not fair.” When I heard this quote from a person on the lived experience panel during last weekend’s ME Awareness Day webinar run by ME Group Australia, it made me angry. It made me angry because they are 100% correct. It shouldn’t happen this way. Here’s a bit more context. The person was talking about how frustrating it is that they are needing to be the ones looking through research articles, trying to find the latest evidence about what treatment strategies may be effective for managing their Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. They then bring this evidence to their treatment sessions with medical professionals and allied health clinicians to guide their sessions. But I agree that this is the wrong way around. As health professionals, OTs should be taking the responsibility to stay up to date with the latest evidence relevant to the diagnoses of the clients we are working with. In the case of ME/CFS, clinicians can do real harm if relying on old knowledge and practices as the gold standard (i.e. forget Graded Exercise Therapy and CBT!). I can understand clinicians are busy, and it can be hard to find time to stay up to date with absolutely everything. But sometimes it is easier than you think. If you work with people with ME/CFS, you can come along to next week’s Your OT Tutor Journal Club session, and you’ll be able to get a discussion-based update on what the evidence tells us, and how OTs can best support people living with ME/CFS. Don’t be that clinician that only relies on your clients to bring you the evidence. See you there ;) https://yott.au/journal_club_chronic_fatigue_syndrome #OccupationalTherapy #NDIS #MEAwarenessDay #YourOTTutor
📍 #callitME #myalgice #myalgischeenzephalomyelitis #pwME #myalgicencephalomyelitis #mecfs #severeME #verysevereME #millionsmissing #meawareness #meawarenessday #meawarenessweek #meawarenessmonth #meaction #MEICC #mecfsawareness #cfs #chronischeserschöpfungssyndrom #spoonie #LongCovid #longcovidawareness #longcovidrecovery
For Myalgic Encephalomyelitis Awareness Month, also known as Chronic Fatigue Syndrome Awareness Month (M.E/CFS), we are proud to have @laurenwindasnutritionist on our platform to explain more about this chronic illness and share her personal experience. We also delve into the impacts CFS can have on driving with exclusive advice from Lauren on how to pace yourself and enjoy a safe and comfortable car journey 🚘 Swipe to view the top tips 👉 #GlobalVoiceForME #MEAwareness #CFSAwareness #MEAwarenessDay #WorldMEDay
Afraid it's a case of dropping and dipping today, gang. This is a wildly personal topic that makes me feel intensely vulnerable, so I hope it meets the world with the intention with which it as composed, and reaches and resonates with anyone who needs it. #MyalgicEncephalomyelitis #InvisibleIllness #ChronicIllness #MELife #ChronicPain #Fibromyalgia #ChronicFatigue #InvisibleDisabilities #SpoonieLife #LifeWithME #DisabilityAwareness #ChronicIllnessWarrior #MentalHealthMatters #PatientAdvocacy #EndTheStigma #MEAwareness #MECommunity #SupportAndEmpathy #RealLifeStruggles #LivingWithDisability #disabledbusinessowner #thewellnysstree #nyssacraig #MEAwarenessWeek #MEAwarenessDay #MEAwareness #MEAwarenessWeek2024
#MEAction Maryland is hosting a virtual pajama party for our fourth annual Blue Sunday Tea Party for ME! We welcome guests from any location and any affiliation with ME, including those living with ME, those who care about someone living with ME and those looking to learn more about ME. Myalgic Encephalomyelitis (ME or ME/CFS) is a disabling complex chronic disease that affects many body systems, including the nervous, immune, cardiovascular and metabolic systems. ME is incredibly disabling, with 75% of people with ME unable to work and 25% housebound or bedbound. There are no FDA-approved treatments and no cure. Blue Sunday was founded by Anna Redshaw @theslowlane.me in 2013 as a virtual and accessible fundraiser for those living with ME, many of whom are too unwell to leave their homes or have visitors. From 2013 to 2023, Blue Sunday has raised more than $135,000 (£107,000) for various ME charities. Please join #MEAction Maryland on Sunday, May 19 at 4 pm ET via zoom to support people living with ME, celebrate our chapter’s advocacy wins, and enjoy an afternoon together. Have a cup of tea, coffee or electrolytes, grab some special treats, and wear PJs or something blue! Donations can be made to Blue Sunday by visiting bit.ly/BlueSundayMD2024 (case sensitive). Donations are not required to attend. Please see our link in bio for our advocacy call zoom link. #BlueSunday2024 #GoBlueForME #GoBlueForMECFS #GoBlueForACure #MEAwareness #MECFSAwareness #MEAwarenessDay #MEAwarenessWeek #MEAwarenessMonth #pwME #MECFS #MyalgicE #MillionsMissing [ID: a blue background with small dark and light blue stars. Illustrations of various characters wearing blue pajamas surround the text: Join #MEAction Maryland for a Pajama Party celebrating Blue Sunday The Tea Party for M.E. When - Sunday, May 19, 2024 at 4pm ET Where - zoom - Maryland Advocacy Link Who - Anyone! All locations welcome! Why - To support people living with ME, LC & related conditions* Wear PIs or something blue, have a sweet treat or two! Donate what you would have paid in a café Donate at bit.ly/BlueSundayMD2024 (case sensitive)]
WHAT ME FEELS LIKE… May is ME/CFS awareness month and I asked some of my friends and fellow ME/CFS sufferers to complete the following sentence: ‘ME feels like…’ Here is what they said: 💙 Like the tiredness, you feel after a long hard day but you feel it every day 24/7. 💙 Like waking up with the flu, jet lag and a really bad hangover all rolled into one – every single day. 💙 Like being weighed down by the weight of the sea. No matter how hard you fight to swim you just keep drowning deeper and deeper with no sign of it ever stopping. 💙 Like being a phone battery with a faulty charger so it never charges to more than 20%. 💙 Like being hit by a truck full of the flu virus, but less snot! 💙 Like you’ve just done 10 rounds in a boxing ring and not slept for months. 💙 Like being trapped by quicksand, the more you try to fight it the faster you sink. 💙 Like having the worst hangover, the flu, having just run a marathon and not slept a wink in weeks – all at the same time! 💙 Like carrying a backpack full of bricks everywhere. It drains your every breath, every word, every thought, your sleep and every step you take. Bystanders cannot see or feel the backpack’s existence or weight. It’s invisible torture. I hope this brings a little insight into what living with ME/CFS each day is like. If you have ME/CFS let me know how you’d complete the sentence in the comments! 💙 #meawareness #meawarenessmonth #meawarenesshour #meawarenessday #meawarenessweek #millionsmissing #millionsmissinguk #millionsmissing2024 #goblueformecfs #meaction #meactionuk #teachmetreatme #goblue4me #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #chronicfatiguesyndrome #mecfsawareness #mecfs #cfsme #cfsawareness #spooniestrong #spoonie #mecfswarrior #mecfsfighter #mecfslife #globalvoiceforme #bluesunday #bluesunday2024 #pwme ME/CFS
Dette er skremmende utvikling og statistikk! Flere midler, bedre behandlingstilbud, mer forskning og bedre samarbeid på internasjonalt nivå må til! SKÆRPINGS FHI!!! #longcovid #meawarenessday #postexertionalmalaise #kroniskutmattelse #longcovidawareness #longcovidrecovery
I drew this in 2022, trying to be on time for #MEAwarenessDay - needless to say, I didn’t make it. I then sort of forgot about it until today, when I’m 3 days late for THIS years ME Awareness Day 😅 Better late than never 💙 #art #cuteart #procreate
Our posters at #MEawarenessDay in #Vienna at #Heldenplatz and some of the heroes who gave speeches. Design: Blackferkstudio.com Thank you all for your incredible commitment. <3 Unsere Poster am #MEawarenessDay in #Wien am #Heldenplatz und ein paar der Held*innen die Reden gehalten haben. Design: Blackferkstudio.com Danke an alle für euer so wertvolles Engagement. <3 (Fotos teilweise von @oeg_mecfs ) #MillionsMissing #MEawarenessday #unversorgtseit1969 #MECFS @matthias.mollner
𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 - 𝗣𝗮𝘁𝗶𝗲̈𝗻𝘁𝘃𝗲𝗿𝗵𝗮𝗮𝗹 Ik ben Markus, vader van drie dochters en mantelzorger van twee gezinsleden, beide bedlegerig. Mijn vrouw is al ruim 36 jaar ziek en heeft zo’n 31 jaar op een ME/cvs diagnose moeten wachten. Zij heeft inmiddels een zeer ernstige vorm van ME/cvs en verblijft al bijna vier jaar in het donker. Medicatie geeft wat symptoomverlichting, maar biedt geen oplossing. De afbeelding is één van de kunstwerken die zij heeft gemaakt met potlood. Ze heeft er 9 maanden over gedaan; steeds een stukje verder. Onze jongste dochter werd ziek op haar vijfde na een infectie, maar werd rond haar pubertijd steeds zieker (resulterend in een bijzonder ernstige vorm van ME/cvs), tot en met een ziekenhuisopname aan toe. Inmiddels gaat het een stuk beter, o.a. door medicatie, maar zij is nog altijd ernstig ziek. Dit alles tezamen, met alle schrijnende verhalen van medepatiënten, die vandaag de dag nog zonder zorg zitten, eenzaam wegkwijnen in donkere kamers, worden geminimaliseerd en genegeerd door artsen (en veelal zonder gebrek aan erkenning en ondersteuning), maakt dat dit mij ertoe drijft om een steentje te willen bijdragen. Ook om wat handen en voeten te geven aan mijn algehele gevoel van machteloosheid. O.a. vanwege mijn eigen biochemische achtergrond en gezinssituatie, ben ik vanaf januari 2022 gevraagd om aan te schuiven bij het NMCB project in wording. Na een korte en prettige kennismaking met onder meer Jos Bosch en Betsy Van Oortmarssen (van de Steungroep ME & Arbeidsongeschiktheid) zijn we vrij snel de diepte ingedoken. Jos’ uitgangspunt was om het ME/cvs Onderzoeksprogramma tot op de letter te volgen, vanuit de kerngedachte dat het een programma ‘door patiënten, voor patiënten’ is. En vanuit die gedachte zijn we als patiëntenorganisaties aan de slag gegaan om iets moois en unieks neer te zetten (niet alleen nationaal gezien, maar ook internationaal). Dit is slechts een klein stukje uit het verhaal van Markus en zijn gezin. Wil jij het hele verhaal van Markus en de onderzoeken bij de NMCB lezen? Kijk dan op onze website (link in bio) #MeAwarenessDay #12mei #LevenMetMe #MeCvsVereniging #pwme #MEcvs
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐏𝐄𝐌? . Considered by all of the ME organisations and charities as the Hallmark symptom of ME… but what is it? . PEM or Post Exertional Malaise is where the symptoms of ME are worsened or new symptoms become apparent after any minimal activity - cognitive or physical that usually was tolerable prior to ME . At any level of severity it interferes with the patients life making any form of “normal” living impossible - at its mildest, it may be that the patient is able to work or stay in education but outside of that, there’s no room for anything else . Once you know your baseline, you can try to live within that (if you’re not entirely bedbound) to avoid PEM and worsening of symptoms - but the horrid factor of PEM is that it can take anything from 12-72hours before it manifests - not always leaving the patient with a signifying point as to what caused it . Of course, if there was a major event in the couple of days before the onset, like a family gathering, going to the doctors etc… you can see what’s caused this flare; it’s just not always possible to know what triggered it making it hard to avoid . Some patients refer to these episodes as crashes, due to the nature of the symptoms almost hitting you like a brick wall and meaning complete rest to try and recover - remembering recovering isn’t back to full fitness - just what is considered that patients “normal” Continued in comments…
Seeing as it was ME awareness day last week, I thought I’d share some of my favourite book recommendations by authors with ME/CFS 💙 These are a few books by authors who have, or have had, ME/CFS during their writing career. While these books don’t feature ME/CFS in the story themselves, in the case of Piranesi, you can feel the isolation and struggle of long-term illness in the writing. As Susanna Clarke said in an interview - “I was aware that I was a person cut off from the world, bound in one place by illness. Piranesi considers himself very free, but he’s cut off from the rest of humanity.” This is one of my favourite books of all time, not just for the fact that the author has ME, but because the book is unlike anything I’ve ever read before. There’s no real way to sum it up, so I always recommend going in blind to this one, to get the best experience (the audiobook is fantastic too!) I’ve also got recommendations for books with characters with ME, young adult and kids novels about ME, as well as non-fiction about living with ME and the illness itself. So keep an eye out for those recommendations in coming days, and perhaps can use this for reading inspiration for our Virtual Tea Party fundraiser for ME this Sunday? ☕️📖
Es muss darüber aufgeklärt werden, was die Krankheit für jeden einzelnen von Euch wirklich bedeutet und welch ein grausamer Mechanismus #PEM tatsächlich ist. Nur so kann und wird sich wirklich und nachhaltig etwas ändern!-aus meiner Rede zum diesjährigen 12.5. #MEAwarenessDay, gehalten in Berlin. #MECFS #LiegendDemo #Berlin #Liegengelassen #meawarenessmonth #PEM #pemistnichtverhandelbar
Honored to do an interview with the amazing David Tuller about why I made the film for #MEawarenessday about my life with severe ME and how being unable to move as a former dancer--makes me feel like a part of myself has been amputated. ♥️ Have a read. Link in the bio #pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #spoonie #banPEM #art2cureME #beard #gayscruff #canyouseeMEnow #balletdancer #zorgbetervoorME #chronicillness #science #nikonz6
happy belated M.E awareness day and!! happy belated diagnosis anniversary 🥳 I over-exerted myself to crap today so I’m writing this up horizontally, with a big fat headache. I figured I actually don’t talk much about my health on this page anymore… unless you’re on my close friends story in which case I’m sooo sorry I have had M.E for nearly 8 and a half years and I received my diagnosis for it just 16 months after I first became unwell. ✨ Myalgic Encephalomyelitis (M.E) is a complex neurological condition that presents with symptoms affecting multiple body systems (nervous & immune system). There’s a huge range of debilitating symptoms, that differentiate from person to person and M.E can range from mild, to moderate, to severe. ✨ lil me is somewhere around mild to moderate, but it fluctuates like a worm on a bouncy castle (first thing that came into my head?) 2024 however has been an absolute shitstorm for me so far!!! from december to the end of feb I was on antibiotics constantly for 3 different infections. which led to me chugging out of date yogurt for weeks as drs can no longer prescribe probiotics - rude? nowadays I’m fine, I think? I don’t want to jinx it, swear I’ll get ill after this my cystitis has been flaring for weeks and my coping mechanism is ignoring it. hayfever, ew. in a shocking turn of events… my bowels are functioning almost normally?? lots of beef. I’m just overall very achey, and absolutely shattered 🥴 #meawarenessday #myalgicencephalomyelitis
𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 - 𝗣𝗮𝘁𝗶𝗲̈𝗻𝘁𝘃𝗲𝗿𝗵𝗮𝗮𝗹 Mijn naam is Hannah. Ik leef al meer dan de helft van mijn leven met ME/cvs. Namens mensen met ME/cvs help ik nu mee met de NMCB. Dat is een samenwerking van onderzoekers en anderen die er mee te maken hebben. We willen ME/cvs beter begrijpen en het leven van mensen die dat hebben verbeteren. Er moet daarvoor nog veel gebeuren. Ik vind het daarom belangrijk om mijn verhaal te vertellen. Voor iedereen die zich hierin herkent, maar ook zeker voor onderzoekers, mensen die in de zorg werken en anderen die meer willen weten over leven met ME/cvs. Hopelijk worden mensen met ME/cvs in de toekomst wél goed begrepen en geholpen. De foto is van een bijzonder moment vorig jaar. Ik kon dichtbij huis met hulp even de natuur in. Dat mis ik nog het meest. Dit is slechts een klein stukje uit het verhaal van Hannah. Wil jij het hele verhaal van Hannah lezen? Kijk dan op onze website (link in bio) #MeAwarenessDay #12mei #LevenMetMe #MeCvsVereniging #pwme #MEcvs
𝐇𝐨𝐰 𝐃𝐨 𝐘𝐨𝐮 𝐆𝐞𝐭 𝐌.𝐄.? . I asked Rory what she would like to know about ME and she asked “how do you get it?” . For me, I had been poorly at the start of 2004 but we didn’t know what it was. I went to the doctor’s and they found nothing wrong - so I was sent home to my parents to recharge… whilst there they took me to their docs and the Epstein Barr virus was detected and it turned out I had Glandular Fever . And from that point on, I’ve never been well. Even in remission it’s hard to define yourself as ‘better’ because you are always one day away from a possible relapse . Most people that develop ME tend to have a bacterial or viral infection like Glandular Fever or Flu. You can also get it after a traumatic event, stress etc… which are all triggers for relapses too, along with the viruses . Some people can just develop it out of nowhere. But everyone can usually pinpoint when they started to feel like something inside is terribly wrong - even if undiagnosed . At the moment, there’s no diagnostic test to prove ME - you have to test for everything else and then meet the symptoms criteria to be diagnosed with it - which makes it incredibly hard to diagnose and treat as the severity is different from one patient to the next . In short, it doesn’t discriminate- anyone can get it, so when you have psychiatric professionals saying it’s all in the head and you can think yourself better - it is so abhorrently wrong, when their are NICE guidelines for ME and it’s a recognised illness and why a lot of people go undiagnosed or feel incredibly neglected
Titelseite des Lokalteil der RP Mönchengladbach eröffnet mit #LightUpTheNight4ME. Das blaue Rathaus am Sonntag Abend zum #MEAwarenessDay sorgte für viel Sichtbarkeit der etwa 500.000 #MECFS erkrankten Kinder & Erwachsenen.
I’ll let you read this. Yesterday, I was threatened with legal action for stating my opinion about Anti-Blackness practices via #UnitetoFight2024. I will be releasing a press release statement on this matter tomorrow at 11am ET as I close this book so that I can continue working so that #Blackpeoplewithlongcovid are seen and heard. Your money and voice support people and causes you believe: if you support Anti-Blackness in #LongCovid + #MECFS advocacy, science, + #socialjustice along with #disabilityjustice, I am saddened by and for you. How can we unite if you don’t unlearn practices that include groups of people who are the most vulnerable? That’s not possible. We shouldn’t even try to plan events without #peopleofglobalmajority. #BIPOC #meawarenessday #longcovidawareness #longcovidrecovery #advocacy #blackpeople #antiblackness #racism #myalgic #chronic
A day late, but we’re working on crip time — We’re pleased to share that #MEAwarenessDay is now official in both New Hampshire and Vermont. Next year, we’ll be tackling Maine! Awareness Proclamations are an important symbolic acknowledgment of our community after so many decades of government neglect. However, we also believe that awareness must come with systemic change that tangibly impacts the lives of people with ME, and that’s where our energy is focused. During #MillionsMissing and year-round, we’re working to build a better future for people with ME in Northern New England. We won’t stop until all of us can access the care and supports that we deserve. In solidarity, #MEAction NNE ❤️ [ID] Official Proclamations declaring May 12th ME Awareness Day in VT and NH with similar language: “Whereas Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or (ME/CFS), is a severe multisystem neuroimmune disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems; and Whereas ME/CFS leaves 25% of patients homebound or bedbound, and as many as 75% unable to work; and Whereas because of stigma and lack of attention by the government and the research and medical communities, patients struggle to access appropriate medical care and rarely recover due to lack of treatments, resulting in loss of hope and thus higher rates of suicide; and Whereas prior to the COVID-19 pandemic, ME/CFS was estimated to affect 1 to 2.5 million Americans, up to [number] in [state], and 17 million worldwide at an annual cost to our country's economy of $18 billion to $24 billion in lost productivity and medical costs; and Whereas the COVID-19 pandemic has since resulted in a significantly higher incidence of ME/CFS and related infection-associated chronic illness, with studies indicating approximately half of long COVID patients meet ME/CFS diagnostic criteria; and Whereas awareness of ME/CFS should lead to increased funding for research by the federal government and private entities and result in better medical care with more accurate diagnosis and appropriate treatments.”
@allontheboard Sending love to everybody affected by ME/CFS. It’s a long-term condition with a wide range of symptoms. Unless somebody has this condition they don’t know how exhausting it can be. #MEAwarenessDay #MECFS #MECFSAwareness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
May 12th is ME/CFS awareness day! 💙 - ME/CFS stands for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, however the chronic illness community prefer to refer to the condition as ‘ME’ as the condition is more than just fatigue. - Symptoms include: - Feeling tired all the time - not being able to do normal and basic activities - Still feeling tired even after resting - unreplenishing sleep - PEM - Post-Exertional Malaise - Brain fog; problems thinking, concentrating, and issues with memory - Having flu-like symptoms - Muscle pain and weakness - Feeling dizzy and sick And many more varying symptoms! - A great and very important campaign to follow, especially on May 12th is #MillionsMissing @millionsmissing - many of us are ‘missing’ when suffering with ME and it’s important that our presence is highlighted - though we may be stuck at home, or bedbound, or missing from what used to be our favourite sport to play or play to act in which we can’t involve ourselves in any more, we still exist and we are doing our best to live our best lives still as an ME sufferer - whatever our lives look like now. - I am one of the #MillionsMissing. Missing from musical theatre and dance. Missing from studying literature. Missing from selling bath bombs. Missing from making coffee. Missing from doing drag.Missing from trampolining and gymnastics. Missing from getting up at a normal time and getting through a whole day without a long nap in between it. I am missing. - Our little fatigued household: My household is a fatigued little flat of three, and we all understand each other. I was diagnosed with ME/CFS aged 14, my partner @em.powered.autistic was diagnosed age 26, and my Dad was diagnosed with Long Covid, which they are now trying to change to an ME/CFS and fibromyalgia diagnosis, aged 54 (I was also diagnosed with fibromyalgia aged 18). - Top ME/CFS resources include: @meassociation @meactnetuk @meactnet @millionsmissing @actionform.e @goblueformecfs 💙💙💙 - ID: in alt text
Gestern war der internationale ME/CFS-Tag. Menschen, die an ME/CFS, dem Chronischen Erschöpfungssyndrom, erkrankt sind, stehen täglich vor enormen Herausforderungen bei Aufgaben, die für die meisten von uns einfache Routine sind. Ständigen Kopf- und Muskelschmerzen sowie ein dauerhaftes Erschöpfungsgefühl mindern ihre Lebensqualität erheblich und verwandeln normale Alltagsaktivitäten in nahezu unüberwindbare Hürden. Im Laufe der Corona-Pandemie sind die Zahlen er Erkrankten drastisch angestiegen. Weltweit sind mindestens 17 Millionen Menschen erkrankt. Auch in Sachsen steigen die Zahlen der Betroffenen. Weit über 10.000 Menschen im Freistaat sind an ME/CFS erkrankt. Warum es so wichtig ist, auf diese Krankheit aufmerksam zu machen, zeigt ein Blick darauf, wie mit ME/CFS-Erkrankten in unserem Gesundheitssystem umgegangen wird. Die Behandlungssituation ist katastrophal. ME/CFS wird bisher immer noch nicht als eine schwere, körperliche Erkrankung anerkannt. Forschung und Lehre zu Ursachen und Therapiemethoden von ME/CFS stecken, wenn überhaupt, in den Kinderschuhen. Weite Teile der Öffentlichkeit haben noch nie von der Krankheit gehört oder wissen nur sehr wenig darüber. Medizinisch ist die Krankheit vollkommen unterversorgt. ME/CFS soll endlich als Krankheit anerkannt werden. Das öffentliche Gesundheitswesen muss mit ausreichenden Mitteln ausgestattet werden, um sowohl Grundlagenforschung, Aufklärung der Öffentlichkeit und Weiterbildung von medizinischem Fachpersonal gewährleisten zu können. Den ME/CFS-Erkrankten fehlt es in unserem Gesundheitssystem am Nötigsten: Nicht nur gibt es kaum medizinische Versorgungskapazitäten, oft genug werden Betroffene noch nicht einmal richtig ernst genommen. Wer sich weiter über ME/CFS informieren will, schaut am besten mal bei @lightupthenight4me vorbei! #lightupthenight4me #mecfs #cfs #chronicfatiguesnydrome #chronischeserschöpfungssysndrom #mecfsawareness #longcovid #postcovid #meawarenessday #millionsmissing #dielinke #dielinkesachsen #linksfraktionsachsen #gesundheitspolitik #gesundheitssystem
💙Unsere Arztpraxis war gestern Abend im Rahmen der Aktion #LightUpTheNight4ME blau beleuchtet. 💙 Am 12. Mai, seit über 30 Jahren, setzt der Internationale ME/CFS-Tag mit verschiedenen Aktionen ein Zeichen der Solidarität für Menschen mit dieser schlimmen neuroimmunologischen Erkrankung. 💙 ME/CFS ist seit langem bekannt, ist aber bezüglich Forschung und Behandlung völlig vernachlässigt worden. Bisher gibt es keine heilenden Therapien, nur symptomatische Ansätze. 💙 Schwerst Betroffene sind teilweise bettlägerig und erhalten oft nicht die notwendige medizinische/ pflegerische Versorgung. 💙 Auch für die Angehörigen der Erkrankten ist es eine verzweifelte Situation, zumal, wenn Kinder oder Jugendliche betroffen sind. 💙 🙏 Danke für die tolle Organisation @lightupthenight4me! 💙 ➡️ Wenn Euch der Post gefällt, bitte liken ❤️, teilen und/ oder kommentieren. Danke! 😍⬅️ Eure Dr. med. Katja Aschenbrenner aus Berlin 🔆 DIE GANZHEITLICHE ÄRZTIN 🔆 Hier könnt Ihr den Blog LEBENDIG LANG LEBEN kostenlos und bequem in Euer E-Mail-Postfach abonnieren: 🎈🤩 https://lebendiglangleben.de Bleibt dabei und folgt uns auf Instagram/ Facebook @lebendiglangleben 😊🔆💚👍 #lebendiglangleben #mecfs #mecfsawareness #mewarrior #longcovid #meawarenessday #mecfsawarenessday #millionsmissing #unheilbar #krankheit
Things to do on the day after #MEAwarenessDay: Talk about #MECFS #PAIS #LongCovid ✔️ Always a pleasure to see you @fhstp_gesundheit 🤩 #physiotherapy Aranet4 thx to @igoe_at - shirt thx to @oeg_mecfs As I told the students the stories of Christoph Ströck and Mila Hermisson, they became silent and their looks horrified. One young woman raised her hand: “I went to school with Mila and Ella. …will she survive?” My heart stopped for a second. 💔💔💔 The fight for raising awareness of ME/CFS sufferers continues. 💪
A day too late for ME Awareness Day because, you know, I got ME/CFS 🤷🏻♀️ I usually feel like I have nothing to add to awareness days, because I feel like the focus should be on severe patients and not the ones who can still function somewhat, like me. But mild ME is not exactly a walk in the park either. In fact, there are many days where I can't walk in the park. When health professionals see me, I fit their preconceived notions of being "just a little tired". But mild ME is also not just being tired. Mild ME is far from mild. [ID: a series of 7 images with text on a turquoise background with paint splatters in the top left and bottom right corner. The first one says "What mild ME/CFS looks like", the next ones are titled At baseline, In PEM or flare-up, Other symptoms, Daily impact and Invisible Illness. The last slide asks "Have you learned anything from this post?" with symbols below for like, comment, share, save. The full text of the slides is in the alternative text] #MEAwarenessday #MEAwareness #MEcfs #MillionsMissing #MyalgicEncephalomyelitis #pwME #ChronicIllness #InvisibleIllness #Spoonie #cfsme #butyoudontlooksick #Dysautonomia #LongCovid #ChronicallyIll #CanYouSeeMEnow #ChronicFatigueSyndrome
HANDIGE LINK PAN heeft in het kader van ME Awareness Day een artikel geplaatst op hun LinkedIn, waarin zij ook verwijzen naar een overzichtelijke map met up to date informatie over ME en andere PAIS, gemaakt door Laura de Vries. Je vind het artikel hier: https://www.linkedin.com/posts/platform-voor-artsen-met-post-acute-infectieuze-aandoeningen-nederland_mecvs-informatie-voor-behandelaars-activity-7195337398904410112-SKSs?utm_source=share&utm_medium=member_ios #MEAwarenessDay #mecvs #MeCvsVereniging #pwme #MEcvs
Yesterday the 12th May was International ME/CFS awareness day and World ME Day 2024 Our director Laura Dent was diagnosed with ME in 2006 after suffering with the illness from childhood, although difficult, it’s important to take the positives that come from all situations, So Fresh & So Clean wouldn't be the company it is today without the learnings from hard times. Back in 2006 it was very difficult to get a diagnoses, we’ve come a long way from there but we still have progress to make to understand ME more and how we can support those in the work place who suffer with chronic conditions. Laura worked in a corporate business at the time, like most they were not supportive or accommodating in adapting work life and was only interested in working her out. Despite the occupational therapist advising she had a strong case against the company for compensation, the stress along side her illness was too much and she accepted her fate and left the company. When So Fresh & So Clean started employing staff in 2016 Laura and Neil wanted to make sure they created a supportive and inclusive work space for all. It’s a common misconception that HUMAN’s dealing with illnesses don’t want to or are incapable of being a strong employee which simply isn’t true. We believe a strong work place is based on a variety of skills and experiences, it just takes a small amount of listening and adjusting. What's an example of turning your weakness into your super power? #meawareness #meawarenessday #chronicfatiguesyndome #localbusiness #swindonbusiness #cleaning #professionalcleaner
Gisteren las je in onze post over Wereld Fibromyalgie Dag. Maar niet te vergeten en net zo belangrijk (!) was het gisteren, op zondag 12 mei, ook: 🌍🌻 Wereld ME/cvs Dag – International ME Awareness Day 🌻🌍 Dit willen we vandaag heel graag nog onder de aandacht brengen. ◾Wat is ME/cvs? ME staat voor Myalgische Encefalomyelitis/ Chronische Vermoeidheid Syndroom. Het is een ernstige chronische multisysteem ziekte, die niet verward moet worden met chronische vermoeidheid. Het ontstaat vaak na een virale infectie. Er zijn afwijkingen in meerdere lichaamssystemen die het functioneren en de kwaliteit van het leven ernstig kan beperken. ◾Hoe ontstaat ME/cvs? ME/cvs is meestal een chronisch gevolg van een (virus)infectie. Ongeveer 10 tot 12% van degenen met een ernstige infectie ontwikkelt ME/cvs. Iedereen kan ME/cvs krijgen. Ook als je gezond leeft en nog nooit ergens last van hebt gehad. De ziekte treft mannen, vrouwen en kinderen van alle leeftijden en bevolkingsgroepen. In Nederland zijn naar schatting 30.000 tot 40.000 patiënten. ME/cvs verloopt bij iedereen anders. De klachten kunnen variëren van mild tot ernstig en kunnen ernstige invaliditeit veroorzaken. De beperkingen en gevolgen van de ziekte zijn groot en niet altijd zichtbaar Meer informatie is te vinden op onderstaande accounts en patiëntenverenigingen @mecvs.nederland @steungroep ✍️Wil je helpen om meer awareness te creëren over ME/cvs en welke invloeden dit heeft op jouw dagelijks leven? Stuur dan een e-mail naar [email protected] Wij hebben een kaart voor ME/ cvs beschikbaar op de website van #hiddendisabalitiessunflowerNL, zie afbeelding en de link in de bio. #ME #CVS #WereldMEDag #MEAwarenessDay #hiddendisabilities #hiddendisabilitiessunflowernl #nietzichtbaar
This month, on ME Awareness Day, we unite to shed light on Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). It's a day to amplify the voices of those affected by this debilitating condition and advocate for greater understanding and support. @Anna / M.E. myself and I ME is more than just feeling tired. It's a complex, chronic illness that can significantly impact one's quality of life, leaving individuals battling fatigue, pain, cognitive impairments, and a myriad of other symptoms. Let's come together to: 🌟 Educate ourselves and others about ME/CFS. 🌟 Support those living with the condition with empathy and compassion. 🌟 Advocate for increased research funding and medical support. By raising awareness and standing in solidarity, we can make a meaningful difference in the lives of those affected by ME. #MEAwarenessDay #MECFS #ChronicIllnessAwareness
This ME/CFS and Fibromyalgia Awareness Week we’re at Royal Hallamshire Hospital helping to spread awareness and answer questions about ME/CFS and Fibromyalgia with passing members of the public and healthcare professionals. Come and say hi! We’re there until 5pm today, Monday 13th May and 9am - 5pm tomorrow, Tuesday 14th May. Today the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Service for South Yorkshire and North Derbyshire is there too. We’re set up in the the main hospital dining room on D floor of the tower block at the Royal Hallamshire Hospital. Hashtags: #GlobalVoiceForME #WorldMEDay #ChronicFatigueSyndrome #ChronicIllness #Spoonie #MECFS #MyalgicEncephalomyelitis #pwME #Fibromyalgia #FibroWarrior #MEFibromyalgiaAwarenessDay #MEAwarenessDay #FibromyalgiaAwarenessDay
I agree with them. We will not be silenced and I (and I’m hoping we?) definitely won’t shut up!!! Let’s keep pushing. Let’s be loud!!!!!! Post by Gigi (second on the first row): https://www.instagram.com/p/CAGE37jgGYv/?utm_source=ig_web_copy_link #MEawarenessmonth #MEawarenessday #millionsmissing #MEsuperheroes
It is #MEAwareness month. Some of us may feel that we have not progressed much in the past years. Do not lose hope. I can see small but very promisings trends developing. I will not stop doing advocacy work. If a mere seed can do this, so can we. #MillionsMore #MEAction #YouAreNotAlone #MillionsMissing #MEAwareness #MEAwarenessDay #MECFS
Yesterday was #WorldMEDay. I wrote and shared these words from one of my usual spots: my bed. The things I wanted to say ended up being too long for a post caption, so I split them up and shared them on stories instead. Now that the stories are about to expire, I’ve screenshotted them and saved them here for posterity. I don’t know how easy it will be to read it in this format, but I will save the original stories to the ME/CFS highlight on my profile and will copy in the text image descriptions below & in the comments. #myalgicencephalomyelitis #WorldMEDay #GlobalVoiceForME #AllyForME #MEAwarenessDay Slide 1 text: ‘Today is #WorldMEDay. This month marks my 16th anniversary of living with ME and my 4th anniversary of becoming 90% housebound. I have written something (from my bed of course) and I would really appreciate you taking the time to read the following stories. Slide 2 text: ‘It seems a kind of magic to me now, the way most people are able to go about their days. The act of walking out of my own front door and down my own street has become so impossible that I can’t quite comprehend that other people can just do it without even thinking about it. If you are able to take your children to the park or dance in your kitchen or stand in a queue or take a dog for a walk or pop to the shop to buy something to eat, to me you are performing an extraordinary act. I think it’s these simple, everyday things I miss the most now that they have become neither simple nor everyday.‘
𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵 - 𝗣𝗮𝘁𝗶𝗲̈𝗻𝘁𝘃𝗲𝗿𝗵𝗮𝗮𝗹 Mijn naam is Naomi en ik ben al 5,5 jaar ziek. Het begon bij mij tijdens mijn eindexamen stage in 2018, ik was toen 19 jaar. Na een infectie kreeg ik grieperige/verkoudheidsklachten, ik ben hier nooit helemaal van hersteld. De uitputting, krachtsverlies, duizeligheid, et cetera bleven. Een diagnose en duidelijkheid kwamen pas in 2021. Zodra ik de diagnose kreeg via een specialist in Amsterdam, volgde een medicinale behandeling (die helaas geen effect had) en kreeg ik een ergotherapeut om onder mijn grenzen te blijven en PEM te voorkomen. In april 2022 heb ik me als vrijwilliger aangemeld bij de ME/cvs vereniging, waarna ik kon starten als coördinator patiënten vertegenwoordiging. We organiseren bijeenkomsten en PGO cursussen voor de patiëntvertegenwoordigers van zowel de Steungroep als de ME/cvs Vereniging. Deze patiëntvertegenwoordigers lopen mee bij de deelprojecten van het NMCB. Zij leveren hierin een waardevolle bijdrage aan elk onderzoek, waardoor ook de onderzoekers het belang van onderzoek, diagnose en behandeling inzien. Dit is slechts een klein stukje uit het verhaal van Naomi. Wil jij het hele verhaal van Naomi lezen? Kijk dan op onze website (link in bio) #MeCvsVereniging #pwme #MEcvs #MeAwarenessDay #12mei #LevenMetMe
I’m late because I’m sick • @smileforme ME Awareness Day 🩵 Smile For ME raises awareness of Myalgic Encephalomyelitis by sharing personal accounts from ME sufferers and their carers through our segment ‘Share a story. By listening to the ME community share their experiences you can learn first hand how ME impacts the lives of those affected: www.smileforme.org.uk/shareastory ID: Half pale blue half white background. The words ‘ME Awareness Day 12th’ at the top. Underneath ‘International ME Awareness Day was created by Tom Hennessy in 1992. 12th May was chosen as it coincided with the birth date of Florence Nightingale, the founder of modern nursing. Florence Nightingale was bedridden for a long period of her later life due to an unidentified chronic illness which has subsequently been attributed as ME.’ with a blue awareness ribbon to the side. On the white side of the image is the Smile For ME logo and the words ‘Smile For ME raises awareness of Myalgic Encephalomyelitis by sharing personal accounts from ME sufferers and their carers through our segment ‘Share a story’. By listening to the ME community share their experiences you can learn first hand how ME impacts the lives of those affected.’ And ‘smileforme.org.uk/shareastory’ website url. Hashtags: #SmileForMECharity #PWME #ME #MECFS #MyalgicEncephalomyelitis #MEAwareness #Carers #Smile #SmileForME #Charity #MEAwarenessDay #12thMay #May12
'A Tarnished Breeze’ Oil on canvas, 79 x 103cm framed, 2024. birch leaves shimmer in the sky, in the water . . . a tarnished breeze A blue painting to acknowledge International ME Awareness Day 💙 May 12th is a day to recognise and stand in solidarity with the millions of individuals worldwide impacted by this debilitating condition. #myalgicencephalomyelitis #abstractpainting #abstractoilpainting #abstractlandscape #autmnpainting #bluepainting #birchleaves #chronicillness #chronicallyill #chronicpain #contemporarypainter #expressivepainting #largeoilpainting #lateautumn #meawareness #meawarenessday #oiloncanvas #oilpainting #silverbirch
Another #MEAwarenessDay spent asleep and not doing activism. There are so many causes I passionately care about, but instead of standing up for what I believe in, I am forced to sleep and rest by my weak body and mushy brain. I want to commend @thechroniccolab for the brilliant activism they've been doing. Please take action via the links in my bio to call on your country to become a #GlobalVoiceForME via @worldmealliance and send informative postcards to your doctors #TeachMETreatME via @meactnetuk I will be sharing some petitions and fundraisers for ME patients in need, on my stories. Please sign, and give if you can. Thanks to @m.e_and_more for the slides. #GoBlueForMECFS #WorldMEDay #ExposeMEnow
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐌.𝐄.? . This is an intriguing question as it’s quite a complicated answer when you dissect the condition . To simplify it: it’s a complex chronic and neurological disorder that effects multiple body systems . Often triggered after a viral or bacterial infection in which the people seem to never fully recover . It has a vast array of symptoms (which will be covered this week) which can be triggered or worsened by any form of effort or activity - especially if you push yourself . ME is a fluctuating disease in that the symptoms can be ever present, they can ease, then worsen again. Relapses happen that make you worse. Some patients don’t even get the relief of fluctuations; they are constantly sick and quite often bed or house bound . ME disrupts the lives of those with it, and the family watching on or often caring for the patient. Even if you have mild ME, you may be able to hold down a job or manage education - it unfortunately leaves you incapacitated afterwards and requiring a full weekend of sleep or rest to go again . Each case is different also, so although the symptoms can mirror each other - each person suffers in their unique way making it really hard to treat or manage . No cure or diagnostic test as of yet (though with research such as DecodeME, it could be closer) but the NICE guidelines now have clearly determined a clear diagnostic requirement to be diagnosed with ME . Also to note, Long Covid patients are now falling into the diagnostic requirements for ME/CFS
There's been a lot going on over here in the past week. Here is an #meawarenessday proclamation from Montgomery County, a photo of our pillow case, a picture from our Georgetown University #millionsmissing event, and a photo of our flyers for our two #TeachMETreatME events. @meactnet
For #MEAwarenessDay on #May12, I'm flashing back to a decade ago in Borneo, Malaysia in 2014 before ME stole my life. I traveled to 35+ countries before MECFS came along. I caught a viral infection and then I developed ME which is a post viral illness. I'm posting this early for @openmedf and their #FlashBackFridayOMF project. I participate in world ME awareness events every year but as it turns out, I had a major PEM crash this weekend and I'm still suffering. Trying to catch up on the last few details of my awareness campaigns for May 12 and not feel bad about the things I couldn't do. This is my life now. #ChangeTheFuture4Me #MillionsMissing #MayMomentum #MySeveralWorlds #May12 #BlueSunday #GoBlueForMECFS #GoBlueForACure #MECFSAwareness #MECFSAwarenessDay2024 #CanYouSeeMENow #LifeWithPain #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia #MECFS #InvisibleIllness #MEAwarenessHour #pwME #ButYouDontLookSick #disability #StillSick #AwarenessMatters #ChronicTruths #MyChronicLife #SickSelfie #MentalHealth
ME (and comorbities) made *me* extra aware of itself on #meawarenessday so I wasn’t able to post on the day but I’ve loved seeing what others are doing. I’m an ambulatory wheelchair user to help me pace my moderate #ME. In general, I struggle with being upright for a long time due to craniocervical instability. This is my forget-me-not photo in honour of #goblueformecfs and some awareness images reposted from the @goblueformecfs Instagram account. Credit to @goblueformecfs for awareness infographics.
I am housebound with ME and greatest realistic fear is that my condition will deteriorate, and I will be stuck, bedbound, unable to care for myself. But millions of people are already suffering in that state Despite this, we do not teach ME in med school and we are not funding research adequately This disease is common. It has a 1% prevalence at minimum (likely much higher thanks to the pandemic) How can we say we live in a civilized 1st world society, when we do not take care of the disabled? #MEAwarenessDay
For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white woman’s disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was targeting white, black and brown people equally, as well as affecting men, children and the elderly. ME continues to remain a disease that goes largely undiagnosed, especially in minority populations. Read more here> https://www.meaction.net/2020/05/21/when-poc-cant-get-a-diagnosis-go-unseen/ #goblue #goblueformecfs #goblueforme #mecfs #myalgicencephalomyelitis #globalvoiceforme #millionsmissing #meawarenessmonth #meawareness #meawarenessday #bluehair #vangogh #tattoo
Dr. Chu: Recently, many media outlets and health organizations have reported that people of color are more likely to be infected and die of COVID-19 when compared to their numbers in the population. The reason why is likely multifactorial, with some pre-existing factors magnified by and other factors specific to this pandemic. Examples of the former include higher poverty rates, lower educational levels, and financial barriers to accessing healthcare. Examples of the latter include an inability to work virtually/ remotely: a third of Caucasian workers are employed in jobs that allow these accommodations while only half that percentage of Latinx and Black workers have these options. Of course, these factors also interact with each other: people stocking grocery stores or feeding seniors are at higher risk for infection yet their employers might not offer a living wage or adequate health insurance benefits. Continue reading here > https://www.meaction.net/2020/05/21/when-poc-cant-get-a-diagnosis-go-unseen/ #myalgicencephalomyelitis #meawareness #millionsmissing #mecfs #meawarenessmonth #meawarenessday #bluetea #goblueforme #goblueformecfs #goblue #biscuits
For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white woman’s disease in the media. Black people were told they can’t get this disease, and went unseen and undiagnosed. Studies finally confirmed what the ME community already knew: the disease was targeting white, black and brown people equally, as well as affecting men, children and the elderly. ME continues to remain a disease that goes largely undiagnosed, especially in minority populations. Here to continue reading> https://www.meaction.net/2020/05/21/when-poc-cant-get-a-diagnosis-go-unseen/ #mecfs #meawarenessmonth #meawarenessday #meawareness #bluesocks #compressionsocks #bluetea #biscuit #goblueforme #goblue #goblueformecfs #myalgicencephalomyelitis #millionsmissing