Liste des hashtags les plus populaires par sujet #MYALGICENCEPHALOMYELITIS

“Chronic Fatigue Syndrome” is a minimizing and misleading name. What we experience is so much worse than the fatigue, exhaustion and tiredness that able bodied people feel. ⠀ ⠀ What we experienced is more aptly described as “near paralytic weakness.” We are in such a low metabolic state that standing, moving, or thinking are beyond our capabilities. 25% of people with CFS become largely or entirely bed-bound, sometime for the rest of our lives. Our symptoms are far more severe than “fatigue.”⠀ ⠀ The primary, universal symptom to CFS is “Post Extertional Malaise” or PEM. We experience PEM when we push ourselves beyond our limit. For able bodied people, their limit may be running themselves ragged for weeks at a time. For people with CFS their limit may be going out for dinner, going on a short walk, or even sitting up for an hour. The most simple things may trigger PEM. The primary symptoms of PEM are near paralytic weakness, inability to tolerate light or noise, the feeling that you are dying, confusion, and extreme pain. These “crashes” can last hours, days, weeks, months or even years. ---------------------------------- By @mecfswarrior Instagram.com/mecfswarrior ---------------------------------- #MEawarenessPics #MyalgicE #SevereME #pwME #MEcfs #MyalgicEncephalomyelitis #MillionsMissing #CanYouSeeMEnow #EndMEcfs #MillionsMissingSpeakOut

|I’m not faking being ill, I’m faking being well| • Here I am as I am most of the time: in bed, in need of a shower, unbrushed hair, wearing the same pjs for days in a row. I’m knackered, exhausted, bone tired, in pain, too hot, too cold, my muscles don’t work very well, keeping my eyes open is an effort, I can’t think properly, I’m lightheaded when standing, I can make it to the bathroom and back but the stairs are intimidating and regularly becoming too big a challenge for me. Also, here I am as I am when I leave the house for an adventure (hospital appt, cafe date, wee day out somewhere): I’ve showered, my hair is nice, I’ve got human clothes on, wearing jewellery and make up and I’m smiling. I look healthy and happy and have borrowed energy because of the adrenaline I’m running on. I’m still symptomatic but you can’t tell that can you? • The point of this post is basically just to say I am the same person in both kinds of photos. The highlight reel of trips and adventures out of the house represents me just as much as the raw moments of pj clad desperation, pain and fatigue whilst bedbound. They are both me. I am chronically ill and symptomatic in both. • I think it’s important to occasionally have a wee reminder that not everyone’s illnesses are visible 100% of the time. Sometimes it’s good to have a moment’s reflection on perspective. Chronic illnesses are often invisible but even when they are not, sufferers can often conceal them in order to feel more human/‘normal’ or better about themselves and their appearance. • If you see me looking well, it’s makeup. If you see me being giddy and happy it’s because that’s my character! I either have a spare spoon of energy or I’m running on adrenaline but either way it doesn’t cancel out my conditions, mean I’m recovered or that I’ve been faking being ill. Equally, if you see me looking knackered and ill, please don’t assume I’ve lost my positivity and tell me to stay positive; it just invalidates how I am feeling and the symptoms I am experiencing. {Cont}

#chronicfatigue #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #invisibleillness #chronicillness #chronicallyill #canyouseemenow #potsie #spoonie #dysautonomia #chronicpain #spooniewarrior #youdontlooksick #postexertionalmalaise #chronicillnesswarrior #dystonia #posturalorthostatictachycardiasyndrome #tooyoungtobesick #fibromyalgia #sensoryoverload #autoimmunedisease #ehlersdanlossyndrome #lyme #lupus #chargie #chargiewarrior

|#BlueSunday2019| • We went out yesterday and ate cake in a cafe. My cake was rainbow cake and I’ve never been more excited about cake and usually I’m only really a fan of chocolate fudge cake but I’ve never eaten rainbow cake before so it was an exciting time. • I’m using yesterday’s cake adventure as my contribution to #BlueSunday and will be donating the cost of cake and a coffee to @theslowlane_me’s fundraiser page. She’s also running a #BlueSundayGiveaway this year too which is fun! Anna created Blue Sunday (also known as #teapartyforME) as a spoonie friendly way of fundraising for #MEAwarenessDay. You can participate with a simple bun/slice of cake and a good old cuppa from the comfort of your own bed; just take a pic, share it and donate a couple of quid, and it’ll all help towards raising awareness and funding research for Myalgic Encephalomyelitis, which is a b*tch of a condition that doesn’t get anywhere near enough attention from the medical community or scientists... So it’s our job to change that around. By eating cake! • I’m late in bringing this topic up, I should have given you fair warning to get your cakes at the ready but it doesn’t mean it’s too late to still take part! So get some treats and do your part in helping us out!! • I’ll leave Anna’s fundraising page link in my bio so you can head over and donate - if you feel like it. No pressure at all, we know money can be tight but if you’ve a couple £’s spare pocket money going and feel generous, it would be super mega greatly appreciated!! • Ok, with that all being said, I’m done. But the biggest of thank yous to everyone who has put so much effort into and been involved with all the #MEAwareness stuff this week, it’s been fab! Check out the hashtags I’ve included throughout this post and I’ve also tagged some pages/people (from the top of my mind) who you should check out for more info and insight into life with M.E: @meactnet @meassociation @millionsmissing @hollytreekitchen @thisthingtheycallrecovery @justagalwithme @chronicallyhetty @mindfullyevie @memyselfand_m.e @nnkmll . *please maybe tag other people in the comments to help folks reach similar pages and make new friends?

Quick & very basic OOTD because this is the third time I’ve got dressed in “people clothes” this week. Plus I did my makeup. That deserves to be documented right? ‍♀️ - Jumper from @hm (but thrifted) - it’s slightly cropped & has zips on either side which I love! Jeggings are @primark - normal jeans are far too uncomfortable atm! Boots are from @dollskill and are all I’ve ever wanted! - For the last few years, I’ve wanted to do more outfit (& makeup) posts but I’ve just not had the energy to do either. For someone who doesn’t get dressed often, I do actually quite like picking out & styling outfits that I feel help me express myself. Would anyone want to see more outfit posts? Let me know!

#chronicfatigue #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #invisibleillness #chronicillness #chronicallyill #canyouseemenow #potsie #spoonie #dysautonomia #chronicpain #spooniewarrior #youdontlooksick #postexertionalmalaise #chronicillnesswarrior #dystonia #posturalorthostatictachycardiasyndrome #tooyoungtobesick #fibromyalgia #sensoryoverload #autoimmunedisease #ehlersdanlossyndrome #lyme #lupus #chargie #chargiewarrior

Stanford Medicine's SCOPE covers the new OMF-funded research publication on "A Nanoelectronics-blood-based diagnostic biomarker for ME/CFS." "Now, patients with the devastating disease ... may find vindication in a newly identified diagnostic test that provides the first scientific evidence of the disease. ... With strong preliminary evidence of a diagnostic tool for ME/CFS, Davis and his colleagues are moving forward to test it in more patients. They are also planning to use the nanoelectronic assay to screen for drugs that can help stabilize the blood samples from ME/CFS patients." Copy and paste this link to read the article: https://stan.md/2V5wVbH #EndMECFS #MECFS #PwME #MyalgicE #OMF #OpenMedicineFoundation #millionsmissing #myalgicencephalomyelitis #Nanoneedle #RonDavis #StanfordUniversity #StanfordMedicine

#chronicfatigue #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #invisibleillness #chronicillness #chronicallyill #canyouseemenow #potsie #spoonie #dysautonomia #chronicpain #spooniewarrior #youdontlooksick #postexertionalmalaise #chronicillnesswarrior #dystonia #posturalorthostatictachycardiasyndrome #tooyoungtobesick #fibromyalgia #sensoryoverload #autoimmunedisease #ehlersdanlossyndrome #lyme #lupus #chargie #chargiewarrior

#chronicfatigue #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #invisibleillness #chronicillness #chronicallyill #canyouseemenow #potsie #spoonie #dysautonomia #chronicpain #spooniewarrior #youdontlooksick #postexertionalmalaise #chronicillnesswarrior #dystonia #posturalorthostatictachycardiasyndrome #tooyoungtobesick #fibromyalgia #sensoryoverload #autoimmunedisease #ehlersdanlossyndrome #lyme #lupus #chargie #chargiewarrior