#endmecfs

[myalgicencephalomyelitiscfstom]

https://twitter.com/CaroleBruce17/status/1196745765286227968

[katesofabb-blog]

Keito's Origins™ || Volume 1 Chapter 2 I swear to God, I'm gonna make a better one, this one is badly organized;-; Fucking Medibang you had one shitty job. Anyways, hope my trash satisfied shit. Bai

[cheribourquedesigns-blog]

Sold one of my Myalgic Encephalomyelitis Awareness Necklaces. This handcrafted solid fine silver pendant with faceted sapphire gemstone is going to Germany. 😊 . 💙For every ME necklace sold I donate $25.00 USD to ME/CFS research. I donate to the Open Medicine Foundation.💙 . #handcrafted by #etsyseller @cheribourquedesigns. #handmade in #victoriabc #canada. More will be coming soon to my #etsyshop. . #myalgicencephalomyelitis #me #endmecfs #pwme #myalgicencephalomyelitisawareness #meawarenessday #chronicfatiguesyndrome #mecfs #spoonie #invisibleillness #invisibleillnessawareness #butyoudontlooksick #chronicillness #chronicallyill #awarenessjewelry #awarenessribbonjewelry #may12thawarenessday #jewelry #silverjewelry #handcraftedsilverjewelry #sapphire #sapphirejewelry (at Victoria, British Columbia)

[cherylbenson]

Please VOTE for @unrestfilm we need the exposure to public and healthcare for #MyalgicEncephalomyelitis #pwme #millionsmissing #Repost @meactnet with @get_repost ・・・ We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award-- after all, this film was especially made to serve audiences like you. Voting for the Audience Award opens today Monday, June 18th and ends on Friday, June, 29th, 2018 at 1 PM Pacific Standard Time. Cast your vote now! http://www.pbs.org/independentlens/blog/2017-18-independent-lens-audience-award-survey/ [Will DM the direct link upon request!] If you found solace in watching Unrest, if you felt seen, if Unrestmoved you or your friends, family, neighbors to greater understanding and empathy, please vote and encourage others to vote as well. Winning this award would mean renewed interest in Unrest and therefore, further visibility for Myalgic Encephalomyelitis. Let’s keep elevating ME every chance we get until the neglect and stigma are gone for good. Let’s make some noise for ME! #timeforunrest #millionsmissing #ME #meaction #may12 #millonesausentes #endmecfs #solidarity #healthequity #endthestigma @pbs @independentlens

[irishdreaming]

I remember when I was trying to get my SSDI approved, they sent me to a psychiatrist. After I told him why I was there & my symptoms, he was confused. He even said he didn't understand why I was referred to him for a physical illness!! 😳😡 Repost @jesbelkovgordon ・・・ I can't believe it's still happening! Sign the petition!!! https://my.meaction.net/petitions/stop-graded-exercise-therapy-trials-for-me-cfs #stopGET #stopCBTforME #stopthemadness #mecfs #endmecfs #pwme #meaction #millionsmissing #myalgicencephalomyelitis #chronicfatiguesyndrome #mecfswarrior

[chronicallyhopefulblog]

We are the #MillionsMissing from our lives due to Myalgic Encephalomyelitis. A debilitating neuroimmune disease which affects all body systems. M.E. is often triggered by a viral infection, much like COVID, and can affect adults and children of any health and fitness level and any age. The majority of people with M.E. are unable to maintain their usual work and social life routines, finding it difficult to keep up with daily living activities even when moderately affected. An estimated 25% are severely affected, being housebound or even bedridden for years on end. A perpetual lockdown. Despite the huge numbers of people affected and the impact it has on not only the patients but their families and communities as a whole, governments worldwide are still not allocating enough funding for biomedical research. There are various, highly esteemed, scientists studying this disease worldwide, but there is still no generally acceptable treatment or cure. Ongoing biomedical research is vital, not only to end the suffering of the millions of people with M.E. but also to better understand why it happens to some people and not others. We need answers. Currently research is very much dependent on donations to keep going at a steady pace. You could help by donating whatever you can afford, even just the cost of a coffee at a café. Visit www.omf.ngo to support vital M.E. research. Thank you for your support. _______________________________________ #MyalgicE #MEcfs #pwME #SevereME #MyalgicEncephalomyelitis #cfsme #PostViral #CovidLonghaul #EndMEcfs #Isolation #Lockdown #Housebound #InvisibleIllness #InvisibleDisabilities #ChronicIllnessWarrior #ChronicLife #SpoonieLife https://www.instagram.com/p/COsEZwpjgCm/?igshid=1epp6qai0y099

[chronicallyhopefulblog]

Meet some of the #MillionsMissing from their lives due to Myalgic Encephalomyelitis. A devastating neuroimmune disease which affects every bodily system. M.E. is most often triggered by a viral infection, like COVID or EBV, and can affect adults and children of every health or fitness level and any age. M.E. doesn't discriminate. Anybody can get it at any time. The majority of people with M.E. are unable to maintain their usual work and social life schedules, even finding it hard to keep up with daily living activities. An estimated 25% are severely affected, being housebound or even bedridden for years on end. Some are paralysed and tube fed. An unending lockdown. Despite the huge numbers of people affected and the impact it has on patients, their families and their communities as a whole, governments worldwide are still not allocating enough funding for biomedical research. There are numerous, highly respected, scientists studying this disease worldwide, but there is still no widely acceptable treatment or cure. Ongoing biomedical research is important, not only to ease the suffering of the millions of people with M.E. but also to better understand why it happens to some and not others. We need answers. Currently research is heavily dependent on donations to keep going at a steady pace. You could help by donating whatever you can afford, even just the cost of a coffee at a café. Please visit www.omf.ngo to support vital M.E. research. Thank you for your support. _______________________________________ #MyalgicE #MEcfs #pwME #SevereME #MyalgicEncephalomyelitis #cfsme #PostViral #CovidLonghaulers #EndMEcfs #Isolation #Lockdown #Housebound #InvisibleIllness #InvisibleDisabilities #ChronicIllnessWarrior #ChronicLife #SpoonieLife https://www.instagram.com/p/COvrQCDjf72/?igshid=1pmceujpc73ub

[chronicallyhopefulblog]

#TinyTaskTuesday ✨Tidy Just One Surface: Sometimes tidying just one surface can make such a difference to a room. So this week we will be focusing on doing just one surface. If you can manage a couple of surfaces in the week, that's great, but even just one is worth celebrating. For me it's my art desk. As you can see in the photos, it was piled high with all sorts of random things. When we moved my room around last year and brought the art desk in here, I became unwell and wasn't able to use it, I wasn't even able to tidy up and find places for all the things that were misplaced in the move. So it's just been snowed under since. It was about time it got sorted. I'm so happy now that it's done. My room is starting to look tidy and uncluttered. That makes for a more uncluttered mind too. And I'm excited about the potential to actually use the desk again - maybe get my acrylics out and paint again! So, set your timer, take it easy, go at your own pace, rest lots between sessions and lets get just one surface tidied this week. About Tiny Task Tuesday: Training ourselves to pace and break activities up into smaller tasks. Creating sanctuary at home one tiny task at a time. You're welcome to join us! You can do a different tiny task if you want to, let us know in the comments what you tackled this week. _______________________________________ #MyalgicE #MEcfs #pwME #SevereME #MyalgicEncephalomyelitis #cfsme #MillionsMissing #PostViral #CovidLonghaul #EndMEcfs #Isolation #Lockdown #Housebound #InvisibleIllness #InvisibleDisabilities #ChronicIllnessWarrior #ChronicLife #SpoonieLife https://www.instagram.com/p/CPCBY_1j3LB/?utm_medium=tumblr

[chronicallyhopefulblog]

Imagine spending 6 YEARS in lockdown. This has been my reality. In 2015 I caught a virus from which I never recovered. Overnight my life changed. I remember the very day: It was 1 April, I was on Easter holiday in Italy, visiting my family. That morning I went cycling with my Dad. We cycled 8km that morning. When we returned home, my voice was gone and I had earache. That night I went to bed early and I’ve spent most of my days in bed since. Living with Myalgic Encephalomyelitis is like a permanent lockdown, but worse. You’re horribly ill and there’s no end in sight. I‘m running on super low energy levels, at a cellular level, so most daily living activities are out of my range of ability now and whatever I do spend my time and energy on can have detrimental effects. On Wed I took this photo with the poster I had made earlier in the day. Now if you scroll along, you’ll see what I looked like for most of yesterday. You see, a few things accumulated over the course of the last few days and this was the result. Firstly, I forgot to take my supplements and LDN for about 2 days at the end of last week. Then on Sunday I had a shower, which I regretted while still under the water. Usually I shower on Mon or Tues, so a day or two early after not taking supplements for a few days was not a good idea. Despite the exhaustion caused, that night I couldn’t sleep. Of course Mon and Tues were harder on me physically due to all the above. Add to this the self-imposed commitment to raise awareness this month (it takes much effort mentally and physically to create graphics and compose meaningful captions) and yesterday’s crash was the result. The few things I did this week, I could have done in an afternoon before falling ill. But now they cause pain, shaking, light sensitivity, utter exhaustion and weakness for days on end. This is the reality of M.E. ________________________ #MEcfs #pwME #MyalgicEncephalomyelitis #cfsme #MillionsMissing #PostViral #EndMEcfs #Lockdown https://www.instagram.com/p/COkUzGrjloD/?igshid=r1ds4d3mnrxq

[chronicallyhopefulblog]

Quotes about M.E. by Dr Nancy Klimas: They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy. Most patients with Chronic Fatigue Syndrome have non-restorative sleep. And that comes from a lack of deep sleep which is called Slow Wave Sleep in the sleep clinic - it's very limited to none. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. Less than half the doctors in this country know the name of this illness. I don't know another illness like that. - Dr Nancy Klimas is the Director at the Institute for Neuro Immune Medicine at Nova Southeastern University in Miami and Ft. Lauderdale, Florida and Director of Clinical Immunology Research, Miami VAMC. _______________________________________ #MyalgicE #MEcfs #pwME #SevereME #MyalgicEncephalomyelitis #cfsme #MillionsMissing #PostViral #EndMEcfs #Isolation #Housebound #InvisibleIllness #InvisibleDisabilities #ChronicIllnessWarrior #ChronicLife #SpoonieLife https://www.instagram.com/p/COfcPoyDJGm/?igshid=gf16vur45mdt

[myalgicencephalomyelitiscfstom]

May is ME/CFS Awareness month

[cherylbenson]

#Repost @openmedf with @get_repost ・・・ Join us! This Saturday for #millionsmissing find protests and tool kit information at @meactnet under #millionsmissing WE NEED ALLIES TO DEMAND HUMAN RIGHTS, Medical care with treatments, research funding and dignity. . . #EndMECFS #OpenMedicineFoundation #ChronicFatigueSyndrome #cfs #mecfs #pwme #invisibleillness #millionsmissing #fibromyalgia #chronicpain #fibrowarrior #butyoudontlooksick #supportthecause #raisingawareness #donation #makeachange #makingadifference #chronicallyill #findacure #stanford #mecfs #MyalgicEncephalomyelitis #disabled #disability