#meawarenessday

[nj-stone]

All of them snollygosters...@OnlyEnnuiI first made this poster for an #MEAwarenessDay poster competition in 2008. It won! Nothing has changed! #MillionsMissing #MEAwarenessDay2023

[oystertongue]

social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness. 

Social scientists studying medicine have been using the term "contested illness" to describe me/cfs and other marginalized illnesses for maybe 15-20 years now. the term flags controversy - or, as some researchers put it, ambiguity - in the medical literature around an illness. "Contested" here describes not just disagreement about the finer details of etiology or treatment, but wholesale doubt about the existence of the illness as a distinct and discrete medical entity - contested illnesses are ontologically contested. 

A useful concept? well...maybe. (No. It's no.) Describing an illness as "contested" necessitates that we reproduce the medical literature as genuinely ambivalent, and in the case of me/cfs, this is downright misleading. We certainly do not know everything about me/cfs, but there *is* robust evidence for immunological and neurological abnormalities among me/cfs patients. There has been for 30 years. and the evidence that pwme/cfs are really experiencing something else entirely - depression, or deconditioning, or whatever - is comparatively extremely thin. Like...cheesecloth. 

On the surface, it might look like the medical lit contradicts itself, but we as researchers can't this at face value. we know that medical research is political, mired in social and institutional controversy, subject to bias and manipulation  - this is not news! but the term 'contested illness' captures none of this - in fact, it reproduces more controversy where there should be less. There's a lot we don't know about me/cfs, but the "contested illness" framing more often than not elides the fact that there's also a lot we DO know. framing this illness as wholly mysterious is misleading, and ultimately does a disservice to patients, who suffer both from a debilitating illness and from its marginal, stigmatized status.

Me/cfs is just one of many illnesses that gets glossed as 'contested' - what are we missing about the others? can we actually contribute to resolving these debates if we're hanging our whole analytical hat on the notion of controversy?

[myalgicencephalomyelitiscfstom]

May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month)

You can help by re-blogging and/or liking this image.  

[lookingforsunflowersinmylife]

First Day at 39

I’m like a kid. I still get excited for my birthday and what the day will bring with it. Today has been loaded with cold and me with a tissue in hand constantly.  I have a lovely group of friends who wished me well and I love them dearly for it.  But the reality is because it’s a special day doesn’t change what I go through. Pain. Fatigue. Exhaustion. Brain Fog.  Depression. Anxiety. Apathy.  

But it is also a date that we attempt to raise awareness.  This week is Mental Health week and Fibromyalgia Awareness week and the first World ME Awareness day.  So all my ailments are domed into a nice and tidy Birthday present for today.  I’m very passionate about stopping the stigma and raising awareness, but did they all have to land on the same day when all I want so badly is to forget about them.

So, after a lovely piece of lemon drizzle, I’m going to bed hoping that tomorrow my cold will be a bit better and my day will be a bit easier and therefore enjoyable. 

[hermitlife]

Today is #meawarenessday #millionsmissing is a campaign to draw attention to those who experience ME/CFS and to call for greater investment in research and education. I could have written heaps of things I'm missing but I feel the social isolation has had the biggest impact on me personally. Thank you to all my friends who have supported me since I became unwell. I just miss seeing you in person and hanging out. Big love to all those who experience ME/CFS. The last thing I felt like doing today was posting on social media, but I read your messages and realised I wanted to show solidarity. Two years ago I couldn't have posted this. Never give up hope. #canyouseemenow #unrest

[elizabethbcn]

My body has only a very small store of energy and once it's used up it simply does not refuel like a normal body. Think of me like a damaged battery! My mitochondria (energy producing cells) are basically screwed. What can you do? You can understand. You can watch #Unrest (available on Netflix and iTunes) and see the reality of behind closed doors that you won't see unless you live with someone with M.E. You can believe. M.E affects more than 250,000 I am NOT asking for sympathy. I am asking for understanding for all M.E sufferers. It is a travesty that so little money is invested in biomedical research. It feels like we've basically been left to rot. We have spent thousand and thousands of pounds trying all kinds of private treatments and while some have helped a little, nothing has been significant or curative. The NICE recommended therapies (CBT and Graded Exercise Therapy) have now been removed from the NICE Guidelines because that have been proven to be at best ineffective and at worst very damaging. M.E is not the same as 'chronic fatigue' that is a symptom of so many illnesses ... the cardinal difference is that with M.E is that 24-72 hours after exertion, you experience PEM (post exertional malaise). And it's shit beyond belief! So now, NHS has zero treatment ... yes zero. Doctors do not know how to treat us. 😱 There is good biomedical research happening aboard and they are discovering so much - there is therefore hope for the future, but it's slow. M.E is a complex, multi-systemic neuro-immune disease - it's not an easy one to solve, hence why it hasn't been solved! I just hope that there will be effective treatments on offer in my lifetime so I can get my life back. ❤️ I am one of the 'millions missing'. #millionsmissing #meawarenessday #myalgicencephalomyelitis #whitneywave #canyouseeMEnow

[chronicallydivine]

So pleased you 💙 this, and thanks so much for sharing 💙🥄✨💖 #Repost @adeleinchains ・・・ 12th May is national M.E awareness day. #goblueforME . . . Pin is by @chronicallydivine #meawarenessday #myalgicencephalomyelitis #canyouseeMEnow #meandmyME #thisisME #millionsmissing #goblue4ME #somethingblue #yourachingartgoingblue #raisingawareness #invisibleillness #chronicillness #DIDcard

[portiaferrari]

Very honoured and grateful to have had the opportunity to do the body painting for my good friend Claudia's M.E awareness campaign ♥️ When people are around you suffering it is so important to help out in anyway you can so I am helping to spread awareness for her and any people out there that are suffering also. Creativity, support & Unity is vital at these times ~ All the Love ♥️ @lilguerrera Photography by @michele__lea | Body Painting by me with help :) #bodypainting #meawarenessday #physicalhealth #mentalhealth #chronicfatiguesyndrome (at London, United Kingdom)

[jaybird1306]

My video for M.E. day 2019. This year instead of looking to the past, i look to the future and speculate on what i might do if a cure is found! www.omf.ngo www.meaction.net

[fleur-de-lissie]

For M.E. Awareness day/week/month I had intended to write a new blog post detailing how my illness has progressed, what it's really like day to day because us #Spoonies have this way of putting a brave face on. We have this way of showing the best of what we have so we don't come across as moaning or boring. The thing is this illness changed our whole world, and it may do for the rest of our lives so, to us, it's the biggest and most important thing that's happened. We have to find a new way to cope almost every day. And we should stop diminishing our pain to ease the conscience of others. #ME #CFSME #MyalgicEncephalomyelitis #MEAwareness It's #MEAwarenessDay. This page from my book, The Facts of Life, describes how having ME impacted our decision over whether to continue our pursuit of parenthood. Just one example of how the illness can be negatively life-changing. Why, after so many decades, has here been so little biomedical research? (I won't go into the politics here, but it is utterly shameful, as is the way ME patients are often treated, or not, within healthcare).#Repost from @paulajknight with @regram.app #MillionsMissing #MEAction #PACEtrial #stopGET #mecfs #graphicmedicine #thefactsoflife

[brooksmeatswift]

𝗪𝗵𝗮𝘁 𝗶𝘀 𝗠𝗘 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗪𝗲𝗲𝗸? . Like most terminal or chronic illnesses and disabilities, we have a week and a day (within that week: Thursday 12th May) in May each year, that is designed to raise awareness about our condition: ME/CFS . Having suffered since 2004 when I was diagnosed with Glandular Fever and then had a formal diagnosis in 2006 at a specialised ME/CFS clinic at St Bart’s in London - I have seen first hand why we need to raise awareness . For so long our community of sufferers have faced stigma from non believers, medical professionals and the media over what is a truly debilitating condition . Since the turn of the last decade, the research and belief in our illness has increased. And since the turn of this one and the introduction of Covid and more aptly, Long Covid. There seems to be more discussion about ME/CFS especially in the media as Long Covid has a very similar if not identical list of symptoms as what we suffer . So this week I will talk a little about what this illness is and just make you all a little more aware of what we go through and will try to come in live at least once, symptoms allowing . Please do ask questions and I will try to answer them where I can. And don’t forget there is our blue Sunday Tea Party this Sunday - I have a donation button in my profile - just the price of a cuppa and slice of cake, any little bit will help the MEA with research and care for fellow sufferers . . . #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #meawarenessweek #meawarenessday (at Windsor, Berkshire) https://www.instagram.com/p/CdVbXGPs_Yr/?igshid=NGJjMDIxMWI=

[myalgicencephalomyelitiscfstom]

May 12 is International Myalgic Encephalomyelitis (ME) Day (and May is ME Awareness Month)

You can help by retweeting and/or liking this image.

Day #12

[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)

[thatspooniefeel]

Today is CFS/ME awareness day. Chronic fatigue syndrome (myalgic encephalomyelitis) is a condition with a very poorly chosen name. CFS is so much more than fatigue, though the fatigue described by patients is nothing like the fatigue an able bodied person describes anyway. CFS is brain fog and an inability to concentrate. It is chronic pain. It is hypersensitivity to light, sound, smell, food and temperature. CFS is short term memory loss. It is severe post exertion malaise that leaves us bedridden for days. It is comorbidity with other illnesses such as depression, anxiety, fibromyalgia, IBS and POTS. CFS is a muscle weakness that can only be described as if all the bones were suddenly taken out of your body. It's dealing with isolation, lack of research and treatment, it's being told you just "need to manage your sleep" and the frustration of no one understanding that it's so much more than that. All of this and so much more is what 250,000 people in the UK alone have to battle on a daily basis, and I am one of them. I have my good days, and those are the days any of you will know me on. But what you don't see are the days or weeks I spend trying to recover from them. That is where the hashtag #millionsmissing comes in. On the days you don't get to see. On those days we are missing from our daily activities, from your world. On this day and every day, please try to remember those of us who are missing. Because we're still here. We're still fighting. #cfs #cfsme #chronicfatiguesyndrome #myalgicencephalomyelitis #spoonie #spoonielife #spooniestrong #millionsmissing #may12 #cfsawarenessday #meawarenessday #invisibleillness #butyoudontlooksick #chronicfatigue

[lauraspen]

ME Awareness Day: A comic, a poem, a video diary and a word cloud

#MEAwarenessDay: A comic, a poem, a video diary and a word cloud #may12blogbomb #MEawareness #MEcfs #millionsmissing #pwme #chronicblogs

For ME Awareness Day, Laura’s Pen has compiled her relevant articles on ME/CFS… I normally go mad for ME Awareness Day. I have some grand idea, put it into action and make myself ill. This year I’ve had to be sensible because I’ve had an operation this week (I wrote this blog in advance). But, rather than miss out on ME Awareness Day completely, I thought I’d compile all the things I’ve already…

[imadethisfor]

RT @doodle_beth: I made this for #MEAwarenessDay and for everyone with an invisible illness. @MEAssociation https://t.co/ai5k14dNBY

I made this for #MEAwarenessDay and for everyone with an invisible illness. @MEAssociation pic.twitter.com/ai5k14dNBY

— Beth Wilson (@doodle_beth) May 12, 2017