#myalgicencephalomyelitisawareness

[alishawhittam]

Decode ME

Why its so important for us all to come together to make a difference.

Did you know that - Woman Suffer more from Myalgic Encephalomyelitis 

What about this - The most common active co-occurring condition was irritable bowel syndrome, with clinical depression, fibromyalgia, anaemia and hypothyroidism also featuring prominently.

"Sonya Chowdhury, chief executive of Action for M.E. and chair of the management group of the study" asks for us to join in - We still need more to join us, so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at  www.decodeme.org.uk/portal

#MyalgicEncephalomyelitis #myalgicencephalomyelitisawareness #decodeme #fibromyalgia #anemia #hypothyroidism#actionforme

[brooksmeatswift]

Just a little nudge… . If you have taken part or still want to take part in the @decodemestudy you can do so and be sure to follow all the steps at your own pace . Even if you are only eligible for the questionnaire - you won’t know if you’re required to do the spit kit until after - but it’s a big help towards the findings of this study . Link in bio and stories . . . #SpitToDecodeME #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #PEM #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cn124aAsVnu/?igshid=NGJjMDIxMWI=

[aislynndmerricksson]

Today is not a good #ME day... Making me extra super cranky that my initial intake appointment on June 25 with @stanford.me.cfs @stanford.med was cancelled the day before due to unforeseen circumstances on their end. Qué Sera. Things happen. However...when I called to reschedule, the next available appointment was FEBRUARY! I had a good long cry that day BC I was (am) sure they can offer some succour and management. Had another frustration cry after the realisation that today I get to spend most of the day downstairs because my energy is too low. Now mind, this house is Tahoe style, probably the stupidest design in the world. Communal areas are all upstairs. Bedrooms are downstairs. On top of it all, my brother in law went on a business trip, and since my sister has chronic (and also self-inflicted) conditions, I end up doing the lion's share of caring for 5 cats and a dog, as well as daily maintenance chores like dishes and laundry. And crying triggered a pain flare. I had COVID September past, and it made the ME so much worse. To the point I can't go out and do a regular job anymore. I tried this past week. Was so excited about it. But the environment was overstimulating. And I had my service dog in training with me. I was very upfront about her, and my disability in general, when I was hired. Second day, someone brings a dog in and she popped her paws up on the lower counter right beside me. This counter was completely separate from the guest counter. I immediately corrected her and she lay back down. Shortly thereafter I get a call from the HR lady explaining to me that while they understood the need for Pippa, she could not put her paws on the counter. Said there had been a 'complaint'. Now, there hadn't been time for a guest complaint to reach that far, and they'd have had to go to the manager first. She was there training me. No guest spoke to her. Turns out the owners enjoy watching the cameras religiously and nit-pick over every little thing. Not at all cool @innatrockaway. Not bloody cool at all. I quit. #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #chronicillness #chronicfatiguesyndrome #chronicillnesssucks https://www.instagram.com/p/CRhIg3yLj-8/?utm_medium=tumblr

[miss-blue-eyes-0304-blog]

#chronicfatigue #chronischvermoeid #fibro #fibrowarrior #fibromyalgia #fibromyalgie #chronicmigraine #chronischemigraine #spoonie #chronicpain #chronicpainwarrior #addisonbiermer #rls #spasmofilia #rosacea #rheumatoidartrose #restlesslegsyndrome #spasmofilie #myalgischeencefalomyelitis #myalgicencephalomyelitisawareness #potssyndrome #bechterew #cancersurvivor #chronicsinusitis #chronischesinusitis #chronischepijn https://www.instagram.com/p/BvTiOEchog1/?utm_source=ig_tumblr_share&igshid=burqjkow4qcr

[missjohoy]

Fed up of labelling my photos 😬 the Linda McCartney "duck" pancakes yesterday were amazing. Did a lot of lengths in my hour swimming and managed a whole 25 metre length underwater! So was mega proud a had a choccy thing from Costa in celebration! 💙 . . #CFS #cfsme #mecfs #chronicfatigue #chronicfatiguesyndrome #me #myalgicencephalomyelitisawareness #spoonie #spooniefood #foodintake #foodjournal #dailyintake #healthyfood #healthyeating #healthy #vegetarian #weightloss #myfitnesspal

[chronicallydivine]

M.E. can be a complicated chronic disease that is life changing. This pin is to raise awareness of this illness. This M.E.Warrior pin is to raise awareness of this illness. ✨💖✨💕 Link in my bio 💖✨💙 #mewarrior #meawareness #spooniestrong #invisbileillnessawareness #spoonie #spooniestrong #invisbileillnessawareness #arttherapy #settingboundariesisselfcare #spoonie #spooniemagic 
#pinbadge #badge #lapel #hatpin #patch #lapelpins #patchgame #pingame#lapelpin #pinsofig #lapel #pins #pin #flair#badges #patches #pingamestrong #pinsofig #pincommunity #pinoftheday #pinstagram #spooniethings #makersgonnamake #chronicallydivine #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #chronicfatigue #chronicfatiguesyndrome #cfs #cfsawareness

[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)

[sarahgraham7]

What does it take for healthcare professionals to #BelieveWomen? For Clare, it took the death of two daughters. Her #HystericalWomen guest post, ‘Death means we believe you now’, explores her experiences of being ignored, dismissed as a #NeuroticMother, and finally accused of causing her daughter’s illness. It’s not an easy read, but it’s such an important story: hystericalwomen.co.uk / link on my profile. #mecfs #mecfsawareness #mecfswarrior #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #womenshealth #wetrustwomen #babyloss #bereavement #childbirth #meawareness #mewarrior https://ift.tt/2CL7EZv

[alishawhittam]

GOV plan to improve the lives of people with ME/CFS

Good Morning 😊

I hope you are all well.

I just wanted to take a moment to share this with all my fellow Myalgic Encephalomyelitis sufferers and their carers/family members.

It is an easy-to-read Document which is great if you are having trouble putting together a string of words like I am today 😂

Have a read and let me know what you think!

#MyalgicEncephalomyelitis #GOV #myalgicencephalomyelitisawareness #CFS #chronicfatiguesyndrome #chronicpain#longcovidrecovery #longcovid

[brooksmeatswift]

𝕀 𝔸𝕄 ℙ𝕖𝕣𝕤𝕚𝕤𝕥𝕖𝕟𝕥 . Finally, my first meditation of the year . It’s been a tough start to the year and a lot of flares and setbacks after Christmas; but this was a message that I needed . “I progress through whatever challenges lie in my path” . I’d say this is not just true to me with having a chronic illness in M.E. But for most people in life, challenges will always present themself - it’s how we deal with them that matters . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME #meditatingspoonie #iampersistent (at Windsor, Berkshire) https://www.instagram.com/p/Cn07f99j1w1/?igshid=NGJjMDIxMWI=

[alishawhittam]

Help for Myalgic Encephalomyelitis Sufferers in Wales

Help for Myalgic Encephalomyelitis patients in Wales

Welsh Sufferers  Did you know about this ?

#NHSWales #MyalgicEncephalomyelitis #myalgicencephalomyelitisawareness #chronicfatiguesyndrome#Chronicfatiguesyndromesymptoms #CwmTafMorgannwg #Bridgend #MerthyrTydfil #RhonddaCynonTaf

[brooksmeatswift]

𝓜.𝓔. 𝓪𝓷𝓭 𝓹𝓪𝓻𝓮𝓷𝓽𝓲𝓷𝓰 . do not mix well at times. But I have come to terms with that and doing the best I can . It means trying to pick your battles, which is sometimes hard when you have to get them out of the door and at school/nursery on time and you already have a handicap . I do have my moments where I think ‘why!?’ But if they want breakfast in my bed with their tablets, we’ll why not… . They did this morning and actually, we got out of the door earlier than when they go down to the dining room 🤦‍♂️😂 . In other news, the girls love making dens, still dancing to Encanto and after 9 months or so of back and forth; I was awarded PIP which will be a massive help considering the childcare cost and help we need whilst I’m unable to look after them all day . It gives that bit of help so I can rest and know that Attie is developing too - after all, we want her to be able to have social time considering she was born in lockdown . And for me, rest is the hardest thing as it means full period of no noise, no light, no anything really, to give me a little energy for when the little buggalugses get home . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cno89OGMklh/?igshid=NGJjMDIxMWI=

[brooksmeatswift]

𝕳𝖆𝖕𝖕𝖞 𝕹𝖊𝖜 𝖄𝖊𝖆𝖗 . Hope you all have a fabulous 2023 and May it be a year of chasing rainbows, seeing the good in everything and more costume changes . I’m not kidding - our girls change into about 4 fancy dress costumes a day - not including normal clothes; enough costume changes to rival a Taylor Swift gig 🤣 . I should mention how I hope it’s a year that I improve with health and Linds with stress of worrying about us all - but that’s out of our control . though I do hope it’s a year that DecodeME start seeing some interesting results in our gene study and aid future sufferers of this awful condition . . . #happynewyear #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cm3TGonqk1R/?igshid=NGJjMDIxMWI=

[brooksmeatswift]

𝓖𝓸𝓸𝓭𝓫𝔂𝓮 𝓝𝓪𝓷 . Waking up this morning, it’s so hard to believe she’s actually gone up to her place in the sky - sad that chances are I won’t be able to make the funeral due to my ME 😢 . Every summer from a young age, was spent at their guesthouse and then their new house and flat in Blackpool; and part of it in their caravan in the Lakes, with them, my cousins, aunt/uncle and sis as she got older . But it was a bygone time where our phones didn’t have cameras, so I don’t have many pictures of us together sadly 😢 . But what I do have, are precious memories of being loved, having fun, free rides on the pleasure beach, playing soldiers in the woods at the caravan, bathing in sinks, every summer was a new adventure- and I will never lose those moments, they will live on until I pass . I love you Nan, and although I pray it’s a long time off, I hope to see you again; I’ll bring the Guinness and Baileys . Rest In Peace Nan . . . #restinpeacenan #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Blackpool) https://www.instagram.com/p/Cmn6bc8sA99/?igshid=NGJjMDIxMWI=

[brooksmeatswift]

𝕾𝖔 𝖙𝖍𝖎𝖘 𝖎𝖘 𝕮𝖍𝖗𝖎𝖘𝖙𝖒𝖆𝖘… . Aurora asked for the leg, and the leg she took and finished with a little help from Attie . Started with Grace 🙏🏻 from Aurora - delivered perfectly; after the prezzies (still some to go) and a bit of styling from her cousin Jessica - but the whole family are stuffed . Absolutely a boss meal from Gran, Linds and the hostess SIL . Now it’s time to rest before pudding in about 5 hours time 😂 . . . #ME #CFS #Relapse #PostExertionalMalaise #PEM #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME #sothisischristmas (at Isle of Wight) https://www.instagram.com/p/CmmAz0jMM_O/?igshid=NGJjMDIxMWI=

[brooksmeatswift]

𝕬𝖓𝖉 𝖎𝖙’𝖘 𝖌𝖔, 𝖌𝖔, 𝖌𝖔 . As Elvis and Evie were ready to drive us to the first stop on our travels to the Isle of Wight . Thankfully, mama saw sense and she took over the driving to get to Gran’s house . We are now here, and I literally slept all day after the journey - so coming 2 days prior to our ferry was a very good shout . I just hope Elvis and Evie don’t ruin Gran’s house!! . Swipe ➡️➡️➡️ for the video of the girls finding the naughty elves . . . #ElvisandEvie #elf #elfontheshelf #elvesbehavingbadly #drivinghomeforchristmas #ME #CFS #Relapse #spoonieandparenting #papaandrory #andattietoo #dontforgetmama #cosmicprincesses #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodemestudy #butyoudontlooksick #aches #pains #dizzy #sensitivity #brainfog #PEM #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CmcGcgmsVs8/?igshid=NGJjMDIxMWI=