#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=

[alishawhittam]

Severe ME Day If you have a friend or family member who has ME I need you to read this post, I then want you to get in touch with them. I appreciate that in many cases months or years may have passed, or that you have lots going on personally, please let's make today the day they got their friends and family back. Every single week I speak to lonely ME sufferers who are dealing with something life changing alone, it shouldn't be this way. Nobody in the world wants to see their friend or family member going through something so difficult, it's heartbreaking I understand that and sometimes it is just easier to think they are ok or that they would get in touch if they really wanted to. Unfortunately it just isn't that easy for us, many of us have a real tough time speaking and yes lots of you will think that I am exaggerating but not being able to string a sentence together is very embarrassing. I have very few actual conversations for this reason, if I need to get in touch with someone I email or text. Please have a read of my post as it might just help you understand from their position, I have also put links to a few charities or you can get in touch with me. Severe ME day, for me its the start of a new life I was diagnosed with ME in 2012 which means that I have spent almost 10 years stuck inside the four white walls of my bedroom, I don't want that anymore. I am a very different person to the person I was back then and I have learnt to accept that now but that has been extremely hard. I have let so many relationships just slip away from me so today I have tagged my friends and family members on social media as well as sharing it in a family group chat. I am so embarrassed of how long it has taken me to ask for help & support from my closest friends and family members. I want my life back and I know that it isn't going to be easy but I have to try before this illness gets any worse. https://alishawhittam.com/severe-me-day/ #me #severeme #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #severemeday https://www.instagram.com/p/Cg_zZqrMaBT/?igshid=NGJjMDIxMWI=

[alishawhittam]

I have just read this out to Becks , it’s strange admitting to people even though they live this with me. It is funny looking from the outside in . If you have any behaviour that you feel you do too often and you want to talk , message me. Life with Myalgic Encephalomyelitis is really hard , the hardest thing is that most of us don’t just have ME. Please read and share this as you may have a friend who is feeling all alone without someone to talk to , they may feel embarrassed or scared to admit it . I write to get things off my chest but most importantly to highlight issues that most people don’t know exist . Sending you all love 😘 https://alishawhittam.com/obsessive-compulsive-disorder/ #myalgicencephalomyelitis #ME #myalgicencephalomyelitisawareness #ocd #mentalhealthmatters #mentalhealthblogger #anxiety #blogger #disabled #disabilityawareness #disabilityblogger #disabilityblog https://www.instagram.com/p/CCv9xwIn4Y-/?igshid=1pu3efr5mqetk

[alishawhittam]

Not all of us get to return to normalcy #bedridden #ME #MyalgicEncephalomyelitis #myalgicencephalomyelitisawareness #chronicpain #chronicpainawareness https://www.instagram.com/p/CCqoWoSnyn3/?igshid=1f5sbsok433rw

[alishawhittam]

ME Awareness #myalgicencephalomyelitisawareness #CFS #Charity #liverpool https://www.instagram.com/p/CCE0FIpnDX0/?igshid=16m67xzt8tzq9