As part of ME/CFS Awareness Day May 12, 2013 I thought I’d acknowledge all those people worldwide living with CFS/ME/CFIDS/Fibro who are on Twitter. I eventually want to do a blogroll too, but I’ve not seen a Twitter or Facebook Page CFS/ME list (it may be that I haven’t looked very well!), so I thought I’d start the Twitter one here and add a Facebook Page list in a later post. (P.S. If you would prefer not to be on this Twitter list, please let me know and I’ll delete it)
May 12th is International MCS, ME/CFS & FM Awareness day. Please follow & retweet us To raise awareness & make ourselves heard! Please use hash tag #may12th
Twitter names of people with CFS/ME/CFIDS/FM
I have severe M.E – which has left me bedbound. But I still have dreams and hopes, of better days.
My motto? Can’t blame a girl for trying! Lover of words, Constantly fighting Fibromyalgia & ME/CFS with a positive attitude. Read all about it on my blog..
About.com Guide to Fibromyalgia & Chronic Fatigue Syndrome, and also an aspring novelist/screenwriter.
Sick and tired of feeling sick and tired. Neuro-Immune disease (ME/CFS) Awareness. Trying to fight the judgements of the ignorant with humour, and Education :0)
I’m not depressed! I’m not lazy! I’m not a hypochondriac! I have Chronic Fatigue Syndrome. I LOVE MY LIFE, just not my condition. I choose to live!
Opinionated ME/CFS patient, writer, media observer. Tweeting about #MECFS, chronic illness & disability issues, and medical/scientific research.
Stressed-out Glasgow Landlady! CFS for over 20 yrs Got into property as only option was to work for myself. A big struggle – but interesting. Have lots to say !
Blogger RE:, , & . Writing gritty, raw essays based on personal experience. Proud .
22 year old. Suffererer of Asperger Syndrome/ ME/Depression/Irlen Syndrome. Christian. Blogger. YT channel: www.youtube/com/bazmufc8491 Watch this space!
Living with ME/CFS since 1989 and trying to make the most of it without crashing and burning.
I am me! Happy~Married~Geordie living with M.E. for 15 years. Standing up for awareness of invisible illnesses.
Warrior woman comitted to raising awareness of M.E./CFS
21 yr old. ME, Fibro&Hypothyroidism. On levothyroxine but avoiding other meds, trying a gluten free diet. Other healers of mine = photography & ballet
I’m going to wake up tomorrow feeling normal, right? Will I wake up tomorrow? Or did I die and go to hell and no one has told me? 30 years with classic CFS/ME.
We are here to make a positive change for Australians with ME and CFS and their carers.
I have Myalgic Encephalomyelitis.. have been bedbound since 2003,, I want my life back,,I want proper research,,
Health Consultant, MLMer, Full Time Internet Marketer
I’ll update with new research and articles about CFS
I’m a 41 year old guy, recovering from Chronic Fatigue Syndrome.
I want to use Twitter to find support for managing my (relatively mild, but utterly life-changing) chronic fatigue syndrome (ME). I work part time from home.
#ME Fighter since 2005 Two Letters, One Complex Illness Writing 2 blogs 1 about life generally,another about studying with #ME http://t.co/Qsb6CCZr1I
Fantasy/Sci-fi & ME/CFS writer
Dx’d with Fibromyalgia and Chronic Fatigue Syndrome in 2007. Have been suffering symptoms since 2004. Hoping to connect with others to chat,rant or to just share
A #Christian support network for women suffering from #chronicillness and #chronicpain – #lupus, #fibro, #spoonie, #cfs and more… http://on.fb.me/KJ40xI
Writer, poet, and political blogger. Has severe ME & wears pajamas all day.
A Professional Editor, Author, Photographer & geek near Atlanta, GA, currently struggling with CFS/ME & Fibromyalgia. I shoot portraits, fine art, & weddings.
house bound with ME/CFS and anxiety, mother of 5, nanny to 2, carer to daughter with bi polar, musician, Christian, committed to making mecfs visible. England
♥ Raising money forby making 100 felt birdies! ♥ Check out my new website for links to my shops ♥ Alter-ego of ♥
Determined 2make ME. VISIBLE by sharing 1Story@aTime a month. ME since 1992. Artist. Author. 2ndblog: 4Walls and View. Veteran of USAF.
into: Adam Ant, Nick Cave, Sparks, INXS, good music in general, beads, art, records, swatch watches & much more. have cfs/me so doing very little at the moment
Living with me is hard. As is living with ME. This is my story.
Successfully ran the Reading Half Marathon 2011/12. Raised almost £2,000 for @meassociation after recovering from CFS. Keen to meet other ME/CFS sufferers.
Former Entertainment PR and Marketing guru in London, got sick, now run charity Neuroimmune Alliance for ME, Gulf War and other neuro/toxicity related diseases.
Sharing information and raising awareness about ME, as well as treatments (sadly not cures yet) and ideas for managing ME and Chronic Fatigue Syndrome CFS.
Christian, uncle, musician, songwriter, card seller, video & TV producer, editor, journalist, writer, presenter, graduate engineer, sailing, recovering from M.E
Enviro Scientist now living with Chronic Fatigue Sufferer (CFS/ME) – managing my recovery and wanting to connect with others who are fighting fatigue.
I’m a woman living by the sea in England. I’m housebound and 80% bedbound with ME/CFS and I’m learning to come to terms with my new life.
Celebrating, recognising and supporting individuals who are recovering from ME/CFS
In a 38-yr battle w CFIDS/ME/fibro/insomnia, etc, a mom,wife,bookworm, BFF, beauty junkie: join my blog for tips on survival, observations, info & laughter! Xx
Compact, multi-purpose opera singer – Operatic soprano living with ME/CFS.
Just one who tries to choose hope. Been dealing w ME (ME/CFS), a neuro & immune disease, for decade+. Was studying cell biology. Follow, RT not = endorsement.
-ME ninja for 11 years -Mostly bed/ house bound -Rickettsia -Mycoplasma – Painter/artist- Spend my days in my stripey pjs
@thegoat124 is the love of my life
Making a film about
#MECFS. I want to hear your story. Ex- #bipolar. Sugar phobic. #Mito poor. #Keto- #paleo. My body is a complex system not a disease. @jenbrea
#Chronic Lyme Disease, #Babesia, #Bartonella, #Fibromyalgia, #CFS/ME, #Gastroparesis, #dysautonomia/POTS, #LoveLife
Mimi the pug. Books. Green. Food. Nederlands. Knitting. Boardgames. – And my sofa, because of ME.
I am a 24yo with fibromyalgia, CFS, lupus. Trying to live a day at a time. So in love with my amazing boyfriend who has stood by me through hell & high water.
Making a film about. I want to hear your story. Ex- . Sugar phobic. poor. - . . My body is a complex system not a disease.
21 year old, diagnosed with CFS/ME 3 years ago. At uni Trying to keep smiling despite the pain #spoonie #MECFS
Life With Severe ME/CFS: A bed-lyin’, pill-poppin’, muscle-wastin’ good time.
Links r 2 my writing. I have FMS/CFS, I’m a writer, speak portugues, poet, dog lover, I’m pro-teacher & pitbull love cars, pottery, raw food photography, family
Creative, crafty, chronically ill, expat geek with major wanderlust. Making is life. Married to @timmiesaurus.
Just a girl trying to raise awareness and help others living with chronic illness’s. Sharing advice, treatments I’ve tried and my story of life with CFS xoxo
Hi I’m Julie I have me/cfs. It has been a long few years, however now I am back to 80% of my old self. Follow my story!
I have M.E. / CFS (Myalgic Encephalomyelitis) Trying to raise awareness for this illness. Hoping for better health soon for all those living with this
Sick with myalgic encephalomyelitis since Nov 2008. Tweeting about health care for neglected diseases.
I would love to be able to fly until that happens I will try to spread a little joy although ocassionally grumpy. Happily married, proud mum, ME survivor
Crashed. Need treatment for Myalgic Encephalomyelitis. Tweet #NeuroME for emergency roadside cure.
Trying to make a difference by sharing my personal experiences of M.E. ~ A daily battle against my own body & the world!
ME/CFS sufferer owner of http://www.facebook.com/groups/250126228429160/ LFC fan
Sick and tired…43 yrs ill with ME. In a lot of pain..want an answer..NOW!!!!
Been living with M.E. since 2006, love salsa, baking and photography. Work in medical publishing and am the author of the M.E. blog http://t.co/VxjKO7XD
Living a nightmare with M.E/CFS/FIBRO but my family pull me through i have 5 lovely children #ihatefibro
Blogger/CFS Coach. B.Psych BA(Hons-Psych) Had CFS/ME & Electrosensitivity Pain for 20 yrs Recent diagnosis of pyroluria Google it! Mum, Smiley Positive Person. Ballarat, Vic, Australia
Over 60 disabled gardener who loves Liverpool, the wonderful place I live.
Helping people LIVE with ME / CFS
Solutions for a Brighter Future. ME Diary will help you find your Activity Baseline quickly and safely. While helping you communicate your need for support.
The NHS offers NO treatment for the neurological disease #MyalgicEncephalomyelitis. The deceptively-named CFS/ME Clinics are for psychological fatigue, not #ME.
Just a girl raising awareness for the neuro-immune disease Myalgic Encephalomyelitis (ME). ME is not fatigue, it’s Post Exertional Malaise! RT the message!
Writer obsessed with all aspects of pop culture, living w/disability (CFS/ME), cat person, foodie, nerd/geek, pretty stuff makes me happy.
Mum, Celtic fan, Solicitor living life with ME.
ME Support in Glamorgan We are a support group for people with M.E/Chronic Fatigue Syndrome and Fibromyalgia.
50 ish man still coming to terms with CFS/ME, I live in the south west of England with my wife,dogs and cats. trying to stay positive.
Motivational & inspirational website for those with chronic illness & fatigue — blogs, useful links,forum, video chat & more. Facebook: https://t.co/kFJmUEPX
International cat herder with fibromyalgia and ME/CFS
Housebound is no worse than earthbound it’s what you make of it. Multiple Sclerosis (PRMS), Fibro and more, may have limited me but it can’t destroy me.
I’ve had M.E for 11yrs, I’m still fighting & smiling. I’m training to be a Reiki master & I have a awesome partner & family who are my world xxx
Do something positive for ME/CFS. Myalgic Encephalomyelitis. Pay it Forward For M.E. ☛ Lizzie. HOBY’s rock!
My update on ME! I have severe M.E. & Chiari. My thoughts, symptoms, treatments, rants, ideas. Hey! It won’t be as bad as it sounds!!!
Living with moderately severe ME, CFS, OI, POTS, and mild COPD (non-smoker) & Asthma. Retired accountant due to illness.
Hit M.E wall in 2011.Am on road to recovery and want to share what know and learn! Orthostatic intolerance? sugar crashes? Startle reflex on all day? etc etc
I publish the world’s largest Chronic Fatigue Syndrome and Fibromyalgia newsletters; research addict; owner of ProHealth.com; ‘CFS’ is dismissive-it’s wrong.
I am a 2nd year doctoral student (Ed.D). I live with RA/Lupus and Fibro. Determined to achieve my dreams despite my pain! #spoonie, #squeaker
16 Year old guy who has M.E and fundraised for Ayme (Association of young people with m.e) by abseiling down a 80m gorge And I hit things….with sticks.
http://www.samandme.org an honest and extremely funny blog about my life with M.E (Myalgic Encephalomyelitis) Part of #London2012TorchRelay
fibro,Me,sicca, divertula,endo, naughty back discs, and OA. giggly nutter. lov angels and caring for others..got a beagle springer cross male dog.
Sigrid Danielsen @SigridDanielsen
Blogger om helse og livet.( Fibromyalgi og ME), men også andre ting jeg synest er viktig og som opptar meg i hverdagen!
Housebound with ME, POTS, 17 years old, Welsh
Guy with CFS/ME trying to do something about CFS/ME.
This is my life with ME; multiple symptoms + mysteries– Pls share ur tips for coping
I live in New Zealand, was born in Cardiff, South Wales, and left in my teens to come here. Have three great adult kids, and three grandchildren, who I love to bits, I am happy to be a child of God, who I have found to be Awesome. I have FM, ME, IBS, Arthritis, and each day is a challenge
ME/CFS can leave you feeling like an extra from a horror movie; from a ghost haunting the house to being a zombie shuffling along. It ain’t always pretty!
Irish ME patient 24 yrs, housebound (post-GET) 18 yrs. 95% of tweets on ME/CFS matters. Follow field closely-15 pubs in peer-reviewed journals (+ 100+ eletters)
ME & depression sufferer, blogger. Love my dog, the paranormal, music, gardening, crochet & cross stitch.
We are 3 friends tweeting from this account in honour of our friend with very severe ME. Hoping to raise awareness.
Action for M.E. is the UK’s leading charity working to improve the lives of people with M.E.
Meets the first Tuesday of every month at 7pm at the Emerald Roadhouse,33-37 Finaghy Road North, Finaghy,BelfastBT10 0JB ME Support for sufferers/carers.
Bristol North FM.E support group supports people with FibroMyalgia and Myalgic Encephalomyelitis: FM and M.E= FM.E
An independent UK charity campaigning for biomedical research into ME and providing better education and awareness of this disease.
Leveraging patient-centered research to cure MECFS
We help CFIDS, CFS, ME/CFS, Chronic Fatigue and Fibromyalgia patients with treatment, thanks knowledge about pathogen, which cause this disease.
A health and wellness centre dedicated for those living with Chronic Fatigue Syndrome. Australia
CFS Solutions of West Michigan provides help, hope and positive support through education and advocacy for people with chronic fatigue syndrome and other NEIDs.
Support group for us with CFS/ME/Fibromyalgia based in |pswich, Suffolk. Follow us on our journey! Email- email@example.com.
Research, reflection, action, and change. I’m also trying to understand & beat Myalgic Encephalomyelitis.
Cinda Crawford is host of the Health Matters Show, the destination blog & podcast for people who want to get well from Fibromyalgia and Chronic Fatigue Syndrome
Cycled 150mile coast to coast in August raising awareness for ME/CFS. We raised £703 for ayme.org.uk. My website has ran out,ask my email for my story!
online community & resource for proper awareness of M.E!!! We do not respond to random sent links!
Edinburgh M.E. Self Help group. ME/CFS Scotland.
We are Leicester’s only M.E/CFS/Fibro support group, offering our members with advice and support with their medical condition.
A patient-driven campaign run in cooperation with Invest in ME to raise funds to establish a UK centre of excellence for biomedical ME research and treatment
From XMRV to HGRV’s, or whatever bugs responsible for neuroimmune diseases.
ME/CFIDS Patient Advocacy 4 better treatment & cure. Believe me, your life and dreams are gone before your eyes! Also Childhood Cancer Awareness Advocacy!
The MEA is the UK’s flagship campaigning charity for people with ME/CFS. We inform and support 250,000 sufferers. Accept no imitations!
The illness Myalgic Encephalomyelitis Chronic Fatigue Syndrome #MECFS causes muscle pain & suffering, & is probably caused by toxic chemical poisoning. @ME_CFS
Independent ME/cfs trying 2 give a United Voice ! ME=myalgic encephalomyelitis + cfs=chronic fatigue syndrome + 25yrs =Non-HIV AIDS2.0, MTHFR+, OI/POTS, +ADD
The illness Myalgic Encephalomyelitis Chronic Fatigue Syndrome #MECFS causes muscle pain & suffering, & is probably caused by toxic chemical poisoning. @ME_CFS
De officiële patientenorganisatie voor mensen met ME/CVS, ook wel Chronisch Vermoeidheids Syndroom genoemd
Edmonton, Alberta · http://www.mesocietyedmonton.org
National ME/FM Action Network – Dedicated to advancing the recognition and understanding of ME/CFS and FM through education, advocacy, support, and research
ME/CFS & Fibro Support Group. Promoting ME/CFS & Fibro Awareness. Unite & Survive!! Believe in ME!
Covering symptoms, diagnosis, causes, prevention and treatment news about chronic fatigue syndrome and fibromyalgia.
Charity & Community for People with ME & CFS conditions. The source for ME & CFS news/editorials. #MECFS #ME #NEI #MyalgicEncephalomyelitis #NeuroME #spoonie
Support, education & social networking for those with fibromyalgia & chronic fatigue syndrome thru mthly mtgs/webinars/Ning site. Tweeter: Tamara Staples
We Care about ME/CFS and Fibromyalgia Patients.
Public Health Alert (PHA) is a health focused newspaper committed to investigating Lyme Disease, MS, CFIDS, and other chronic illnesses in the United States.
Smile For ME is a registered charity that wants to put a smile back onto ME/CFS sufferers faces & their families. Nominate someone for a smile on our website
Worldwide Association for ME/CFS Awareness and Research. Contact us at firstname.lastname@example.org. The WAMCARE Board of Directors tweets here!
Author: From Chronic Fatigue, Fibromyalgia & IBS to Multisystem Dysregulation
Author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, and editor of OslersWeb.com. Follow my blog posts on twitter.
Author of the award-winning How to Be Sick and the forthcoming How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (September 2013)
TV Documentary bringing M.E. into wider public view, lifting the lid on the impact of the illness and what it means to live with it.
Dan Neuffer @cfsunravelled
CFS/FMS Recoverer, author and speaker sharing research and understanding to help people with #MECFS,#ME,#CFS,#Fibro, #ChronicFatigue #CFIDS,#MCS.#Fibromyaligia
Clinical Nutritionist in London – acknowledged specialist in CFS/ME, Candida & complex relationship between nutrition & disease & chronic health issues
Byron Bay · http://holistichealingandcfs.wordpress.com
Wellness Coach specializing in Fibromyalgia and Chronic Pain.
A methodical approach to treating Chronic Fatigue Syndrome, ME, Fibromyalgia & more. Available worldwide.
Gentle, drug-free relief from pain, anxiety and insomnia. I know what it is to have pain and fatigue (Fibromyalgia & CFS). It’s great to be working again.
Welcome to the mad world of poorly understood diseases like Lyme, CFS/ME, Fibromyalgia, Immune Deficiency and Chronic Infections. (English, German)
I am a twenty-six year old special educator and writer. In the fall of 2010, I was diagnosed with the debilitating illnesses of Fibromyalgia and osteoarthritis
http://fibromyalgiaawareness.com is a blog dedicated to spread awareness about Fibromyalgia and help those suffering from the ‘Invisible Illness’.
We’re a mother-daughter team sharing our journey living with fibromyalgia, migraines, neuralgia, & chronic pain.
Got Fibromyalgia? How are you feeling today?
You can see more of my life @ www.fibromyalgiajournal.com.
Is The Pain & Discomfort of Fibromyalgia Draining Away Your Life & Energy…? If So, Then This May Be The Most Critically Important Letter You’ll Ever Read…
♥♥ Visit my Fibro blog at http://fibrofaery.wordpress.com/ ♥♥
Fighter, TV junkie. Looking for others to connect and share. I’m a mother, love to laugh and help others. Follow me, I love to talk.
Fibro Survivors United was established to allow the community of chronic pain survivors a place to find the information and resources they need.
FibroZuscany Is A Palette of Dreamy Writers, FibroInduced Creatives, Misunderstood Femails & FibroInfusiests Burbling On Controversial Topic of Fibromyalgia.
ME/CFS,Fibromyalgia&Depression Sufferer.Vegetarian,Beauty Junkie.I love:F1,Photography,LolaRose Jewellery,Crystals,TakeThat,Piercings,Tattoos,Animals+More!
I’m 39 I have Lupus Fibro, Sjogrens, APS, Avascular Necrosis & so on!! Love Animals they are my life my family are Gypsy (dog) Chyna (cat) Tilly (cat)
My name is Karen and I have a special interest in helping people who suffer with fibromyalgia. Click my link for my blog. Blessings to you.
I’m 23 yrs old & I’ve got every disease you’ve never heard of lol. I’m just a laid back, sarcastic chick making the best out of my life.
Formerly. Please see my experiences with fibromyalgia and bipolar disorder and blog posts, news and info to share.
Kelsey. Rookie to Arthritis and Fibromyalgia. Diagnoised April, 2012 at 14 years old. Chonically awesome. Holla!
Bestselling author and Award winning blogger, helping Mums (and herself) enjoy being a Mum and get the sparkle back in their lives. Fibromyalgia since 2012.
AKA – #StuporGirl! #ProudMum Of 2 Fantabulous girls, Proud Mrs @FibroAngelhubby. Trying 2 raise #ChronicPainAwareness, #Fibro #HMS etc http://t.co/V4IGAHgUSP
I’m a bed-bound M.E. Patient who will tweet important news about our illness. To better health – Otis
Founder – http://t.co/i20OXeEW, husband, father of 4, blogger, runner, living mindfully and healing well with chronic illness. #fibro #mindfulness #healingwell
#TeamSpooniesUnite #Fibro#HBP#Diabetes#RLS#Painsomnia Mother/Grandmother
OTHER Chronic Illnesses & Related Tweeters
http://www.templeilluminatus.com/group/chronicpainillnessdisabilitysupportgroup Chronic Illness Pain Support On Diversity friendly alternative Interfaith site.
Founder of CHRONICLYsILLy…Chronically Hilarious…I’m Simply complex and perfectly flawed… Have you had your daily dose today? #lupus #spoonie #awareness
Too sick right now to think of something catchy… I’ll have to get back to you
I am a disabled hospice nurse with multiple chronic health conditions. I believe in equality for all, and the power of laughter and love.
Spreading awareness for invisible illnesses one shirt at a time.
Sept 10-16, 2012 is National Invisible Chronic Illness Awareness Week. Blog for the cause & make a difference!
freelance writer. founder & editrix of http://t.co/3pTpMBSK. teaching women to live awesomely in spite of chronic illness. lover of all things orange and pink.
I’m a housewife with severe chronic illness. I love baking, reading & knitting, and keep my brain active with physics and the meaning of life.
Professional Speaker and Wellness Expert. Fatigue Professor, solving Fatigue Problems in workplaces. Avatar Master. Writer.
Tamer of Burnout, Igniter of Lives, Rockin’ the Written and Spoken Word To Inspire Sustainable Success For Individuals And Organizations.
libra, writer, live w/autoimmune illness. & chronic pain. I love my family, coffee,vintage, kinda geeky. Love to LAUGH & DANCE! Loyal friend. And sarcastinesta
Pain Concern works to improve the lives of people living with chronic pain. Listen to our radio podcast, Airing Pain, at http://audioboo.fm/users/97200/boos.
The Chronic Illness Career Coach.Seasoned career coach & author living w/chronic diseases:MS,UC colectomy/etc.M w/2 grown daughters & goldendoodle
Chronic Pain Survivor and Advocate. The former King of Pain! Voice-Over Artist in commercials, promos & documentaries.
UNSEEN MAGAZINE – for all those affected by chronic illness *Helping to improve lives, one page at a time!* will #FF
Natural Therapist, BFMC, EAV testing equip, Fit Genes practitioner, DNA profiling, Passionate about helping people live a long, healthy life
Our comprehensive survey asks: What do people with XMRV (and related human gamma retroviruses) have in common?
Wow!! That took me WAY longer than I thought it would, but I hope it’s valuable to lots of people. Let me know if you’d like to be added or have any suggestions for additions to the list. I’ve just copied the descriptions straight from the Twitter profiles, so have not changed typos or anything. I will continue to add to this list as I become aware of omissions.
May you all have “good” days on May 12th. We all know the immense value of those “good” days compared with the rest, don’t we?!
P.S. If you have a chance I’d love you to pop over and LIKE my Facebook page. At the moment it’s feeling a little sad as I think it has about 18 likes as I haven’t found time to publicise it. Poor baby!