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
Individuals
A Bed In The Stars @ABedInTheStars
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..
Adrienne Dellwo @fibroadrienne
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 !
Arielle Kara @dearlildisease
Blogger RE: #chronicillness, #mysterydisease, #leakygut & #mecfs. Writing gritty, raw essays based on personal experience. Proud #spoonie.
Barry John Evans @bazmufc8491
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.
Carole Carrick @CC_Me_AND_ME
I am me! Happy~Married~Geordie living with M.E. for 15 years. Standing up for awareness of invisible illnesses.
Cat Cassels @overcome_ME_CFS
Warrior woman comitted to raising awareness of M.E./CFS
Charlotte Amelia @fightMEstrong
21 yr old. ME, Fibro&Hypothyroidism. On levothyroxine but avoiding other meds, trying a gluten free diet. Other healers of mine = photography & ballet 🙂
CFS Journal @CFS_Journal Protected account
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,,
Chronic Fatigue Synd @Myalgic_E
Chronic Fatigue @ChronicFatigue
Chronic Fatigue
Chronic Fatigue @ChronicFatigue1
Health Consultant, MLMer, Full Time Internet Marketer
Chronic Fatigue @chronic_fatigue
I’ll update with new research and articles about CFS
Chronic Fatigue @cfssurvivor
I’m a 41 year old guy, recovering from Chronic Fatigue Syndrome.
Chronic Fatigue & me @CFS_me
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.
Chronic Fatigue Synd @Myalgic_E
#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
Dancing_with_Sandman @SandmanTweets
Writer, poet, and political blogger. Has severe ME & wears pajamas all day.
Darren Dale @dsdphoto Protected account
A Professional Editor, Author, Photographer & geek near Atlanta, GA, currently struggling with CFS/ME & Fibromyalgia. I shoot portraits, fine art, & weddings.
dee richardson @deebilitated
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
Diana Hamilton @100Birdies4ME
♥ Raising money for @Letsdoit4ME by making 100 felt birdies! ♥ Check out my new website for links to my shops ♥ Alter-ego of @ExtremeFlamingo ♥
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.
Learning to appreciate the little things in life. Writing about health (ME / CFS), happiness and all things lovely. Instagram: @frecklesandallblog freckles-and-all.com
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.
Get Well From ME @GetWellFromME
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
Green Girl Mel @GGFightsFatigue
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.
Long time patient working on website for all of us! Sign up: http://t.co/6Y8co1dLnZ Blog: http://t.co/FF1utFhQyV #spoonie #lyme #cfs #lupus #RA #MS #fibro #pain
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
Jacqueline Ko @jacquikosoprano
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 #MECFS. I want to hear your story. Ex-#bipolar. Sugar phobic. #Mito poor. #Keto–#paleo. #Cancer. 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
Blogging at http://countingmyspoons.com about life with #fibromyalgia #tmj #endometriosis #migraines and #clusterheadaches – Choose Happiness.
Creative, crafty, chronically ill, expat geek with major wanderlust. Making is life. Married to @timmiesaurus.
justbitsandblogs @justbitsandblog
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!
Kate M.E. Awareness @KateMEawareness
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.
kayleigh hills@kayhills235
Addicted to tweeting about everything & anything, especially voicing my opinions on tele programmes! Major bookworm also & love autobiographies. X Featherstone Has Fibro/CFS Group on FB –
Actress: As seen in #Burnistoun and #bbcrivercity http://www.imdb.com/name/nm1062987/ Campaign for M.E. Awareness: @CanYouSeeMEDocu
It’s All About M.E. @Myalgic_ME
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
loullabelle @silverloulou100
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.
Myalgic Encephalomye @MyalgicEncephal
Myalgic Encephalomyelitis
Economist MBA, business woman until I got ME after flu. 3 kids, housebound. http://www.deziekteME.petities.nl. http://www.me-cvs-stichting.nl
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
Pamela Stocks @chaostocosmos
International cat herder with fibromyalgia and ME/CFS
Pamela Sutherland @Ltd_To_Two
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
Pay It Forward 4 ME @payit4ward4ME
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.
Recoveringfrom MEcfs @MECFSrecovery
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
Rich Carson @RichCarsonsDeal
I publish the world’s largest Chronic Fatigue Syndrome and Fibromyalgia newsletters; research addict; owner of ProHealth.com; ‘CFS’ is dismissive-it’s wrong.
RAFibroTucker2010 @RaFibroTucker20
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
Rory Singer @Rorysinger_ayme
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.
Sunshine Me @ME_LifeAndTimes
This is my life with ME; multiple symptoms + mysteries #MECFS #Fibro #Scoliosis #IBS #allergies #ChronicPain #Spoonie – Pls share ur tips for coping #MECFShelp
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
The ME/CFS Ghost @TheMECFSGhost
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!
Toby Morrison @TobiasMorrison
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.
Organisations/Groups/Researchers
Action for M.E. @actionforme
Action for M.E. is the UK’s leading charity working to improve the lives of people with M.E.
Antoinette Christie @mesupportni
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.
Welcome To The Bristol ME Support Group Twitter Page We are also on: Facebook: http://ow.ly/1IdBgC Yahoo Groups: http://ow.ly/1IdBgA
Bristol North FME @BristolNorth
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.
CFIDS Assn. of Am. @PlzSolveCFS
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.
CFS Health Centre @CFSHealthCentre
A health and wellness centre dedicated for those living with Chronic Fatigue Syndrome. Australia
CFS Solutions of WM @cfssolutionswm
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- info@cfsunite.co.uk.
Claudia Gillberg @DrCGillberg
Research, reflection, action, and change. I’m also trying to understand & beat Myalgic Encephalomyelitis.
Cinda Crawford @CindaCrawford
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.S.H @edmesh1205
Edinburgh M.E. Self Help group. ME/CFS Scotland.
LeicesterSupportME @LeicesterME
We are Leicester’s only M.E/CFS/Fibro support group, offering our members with advice and support with their medical condition.
Let’s do it for ME! @Letsdoit4ME
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!
ME Association @MEAssociation
The MEA is the UK’s flagship campaigning charity for people with ME/CFS. We inform and support 250,000 sufferers. Accept no imitations!
M.E. Chronic Fatigue @ME_CFS
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
M.E. Chronic Fatigue @ME_CFS
The illness Myalgic Encephalomyelitis Chronic Fatigue Syndrome #MECFS causes muscle pain & suffering, & is probably caused by toxic chemical poisoning. @ME_CFS
ME/CVS-Stichting @MECVSSTICHTING
De officiële patientenorganisatie voor mensen met ME/CVS, ook wel Chronisch Vermoeidheids Syndroom genoemd
ME Society Edmonton @MEEdmonton
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&Fibro North West @WeBelieveInMe
ME/CFS & Fibro Support Group. Promoting ME/CFS & Fibro Awareness. Unite & Survive!! Believe in ME!
Not Enough Energy @NotEnoughEnergy
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
PortlandFibroCFS @PDXFibroCFS
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 @PHAlert
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 wamcare@gmail.com. The WAMCARE Board of Directors tweets here!
Books/Docos/Media
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)
The Unpredictable Journey. A personal story of surviving the trials and tribulations of ME/CFS (Chronic Fatigue Syndrome) online here : http://t.co/jMVkbePz
Can You See M.E.? @CanYouSeeMEDocu
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
Therapies/Treatments etc
Citynutrition @citynutrition
Clinical Nutritionist in London – acknowledged specialist in CFS/ME, Candida & complex relationship between nutrition & disease & chronic health issues
holistichealingcfs @amysouthorn
Byron Bay · http://holistichealingandcfs.wordpress.com
Wellness Coach specializing in Fibromyalgia and Chronic Pain.
Mickel Therapy @MickelTherapy1
A methodical approach to treating Chronic Fatigue Syndrome, ME, Fibromyalgia & more. Available worldwide.
MicrOTherapy clinic @LindaTherapy
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.
waytorevovery @waytorecovery
Welcome to the mad world of poorly understood diseases like Lyme, CFS/ME, Fibromyalgia, Immune Deficiency and Chronic Infections. (English, German)
Fibromyalgia
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
Fibromyalgia @Fibromyalgia_b
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.
Fibromyalgia-Fibro @Fibromyalgia_
Got Fibromyalgia? How are you feeling today?
Fibromyalgia Journal @fibromyalgiajou
You can see more of my life @ www.fibromyalgiajournal.com.
Fibromyalgia Cure @fibroseize
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/ ♥♥
FibroFighterNina @FibroFightrNina
#Fibromyalgia 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. #spoonie
FibroSurvivorsUnited @CaleenMartin
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) 🙂
Karen Mattis @MyFibromyalgia
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.
Kaye/Krissy @FierceWithFibro
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.
Keep Calm & Hug Pugs @KeepCalmHugPugs
Formerly @blossomzen. Please see my experiences with fibromyalgia and bipolar disorder and blog posts, news and info to share.
Kelsey Devlaeminck @Kdevlaeminck1
Kelsey. Rookie to Arthritis and Fibromyalgia. Diagnoised April, 2012 at 14 years old. Chonically awesome. Holla!
Lisa Pearson @MummyWhisperer
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
Speaker & Holistic Health Practitioner: Living Well with Fibro. Author – FibroWHYalgia. http://t.co/OlqTusSN, http://t.co/9iyKJGMl, http://t.co/4eS7BEc3
TeamSpooniesUnite @SpooniesCouch
(lenore_brown)Founder of #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.
CHRONICLYsILLy @CHRONICLYsILLy
Founder of CHRONICLYsILLy…Chronically Hilarious…I’m Simply complex and perfectly flawed… Have you had your daily dose today? #lupus #spoonie #awareness
chronicIllnessprobs @chronicallycool
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.
Invisible Illness Wk @invisibleillwk
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.
Rosalind Joffe @WorkWithIllness
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
XMRV Positive Survey @XMRVpositive
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?!
Keep Smiling
Louise
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! 🙁
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May 12th says
Do you know if a twitter event is scheduled and at what time?
admin says
No, I’m sorry but I don’t know. I am only just starting to get active on Twitter (which is part of the reason I compiled this list as I would have liked this kind of thing when I was starting). I just tweeted and asked my followers. I’m sure you’ve done the same. All the best & thanks for promoting ME/CFS awareness through your tweets.
Keep Smiling
Louise
Emwithme says
I has sad face right now cos I’m not on this list @emwithme
admin says
You can turn that frown up-side-down Emma cos you’re now ON THE LIST :-). I feel like I’m announcing the list for parts in a Glee musical or saying “C’mon down, you’re the next contestant on The Price Is Right!” (is that a US show too or just Oz??). OR maybe I just have a weird sense of humour ;-). BUT that’s just a long way of saying welcome to my blog & thanks for letting me know I’d missed you. I’ve missed heaps, but I’m hoping people let me know. It took way longer to do it than I’d thought, especially the alphabetical order, but hopefully it will be useful to people. I hope you see other stuff on my blog that interests you too – & pls don’t hesitate to give me feedback either way. Cheers & thanks again – Louise (PS I’m now one of YOUR Twitter followers too!)
Robin says
Thanks so much! Love to see @jacquikosoprano added. Operatic soprano living with ME/CFS. 🙂
admin says
Done Robin! :-). You’re now on the list. Let me know if any of your contacts on twitter have missed out or just RT it & maybe they’ll let me know. I know I’ve missed heaps, but if I didn’t publish it when I did, it would never have been done. Thanks for letting me know so quickly to add you. I hope you see some other stuff on my blog that resonates. All the best – Louise (PS I’m now a follower of you too :-))
Mummy Whisperer says
Can I be added pretty please?
admin says
Sure can Lisa! You’re on the list now. Thanks for contacting me. Please let your friends on Twitter know that I’d be happy to add them too. When I get time I’m going to go through some more people’s lists and add them. It takes a while doing the alphabetical order thing, but I think it makes it much easier to access, so it’s worth the extra time. Interestingly, I just posted a blog about the struggles of motherhood and CFS, which is a topic I’m sure you’d be familiar with. If you have time, please have a read & let me know what you think – CFS & Motherhood: A Complicated Mix on May 12
Mummy Whisperer says
Thank you lovely!
It means I don’t have to keep a list too – think of all that energy you are saving tonnes of us, especially as we need our energy so much ;o)
I’ve put a link to it from my Fibromyalgia page (under my contact info), so hopefully lots of people will find you.
Maggie Wallace says
Hello there Louise, please add me to your Twitter List. @ladycatlover from Liverpool, best city in the world! 😉
admin says
You’re now on the list Maggie! I put you in the CFS/ME list rather than fibro, but let me know if I need to change it. I’ve actually been to Liverpool once, but only briefly. It was pretty much a pilgramage for my boyfriend at the time (later to be my husband) as he’s been a mad Liverpool fan since he was 10. So we just saw Anfield – Liverpool v Burnley if my memory is correct (it was 1994 so memory a little faded). What an amazing atmosphere!! I can still FEEL the buzz of the crowd. Would love to get back there someday to see more. I believe the Bibby Shipping Company is based there (my surname). Our family is originally (way back!) from Lancashire. I used to get excited to see trucks with “my” name on them 🙂
All the best
Keep Smiling
Louise
Kristine says
Could you add us to your list please?
@MEEdmonton
Thanks!
admin says
Done Kristine! I added you in the Organisations section because I see that you represent the Edmonton ME Society. I also now follow you on Twitter :-). All the best from over here in Australia. One of my closest friends is in Calgary & I’ve just found out she’ll be visiting here for work in September – her first time back for 22 years (since a high school exchange!). I’ve been to Calgary & Newfoundland to visit her over that time, but not for 11 years, so I’m very excited. If I lived anywhere else in the world it would be Canada. I love it!
Keep Smiling
Louise
Pajama Daze says
Wow, Louise! Crazy good list! Thank you for taking so much time to compile it! And thanks for including yours truly. So many of us have so many pajama days. We’re quite a club, eh? Blessings!
admin says
Thanks Cam!! As I went into the 3rd hour of putting it in alphabetical order I thought maybe I’d taken on a bit much (:-)), but I’m pleased I did it. It’s really only just a start as I know I’ve missed a lot. Every few days I add a few more people I find. It was just something I wish was available for me when I joined Twitter, so I’m hoping others will find it useful. We ARE certainly quite a club! And as with everything, it is what you make it. I say we make it the cosiest, warmest, smiliest pajama club in town 🙂
Keep Smiling
Louise