CFS Unite @CFSUnite
I have ME and Fibro since 2003. I run a support group for us with chronic fatigue conditions. We are based in |pswich, Suffolk. Follow us on our journey! cfsunite.co.uk Ipswich, Suffolk Joined December 2010-
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We have been busy updating our website but did you know we have a helpful links page with helpful websites for people local to Suffolk and beyond. cfsunite.co.uk/helpful-links
After a break we are back. been busy today making a poster with dates for our monthly meeting, coffee mornings which I have attached for you to look at and book the dates in if possible. Also updated the website pages with our upcoming events - cfsunite.co.uk/upcoming-events
Found these at the library and thought it may benefit some of you. This is Suffolk libraries but those in other areas, your local library might do something similar.
Happy Easter weekend. Hope we all have a lovely weekend. X
Thank you for joining Owen and me for a cuppa today. Lots of talking, great company, playing with cars and only a little mess 😆
Hi all. If you are free Tuesday morning around 10.30 till noon, join me and Owen for a cuppa at Chantry library cafe for a cuppa. They do amazing cakes too.
Fed up of having a compromised immune system. Feel like I have had viruses since Novemer one after another. Come on body help me out. I need a break from these bugs. Anyone else or just me?
Save the date for our late Christmas meal. Tuesday 21st March 2023. More details will follow. X
Happy New Year 2023. Visit our upcoming page to see dates and details for 2023. (cfsunite.co.uk/upcoming-events). I am hoping this year to get in some guest speakers and do more at group including a late Christmas meal so watch this space.
Anyone on Twitter who can recommend any good guest speakers ME/CFS related. Ideally, in Suffolk area?
Hi all. Tomorrow is the 1st November and is our monthly meeting at 13.30pm. Please come along and bring some nibbles. We will do a raffle in the December meeting. G x
Join Gemma for a cuppa and cake at @CFSUnite coffee morning. Thursday 27th October from 10.30 till noon. @IpswichScuba has kindly let me use their facilities. G x
Hi all It is rather late notice but tomorrow's monthly meeting is still going ahead as planned from 13:30 until 15:30pm, so please come along for a cuppa and a chat (maybe a hug too if you need one). -- Kind regards, best wishes and gentle hugs Gemma and The CFU Team
Meeting is today!!!
Today is meeting day. I am looking forward to a much needed cuppa and chat. Join us from 13.30 until 15.30pm. Xxx
Hi all, hope you are all well? Where has the summer gone? For me it has flown by. Our monthly meeting is this Tuesday at St John;s from 13.30pm until 15.30pmish if you want to come along for a friendly cuppa and chat. It would be lovely to see some of you. G X
Anyone else up like me.....i am not ready for how this will make me feel in morning as already in the midst of a fibro flare up.
Anyone else up like me.....i am not ready for how this will make me feel in morning as already in the midst of a fibro flare up.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
#MEAction Network @MEActNet
21K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Katy B @KatyBruce108
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Rivka @Rivkatweets
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Daniel Moore @Talmandaniel
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KT King @KTKINGbooks
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Solve ME/CFS Initiati.. @PlzSolveCFS
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Ben H @benh_mecfs
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Nina A Tomei, MD @doctormom63
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Jan 💙 @jaydee_97
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Jemma Bell @Jem_Jem1983
793 Followers 536 Following 40yr old geek from Suffolk! 🖖🏻 Leisure centre Supervisor, Lifeguard, & Swimming Teacher 🏊🏻♀️ Muse fan 💜Book lover! 📚 #Fannibal #Whovian ✨diagnosed ME/CFS
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Irene @irene51britt
398 Followers 3K Following
Long Covid Sufferer M.. @LCsuffererMECFS
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Justin D Stern @lidlquo
19 Followers 991 Following
CranioCervicalInstabi.. @CranioUnstable
627 Followers 3K Following My entire adult life has been a daily struggle with #cervicalspine instabi(ity symptoms, and now totally disabling and untreated #CCI and #MECFS. Please help!
Nic @LilNic000
471 Followers 3K Following #Disabled & 10x #ChronicIllness inc #pwME for 20 yrs + prob #AuDHD please #WearAMask whovian, history grad, Christian, grey/demi, #ClimateActionNow
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262 Followers 936 Following Myself, I am a Digital Marketer. Currently I do work authentic and useful lead generation. My policy is buyers satisfaction. Thank you for visiting my profile.
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198 Followers 258 Following 🧼 Get booked in with us now for regular cleaning! 📧 [email protected] ☎️ 07376376301 🏘️ Covering all across Suffolk & surrounding areas
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222 Followers 882 Following Former paralegal with chronic fatigue fibromyalgia etc. I help my son with severe bi-polar and his 10 year old daughter. It's not easy.
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2K Followers 790 Following To improve the lives of all people affected by ME/CFS and Fibromyalgia through advancing awareness, care, treatment and research.
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316 Followers 1K Following Life with cEDS is a challenge. Challenges are there to be mastered when they can't be overcome.
Amie fecking Blythe -.. @amie_s_brightly
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788 Followers 751 Following ME/CFS since I turned 40...here to connect and keep up with research. Hopeful that help is on the way.
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385 Followers 1K Following Dr, mother, author: ‘The Missing Link in Dementia’ -my hypothesis of dementia cause, & ME/CFS? ‘Swimming in Circles’ - water pollution & Parkinson’s disease
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Britney's Barbi (MECF.. @JKsBlueWhisper
3K Followers 3K Following Sang BRITNEY & NKOTB (YT: BarbiBoo) 💌♿ #MECFS #EBV #HSD #POTS #PTSD 💞 DONATE, k? (link) 💞
Helen Anderson 🇪�.. @Helen_biochem
2K Followers 3K Following #MECFS #LongCovid #POTS Former Biomedical Scientist. Anti-Tories #GTT0 🇪🇺#FBPE NHS💙 My son has LC/PoTS
Jo Hunt (activism, al.. @HealthHubris
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65 Followers 246 Following
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519 Followers 2K Following the mom of 2 great adult children 2 dogs and a cat. I live with ME/CFS Fibromyalgia Gastroparesis,Vasopastic Angina,Raynauds. and some more fun things. ♥️
Alice Maria @alice_maria28
426 Followers 615 Following #pwME and long time sufferer of #endometriosis 🌻 #adeno & #crohns Dog nerd 🐕 #adoptdontshop #myalgicencephalomyelitis
ME/CFS/Post COVID 19 .. @ME_CFS_Covid19
55 Followers 291 Following I do research in Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) and Post Covid-19 patients. Anastasios Michos
Down with the sicknes.. @fatigueposting
399 Followers 438 Following Tired of this nonsense. M.E. since 2008. Doesn't 'look ill'. He/him
blueboy @TanukiCat2
556 Followers 943 Following 🐈cataholic 🌻plantaholic books music nature photography art Whatever makes me smile 🙂pics my own unless Rt pwME migraine and allergies
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Anil van der Zee © @AnilvanderZee
9K Followers 825 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Tom Kindlon @TomKindlon
14K Followers 578 Following With ME 35 years (29 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 27 yrs
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨
#MEAction Network @MEActNet
21K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Janet Dafoe @JanetDafoe
15K Followers 220 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Richard Vallée @richardvallee
3K Followers 5K Following I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
ME/CFS News @MECFSNews
15K Followers 712 Following News, interesting information and commentary on ME/CFS. My bluesky account is @mecfsnews.bsky.social Looking for paid ME/CFS related work.
davidtuller @davidtuller1
10K Followers 2K Following Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
Sibylle Dahrendorf �.. @sibylle_berlin
6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Joy In The Seasons @JoyInTheSeasons
5K Followers 4K Following Mindfully capturing & sharing little seasonal joys in nature. Currently #JoyInSpring 🌸🌼 Mindfulness & Meditation Practitioner #pwME #Spoonie
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 206 Following Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Jo @cfs_jo
3K Followers 1K Following CFS(!) & POTS diagnosis, ME symptoms - trying to accept. Still me. Sense of humour intact. Also on Insta as JustJoHere and BlueSky as JustJo
Science for ME online.. @s4me_info
5K Followers 282 Following We are an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
ME Foggy Dog 💙 @MEFoggyDog
7K Followers 4K Following Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - https://t.co/TNEwofcNnm
Michael Johns🇺🇸 @Michael_JohnsSr
11K Followers 4K Following Healthcare executive. Former: @McKesson, Gentiva, @EliLillyandCo, @WhiteHouse, @FormerSenSnowe, @Heritage | @MiamiHerbert economics grad | Cell: (609) 670-8142
Bethan Harrington @BethanHarringt1
4 Followers 24 Following Enjoying life and everything it offers. #mecfs #Welshrugbyunion @nchm_wales
Snuggles💜💙💛S.. @Awarding_Women
20K Followers 19K Following Creator of @Woman_InBizHour #WomanInBizHour #fibrowarrior anti-corruption #AnimalLover #StrongerTogether #QueenOf x 3 👑
Sharon Wood @w77006719
572 Followers 3K Following Rheumatology Physiotherapist, who sometimes likes talking to plants more than people!😀 Views expressed are my own.Retweets are not necessarily an endorsement
Autoimmune Warrior @VanmeterAdrian
621 Followers 1K Following I am trying to spread awareness for chronic illness. Sjögren’s, fibro, chronic fatigue, lupus, endometriosis, IBS, migraines. You're not alone 🖤
ME/CFS/Post COVID 19 .. @ME_CFS_Covid19
55 Followers 291 Following I do research in Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) and Post Covid-19 patients. Anastasios Michos
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73 Followers 132 Following What makes me special?! Ask me... I'm a spoonie, a zebra.... 😉 I've multiple chronic conditions, mentally and physically disabled, and so much more! Much love
MattBlake27 @matt_blake27
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Marcus ITFC @scubear
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Massachusetts ME/CFS .. @MassMECFS
2K Followers 790 Following To improve the lives of all people affected by ME/CFS and Fibromyalgia through advancing awareness, care, treatment and research.
Joann Paulus @PaulusJoann
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Thomas Anna @thomas_anna_rat
8 Followers 74 Following Vegan, reuse-recycle, protect the environment, love one another.
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Md. A H Rudro @Badboy_Rudro
262 Followers 936 Following Myself, I am a Digital Marketer. Currently I do work authentic and useful lead generation. My policy is buyers satisfaction. Thank you for visiting my profile.
Nic @LilNic000
471 Followers 3K Following #Disabled & 10x #ChronicIllness inc #pwME for 20 yrs + prob #AuDHD please #WearAMask whovian, history grad, Christian, grey/demi, #ClimateActionNow
Rosanna Wregor @Anonetal123
310 Followers 649 Following Cosmopolitan, DVM, caregiver for soulmate with very severe ME, the barbell keeps me sane. @[email protected]
Bella J Ecclestone @bellaar_
109 Followers 344 Following
Nick Tutt @nickah24
65 Followers 246 Following
NotRecovered @Not_Recovered
6K Followers 206 Following We share the stories of people who have #NotRecovered #LongCovid | #MECFS | #PostVac We fight internationally for research, treatment and recognition.
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348 Followers 3K Following Old critical care RN, Leftie, CPTSD, ME/CFS, ND, AuDHD, Out with the orange blob and his minions!
Shaun Lintern @ShaunLintern
89K Followers 6K Following Health Editor at The Sunday Times. National Press Awards Health Journalist of the Year 2023. Chair of @mjauk. Public interest journalism matters #E17
Vicki Young @BBCVickiYoung
63K Followers 1K Following BBC Deputy Political Editor Follow @BBCPolitics https://t.co/sN002gbmwj
John Roberts @john_actuary
13K Followers 171 Following Actuary for far too many years. Welsh, but now live in the spiritual home of the Wurzels out west. Don’t think I’ve got the accent yet. Like zider though...
Dr Mark Porter @drmarkporter
29K Followers 841 Following GP in the Cotswolds. 37 years @ the NHS. Columnist @thetimes & SAGA Magazine. Ex BBC. Poacher turned gamekeeper. Grandad.
Adam Fleming @adamfleming
113K Followers 2K Following Author. Presenter of BBC’s daily Newscast on BBC Sounds, Antisocial on Radio 4 and Boris on both. Ex-Brussels/Newsround/Westminster
Hugh Pym @BBCHughPym
103K Followers 1K Following BBC News Health Editor covering all aspects of health (UK and Global). Politics and economics of the NHS. Thoughts from staff and patients always welcome.
Dino Sofos @dinosofos
47K Followers 3K Following Founder CEO @Persephonica, Co-founder @CrossedWires_
Andy Cowper @HPIAndyCowper
22K Followers 4K Following Editor, Health Policy Insight/Cowper’s Cut. “Invaluable, insightful, funny: excellent value for money. Subscribe!" @NicholasTimmins @hpiandycowper.bsky.social
Jon Kay ☕️ @jonkay01
60K Followers 1K Following @BBCBreakfast @BBCNews @BBCRadio4 @BBCSounds #BBC500Words #FairyMeadow podcast - link below. Insta: @jonkay01 Enquiries: https://t.co/2cvFBpJJbN
Chris Kendell @CGKendell
324 Followers 609 Following UEFA B licensed coach,love what I do,do what I love 😉
M.E. stopped my life @e_stopped
788 Followers 751 Following ME/CFS since I turned 40...here to connect and keep up with research. Hopeful that help is on the way.
Lu @LuPwME
2K Followers 2K Following Moderate ME/CFS patient. One of the #MillionsMissing since 2016. Animal/nature/wildflower lover. Miss walking, writing and cooking (lost to this illness).
Helen Anderson 🇪�.. @Helen_biochem
2K Followers 3K Following #MECFS #LongCovid #POTS Former Biomedical Scientist. Anti-Tories #GTT0 🇪🇺#FBPE NHS💙 My son has LC/PoTS
Elizabeth (Lisa) Ried.. @ElizabethRied11
417 Followers 692 Following 15 years criminally neglected post-viral MEcfs like Long Covid. 🤕 $998 SSI/mo, only after 9 years unable to work! Denied SSDI 3X!
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
Britney's Barbi (MECF.. @JKsBlueWhisper
3K Followers 3K Following Sang BRITNEY & NKOTB (YT: BarbiBoo) 💌♿ #MECFS #EBV #HSD #POTS #PTSD 💞 DONATE, k? (link) 💞
Fuck Long Covid ❌ @fucklongcovid
5K Followers 3K Following exposed late january 2020, fucked up since march 2020. here to learn and make sense of what's happening inside us. longtime lurker. alt @cancellongcovid
Leonie Potgieter @Despicable_M_E
883 Followers 2K Following Living with M.E. as best I can. Love nature, humans not so much.
Andrea Fighting for #.. @MECFSNanoneedle
926 Followers 3K Following Severe #MECFS Patient Bedridden. No energy to speak. #MECFSBiomarkers #FckTheNIH she/her I am #MECFS Diagnostic Biomarkers biggest fan!
blueboy @TanukiCat2
556 Followers 943 Following 🐈cataholic 🌻plantaholic books music nature photography art Whatever makes me smile 🙂pics my own unless Rt pwME migraine and allergies
Jo Dixon @JoDixon05288381
385 Followers 1K Following Dr, mother, author: ‘The Missing Link in Dementia’ -my hypothesis of dementia cause, & ME/CFS? ‘Swimming in Circles’ - water pollution & Parkinson’s disease
Stealing SSI merchandise of our SSI Instructor Trainer...much fun was had and an order will be put in for the woolly hat as it is very comfortable. #ssidivers #ipswichscuba @diveSSI @IpswichScuba
Good fun on a Saturday stealing @diveSSI merchandise.
Stealing SSI merchandise of our SSI Instructor Trainer...much fun was had and an order will be put in for the woolly hat as it is very comfortable. #ssidivers #ipswichscuba @diveSSI @IpswichScuba
Steve and Gemma are ready for the SSI Assistant Instructor session. Steve has his supplies.
Chronic illness makes my body feel a lot less like a temple and a lot more like a ruin.
So 3.30 in the morning and still no sleep. Having a panic about my health and the future. If anyone really thinks we chose this they really have no clue #ME #MECFS #MillionsMissing #LongCovid
Nice people of Twitter. Where are you? My feed is just angry bile, royal rants and strange takes by Jordan Peterson. Can you let me know you’re still there please. The quagmire seems particularly slimy today.
Anyone on Twitter who can recommend any good guest speakers ME/CFS related. Ideally, in Suffolk area?
I'm delighted to be able to share that I am a finalist in the @RNAtweets Inclusion Award 2022. I'm still stunned by the news but also really honoured.
@CFSUnite hi, I sent an email. Trying to find out more about local weekend events and Zoom meetings.
A bit delayed but congratulations to Amornrat for passing her Open Water and Dry Suit at the weekend, also to Luca for passing his wreck and deep course. Finally a celebration for Debbie gaining her Master Scuba Diver award. @diveSSI #scubadiving
Everyday, but especially on Saturdays, I wake up wanting to participate in my husbands life the way I used to. We used to plot the day of fun or chores to be done together, now every Saturday I grieve and cry. I miss the wife he married. Our life was happy. This is #LongCovid
Sorry to mention the C word early on but SAVE THE DATE... our Santa Christmas Dive weekend at Stoney has now been rescheduled for Saturday 17th and Sunday 18th December 2022. Come join your buddies for a festive dive weekend.
Whoop whoop we have reached 100 followers. We welcome you all and thank you for following us. X
Need to stop scrowling Twitter and sleep. Goodnight/morning all.
4 dryrobes joined together is our record. We also fitted 4 divers in the middle. Keeping warm after diving the wonderful Farne Islands. @dryrobe @farneislanddive
Anyone else up at 1am eating rich tea biscuits, watching awful tv with a glass of milk or just me and my son? P s son is very happy just very awake also awful tv is Bing 🙄
Others said it could not be done but we did it! Today we celebrated Daisy becoming a Rescue Diver. From a Non-diver through to Rescue Diver in a little under 3 months. Thanks to Daisy's determination, hardwork and our excellent and amazingly supportive instructors.
Others said it could not be done but we did it! Today we celebrated Daisy becoming a Rescue Diver. From a Non-diver through to Rescue Diver in a little under 3 months. Thanks to Daisy's determination, hardwork and our excellent and amazingly supportive instructors.
Ollie and Gemma celebrate valentines weekend with heart shaped donuts. We would have eaten more but Ashley (not pictured as busy teaching) ate them 😆.
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