WAMES @WAMESMECFS
WAMES acts as a voice for people with ME/CFS, PVFS their carers, families and professionals. Website: https://t.co/sL34tzYWHX Facebook and Instagram: WAMESMECFS Wales Joined April 2012-
Tweets15K
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Followers819
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Following645
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Likes669
TOTEM. Dr Chris Armstrong & Dr David Fineberg explain study in2 capturing biological data, eg pt-taken blood samples at time tx change, iding biological “fingerprints” linked 2 improvement & developing non-invasive objective markers [14mins]+Trans+Chapters tinyurl.com/2w4ejeeb
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Dewis Cymru - a wellbeing directory giving information & advice about ppl & services in your area about issues that concern you i.e. health, where you live, how safe & secure you feel, getting out & about & keeping in touch with family and friends. dewis.wales
Florence Nightingale is believed to have returned from the Crimea with ME. "She accomplished some of her greatest mathematical & administrative triumphs while unable to leave her bed. Her mind remained a powerhouse, even when her physical body was a cage." tinyurl.com/58en2wy3
Early DRUK research results support a new UK Accessibility Act, to sit alongside and compliment the current Equality Act 2010. 97% support. 87% of individual respondents report regularly encountering accessibility barriers. tinyurl.com/bdse4ec6
Elisa Stein gives an overview of immunoadsorption trials for ME/CFS. In a subgroup of post-infectious ME/CFS patients, autoimmunity forms the underlying pathogenesis and it is important to differentiate between subgroups. [10 mins] Dubbed into English tinyurl.com/3mtv5tda
MERUK overview of House of Lords Debate: "severe ME is a medical emergency that has been neglected 4 decades. Lords called for urgent biomed research, immed interim support & system that finally sees, understands & responds to needs of ppl with severe ME" tinyurl.com/329b3pza
Infoengine is the online directory of third sector services in Wales, listing a wide variety of voluntary and community services that provide information and support. en.infoengine.cymru
Dr Marie Witt introduced pract guide 4 ME/CFS, developed by German Association for ME/CFS & CFC. Then she introduced 3 of most frequently used off-label medications: Pyridostigmine, Low-dose Naltrexone (LDN) & Low-dose Aripiprazole (LDA). [14 mins] English tinyurl.com/mb3nnmty
Cofrestrwch nawr ar gyfer gweminar ME Voices Cymru ar ddydd Llun 29 Mehefin, 1230-1330, pan fydd BIP Hywel Dda yn rhannu sut y gall eu Gwasanaeth LC a ME/CFS gefnogi pobl sy'n byw gyda ME/CFS yn y 3 sir yng ngorllewin Cymru. tinyurl.com/5y8btxpj [email protected]
Register now for ME Voices Wales webinar on Mon 29 June, 1230-1330, when Hywel Dda UHB will share how their LC & ME/CFS Service can support people living with ME/CFS in the 3 counties of west Wales: Ceredigion; Carms; Pembs tinyurl.com/5y8btxpj [email protected]
UK gov has been accused of an “outrageous” failure to listen to disabled campaigners who've been calling 4 ministers to inc far stronger measures on accessibility & disability rights in railways bill. Key amdts on disability rights were not debated by MPs tinyurl.com/5bz6xtch
Dr Chris Armstrong & PhD student Jamie Elliott discuss MELOPIS, an ambitious multimodal imaging study of ME, long COVID and POTS [8 mins] +Transcript +Chapters tinyurl.com/2pjr8hkf
As a photoger, after yrs of telling other ppls stories, I turned camera toward myself. I began to photog what I was living thru, to prevent myself from disappearing. This is my story, my moms of doubt, pain & fog but also my glimpses of hope & poss of hlg tinyurl.com/5fyzuuw6
Whitney Dafoe explores impossible decisions ME/CFS patients have to make, constantly having to decide between 2 options that will both make our health worse. & how much more difficult these decisions get when they involve non ME/CFS medical needs. [6 mins] tinyurl.com/22a2ve6x
Using Raman spectroscopy (RS) and machine learning (ML) as a potential rapid and scalable tool for diagnosis. A discussion of Dr Alain Moreau's study. 1 July @4pm BST. Register in advance. tinyurl.com/yvp6prpx
The turn2us website gives financial info for many different situations: applying for benefits or grants; cost of living; carers; ill or injured; low income; older person etc. Plus find out if there is an adviser in your area. tinyurl.com/ms34dt5j
Dr Claudia Kedor presented results from an observational study on the efficacy of hyperbaric oxygen therapy (HBOT) for ME/CFS. [10 mins] Dubbed into English tinyurl.com/3mrk9dmw
#MEAction welcomes caregivers of people with chronic diseases such as ME, Long COVID, MCAS, etc. to an international support group on Sat 20 June, 6.30 pm BST [held 3rd Sat each month] tinyurl.com/332u8yyv
MERUK reports on a pilot study into the use of hyperbaric oxygen therapy for ME/CFS, which produced postive results. They will now do a study using improved methodology. tinyurl.com/3yktvvt7
MERUK explores pilot study that used low cost Raman spectroscopy to analyse blood plasma. “RS-ML may contribute to improved patient stratification, more objective assessment of disease activity & better understanding of biological mechanisms underlying ME” tinyurl.com/ywed7nnk
Katy B @KatyBruce108
6K Followers 6K Following Myalgic Encephalomyelitis ME + POTS 39 yrs Donor to @mecfsbiobank for 10 years & @DecodeMEstudy Please watch https://t.co/pUUJO34e5k #pwME
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Lizzy H @hopefullizzy
8K Followers 3K Following 30y/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✨
Tom Kindlon @TomKindlon
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Naomi Harvey “PhD W... @Naomi_D_Harvey
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Carole Bruce @CaroleBruce17
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Dan Wyke 🦠➡️�... @Dan_Wyke
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ME Foggy Dog @MEFoggyDog
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Dr Nicola Clague-Bake... @ClagueNjc36
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ME Association @MEAssociation
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John Peters @johnthejack
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Natasha @natasha_bud59
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Pekka Puupää 🇺�... @Raichu_pokem0n
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Julie @Julie6999443610
17 Followers 487 Following
Sophie Constant @Sonichkachacha
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Princess Cammy 👑 @lifecamellia842
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Ashley @Ashley1538808
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Mark Kent @MarkKent225105
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ABEMDIS_X @Abemdis_X
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💚🤍💜Hoardosau... @coccinellanovem
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Lisa @lilLeeLee168
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Elisabeth Klaar @lammas_leaves
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Lamis Al-Masri🇵�... @LamisAlMasri28
130 Followers 820 Following I have 7 children, my son suffers from asthma, and my husband is paralyzed… I am living pain beyond my strength, and I have no one left but your mercy
Тania Melnyczuk @ekverstania
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Sarah Barker @SarahBarx035
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Martin Blond @blond_martin
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hungry scowl 🦑 @grouch_bag
340 Followers 4K Following I used to have a life. then I got Long Covid and ME/CFS. The part of my life where people treat me like a person is now over
In the abyss. @AbyssPearl
933 Followers 278 Following On essaie de tenir le coup 🧠🫀 fighter. survivor. #mecfs, depanx, #pots, allergies & other. I'm one of the millions missing. chronic illness FR-EN
Bee 🫒🌼✨ @elbecp
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Paula Knight @Paula_JKnight
6K Followers 3K Following Author Illustrator Comics Creator THE FACTS OF LIFE (Myriad) Kidlit books x3 author. Disabled. Bedridden 8yr v severe M.E. IG: @paulajkstudio
Vikii💙 @Vikii90155420
2K Followers 5K Following Wanting to learn more, for a better world, for my beautiful children. Have been inspired and frightened in equal measure since joining Twitter.
Aylen @aylenallen
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Vijay Iyer PhD @vijayiyer312
4K Followers 3K Following Org disclosures: volunteer @Ansyme_ & employed @MathWorks (maker of #MATLAB). The rest of me you can puzzle out 🧩. Tweets my own.
Una @UnaMcneill
1 Followers 212 Following
ChronicMum @ChronicMum
5K Followers 2K Following Alleinerziehend, twittert u.a. über Inklusion, Behinderung, #Autismus und den Alltag damit. Post Covid, CFS, 👨🏻🦼➡ #NoABA, ♀ Sie/ihr 💙💛 #TeamHabeck
Michal Tal, PhD @ImmunoFever
15K Followers 10K Following Immunoengineer @MITdeptofBE finding new ways to MEASURE and interpret #inflammation #SexDifferences #ChronicLyme #LongCOVID. Mom of 2. prev/ @Yale, @Stanford.
Clara Valverde @enfermarebelde
5K Followers 7K Following Sick anarchist. Rebel writer. Retired nursing professor. Canadian expat. #ME/CFS #CriticalGeography #FreePalestine #Feminisms #FrailButFurious #SectBusters
Karin @Karin189678
43 Followers 573 Following
Julie Sullivan @CureLongCovid
6K Followers 4K Following Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate (she/her) 💕
Peter Owen @TickPete
0 Followers 743 Following Used to be a photographer. Now can't work. Suffer from Tick-borne infections and rare parasite Gnathostomiasis.
witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. sicko: Useless Eater.
Still Ill @shitthatzsays
222 Followers 7K Following #neisvoid I often delete old posts. Nothing personal.
Transport for All @TransportForAll
16K Followers 1K Following Disabled-led campaign group fighting for transport justice.
Stripy Lightbulb CIC @StripyLightCIC
2K Followers 2K Following Evidence-based #CPD #mecfs #etraining for #employers, #healthcare and #education professionals and orgs. M.E.-Friendly Hospital Charter - https://t.co/Dr0aLqZSse
MARVIS @jelly11560631
592 Followers 3K Following
Dr. Philip Ovadia MD,... @princiinicole
201 Followers 1K Following You'd be betting against over 3,000 surgeries I've performed and 4 years of running the biggest metabolic health centric concierge telemedicine practice
Christine Robinson @Christi9RF
2K Followers 5K Following
Katy B @KatyBruce108
6K Followers 6K Following Myalgic Encephalomyelitis ME + POTS 39 yrs Donor to @mecfsbiobank for 10 years & @DecodeMEstudy Please watch https://t.co/pUUJO34e5k #pwME
Wading through treacl... @kimisgubbed
3K Followers 3K Following Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬
Tom Kindlon @TomKindlon
15K Followers 621 Following With ME 37 years (31 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 29 yrs
davidtuller @davidtuller1
11K 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.
Naomi Harvey “PhD W... @Naomi_D_Harvey
17K Followers 4K Following Zoologist. She/her. ME/CFS since 2002, now Severe. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Janet Dafoe @JanetDafoe
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Carole Bruce @CaroleBruce17
7K Followers 5K Following 💙Art, Nature, Books, Some Music. Severe ME 32 years. Daughter severe 38 years. Furious about treatment of ME. https://t.co/gEIrl86Wim
Billy Hanlon @bhanlon15
14K Followers 14K Following ME/CFS | Long COVID | IACC | https://t.co/Qitpgq8anF | Stand with Minnesota
Dan Wyke 🦠➡️�... @Dan_Wyke
13K Followers 6K Following M.E. inactivist; person-centred counsellor (currently not practicing); recovering poet (Rack & Waterloo Press)
European ME Coalition... @EMEC_advocacy
1K Followers 69 Following Advocacy organization for ME/CFS patients and their carers in Europe
ME Foggy Dog @MEFoggyDog
7K Followers 4K Following Working to improve the quality of life of M.E. patients using every available means and opportunity #SocialEnterprise #pwME Linktree - https://t.co/TNEwofcNnm
Dr Nicola Clague-Bake... @ClagueNjc36
4K Followers 2K Following PT researcher/Senior Lect @LivUni co-founder @physiosforme | PhD | neuro rehab/ex physiology/ME/Longcovid/EDI/all views my own she/her
Science for ME online... @s4me_info
5K Followers 263 Following We are an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us.
Illustrator Interrupt... @FranceyME
3K Followers 2K Following https://t.co/jrET531Men illustrator, writer, photographer. Career interrupted indefinitely by myalgic encephalomyelitis #MECFS @franceyme.bsky.social
ME Association @MEAssociation
19K Followers 2K Following We raise funds for medical research into ME/CFS and provide support, information & campaign for people in the UK. RPs do not necessarily mean endorsement.
John Peters @johnthejack
5K Followers 6K Following Unbeliever (political & relig), Wales rugby, #c4news, porridge, #MEcfs johnthejack.peters https://t.co/DO2RA0zRnE
Dr Keith Geraghty @keithgeraghty
8K Followers 496 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based researcher & chartered psychologist |@FBMH_UoM, @PrimaryCareMcr
Physios For ME @PhysiosForME
7K Followers 554 Following A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME
Tracey Burgess @TraceyABurgess
4K Followers 4K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
#MEAction Network UK @MEActNetUK
7K Followers 580 Following #MEAction UK focuses on campaigning and advocacy in the UK a part of the charity MEAction UK.
Over Worked @worked_over
693 Followers 3K Following We are living in a much darker version of Idiocracy.
Pekka Puupää 🇺�... @Raichu_pokem0n
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Sophie Constant @Sonichkachacha
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💚🤍💜Hoardosau... @coccinellanovem
22K Followers 10K Following “If a woman cannot stand in a public space & say, without fear of consequences, that men cannot be women, then women have no rights at all.” Helen Joyce
Lisa @lilLeeLee168
854 Followers 4K Following EBV 95 1st of 3 COVID INF 3/13/20 into LONGCOVID Two Physir Vac Inj 3/21
Elisabeth Klaar @lammas_leaves
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Тania Melnyczuk @ekverstania
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Sarah Barker @SarahBarx035
769 Followers 2K Following #SevereME #ModerateME #ME wildlife, soil,fauna,flora,
Kirst @kirstler31
2K Followers 1K Following Long Covid since March 2020 😷. Bed-bound due to vaccine induced v severe ME/CFS & POTS. I can’t keep up with DMs, replies may be rare
hungry scowl 🦑 @grouch_bag
340 Followers 4K Following I used to have a life. then I got Long Covid and ME/CFS. The part of my life where people treat me like a person is now over
ChronicMum @ChronicMum
5K Followers 2K Following Alleinerziehend, twittert u.a. über Inklusion, Behinderung, #Autismus und den Alltag damit. Post Covid, CFS, 👨🏻🦼➡ #NoABA, ♀ Sie/ihr 💙💛 #TeamHabeck
Vijay Iyer PhD @vijayiyer312
4K Followers 3K Following Org disclosures: volunteer @Ansyme_ & employed @MathWorks (maker of #MATLAB). The rest of me you can puzzle out 🧩. Tweets my own.
Aylen @aylenallen
13 Followers 438 Following
Vikii💙 @Vikii90155420
2K Followers 5K Following Wanting to learn more, for a better world, for my beautiful children. Have been inspired and frightened in equal measure since joining Twitter.
Bee 🫒🌼✨ @elbecp
2K Followers 4K Following Public Health student 🇦🇺 🇫🇮 Plant person. AuDHD. Chronically curious. Alphabet soup connoisseur. ♐⬆️ | ♃ in ♉ @elbecp.bsky.social
Paula Knight @Paula_JKnight
6K Followers 3K Following Author Illustrator Comics Creator THE FACTS OF LIFE (Myriad) Kidlit books x3 author. Disabled. Bedridden 8yr v severe M.E. IG: @paulajkstudio
Karin @Karin189678
43 Followers 573 Following
Michal Tal, PhD @ImmunoFever
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Julie Sullivan @CureLongCovid
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witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. sicko: Useless Eater.
Transport for All @TransportForAll
16K Followers 1K Following Disabled-led campaign group fighting for transport justice.
Dr. Philip Ovadia MD,... @princiinicole
201 Followers 1K Following You'd be betting against over 3,000 surgeries I've performed and 4 years of running the biggest metabolic health centric concierge telemedicine practice
PreciousLife @DisWelS
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廖Liao🇵🇸🏳�... @liaochunwei3333
112 Followers 374 Following Interested in a lot,can do a little. ME/CFS patient.Not active, reading/writing non-native languages is very tiring.(her/him/them/I don’t careヽ(。_°)ノ
POTS Person @PotsPerson
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Dr Monya De MD MPH @medjournalist
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Lindsey 💀🇨🇦 @linds_longcovid
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Hope08 @Hopeless0808
183 Followers 298 Following
Carrie Anna McGinn @Carrie_McGinn
1K Followers 2K Following Infection-associated chronic illness advocate | MSc | #PatientPartner | She/Her | #MECFS #pwME #POTS #LongCovid #CovidLongue #CovidLong #IACI #MaskUp #CleanAir
Jochen @JochenSde
298 Followers 2K Following #Dad #Husband #noAfD Born at 337ppm - Views are my own.
Marie-Yianna Kalekas @MYKOsborne
368 Followers 3K Following
🌺 SqueebleBeeble �... @SqueebleBeeble
82 Followers 763 Following
brit_borg @brit_borg
2K Followers 4K Following De zachte krachten zullen zeker winnen in het eind -HRHolst/@maurosvrienden @onskinderpardon - #fraudevinkje #code98 #MEcfs #JournalismIsNotACrime
Klipp & Klara Name @DPhilvon
959 Followers 4K Following „Wenn Menschen, die sich ehrlich irren, die Wahrheit erfahren, werden sie entweder aufhören, sich zu irren, oder aufhören, ehrlich zu sein.“
Emily Johnson (is on ... @emily_rj
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Kit 😸 @kitkat1589711
212 Followers 989 Following Biology, science and reality. I support single sex spaces as protection and fairness for all girls and women in life and sport. 🐕🐈🐓
ME/CFS Legal Resource... @MECFSLegal
43 Followers 62 Following The ONLY DGR Charitable NFP focusing on ME/CFS & Long Covid legal issues - providing resources, information & advocacy to assist people with ME/CFS since 2001.
BozzyCorr @BozzyCor
43 Followers 996 Following
たこす。 @tcs07023041457
2K Followers 2K Following 通りすがりのご近所さん｜たこす。の研究所｜ME/CFS CSF減少症｜一人暮らし難病サバイバー発信｜個人ピアサポート｜映像×デザイン｜note→ https://t.co/ZJ0oLrdQnd たこす。の電話 07023041457 着信専用9-20時
Jackson Riso @JacksonRiso
130 Followers 309 Following Turning chaotic businesses into automated digital factories. #LongCovid
Nomadic Soul @Nomadicsoul1978
196 Followers 4K Following One man's terrorist is another man's freedom fighter 🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸🇵🇸
Alina MSN, RN, CCRC @Alina_MSN_RN
2K Followers 1K Following Registered Nurse. Over a decade of research experience. Moonshot founding member formerly @ Columbia, NYU, Mount Sinai & HSS
Leni @Leni3500
161 Followers 2K Following
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