Alice Fricker💘 @FrickerAlice
19, Bedridden for 8yrs with #VerySevereME #hEDS #SFPN #MCAS #PoTS Chronic Insomnia & Chronic Bladder condition. Mother helps run account. instagram.com/aliceandthemil… Cornwall, England Joined September 2019-
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It is insulting and outrageous to those with #VerySevereME to say that these changes would help them recover and imply that not doing so means they aren’t trying. BACME is a disgrace, and nothing but a swift parting of ways with any connections will satisfy me. @MEAssociation
BACME documents on Severe CFS/ME talk about ‘incremental pacing’ and ‘gradually increasing activity and tolerance’, and a ‘gradual programme of starting to sit’ or ‘sit out of bed’. In regard to sleep, they suggest ‘gradually introducing daylight’, and ‘reducing sleep duration’.
We need lawyers, we need medical professionals who are finally prepared to stand up to the pyschologistation of #ME and #LC and we need support from anyone who actually gives a fuck!!! Journalist, celebrities, anyone!!! #SaveCarlasLife #MEawarenessHour
We need lawyers, we need medical professionals who are finally prepared to stand up to the pyschologistation of #ME and #LC and we need support from anyone who actually gives a fuck!!! Journalist, celebrities, anyone!!! #SaveCarlasLife #MEawarenessHour
How can people support the NHS? I know people say they do good. But the obstinate views and extreme ABUSE they’re causing to Carla and us #VerysevereME suffers, to me, outweighs the good. #SaveCarlasLife #BringMilliehome #ExposeMENow #MEAwarenessHour @Channel4News
How can people support the NHS? I know people say they do good. But the obstinate views and extreme ABUSE they’re causing to Carla and us #VerysevereME suffers, to me, outweighs the good. #SaveCarlasLife #BringMilliehome #ExposeMENow #MEAwarenessHour @Channel4News
And don't think for ONE SECOND I won't release the names of the doctors involved in #SaveCarlasLife #BringMillieHome under the defence of public interest along with emails we've had from the so-called charities and experts in #MEcfs
And don't think for ONE SECOND I won't release the names of the doctors involved in #SaveCarlasLife #BringMillieHome under the defence of public interest along with emails we've had from the so-called charities and experts in #MEcfs
How barbaric can this get! This poor young girl treated with such neglect and so much harm. Likely affected by M.E for the rest of her life. How dare they treat Carla like this! #MECFS #SaveCarlasLife #ExposeMENow #womenshour @VictoriaAtkins @mimsdavis @Channel4News
How barbaric can this get! This poor young girl treated with such neglect and so much harm. Likely affected by M.E for the rest of her life. How dare they treat Carla like this! #MECFS #SaveCarlasLife #ExposeMENow #womenshour @VictoriaAtkins @mimsdavis @Channel4News
We have an update on #SaveCarlasLife: the hospital are now persecuting Pierre and Caroline because staffs' scandalous behaviour has become an international story. This is the same behaviour we're seen with #BringMillieHome. However, we have bigger updates tomorrow #ExposeMENow:
@Rachael_Swindon @NicolaCJeffery My beautiful girl, been treated with selfishness away from any kind of love or mercy 😢
@actionforme @SonyaChowdhury @5_News How DARE AFME TAKE THE SPOTLIGHT you have caused this fiasco with supporting BACME undoing all our hard work @MrTopple has been with this family WHERE WERE YOU where is you responsibility’s to the community to stopping this absurdity of BACME
Where are you @MEAssociation @actionforme ??? Ensuring people don't die from ME should be your top priority! Why aren't you tweeting about #SaveCarlasLife #ExposeMENow like the rest of us? We need your help NOW!
Medical abuse has to STOP. All hospitals need to follow the Nice Guidelines and listen to the Severe ME experts. The biopsychosocial model harms patients. Resulting in inhumane treatment. @VictoriaAtkins @gmcuk @RCPhysicians @rcpsych @NHSEngland @sajidjavid @ChelwestFT
This must change NOW!❗️ Losing consciousness, stroke-like symptoms, seizures - Carla who has very severe #MECFS needs urgent help! Instead medics ignore experts and worsen suffering with light & sound and cancel referrals. #SaveCarlasLife @RCPhysicians @PSCommissioner @gmcuk 🧵👇🏻
#ExoseME #SaveCarlaslife we have had enough of the mistreatment, gaslighting and abuse to severe M.E patients, it has to stop! Read the nice guidelines and talk to the professionals that know! @thismorning @Channel4News @womenshour @BBCNews @itvnews
Studies rank severe & very severe ME as the lowest quality of life of all major diseases including AIDS and cancer Yet, due to decades of misinformation & stigma, the UK have no help to offer - even when it’s life threatening 🙏 help ask for more organise.network/actions/petiti…
Ppl will say "listen to your doctors" when what they mean is "obey your doctors". In actuality, listening to your doctors needs to include listening to how they talk to and about their patients -- because that will also tell you a lot.
Millie is continually in Alice and I’s (mother) thoughts. It’s terrifying and utterly despicable knowing how much harm Doctors cause to us very severe M.E patients. A lot of us have been in similar positions, if only we could be treated as human beings. #savemillie @CareRoyal
Millie is continually in Alice and I’s (mother) thoughts. It’s terrifying and utterly despicable knowing how much harm Doctors cause to us very severe M.E patients. A lot of us have been in similar positions, if only we could be treated as human beings. #savemillie @CareRoyal
Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm - Sign the Petition! chng.it/5wSTDCJx via @UKChange
🇩🇪 dermot gabri.. @RaadGabrael101
251 Followers 358 Following vriend voor iedereen die geen onverdraagzaamheid kent. wees mijn vriend!!!
Hannah Sharland @h_sharland
516 Followers 2K Following Staff writer for the Canary. Covering climate and ecological crisis. Climate activist. Here to learn about climate justice. She/her. #ME #CFS
G R A C E 🌸 @withgrace___
88 Followers 292 Following 🥀 severe ME/CFS mama to baby son ❤️ heart full, body broken 🌻 INFJ
OMFCharityMugs @BFWoodburn
10 Followers 163 Following Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵
Katharina 🍀 @katha.. @katha1970
884 Followers 2K Following Here for research + info on #ChronicMigraines #MECFS #LongCovid #MCS #MCAS #ChronicPain #Neuroscience #Psychology #MedicalGaslighting, posts German & English 🎶
Chronically Illumise .. @ChronIllumise
22 Followers 240 Following Lily. #pwME, pwPOTS, Pokémon fan (she/her).
Renate-new account�.. @Renate834601
83 Followers 423 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
Angie B @quinky_dink
5K Followers 4K Following Chronic pain patient. Multiple autoimmune diseases. Patient Advocate. Fighting the fight of my life everyday.
Tamara Jade @xTamaraJadex
491 Followers 2K Following Aspie mama of 1 amazing aspie teen girl ♥️...& 2 nutty Staffies🐾😂
C-B's Ghost @C_M_B_B_
311 Followers 570 Following
Reform Advocates @AdvocatesReform
563 Followers 1K Following Campaigning against Injustice in Children's Social Care - Advocating for the invisible - Creative writer and budding journalist - Uniting the community.
#NotJustFatigue @njfatigue
582 Followers 653 Following We are a 501(c)(3) sounding the alarm on ME/CFS through digestible, creative content. This is #NotJustFatigue
padre @hanauchocolat
229 Followers 1K Following i like shakespeare, lipstick, buildings, books and binge-watching. bit of a mess. chronically ill with ME/CFS ✌🏼 fan of civil conversation
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
Luna @katherine_71375
9 Followers 795 Following
🌻Kirsty @Kirstycfsmelife
587 Followers 712 Following CFS/ME 15+ years and POTS 🐼 trying to improve my health and one day fully recover
Luna @usSarah120745
9 Followers 771 Following
Amy @alexandrite113
6K Followers 845 Following Long Covid to very severe ME/CFS to mod/severe ME/CFS. Tweeting into the void. DX'd autistic ✨
InvisibleGLove @GoreLloyd
449 Followers 728 Following DELTA-qualified EAL teacher; previously in EFL, ESOL and EAP (and subtitling). Caregiver to partner with v severe ME from Long Covid She / her
EPIPOLE of Phoenix @EpipoleofPHX
1K Followers 3K Following WRITER, DISABLED, PRO-CHOICE, PRO-WOMAN, FEMINIST, ANTI-EPIDURAL,ANTI-ESI,NOZEMPIC(CSF leak, HT, migraines,EBV, spinal lipoma & BPD)LET’S GET WOMEN TALKING!
Jan Albrecht @janaman729
65 Followers 460 Following Entrepreneur | HYBRID-Lifestyle @jan.a.team.coaching - Coach @myproteinde JanMYP @hyroxger Pro Athlete
Nic McPaul @NicMcpaul
198 Followers 449 Following Life on pause since 2012. PWME PASC MCAS POTS HEDS CSU. Raising Awareness & advocating when health allows 🏴
Jane Fernandez @CubaninJane
60 Followers 970 Following
Victoria @VicGoesk
263 Followers 4K Following
babs @halfateaspn
202 Followers 551 Following 20s. she/her. disabled, queer and poc. ME/CFS and comorbidities. mostly bedbound. no bigots. be kind. 🇵🇸🏳️🌈🏳️⚧️
Ciprian Mihai Marin @Ciprian20Marin
158 Followers 3K Following
Etta Loveday @EttaLovedayME
355 Followers 172 Following She/Her, Rising awareness for people living with severe/very severe ME! #ME #SevereME
Ellie Fry @iEllieFry
3K Followers 1K Following Deputy Online Features Editor @DailyMirror | Previously @Independent | Contact: [email protected]
Himmat @himmatb15
955 Followers 666 Following Writer and editor on pause due to Long Covid/vaccine injury since 2021. Severe and fully bedbound since 2023. ME/CFS | POTS | hEDS. he/him
Pacing Hearts 💖Dat.. @hearts_pacing
24 Followers 258 Following Dating for those seeking love amid resilience – finding connections beyond conditions on the journey of long COVID, ME, and autoimmune battles. 💖 #Chroniclove
The Foggy System🌫�.. @thefoggysystem
308 Followers 494 Following Comes with the occasional fun fact! | white | Queer | Disabled, Autistic, Mad, Obviously Plural | Anarchists | pfp picrew by zmermeladka
Air Quality Bay Area @WildfireLungs
1K Followers 5K Following Falling by the wayside since before I was told to. ME/CFS, POTS, MCAS, neuropathy, etc. For smoke forecast maps see: https://t.co/q3xn2jUxIy
Dylan Diaz-Infante @DylanDiazI45659
181 Followers 2K Following Sociocultural Anthropology PhD student @ASUBeingHuman. Transborder political ecology and water insecurity research. https://t.co/oexTONKL0N he/they
Mike Goodman 🏴.. @MikiTGee
82 Followers 646 Following Pro Scottish Independence, Palestine. Enjoy Novara Media, Electronic Intifada, Al Jazeera, Democracy Now! Eyes opened by economist Richard Murphy on YouTube!
Royal Free 1955 @RFH1955
2K Followers 2K Following ME/CFS archive, especially RFH 1955. For education, not profit. Research @CiaranJ_Farrell & @Needles_Toosay. https://t.co/bYPmViWQCG.
Fatih @fatihnomad
437 Followers 1K Following #LongCovid #Dysautonomia #POTS patient since November 2020 #BC007
Ryan @RyanAhdoot
0 Followers 9 Following
Andy @AndyBayo_
350 Followers 2K Following Chronic Fatigue. Orthostatic Hypotension. Heat Intolerance. Impaired Cognition. Possible CCI. Possible brainstem compression. #mecfs #mespine #severeme
Nina @Nina17736767150
63 Followers 201 Following
Merry Fox @FizzylocksFox
530 Followers 1K Following I have severe ME/CFS. It affects my every waking moment. And most of my sleeping ones, too. If I was better tomorrow, the first thing I would do is walk my dog.
Cambridge ME group @CBMEgroup
1K Followers 2K Following CBME is a support group based in #Cambridge UK for people with #MECFS, #MyalgicE , #CFS, #PostViralFatigue, #Fibromyalgia, including #pwME caused by #LongCovid
🌱 katski 💙 @katkatski
15 Followers 808 Following
Sarah Rice @ricecakes0913
465 Followers 2K Following My tendency to make up stories&lie compulsively for the sake of my own amusement takes up a good portion of my day -ChelseaHandler #ΦΜ #HTTR #teamrage #lacrosse
Elizabeth Ansell @elizansell
684 Followers 2K Following Founder @njfatigue. Previously at Showtime and ABC News, among other places. Quit career due to #MECFS. This is #NotJustFatigue.
Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
Carol L. Binks @carolbinks
3K Followers 2K Following Healing myself. Supporting others with neuroendocrine/immune system illness commonly known as #ME. Sharing research. Denouncing unscientific claptrap. #MCAS
Manhattan before 1990 @ManhattanBefore
1K Followers 3K Following Sharing historical photographs of New York City, prior to 1990.
Jennie Jacques @JennieJacques1
19K Followers 412 Following avid reader 📚 lover of science 🧪 🧬 actress 🎭 & writer ✍️ #disabilityswareness 🌻 #mecfs 💙 @bake4mecfs
Heath @MEawareness
1K Followers 2K Following #MyalgicEncephalomyelitis(M.E) sufferer. I had a virus & didnt recover. Are questions usually rhetorical? I cannot give blood, ever: https://t.co/tU1sspbOiU
Pierre Naoum @PCCC90
92 Followers 181 Following
Syd @fcknsyd
2K Followers 1K Following 24 year old who’s life is currently on pause because of #LongCovid since April 2022 #POTS #Dysautonomia #MECFS #hEDS @CadAgainstLC
Tim @TimofejM77894
130 Followers 236 Following Severe myalgic encephalomyelitis triggered by mild COVID
Hannah Sharland @h_sharland
516 Followers 2K Following Staff writer for the Canary. Covering climate and ecological crisis. Climate activist. Here to learn about climate justice. She/her. #ME #CFS
Valerie Eliot Smith @ValeriEliotSmit
3K Followers 747 Following Independent researcher living with myalgic encephalomyelitis (ME) since 1981. Barrister (retired) #TMTlaw Visiting scholar @QMUL Blog at https://t.co/HWItDyrb9H
Emma, thechronicsurvi.. @chronicsurv1vor
58K Followers 45K Following Aspiring Author ✍🏼📖 |Singer/Actress, Trainee Therapist on hold due to #MECFS ♿️ for 6 years | #POTS / #IST✨Spiritual Awakening. Lessons from the void. 💖
The Real M.E. 👩.. @therealmecfs
1K Followers 675 Following Chronically ill and disabled person with lots of personal opinions who sometimes likes a hat. That is all. She/her/it. oh and on the spectrum apparently.
UniteToFight2024 @U2Fight_World
3K Followers 121 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.
Sebastian Faulks @SebastianFaulks
7K Followers 472 Following New novel THE SEVENTH SON (Hutchinson). Others republished in Penguin p/bk. Main pic Thiepval, Somme, June 30, 2016, as vigil began.
Illustrator Interrupt.. @FranceyME
3K Followers 2K Following Illustration career interrupted by #ChronicIllness advocating for #MyalgicEncephalomyelitis #LongCovid #GWI #POTS #EDS @franceyme.bsky.social
George Monbiot @GeorgeMonbiot
583K Followers 3K Following The corpse at every wedding, the bride at every funeral.
BBC Woman's Hour @BBCWomansHour
242K Followers 7K Following Topical conversations to inform, challenge and inspire 📻 @BBCRadio4 10am Mon-Fri, 4pm Sat or anytime on @bbcsounds 🎧 Presented by @itsanitarani and @bbcnuala
Emma Barnett @Emmabarnett
190K Followers 12K Following BBC Broadcaster: @BBCWomanshour Newsletter: ‘Trying.’ Column: @theipaper. Author: It’s About Bloody Time. Period 🩸 Patron: @smartworkshq
Amy @alexandrite113
6K Followers 845 Following Long Covid to very severe ME/CFS to mod/severe ME/CFS. Tweeting into the void. DX'd autistic ✨
Abi Mills @childminderabi1
204 Followers 214 Following she/her. here to expose #medicalabuse of those with ME
Sarah Mac @grannyash510
929 Followers 3K Following M.E for 19 years. Views of fairness and equality for all. Here to learn and to be kind (usually 🙃). NHS supporter. Pro Science and knowledge.
Private Eye Magazine @PrivateEyeNews
670K Followers 0 Following Britain's best-selling news and current affairs magazine with a unique mix of jokes and investigative journalism. https://t.co/YxU5lc50Tn. Subscribe: https://t.co/GtTmLGqEPj
Sabrina Poirier (On H.. @Sabrina_Poirier
6K Followers 6K Following Community Builder / Passionate Collaborator / Chair - #MedicalEducation Group / #ResearchPartner / #MECFS #LongCovid Advocate / #PwME / #MCAS / #POTS / #Fibro
I🖤 @inadarkroom247
906 Followers 311 Following 25, UK and Dying from covid induced very severe ME. POTS + mild MCAS. FUNCAP 1.2
Laura Elliott @TinyWriterLaura
14K Followers 2K Following Writer, maker, chronic illness incubator. Disabled journo. Words in @guardian, @MetroUK, @theipaper, @BylineTimes etc. Rep’d by @PortyLiterary
Etta Loveday @EttaLovedayME
355 Followers 172 Following She/Her, Rising awareness for people living with severe/very severe ME! #ME #SevereME
Erin C. Sanders, MSN,.. @ErinSandersNP
19K Followers 9K Following Proud Mama & Wife | Nurse Practitioner & Clinical Scientist | Prev MIT, Stanford | #Disabled ♿️ | #WomxnsHealth 🧠 | Catalyst | Connector | #JusticeAccomplice
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
Renegade Research @RenegadeRes
1K Followers 73 Following Community science, patient-led, philanthropically funded, decentralized research org. Open source, power to and from the patients. Runs @remissionbiome
Isabel Ramirez-Burnet.. @IsabelRamirezRD
3K Followers 1K Following NBC-HWC CEO @renegaderes & Todologa @remissionbiome patient-led, decentralized, human-centered research. #MECFS #longcovid #postinfectious #chronicillness
Himmat @himmatb15
955 Followers 666 Following Writer and editor on pause due to Long Covid/vaccine injury since 2021. Severe and fully bedbound since 2023. ME/CFS | POTS | hEDS. he/him
Paul Gads @PaulGadsden82
860 Followers 828 Following Golf fan. Food fan. Animal fan. Mostly bedbound due to severe ME. Also MCAS. Quite dull.
Kerry Newnham @Squashedhedgi
1K Followers 942 Following Tube-fed, bedbound, a very severe M.E. veteran, wounded on the battlefield. Unlikely to come out of this intact or alive. UK has allowed ME neglect. LW-green
Manuel Ruiz @manruipa
4K Followers 134 Following 🔬Diving deep into #MECFS & #LongCOVID research. 🦠Dual role: Researcher and EBV ME/CFS patient. 🌍 Seeking answers.
Billboards for LC/MEC.. @LCMEBillboards
1K Followers 215 Following Public awareness campaign. We need biomedical research and treatments for Long Covid/ME/CFS now. https://t.co/zppTxZjTK8
Lauren Clark @laurenelclark
2K Followers 1K Following Freelance writer + editor | Health, wellness + more | Words in @UKWomensHealth @ElleUK @CosmopolitanUK @TheTimes + others Sign up to my newsletter below...
Başar SARIKAYA @basarsarikayamd
3K Followers 1K Following Associate Professor of Neuroradiology, University of Washington, PGY-24, G93.32
BendyHEDS&Co 🐴🦓.. @luvenice_h
4K Followers 5K Following Helping awareness of #EDS & Hypermobility Spectrum #HSD = #POTS #MCAS #MECFS #CSFleak #SIH/IIH #Stenosis #CCI #TMJ #ON/TN #GP #CRPS #SFN & more ⬇GPtoolkit⬇
Amanda Bennett @AmandaB55744931
1K Followers 253 Following Usually up mountains, sidetracked by long covid since Dec 2020 (infection Mar 2020). @[email protected]
Ellie Fry @iEllieFry
3K Followers 1K Following Deputy Online Features Editor @DailyMirror | Previously @Independent | Contact: [email protected]
Shelley Jules @shelleyjules
798 Followers 948 Following Love is the most powerful force in the universe. Serendipity Meets Preparation: @remissionbiome @RenegadeRes 💖🚀She/her. Surviving #LongCovid #MECFS w/you.
Kat Gower @fundraisingkat
591 Followers 1K Following Just Me. I have #MECFS all views expressed on here are my own
Ellen @Ellen87802116
563 Followers 1K Following she/her - 27 - Sheffield - Activist - Socialist. ME (since 2016), FND, C-PTSD. @lived.experience.sister on Instagram
Larry Weis @LarryWeis7
408 Followers 1K Following #ME/CFS,#SFN,#Dysautonomia Owner-Commercial Insurance Agency
Kernow Jones 〓〓�.. @kernowjones
1K Followers 2K Following ‘If you don’t tell people truth about #Covid how can people make good judgements about risk’ #SafeSchools #GTTO #NHS #ClimateChange #FollowTheScience #Brexit
Jodi Osborne @Nosleepmomz
29 Followers 142 Following I haven’t had refreshing sleep since I was a baby 😭. Dx w/Severe ME. Bedbound for 10 years . Also dx with POTS, EDS, MCAS & CRPS #truecrime #trials
Carol L. Binks @carolbinks
3K Followers 2K Following Healing myself. Supporting others with neuroendocrine/immune system illness commonly known as #ME. Sharing research. Denouncing unscientific claptrap. #MCAS
Cortney Gensemer, PhD @CortDoesScience
7K Followers 937 Following Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education
Nic @LilNic000
469 Followers 3K Following #Disabled & 10x #ChronicIllness inc #pwME for 20 yrs + prob #AuDHD please #WearAMask whovian, history grad, Christian, grey/demi, #ClimateActionNow
Nicola Jeffery @NicolaCJeffery
5K Followers 5K Following 'Behind that loud-mouthed journalist @MrTopple is an even louder-mouthed woman!' Mum, Activist, #ChronicIllness warrior! #BLM! Standing up to #Classism!
Isa 🛌 🍉 @anardiska
384 Followers 376 Following 27. Chronically ill with severe-very severe Myalgic Encephalomyelitis (ME/CFS) + comorbidities. Autistic. Spanish-Venezuelan living in the US since 2021. 🏴🇵🇸
This is really good from @MEResearchUK thanks @CaroleBruce17 - & @CraftyMissB for signposting it to us #SaveCarlasLife #BringMillieHome
Excellent resource from @MEResearchUK
I made a Daisy chain and took it up to Sophia’s room. She loved it and kept smelling it because it smelled of the garden. The garden she hasn’t seen through the window for over a year and hasn’t been in for over 5 years #millionsmissing2024
I've joined with @BreastCancerNow to call on @NICEComms, @NHSEngland, @ASTRAZENECAUK and @DaiichiSankyoUK to make the life-extending drug, Enhertu available on the NHS. Will you join me? Sign the petition #EnhertuEmergency action.breastcancernow.org/enhertu-emerge…
It is insulting and outrageous to those with #VerySevereME to say that these changes would help them recover and imply that not doing so means they aren’t trying. BACME is a disgrace, and nothing but a swift parting of ways with any connections will satisfy me. @MEAssociation
‘Find a balance between validating the individual's current experience, and encouraging optimism that environmental hypersensitiveness can improve, or even resolve completely over time, and that very careful and gradual exposure can support this process.’ 🙄
Of course my mind goes to #BringMillieHome & #SaveCarlasLife both fighting for their lives in NHS hospitals to gain access to feeding tubes, and of Merryn & others who died of malnutrition from #SevereME
‘[In #SevereME] some degree of disordered eating is commonly reported.’ ‘Changes in food preferences and restricted range of foods chosen are more evident.’ ‘Psychological intervention to help the person regularise their eating pattern may also be effective if accessible.’ 🙄
BACME documents on Severe CFS/ME talk about ‘incremental pacing’ and ‘gradually increasing activity and tolerance’, and a ‘gradual programme of starting to sit’ or ‘sit out of bed’. In regard to sleep, they suggest ‘gradually introducing daylight’, and ‘reducing sleep duration’.
#pwME are keenly waiting for your response @MEAssociation I don’t discredit the support given to many, but as someone who has raised almost £8000 for you, I am not happy to hear of any link to BACME. Thread of disturbing BACME quotes to follow:
The two leading UK #MEcfs charities are linked to an organisation fomenting the psychologisation of the illness. From 'disordered eating' to ignoring NICE guidelines BACME are dubious yet the charities work with it. Via @TheCanaryUK #SaveCarlasLife thecanary.co/uk/analysis/20…
@healingfromlc I've heard it compared to trying to save money by budgeting when you're already well below poverty. Under normal (non-poverty) circumstances, it's solid advice. But there's no money to save when your balance is below zero.
I love this analogy about pacing for severe #mecfs and #LongCovid patients. ❤️
@healingfromlc I've heard it compared to trying to save money by budgeting when you're already well below poverty. Under normal (non-poverty) circumstances, it's solid advice. But there's no money to save when your balance is below zero.
When our journalist @h_sharland contacted a promient #MEcfs 'professional' involved in BACME for her article on @MEAssociation & @actionforme involvement with the group, these are snippets of the replies she got 🧵 Apparently PEM is a feature of oncology treatment #SaveCarlasLife
The two leading UK #MEcfs charities are linked to an organisation fomenting the psychologisation of the illness. As @h_sharland finds, from 'disordered eating' to ignoring NICE guidelines BACME are not acting in patient's interests #SaveCarlasLife. READ: thecanary.co/uk/analysis/20…
Hey @actionforme @MEAssociation when is your next AGM? I think we need the question answered as to what you are doing with this £4.7 million between you. £4.7 million could more than cover a LEGAL FUND & be a literal lifeline to people with Very Severe ME. So, what do you say?
The two leading UK #MEcfs charities are linked to an organisation fomenting the psychologisation of the illness. As @h_sharland finds, from 'disordered eating' to ignoring NICE guidelines BACME are not acting in patient's interests #SaveCarlasLife. READ: thecanary.co/uk/analysis/20…
@RorPreston @actionforme Whether you're a Severe or Very Severe ME patient or a patient with a Severe Psychiatric illness, you really wouldn't want to fall prey to the psychiatrists in Lancaster or the West Middlesex hospitals. Nasty brutish thugs.
And don't think for ONE SECOND I won't release the names of the doctors involved in #SaveCarlasLife #BringMillieHome under the defence of public interest along with emails we've had from the so-called charities and experts in #MEcfs
I am DONE supporting NHS workers. What I have witnessed the past few years - from London to Suffolk via Lancashire, Devon & Sussex - has got NOTHING to do with wages, Tory reforms, or privatisation - & EVERYTHING to do with staff who should be NOWHERE NEAR healthcare.
I am DONE supporting NHS workers. What I have witnessed the past few years - from London to Suffolk via Lancashire, Devon & Sussex - has got NOTHING to do with wages, Tory reforms, or privatisation - & EVERYTHING to do with staff who should be NOWHERE NEAR healthcare.
Maybe it’s a dick move but my patience for people who are very mild complaining about the most mild inconvenience is not very high. Especially when the most severe people get absolutely no help and endure suffering with unimaginable strength
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