Moira Dillon
@MoiraDillon_MEMostly tweet re Severe Myalgic Encephalomyelitis (ME) Founder member of @MEAdvocatesIre
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People with #ME have endured a persistent politico economic culture for decades now, have been denied the healthcare, social care, welfare, recognition & respect afforded to other chronic illnesses. A thorough explanation why ⬇️ facebook.com/groups/3476656…
No pretence of a centre ground when all has lurched to the right ….a politics completely severed from reality - capitalism is an incurable cancer
From Keir Starmer to Kemi Badenoch , all I see is a terrifying collapse in moral and intellectual standards. It’s official: we have a third-rate political class childishly playing the great statesmen on account of a faded superpower status. Or, in other words: We are fucked.
From Keir Starmer to Kemi Badenoch , all I see is a terrifying collapse in moral and intellectual standards. It’s official: we have a third-rate political class childishly playing the great statesmen on account of a faded superpower status. Or, in other words: We are fucked.
Very grateful to @ESBNetworks for sending out crew to sort out a loose connection outside mine tonight in very difficult weather conditions A very quick turnaround from phoning it in this evening to the issue being sorted; many thanks for your excellent service 🙏🏻
Congratulations & best wishes to our remarkable MEAI advocate Corina Duyn on her book launch 🎉 We’re happy & proud to see Corina achieve another project in the face of chronic illness & difficult circumstances ‘In Bed I Cut Words’ is engaging & important corinaduyn.blogspot.com/2024/10/the-ma…
We cant express enough how important this piece by @GeorgeMonbiot is re cruelty of pseudoscience perpetrated by various cohorts, the relationships between scientists media & political activists & the cruelty of reality of people living with ME & Severe ME #GreatestMEdicalScandal
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. theguardian.com/commentisfree/…
“Archer’s Regulation 28 report highlights the absence of specialist beds across the country for severe ME patients, which meant there was no treatment.” #MaeveInquest 1/
NEW. Coroner in Maeve Boothy O’Neill inquest has said that treatment and research for ME needs overhaul to prevent future deaths Reg 28 rulings are too often ignored - Maeve’s case shows how desperately ME patients need action. Over to you @wesstreeting thetimes.com/article/093870…
It’s exhausting for ME patients & advocates to be repeatedly highlighting what’s crucial in education about ME for health & social care practitioners; can we please get it accurate @DocStrain @actionforme @MEAssociation Why would you do anything less??? 👇 meadvocatesireland.blogspot.com/2023/05/harmfu…
We are concerned about @NHSEngland ed modules Surely ME med experts & expert patients/carers/advocates are included to work with @DocStrain Info re PEM must be completely accurate @BinitaKane @drclairetaylor @PhysiosForME @sunsopeningband @CenterRes @MEAssociation @actionforme
We are concerned about @NHSEngland ed modules Surely ME med experts & expert patients/carers/advocates are included to work with @DocStrain Info re PEM must be completely accurate @BinitaKane @drclairetaylor @PhysiosForME @sunsopeningband @CenterRes @MEAssociation @actionforme
@MEAssociation I'm extremely concerned about the 2nd NHS educational module, and many other pwME are as well. Will you work with @DocStrain to add in the understanding that some exercise programs, especially GET, are dangerous and must not be recommended? 1/2
A letter by 200+ hcps which states that those with ME risk starving to death due to unsafe & “unconscionable”standards of care, calls for the @NHSuk @NHSEngland @DHSCgovuk action to address “serious patient safety concerns” for people with ME FYI @CcoHse thetimes.com/uk/healthcare/…
After a long back-and-forth, a badly designed study of the Lightning Process was approved a couple of years ago in Norway. Here's a more recent update that includes an analysis of what makes it bogus.
🇬🇧 Summary of the unethical LP-study, supported by the Norwegian Government & ethical committees (in Norwegian). 🇳🇴 "Etisk og vitenskapelig problematisk Lightning Process-studie" @Helsedir @Folkehelseinst @helse_og_omsorg #LightningProcess #MECFS lifewithmebysissel.wordpress.com/2024/07/21/eti…
There is zero @NHSuk & @HSELive training for ME/Severe ME; there is zero @NHSEngland & @HSELive services for Severe/V Severe ME; there is zero @NHSuk & @HSELive inpatient provision for ME/Severe ME; @DHSCgovuk & @CcoHse where is the promised Plan for ME #GreatestMedicalScandal
What has happened for #ME and #LongCovidME since? An inquest has heard there is no @NHSuk training for ME; there are no @NHSEngland services for severe/very severe ME; there is no @NHSuk inpatient provision for #pwME; the @DHSCgovuk has not published the promised Plan for ME 2/4
One of Ireland’s ME advocacy orgs @MEAdvocatesIre need your support to learn about Severe ME & get at least 25 signatures on the ME community’s Open Letter today to meet a new target Please support the campaign then confirm your signature via email received after signing More 👇
Devastating consequences occur when individuals with Severe ME are disbelieved & their specific illness misunderstood & denied How To Help 1. Watch film ‘Voices from the Shadows’ vimeo.com/ondemand/22513… 2. Sign Open Letter bit.ly/4doeHpS then please confirm via email
A large number of blood biomarkers that differentiate ME cases from controls should dispel any lingering perception that ME is psychosomatic (to be peer reviewed) #MyalgicEncephalomyelitis #GreatestMEdicalScandal
Such a large number of replicated and diverse blood biomarkers that differentiate ME cases from controls should now dispel any lingering perception that ME is psychosomatic This was a fab collaboration including @AvaKhamseh, @nshejazi and Sjoerd Beentjes. 4/4
Interesting 🧵 by @Naomi_D_Harvey who uses a peripheral blood lactate testing machine where readings are a biomarker of severe metabolic dysfunction incurred as part of PEM “Works like a blood sugar sensor but for lactate Allows for real time monitoring of lactate levels at home”
In PEM after 15-20 min laptop time working on PIP form two days ago. Presumably, that laptop time pushed me over the anaerobic threshold & caused damage. Muscles hurt all over, hands weak and painful, hard to chew and swallow. Decided to check my lactate #TheAcidTest
Views which are deep-rooted in the NHS & also in the neighbouring HSE @CcoHse @drciara It will take a huge amount of work to change the narrative around Myalgic Encephalomyelitis (ME) #GreatestMedicalScandal
This GP training video from the 90s highlights Wesselys model. It downplays the severity dismisses a viral cause & claims that symptoms are due to a fear of activity and excessive rest. It says patients are frustrating because they are mistaken and can get into in arguments.
“There is a competing theory created by a cabal of psychiatrists to the effect that this condition has a psychological basis; it doesn’t have a psychological basis.” ~ Dr Weir
Long segment about #MECFS and #LongCovid on BBC Breakfast (15 mins) includes interviews with @BinitaKane Dr William Weir @KarenLHargrave @oonagh_cousins Mentions symptoms, severity, history, Ramsay, NICE guidelines, problems accessing care and more youtu.be/AuqthHADSWw?si…
Dr @BinitaKane and Dr William Weir on national tv in the UK this morning @BBCBreakfast spotlighting the psychologising of ME Thanks Adam @ABrokenBattery
Highlights segment about #MECFS on BBC Breakfast. Dr William Weir and @BinitaKane talk about the history of #MECFS how it has been psychologised and the frustrating lack of progress. There are now millions of patients with Long Covid and we have no treatments.
. @CHI_Ireland @DMHospitalGroup @IEHG @saoltagroup @RCSI_Irl @PublicHealthSth @ULHospitals Please be aware of history & politics & important info re ME “The Tangled Story of ME” gives comprehensive account of the historical & political context of ME dialogues-mecfs.co.uk/films/the-tang… 1/2
Call To Action • Criticism of NIH ME Intramural Paper & individuals involved with the paper & • Call for Retraction both by @JKBurmeister • Our email of complaint to NIH & call for retraction of the ME Intramural Paper meadvocatesireland.blogspot.com/2024/08/critic… #RetractNathPaper
#MaeveInquest There’s been a good amount of satisfactory - good press coverage about Maeve Boothby O’Neill’s case & coverage of the 9 days Inquest hearings See long thread of links to articles & other media below, thanks to Adam
Full article: My child died of ME’: a scandal waiting for its Post Office moment Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS archive.ph/2024.07.19-150…
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Who to follow
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Henry Anderson
@macanders -
James Foulger
@jifoulger -
Allison Haynes
@AllisonDHaynes -
CatEye
@CatEye0611 -
Jenny Meagher
@JennMeagher -
Tapanui 'Flu | @tapanuiflu.bsky.social |
@TapanuiFlu -
Jacqz🇦🇺🇬🇧🇨🇾🇬🇷🦘mewarriorau.bsky.social
@MEwarrior_au -
ME Advocates Ireland
@MEAdvocatesIre -
Deborah Causer
@causer_deborah -
Alice Lewis
@AliceOutThere -
Sonya
@sonya_lala_ -
Patient Dreams
@PatientDreams -
Karen Radenkova
@laradenkova -
It's M.E. Linda 💙 😷
@HappyHoundHouse -
Katie Johnstone
@SockFoam
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