Moira Dillon
@MoiraDillon_ME
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Mostly tweet re Severe Myalgic Encephalomyelitis (ME) Founder member of @MEAdvocatesIre
Ireland
Joined February 2011
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
The sole reason why the charade that M.E. could be a psychiatric or behavioural ‘fatiguing’ disorder or even a ‘aberrant belief system’ continues: not because there is good scientific evidence – or...
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Let Art Be a Way to Witness and Remember On #SevereMEAwarenessDay, we honour lives hidden by illness through a powerful online art exhibition. Watch here: https://t.co/ojSnDjVID6
#SevereME #MEAwareness #LetArtBeAWayToWitnessAndRemember
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The ME Delivery Plan (UK) is a no-show. People with ME have been left in darkness for too long. The UK Government must think again and allocate it the resources it needs to make a real difference. Thread 👇
1) 🇬🇧 In the UK, the delivery plan for ME/CFS has finally been published. Here's what it says about scientific research on ME/CFS...
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Please support the linked fundraiser to help Marc if you can Details via link https://t.co/mF1DN6PDFJ
gofundme.com
Marc Shcherbatko is a 21-year-old from Kharkiv, Ukraine, livi… Kollektivhaus Wurze needs your support for Help Marc escape medical harm and survive very severe ME
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We invited artists living w ME to contribute to an art exhibition to mark ME Awareness Out of the shadows of chronic disabling illness came a gathering of inspirational souls in one place, deeply connected through art & creativity https://t.co/UIWiHjFmnZ
#bringMEoutoftheshadows
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1⃣ Update on requests for changes to SNOMED CT UK Edition and International Edition For SNOMED CT UK Edition, the conjoined terms: "ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome" and "Myalgic encephalomyelitis/chronic fatigue syndrome" now included under Synonyms.
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We’ve sent our submission to the UK Chancellor, Secretary of State for Work & Pensions & Minister of State for Social Security & Disability as we are v concerned about our fellow patients in the UK ME community, ie those who rely on disability support https://t.co/HZEo9uY3Ww 1/
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ME is an acquired chronic complex neurological disease involving profound dysregulation of the central nervous system & immune system, dysfunction of cellular energy metabolism & ion transport & cardiovascular abnormalities. #BrainAwarenessWeek 1/
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Did you know that it is Brain Awareness Week Are you aware that Myalgic Encephalomyelitis (ME) is a neurological disease affecting brain & spinal cord leading to effects on multiple systems including CNS Pg4 https://t.co/0qtjqGyi7H
https://t.co/ipAKnflCI3
#BrainAwarenessWeek
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We call for greater investment into ME research. Many people are diagnosed each year with ME, thousands live without ME aware medical professionals; without appropriate treatment & supports. Despite this, funding for ME research is disproportionately low. #BrainAwarenessWeek 1/
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#BrainAwarenessWeek (March 10th-16th) #InvestInNeuroResearch
#MyalgicEncephalomyelitis
#ME
#MEAwarenessHour
Brain Awareness Week is a global campaign to foster public enthusiasm & support for brain science M.E. is a chronic neurological condition causing profound longterm illness & disability where many symptoms indicate abnormalities in the brain & nervous system #BrainAwarenessWeek
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Brain Awareness Week is a global campaign to foster public enthusiasm & support for brain science M.E. is a chronic neurological condition causing profound longterm illness & disability where many symptoms indicate abnormalities in the brain & nervous system #BrainAwarenessWeek
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We wish all women a happy International Women’s Day particularly those with ME, their female carers, family members & friends. Lets unite to ‘Accelerate Action’ for gender equality by highlighting need to address unique challenges faced by women with ME #InternationalWomensDay
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Concerns about how censorship & potential hindrance on healthcare & scientific research will affect progress around ME after Trump administration imposed new controls restricting what topics can be covered requiring approval for external communications.
@dxrevisionwatch @CBSNews @HHSGov @ICD10monitor One of the most dangerous acts to do in public health is to shut down information & public comment. The Department of Health and Human Services @HHSGov must hear from stakeholders involved in science & medicine. Silencing medical professionals, advocates & patients is to do harm
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The Community of People living with ME in Ireland Call for HSE Protocol for Severe ME Please support our community & be #ThereForME by signing the Open Letter to the HSE After you sign please confirm your signature via the email received Anyone can sign ✍️ #meawarenesshour
Protocol for Severe ME Last call for support for our ME community’s Open Letter campaign Please sign & verify signature by email received if you haven’t already https://t.co/WHWJYdloCI
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“There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety” The Times 23/02 HSE states its developing a national ME Clinical Guideline in collab w patient & service users supported by @roinnslainte
https://t.co/5mB1m7qrfL
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An excellent introduction to the more severe end of the spectrum of ME via films about Severe ME from the ‘Dialogues for a Neglected Illness’ project by Natalie Boulton & Josh Biggs https://t.co/V8AuE0u1mz
dialogues-mecfs.co.uk
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“Hard to believe that patients with ME have been treated so poorly for decades, but they have, and the stirring story of their resilience and unwillingness to be forgotten is brilliantly portrayed.” - Leonard Jason, DePaul University, Chicago https://t.co/PgMOFXx2hp
dialogues-mecfs.co.uk
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FND is a psych label which disregards the physical symptoms an individual has as a result of having a physiological illness like Myalgic Encephalomyelitis (ME) https://t.co/DvGY2W5ZZ3
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“Until there is wide spread acceptance by the medical fraternity, we will be subjected to scepticism & dismissed as having psychological illnesses when it is not the case.” https://t.co/QneSB0IShP I’m sad to hear @KathyCollett7 has died; my condolences to her family. RIP #ME
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Huge congrats to @EllenClifford1 who has won her Work Capability Assessment court case against @DWPgovuk after high court ruled that the DWP’s consultation on disability benefit reforms was unlawful. Judgment: https://t.co/DAVARnmBcv More news: https://t.co/eWdpxfOveE
bigissue.com
The DWP's consultation into plans to slash billions from disability benefits has been ruled unlawful in a damning High Court judgement.
DWP misleading and unfair consultation on disability benefit reforms unlawful, High Court rules
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