#PACETrial #AleemMathees #FoI #FoIVictory #landmarkpaper #gradedexercise #CBT #mecfs #MyalgicEncephalomyelitis #SevereME
@tomkindlon.bsky.social
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#severeME
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#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin
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How can they use that argument for one, but not the other?
Why would they pause consideration of one service, while continuing to develop another, if the same factors (NHSE/ICB reorganisation) are likely to effect both?
It makes no sense.
#MEDeliveryPlan #SevereME
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Nevra is currently very unwell and has not been able to use her phone for the past 5 days. She has been dealing with severe faecal impaction for 4 days, and we are awaiting guidance from her doctor. She is experiencing extreme reactions to mould, chemicals, and poor air quality, especially due to hotel renovations and recent thunderstorms due to climate change brought upon by w*rs in her region. March goals: 1. $1343 USD/£1002 for rent 2. $68 USD/£50 for mould fogging machine 3. £2500 USD/£1871 for vascular compression Or 4. $267/£200 for food/meds/IV 3) $667 USD/£500 to pay back surgery loans Rent and deposit donation link: PayPal.me/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
Save Nevra - March update Nevra is struggling to breathe both indoors and outdoors and is relying heavily on a nebuliser (which may also need a new filter). Her current environment is unsafe... there is visible mould above her bed, but moving to the couch causes significant pain. She has likely not slept for 2 days, is in severe pain, and has lost more weight. She currently has no access to IV support. Nevra can only receive messages through her mother's phone at the moment. Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
We are monitoring Nevra's emails closely for doctor responses and may need to adjust appointments and care urgently. She misses everyone deeply Urgently need: Nevra is trying to secure a mould-free apartment but needs funds for the deposit. This is critical for her survival and stability. Please continue sharing and supporting her fundraiser if you can. Please share, comment, like & donate if you can to keep her housed and alive! Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
🧡💛 Save Nevra - March Update 💛🧡
Please donate and share this post!
Rent and deposit donation link:
PayPal.me/SaveLizNevra
GoFundMe link for food & healthcare costs:
GoFundMe.com/f/save-nevra
#SaveLizNevra #MECFS #SevereME #POTS MillionsMissing
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The 126th edition of the Research Digest brings together clinical, biological, and lived-experience perspectives to strengthen our understanding of long COVID and its overlap with ME/CFS.
emerge.org.au/researchdige...
#MEcfs #LongCovid #PwME #SevereME
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Update from Tessa Munt MP.
#MEDeliveryPlan #SevereME
bsky.app/profile/tess...
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@rthonwesstreeting.bsky.social
Coroners’ prevention of future death notices should not be ignored
#pwME should not starve to death or be wrongly institutionalised because no NHS specialist services exist for #severeME
Successive governments have known for decades
#JusticeForME
#HumanRightsAbuse
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Please, please help people with #severeME – we have been dying regularly for decades and no meaningful funding or commitment has been forthcoming. I hope you’ll work with @tessamunt.bsky.social and the APPGs to help millions of us with ME and LC not just avoid death, but avoid years of living death.
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If you have #SevereME, like me, you are valuable however and whenever you can show up
I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides
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10 years & counting of being housebound with #severeME and the @labouruk.bsky.social cause another delay for any kind of progression in support for pwME. People with bunions have better treatment plans than pwME & pwLC🤨
#mecfs #myalgicEncephalomyelitis #LongCovid #NHS #ChronicIllness
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That's *seriously* bad form of DHSC not to make a formal announcement, given the number of questions that have been asked about this in parliament. 😡
#MEDeliveryPlan #SevereME
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eBay profile info: island_art 100% positive feedback (293) 10 followers 50 items sold
If you don’t use Poshmark ⬆️ you can find the same items in my eBay shop:
ebay.com/usr/island_art
Your purchase will help a profoundly disabled Latina artist & disabled cat who are both currently homeless! 🙏
#CommunityCare #eBay #artist #DisabledLife #fundraiser #SevereME #HelpFolksLive #Autistic 🇵🇷
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If you’re UK-based and have the spoons, please ask your MP to attend the debate on Ehlers-Danlos syndromes and craniocervical instability (CCI)
Easy fill in the blank template, as well as MP postcode search + send here:
edsuk.eaction.org.uk/makeitmatter
#EDS #EhlersDanlos #CCI #MEcfs #SevereME
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As someone who’s had #SevereME for over a decade (& mild/moderate ME since the late 1990s), this is heartbreaking on so many levels.
These kids will never have a chance at really living (unless some miracle cure for #LongCovid comes along) 💔
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UK NHS England releases e-learning module “Supporting people with severe ME/CFS” NHS England have released a modified version of their materials aimed at helping healthcare professionals understand how to support people living with Severe or Very Severe ME/CFS. Unlike the previous version which was restricted to those with a qualifying work email address this module is available to view by anyone who registers for a general user account.
UK NHS England releases e-learning module “Supporting people with severe ME/CFS”
learninghub.nhs.uk/Resource/793...
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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George and his ME/CFS 3 panel cartoon 1st panel: George is lying in bed. A doctor says: "I'm sorry, but it's obvious you're ME/CFS is now severe…" 2nd panel: Doctor: "the good news is you are likely to die any time soon" 3rd panel: Doctor: "the bad news is you are unlikely to die any time soon"
15/
More from a series of comic strips about life as a person with ME/CFS.
"George and His ME/CFS"
🎨Rick Menard
This is the last one.
#MEcfs #SevereME
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#SevereME
Pat. erzählt heute, dass es seit dem letzten Termin eine Begutachtung gegeben hat:
Als Hausbesuch, ME/CFS-sensibel/-wissend, verständnisvoll & freundlich.
➡️ „So positiv überrascht von der Gutachterin.“
Bin davon überzeugt, die Anstrengungen des #NRZ sind jeden Cent wert.
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1/2: BBC News: Our son loved the outdoors – invisible illness means he now can't walk or talk
Yesterday, BBC Wales posted a new article about the lack of specialist services in Wales for people with ME/CFS, particularly for those with Severe ME.
https://meassociation.org.uk/ss06
#MECFS #SevereME
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the kind of day where i can barely lift the mug (& that’s with a straw cos i can’t tip them anyway) #SevereME
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Currently stuck in existential angst trying to work out how I can have a life while mostly bedridden.
Haven’t found an answer. Don’t have the energy to do anything anyway.
Feeling very ripped off. Grieving, I guess. My life is stuck on pause. #SevereME
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White text on a green-blue background. The text is describing Melinda's crash and loss of baseline after finishing the clinical med trial she was in.
White text on a green-blue background. The text is describing Melinda's crash and loss of baseline after finishing the clinical med trial she was in.
👋🏻 #severeME sux
#MECFS #LongCovid #ChronicIllness
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ID: Bedbound Anniversary The longest three years of my life. Feels like a life age. It’s been nearly 1,100 days. Roughly 26,000 hours, 1.5 million minutes, 94 million seconds. 94 million seconds, and counting, ticking off my life spent in one ever-dark room, save a few hours, when curtains part slightly to remember the outside world does exist. The pain and loneliness of such a miniscule existence stacks higher upon me each day. The only thing I know from confinement is this: even if I improve enough to leave this cavernous life behind, it will follow me wherever I go. I will always be within reach of its long-armed shadow. I will never be the same.
Three years bedbound.
#pwme #mecfs #longcovid
#severeme #chronicillness
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#Caturday #SevereME #cat #MA
🔊 for PURRS!
ER Update: CT shows lower lungs are collapsed, they still can't figure out what's going on w/ my stomach
Monkey & I have nowhere to go 3/31 if we can't raise $2400
Pls help!
Share/donate or buy from my art or eBay/Poshmark shops:
linktr.ee/EthyricalArt...
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text reads: GOAL TWO Purchase medical supplies to help support Nevra getting stable enough for another hospital admission. This will require several items: Ongoing supplements from abroad and telehealth specialist consultations with her MCAS specialist and EDS genetics doctor. MCAS medications. Red Light therapy wrap to heal IV infiltration injury We will need to raise funds to do an Amazon order. This is not a simple process. The order has to be delivered to someone who is planning a trip to Pakistan. And the order then has to be organised to be transported to Nevra
there is a black and white photo of Nevra, a Pakistani woman in a full face respirator mask. Text reads: GOAL THREE Preparing for the hospital admission. This will include: Travel expenses to hospital and back. Long hospital stay in a private room GBP 260/day MCAS safe food supplies during admission time Funds for tests, treatments, and specialist appointments. Fees for a patient advocate to help Nevra get to and from hospital and help her communicate her needs while in hospital.
text reads: CURRENT FUNDRAISING FOCUS The next few months we will be focused on fundraising for Goal 1 and Goal 2. Every month we will do one post about raising funds for rent, medical supplies and a SPECIFIC item we would like special help with in raising funds for: Examples: Infrared arm wrap to help heal Nevra's injury from IV infiltration Inflatable bath for Nevra to access low energy bathing MCAS-safe food and non-perishable food items that can be stored to be used as needed Sugar cane water to help Nevra's blood glucose levels on days she has to fast involuntarily.
there is a background photo of Nevra, a Pakistani woman with long black hair, with a migraine cap over the top part of her head. Text reads: DONATION LINKS: GOFUNDME COM/F SAVE-NEVRA PAYPAL: @SAVELIZNEVRA
Without support, Nevra risks further decline and death. Every share + donation matters.
We’re posting monthly updates + urgent needs.
Please help her access safety, care, and a chance to stabilize 💙🕯️
Graphics by @ sophsoph.psd (IG handle) 💖
#pwME #SevereME #MyalgicEncephalomyelitis #mecfs
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People with #severeME sometimes have problems with swallowing. Nutritional support may be necessary to prevent life-threatening malnutrition.
#EndMalnutritionInME #SwallowAware2026
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✅
#SevereME #VerySevereME
@kathrynhoffmann.bsky.social
(Die sehr schwere betroffene Person mit Zitat hier ist nicht der verstorbene Betroffene im Bild/Artikel daneben.)
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Ondertussen wachten honderdduizenden patiënten op antwoorden. Onderzoek is dus cruciaal. Maar als de meest kansrijke medicijnen bij voorbaat buiten onderzoek vallen, wordt vooruitgang onnodig vertraagd. Meer info vind je in het Volkskrant-artikel. #Longcovid #severeME #PAIS #MillionsMissing🧵7/7
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