Underneath that post someone asked what it was like for Isla having the accusation of FII hanging over them. This is what her mom wrote. “It broke Isla emotionally. So damaging, she didn't trust anyone except family after that. Physically, it definitely caused a decline…”
If you are unfamiliar with Myalgic Encephalomyelitis (ME) aka #MECFS it is a serious complex multisystem disease. But for decades it’s been dismissed, psychologized and ignored. @georgemonbiot.bsky.social calls it “the greatest medical scandal of the 21st century.”
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot
The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot
theguardian.com
sarah boothby@swastrosarah.bsky.social · last yr.Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
sarah boothby@swastrosarah.bsky.social · last yr.Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
![More, more, more
You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.
From Isla aged 8](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tbjkzimgulox2kwiykbhspfn/bafkreicns5bi5awyizdmale5oex7evjygihsoc7lzaop536t4fh4tunxna)
Swifts and Swallows@swiftsandswallows.bsky.social · last yr.This came up in my fb memories today. Isla wrote about her pushy GET driven OT and @tymestrust published it. How I regret being referred to that OT. tymestrust.org/tymespublicati… #MEAWARENESSMONTH #severeME #rememberingisla
‘Gaza must be eliminated’: Israel’s airwaves are filled with pro-genocide propaganda | Arwa Mahdawi
‘Gaza must be eliminated’: Israel’s airwaves are filled with pro-genocide propaganda | Arwa Mahdawi
Here is a collection of 20 of the more outrageous statements by Israeli lawmakers or public figures since 7 October 2023
theguardian.com
This is a family I know and I’d be grateful for any leads or shares especially if you know people in the area.
ME/CFS San Diego@mecfssd.bsky.social · last yr.Help needed for young adult with rapidly worsening ME/CFS in Temecula, CA. Bedbound with increasingly very severe symptoms, needs compassionate hospital care or skilled nursing support. Any Southern CA lived experience, hospital, supportive, or nursing home recommendations? info@mecfsSanDiego.com.
My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social Donate to my birthday fundraiser if you are able. Any amount helps tinyurl.com/Renegage-Res...
Isabel Ramírez-Burnett
Remission Biome is a community science, patient and caregiver-led project of the non-profit, decentralized research organization, Renegade Research. We work in collaboration with researchers and clini...
tinyurl.com
There is no limit to my match this month!! So I've created fundraisers for: @openmedf.bsky.social: openmedicinefoundation.crowdchange.co/50084 @meactnet.bsky.social: meaction.funraise.org/fundraiser/e... But I will match any donations to ME-supporting 501c3s with a receipt.
This is Nevra. Campaigner for health equity in the global south. #DV survivor. Wildly generous with her many talents. Severe illness haver, without support in Pakistan as an unmarried disabled woman...
Unable to be here much lately, but I need you to know about this firecracker activist whose light may be snuffed out without more support. 🔥‼️ Passionate about women’s rights, health, and global equity? Please read on... 🧵
Still looking... 👁️🔍 DMs open, if you know of capable + conscientious + Covid-safe eye doctors in the Kitchener-Waterloo area. 🙏
Tara Nerte@taranerte.bsky.social · 2y agoSeeking #Covid -safe eye doctors (optometrist, & possibly ophthalmologist) in Kitchener-Waterloo. 👁️👁️ 🔸 I’m immune-deficient & chronically ill—can’t take risks. 🔸 Clean air is good, but doctor must be willing to 😷. Please comment or DM if you can recommend someone! 🙏 Reskeets appreciated. 💜
My Canadian peoples. Looking for recommendations for a reputable online pharmacy. Finally breaking down and considering taking rx medication for my chronic pain and need to have it delivered. Sigh. Any suggestions would be appreciated.
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. www.theguardian.com/commentisfre...
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. We must learn all we can from this tragic case, says Guardian columnist George Monbiot
theguardian.com
Still looking... 👁️🔍 DMs open, if you know of capable + conscientious + Covid-safe eye doctors in the Kitchener-Waterloo area. 🙏
Tara Nerte@taranerte.bsky.social · 2y agoSeeking #Covid -safe eye doctors (optometrist, & possibly ophthalmologist) in Kitchener-Waterloo. 👁️👁️ 🔸 I’m immune-deficient & chronically ill—can’t take risks. 🔸 Clean air is good, but doctor must be willing to 😷. Please comment or DM if you can recommend someone! 🙏 Reskeets appreciated. 💜
Seeking #Covid -safe eye doctors (optometrist, & possibly ophthalmologist) in Kitchener-Waterloo. 👁️👁️ 🔸 I’m immune-deficient & chronically ill—can’t take risks. 🔸 Clean air is good, but doctor must be willing to 😷. Please comment or DM if you can recommend someone! 🙏 Reskeets appreciated. 💜
Canadian MCAS folks: Cromolyn eye drops have been recalled due to infection risk. Apparently the preservative isn't effective enough and there could be mold and bacteria growth. #MCAS #ChronicIllness 🇨🇦 www.ctvnews.ca/health/eye-d...
Eye drops recalled in Canada over infection risk
A Canadian pharmaceutical company is warning consumers not to use some of its eye drops because of potential microbial growth that may result in eye infections.
ctvnews.ca
It’s a terrifying time to be a patient. I have home nursing for BP checks & IV fluids…yet 3 times nurses have tried to administer insulin. I’m not diabetic. What if I were unconscious or unable to correct them? 2 out of 3 got mad at me for correcting them & tried to force the insulin on me /1
My Covid cautious people, I am trying to figure out how best to Covid proof the main level of a bungalow that has a separate basement unit. Any thoughts or resources? Thanks ##CovidIsAirborne
Israel using water as weapon of war as Gaza supply plummets by 94%, creating deadly health catastrophe: Oxfam Israel damaged or destroyed five water and sanitation sites every three days since the start of this war www.oxfam.org/en/press-rel...
Israel using water as weapon of war as Gaza supply plummets by 94%, creating deadly health catastrophe: Oxfam | Oxfam International
oxfam.org
Hey All! Quick ask from the @cancovsoc.bsky.social. We've been gifted w/ amazing volunteers for many of our committees. But we do need some smart vols to help us with FUNDRAISING!If u care about our work, and have experience in non-profit Fundraising, plz reach out by DM!We'd love your help!
Jaskirat Singh Sirdu has served his sentence in the devastating Humboldt crash. Deporting him is cruel. Please consider signing this petition.
Reconciliation Action Group YYC@ragyyc.bsky.social · 2y agoUPDATE: Canadian Call to Action: Sign the linked petition www.change.org/p/don-t-let-...
Worried or upset about the decision to cancel wastewater surveillance testing in Ontario? Contact the Premier’s Office at 416-325-1941. Email: premier@ontario.ca sylvia.jones@ontario.ca CMOH@ontario.ca
🚨🚨🚨🚨🚨 So our feckless government has decided to defund Ontario's Wastewater Surveillance Program. I have no doubt they needed the funds for their other priorities like BEER. Time to get loud, people. Call Doug Ford and tell him hands off our data. 416-325-1941 #CovidIsNotOver #GetLoud
Speaking of fighting: #onpoli #healthcare
Susan Kiddie 🍉@susankiddie.bsky.social · 2y agoCW: cancer Yesterday, I learned of a second family member whose body is riddled with cancer, only discovered when it is far too late. They will not be with us long. I can't help but think of the state of our healthcare system and wonder how many others are in the same boat. Fight, people. Fight.
Those words above are from Leila Molana-Allen, PBS' special correspondent in the Middle East. This was an area designated as a 'safe area' by Israel. It forced the displacement of these poor people to this 'safe area' and then slaughtered them in tents. Mostly women & children. Barbarity. Evil.
Barbarity. Evil. "I’m receiving videos far too graphic to publish of the horrors in Rafah tonight. A body burned black, dragged from destroyed make-shift tents, a young child in pieces. One toddler has been completely beheaded in the attack. Parents are clutching their dead children, screaming."
