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Tara Nerte

@taranerte.bsky.social
352 followers 203 following 183 posts

Not a duck. She/her. #MECFS

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Reposted by Tara Nerte
The Real McCoy @rippermd41.bsky.social · 31/07/2025
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…”
Tweet from Sim: Both U & Isla sounded lovely. I can't imagine wot it must hy bn like 2have had aspersions of FIl hanging over U. Do U think it contributed 2Isla's condition deteriorating? I'd never heard of FIl until recently. It's unbelievable that the school/SW did that knowing how rare it

Reply from @swiftsswallows 
@Swiftsswa... • Jul 20
It broke Isla emotionally. So damaging, she didn't trust anyone except family after that.
Physically, it definitely caused a decline, I think the months of being on high alert & in fear had an impact. The professionals involved lied, ganged up on us, the truth didn't matter 1/

Reply from @swiftswallows

Isla's paediatrician wasn't included until after Isla had been placed on Child Protection. Isla's tutor who supported us had complaints made against her by Social Services that she needed extra training as she couldn't see the non existent safeguarding concerns. 2/

Reply from @swiftsswallows

Isla had such a strong sense of right & wrong and the injustice of it was so hard. Knowing that there's no-one that you can trust & that you have no power definitely had an impact on decisions made re accessing medical care/support years later

Reply from Sim @docsimsim • Jul 21
I'm really sorry to hear that, it's a crime how kids with ME have been/continue to be treated. Was Isla ever forced to have GET/CBT?

Reply from @swiftsswallows

Not forced. We tried to follow increases and did for a few months but then Isla deteriorated hugely. She was only mildly affected to begin with. Was told to push through the pain, pain dismissed as growing pains but stopped following the plan. 1/Reply from @swiftsswallows

Trouble was when we stopped professionals raised concerns. With CBT Isla didn't have any as CAHMS said she showed no signs of wanting to improve so that led to Family Therapy offered to just me & her dad, to change our perceptions of illness as that was stopping Isla improving. 2/
6:42 PM • Jul 21, 2025 • 

Reply @swiftsswallows

We declined that as knew it was poop emoji & so then Isla was offered 1:1 sessions CBT based to work on setting goals and targets. We declined that as well. Isla desperately wanted to do stuff, she didn't need goals. 3/

Reply @swiftsswallows..•Jul21 ..
Looking back we declined a lot of things. Catch 22 really - engage with poop emoji CBT & GET and get worse or refuse so as to protect your child but then have Social Services involved.
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The Real McCoy @rippermd41.bsky.social · 31/07/2025
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.”
theguardian.com
‘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
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
@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.
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
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
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Yann (ME/LC) @me-cfs.bsky.social · 31/07/2025
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
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The Guardian @theguardian.com · 27/06/2025
‘Gaza must be eliminated’: Israel’s airwaves are filled with pro-genocide propaganda | Arwa Mahdawi
theguardian.com
‘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
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C.H. Romatowski @chromatowski.bsky.social · 28/06/2025
This is a family I know and I’d be grateful for any leads or shares especially if you know people in the area.
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Isabel Ramirez-Burnett @isabelrb.bsky.social · 30/06/2025
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...
tinyurl.com
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...
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e. hashman @eha.sh · 12/05/2025
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.
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Tara Nerte @taranerte.bsky.social · 20/02/2025
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...
screenshot of Nevra's Bluesky bio @nlizaki.bsky.social
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Tara Nerte @taranerte.bsky.social · 20/02/2025
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... 🧵
Yellow and orange sunburst background with the words “Fight fascism: Equip good people to do good”
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Tara Nerte @taranerte.bsky.social · 18/10/2024
Still looking... 👁️🔍 DMs open, if you know of capable + conscientious + Covid-safe eye doctors in the Kitchener-Waterloo area. 🙏
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Susan Kiddie 🍉 @susankiddie.bsky.social · 18/10/2024
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.
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George Monbiot @georgemonbiot.bsky.social · 18/10/2024
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...
theguardian.com
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
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Tara Nerte @taranerte.bsky.social · 18/10/2024
Still looking... 👁️🔍 DMs open, if you know of capable + conscientious + Covid-safe eye doctors in the Kitchener-Waterloo area. 🙏
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Tara Nerte @taranerte.bsky.social · 07/10/2024
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. 💜
Medic wearing an N95 mask, next to a schematic of the eye. Text reads: Help me find a safe eye doctor?
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Erin Wraithburn👻 @erinraeburn.bsky.social · 28/09/2024
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...
ctvnews.ca
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.
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Kelly @broadwaybabyto.bsky.social · 17/09/2024
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
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Susan Kiddie 🍉 @susankiddie.bsky.social · 05/08/2024
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
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Susan Kiddie 🍉 @susankiddie.bsky.social · 18/07/2024
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...
oxfam.org
Israel using water as weapon of war as Gaza supply plummets by 94%, creating deadly health catastrophe: Oxfam  | Oxfam International
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🇨🇦Joe Vipond🇨🇦 @jvipondmd.bsky.social · 15/07/2024
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!
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Erin Biba @erinbiba.bsky.social · 05/07/2024
JULY IS DISABILITY PRIDE MONTH
SEE US.
KNOW US.
LOVE US.
PROTECT US.
WEAR A MASK.
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Susan Kiddie 🍉 @susankiddie.bsky.social · 18/06/2024
Jaskirat Singh Sirdu has served his sentence in the devastating Humboldt crash. Deporting him is cruel. Please consider signing this petition.
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Kimiko Shibata @eslfairy.bsky.social · 04/06/2024
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
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Susan Kiddie 🍉 @susankiddie.bsky.social · 04/06/2024
🚨🚨🚨🚨🚨 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
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Susan Kiddie 🍉 @susankiddie.bsky.social · 29/05/2024
Speaking of fighting: #onpoli #healthcare
Tell Doug Ford our hospitals are not for sale

March from Nathan Phillips Square to PROTEST at Queens Park
MAY 30 12PM NOON

www.StopForProfitHealthcare.ca
Ontario Health Coalition
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My IRL friends call me Chris @christyceeck.bsky.social · 27/05/2024
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.
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My IRL friends call me Chris @christyceeck.bsky.social · 27/05/2024
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."
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Susan Kiddie 🍉 @susankiddie.bsky.social · 21/05/2024
"There is no conflict that should be excluded from the reach of the law; no child’s life valued less than another’s. The law we apply is humanity’s law, not the law of any given side. It must protect all the victims of this conflict; and all civilians in conflicts to come."
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Tara Nerte @taranerte.bsky.social · 20/05/2024
🚨 Anna has #SevereME, declining while dependent on her abuser. She must escape to survive. 🙏 Please share this post, in hopes of reaching (especially) Melbourne-area #CovidCautious folk willing to befriend Anna. 🧵: other ways to help 🌍 ⤵️ 1/ #DV #LongCovid #MECFS #NEISVoid #pwME #pwLC
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Tara Nerte @taranerte.bsky.social · 20/05/2024
🚨 Anna has #SevereME, declining while dependent on her abuser. She must escape to survive. 🙏 Please share this post, in hopes of reaching (especially) Melbourne-area #CovidCautious folk willing to befriend Anna. 🧵: other ways to help 🌍 ⤵️ 1/ #DV #LongCovid #MECFS #NEISVoid #pwME #pwLC
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Susan Kiddie 🍉 @susankiddie.bsky.social · 18/05/2024
Stop the Gaza genocide immediately From Dr. Abu Salmiya, Al-Shifa Hospital Director — 'This brief Correspondence is a plea to every human being to help stop this genocide right now—we cannot live like this; the world should not be silent about the killing of civilians in the thousands.
thelancet.com
Stop the Gaza genocide immediately
Since the attacks by Hamas against Israel on Oct 7, 2023,1 the Israeli retaliatory strikes, bombings, and strict sieges have almost never stopped. So far, more than 85% of Gaza's population have been ...
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Tara Nerte @taranerte.bsky.social · 02/05/2024
⚠️ Ontarians Against Infection Spread in Healthcare ⚠️ Opportunity to provide feedback to the CPSO. If you can, please do so 🙏 and share 🔁 Link to survey below 👇 Deadline: Monday, May 6. Kathryn explains in brief 🧵: x.com/kadamssl/sta...
Screenshot of tweet (from linked thread):

The College asks, “Are there issues not addressed in the draft policy and Advice that should be?," and now is your time to answer. 

Let them know you want

✅HEPA filtration
✅adequate ventilation
✅universal respirator masks 

Unsafe healthcare isn't really healthcare at all
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Cats of Yore @catsofyore.bsky.social · 19/04/2024
Posting this again because a lot of people said they found it helpful! Guide to ALT text: www.perkins.org/resource/how...
ALT text copied and pasted from the linked website: An infographic titled “How To Write Alt Text” featuring a photo of a capybara. Parts of alt text are divided by color, including identify who, expression, description, colour, and interesting features. The finished description reads “A capybara looking relaxed in a hot spa. Yellow yuzu fruits are floating in the water, and one is balanced on the top of the capybara’s head.”
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David Davies-Payne @d2p.bsky.social · 18/04/2024
@davetuller1.bsky.social interviews @georgemonbiot.bsky.social. A 40 min summary of the astonishing history & politics of #MECFS and #LongCovid. If you're a pt or loved one & wondered why there are no treatments & research has been so limited for 30 years👇 www.youtube.com/watch?v=GC5i...
youtube.com
Interview with Guardian columnist George Monbiot on the mistreatment of ME/CFS patients
Earlier today I spoke with George Monbiot, a British investigative reporter and political activist who has been a columnist for The Guardian for almost three...
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Charlotte Clymer @charlotteclymer.bsky.social · 14/04/2024
Anyone who claims to know exactly what’s going on right now and what exactly is about to happen is full of shit. This is one of those moments when we all need to slow down and be skeptical of most “information” out there. The best weapons of propagandists are fear and confusion.
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My IRL friends call me Chris @christyceeck.bsky.social · 14/04/2024
This story is devastating. See these children. Speak of these children. “I saw a boy die from pain,” he had told me earlier. “He was 10 years old, & they were amputating, cutting thru his leg with no anesthesia. He just died. That was in Nasir hospital. He was actually the son of another doctor.”
newlinesmag.com
Gaza in a Million Pieces
After six months, Arwa Damon is finally allowed in to find a war being waged mainly against children
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Tara Nerte @taranerte.bsky.social · 08/04/2024
Pleased to accept delivery today from a Canada Post worker who wore a KN95 mask. Thank you for helping reduce the spread of airborne pathogens, and for setting a good example! 👍
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Campbell J. Brice ✝️ 🌻 • 🍐 🇺🇦 @incessantbarking.bsky.social · 28/03/2024
Excellent presentation from Prof David Putrino @putrinolab.bsky.social to (Australian) Federal Parliament yesterday on #LongCOVID, #MEcfs, and PEM. PEM is ‘behaviourally distinct’ from fatigue, exercise intolerance, effort preference, and deconditioning.
youtube.com
Parliament - Professor David Putrino
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My IRL friends call me Chris @christyceeck.bsky.social · 26/03/2024
"Among the group of children who developed long COVID, all remained asymptomatic during the 14 days following acute infection.. "The fact that approximately 1 in 13 asymptomatically infected children developed PCC [post-COVID condition, or long COVID] is concerning & requires further investigation"
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Susan Kiddie 🍉 @susankiddie.bsky.social · 26/03/2024
My fellow #Covid conscious people, you are not wrong, you are just early. Keep going. “The oncoming burden of long COVID faced by patients, health-care providers, governments and economies is so large as to be unfathomable." #LongCovid www.nature.com/articles/s41...
nature.com
The immunology of long COVID - Nature Reviews Immunology
SARS-CoV-2 infection can lead to a diverse array of chronic symptoms, collectively termed ‘long COVID’. In this Review, Altmann and colleagues explore current thinking about the pathophysiology of lon...
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Tara Nerte @taranerte.bsky.social · 23/03/2024
Very good anonymous survey from @physiosforme.bsky.social that will inform a larger study. Please share. #pwME / #pwLC (with PEM) who’ve tried vagus nerve stimulation via the ear*: Please consider spending spoons on this. Took me 20min. Well-informed questions. I believe it’ll provide helpful data.
physiosforme.com
tvNS survey 2 | Physiosforme
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Plague Poems @plaguepoems.bsky.social · 22/03/2024
What I miss most about the time before the pandemic was not knowing how many people how many people I trusted would abandon me in the event of a pandemic.
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Cate @midcatecrisis.bsky.social · 21/03/2024
We can actually organize towards a society that works for the good of all and meets everyone's needs. We can. We have to listen to what everyone needs to build it, though.
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Susan Kiddie 🍉 @susankiddie.bsky.social · 20/03/2024
'We cannot lift our heads, we cannot speak loudly, we can hardly breathe. I'm whispering as I speak to you so the [Israeli soldiers] do not notice that we are here' www.middleeasteye.net/news/war-gaz...
middleeasteye.net
Civilians trapped as Israeli forces besiege al-Shifa hospital in Gaza
Besieged Palestinians describe harsh conditions under Israeli siege as the largest medical facility in Gaza is facing intense attacks
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My IRL friends call me Chris @christyceeck.bsky.social · 19/03/2024
Gazans aren't starving, they're being starved. "The extent of Israel’s continued restrictions on entry of aid into Gaza, together with the manner in which it continues to conduct hostilities, may amount to the use of starvation as a method of war, which is a war crime.” - Volker Turk, UNCHR
theguardian.com
UN says Israeli restrictions on Gaza food aid may constitute a war crime
High commissioner for human rights describes crisis as human-made as hunger levels worsen
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Susan Kiddie 🍉 @susankiddie.bsky.social · 18/03/2024
New Oxfam report shows Israel continues to block aid in #Gaza despite ICJ #genocide court ruling. Rejected aid, including Oxfam water and sanitation gear, is now stockpiling in a warehouse at Al Arish. www.oxfam.org/en/press-rel...
oxfam.org
Israel government continues to block aid response despite ICJ genocide court ruling, says Oxfam | Oxfam International
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