Tara Nerte

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.

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.”

@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.

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.

‘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

‘Gaza must be eliminated’: Israel’s airwaves are filled with pro-genocide propaganda | Arwa Mahdawi

This is a family I know and I’d be grateful for any leads or shares especially if you know people in the area.

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...

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...

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.

screenshot of Nevra's Bluesky bio @nlizaki.bsky.social

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...

Pay Adrian Bamforth using PayPal.Me Go to paypal.me/SaveLizNevra and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.

Nevra is closer than ever to long-needed surgery.
She must remain safely housed.

Consider donating, if able. Friends worldwide do all we can (like Adrian 👇) but we are mostly ill & cash-strapped too.

Please share this thread to reach more helpers! 🙏 www.paypal.com/paypalme/Sav...

screenshot of Nevra's Bluesky bio @nlizaki.bsky.social

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...

Yellow and orange sunburst background with the words “Fight fascism: Equip good people to do good”

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. 🙏

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.

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

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...

Still looking... 👁️🔍
DMs open, if you know of capable + conscientious + Covid-safe eye doctors in the Kitchener-Waterloo area. 🙏

Something like "Just mask. Don't make patients ask." ?

Assuming the campaign is directed at hospital staff, primarily. I would want it to highlight:
- the absurdity of making people sicker whilst investing resources ostensibly to make them well;
- respirators prevent spread of airborne infection

💜

Medic wearing an N95 mask, next to a schematic of the eye. Text reads: Help me find a safe eye doctor?

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. 💜

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.

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...

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

Horrifying. I'm so sorry.

It’s Airborne Want to know how to stop COVID and other airborne diseases? Interested in ventilation, filtration and UV to clean the air? This blog has it all.

Joey Fox's website may be a resource. (Haven't looked at it in detail.) itsairborne.com

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

I haven't met Norm yet. Guess I need to spend more time here. 🤷

😜

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...

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!