Philippa's avatar

Philippa

@notunpackedyet.bsky.social

141 followers 185 following 232 posts

Here to talk about #MEcfs, #MEspine, hypermobility, LC, chronic illness and disability.

Philippa's avatar Philippa @notunpackedyet.bsky.social
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It's the 1970s USSR again? Quick, get back in the time machine!

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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I recently heard from a neurosurgeon that more ppl are going to him for treatment for CCI/AAI and tethered cord following Long COVID. Once the domain of ME and EDS patients, seems it's part of the LC picture too. The brain is definitely in the mix. Quelle surprise!

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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...their estimated savings figures etc. are accurate. They aren't an investment scam, if that's what you are wondering.

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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Legit in what sense? If you want to check them out, why not start by checking their Companies House and/or FCA registration, look at TrustPilot reviews. See if they would fall within any Ofgem guarantees that apply to energy sector. Ripple is a community energy business, but I can't say whether...

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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Interesting insights on #MS treatment, also showing lack of risk-funding from NIH and reliance on pharma or NGO funding is prolonging patient suffering. www.ucsf.edu/news/2024/06...

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Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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Conditions at UK immigration removal centre ‘worst inspectors have seen’

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Joe Katz's avatar Joe Katz @joekatz45.bsky.social
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Also worth noting a common theme: strategic voting/unifying behind a single candidate to defeat a candidate you both don't want to win, a normal democratic practice, being redefined as "cheating," "dirty tricks," "collusion," "a coup"... thus justifying actual cheating/dirty tricks/collusion/coups.

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Orcspiration's avatar Orcspiration @orcspiration.bsky.social
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SHELVE YOUR SHORTSWORD, TODAY YOU WILL BATTLE THE THOUGHTS THAT WOULD STEAL OUR JOY. AND YOU WILL WIN.

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Reposted by Philippa

Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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Rescuers search rubble of Kyiv children’s hospital after Russian missile attack kills at least 29 in Ukraine

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Reposted by Philippa

Reposted by Philippa

kate's avatar kate @bookhaven.bsky.social
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"Post-hoc tests revealed that the stayed the same group had higher incidence of EDS than the better group"

#EDS #POTS

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Pavel's avatar Pavel @spavel.bsky.social
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Well this is grim

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Astronomer Royal for Scotland | Catherine Heymans's avatar Astronomer Royal for Scotland | Catherine Heymans @astroroyalscot.bsky.social
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Amazing courage and bravery shown by Dianna Cowern: 3M YouTuber PhysicsGirl. Yesterday she live-streamed her day to show the world what severe LongCovid/MECFS looks like & fundraise for research of this life-changing disease (which I have a milder form of) 🙏🙏Dianne🧪

www.youtube.com/live/v8HWt9g...

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Orcspiration's avatar Orcspiration @orcspiration.bsky.social
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A WARRIOR FEARS NOTHING, NOT EVEN ASKING FOR HELP.

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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And apparently I now also have POTS. That makes it #MEcfs #MEspine (CCI/AAI), OI, hypermobility (possibly hEDS), Occult Tethered Cord (OTC), Adhesive Arachnoiditis and now POTS. Anything else wanna fuck me up while I'm at it?

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Reposted by Philippa

Kolt (rustled jimmies)'s avatar Kolt (rustled jimmies) @knivesonly.bsky.social
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criminalising the unhoused and sleeping outdoors - ugly laws - is an attack on disabled and chronically ill people

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Reposted by Philippa

Nick Young's avatar Nick Young @nickofnz.bsky.social
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Some say the wind isn’t a reliable source of energy in New Zealand. The wind:

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Sus Scrofa's avatar Sus Scrofa @susscrofa.bsky.social
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Can you please help me with some research? I’m looking for the amount of public funding for research of different diseases (usually in USD/DALY*), esp. Long Covid and ME/CFS compared to other chronic diseases, of 🇨🇭(and maybe some other countries). Thank you! * Disability-adjusted life years

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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I almost stopped the wrong side up doing a loop in a Bulldog once. Instructor was pretty quick to yell 'pull up'. Happens to us all.

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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If you don't want a future with more far-right populism, don't vote Tory, don't vote Reform. Ideally, don't vote Labour, but at least they may be the lesser of two evils, a sticking plaster for the meantime. 40 years of neoliberalism got us here. We need systemic change.

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Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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‘A deeply unfair and unequal country’: report warns of unprecedented far-right gains in UK

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Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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Revealed: how Sunak dropped smoking ban amid lobbying from tobacco firms

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Matt Seybold's avatar Matt Seybold @mattseybold.bsky.social
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On this day, 150 years ago, Mary Ann Cord told the story of her early life, conditions of enslavement, separation from her children at a human auction in 1852, & miraculous reunion with her youngest son, Henry, to a rapt audience on the porch at Quarry Farm in Elmira. 1/7

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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You can thank the Tories for that. Cracking down on protest whenever they've been able.

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Reposted by Philippa

Dr. Genevieve Guenther's avatar Dr. Genevieve Guenther @doctorvive.bsky.social
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I was JUST saying last night that we need an answer to answer the obvious question: are the ff industry and the petrostates manipulating supply to punish govts w high prices for implementing green policies? And lo! Senator Whitehouse & the Budget Committee are ON THE CASE ! 🙌

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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"Oligarchs seek the destruction of oversight, which is why UK bodies such as the [EA & HSE] have been...gutted. The same desire was the driving force behind Brexit. They want the cessation of protest. They want a failing NHS, to justify privatisation. They want malleable politicians and a tame BBC."

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Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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‘Max is my eyes’: Paralympian says post-Brexit rules stop him flying with his guide dog

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Philippa's avatar Philippa @notunpackedyet.bsky.social
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Stewardship only works if investees are willing to engage. If not, divestment. Good on LGIM for sticking to its policy. Hopefully those coal and coke reserves will be stranded assets long before their wind down dates.

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Katie Mack's avatar Katie Mack @astrokatie.com
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This is why mask bans are suddenly being proposed. If you’re in a place where that’s happening and you think we should prioritize public and personal health and freedom over expanding the powers of the police state then please do let your representatives know why the freedom to mask matters to you

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Unofficial Guardian (World) Bot's avatar Unofficial Guardian (World) Bot @guardian-world-rss.bsky.social
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PPE worth £1.4bn from single Covid deal destroyed or written off

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Anna Orridge's avatar Anna Orridge @anna-orridge.bsky.social
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These people have an impoverished idea of what dignity means. For a start, if you’re incapable of work because of disability, are you leading an undignified life? We all rely on other human beings. We’re a social species. It’s just the bonds of reliance look different at different times of life.

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🇵🇹 snipe, lixo tóxico ⭑⭒⭒⭒⭒'s avatar 🇵🇹 snipe, lixo tóxico ⭑⭒⭒⭒⭒ @snipe.lol
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Philippa's avatar Philippa @notunpackedyet.bsky.social
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Coz that supports the neoliberal narrative that anyone who needs help (read: financial or practical support to live a full(er) life) is a drain on public services (which Tories love defunding) and should be ashamed (I'm in the UK, so suitably bitter with the way disabled ppl are treating).

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Astronomer Royal for Scotland | Catherine Heymans's avatar Astronomer Royal for Scotland | Catherine Heymans @astroroyalscot.bsky.social
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Note the Chinese Space Agency don't publish timings of mission events in advance, so we only know Chang'e-6 will return on the 25th June. Space News thinks it will be around 0600 UTC though, based on airspace closures! 🧪🔭🛰️

spacenews.com/change-6-hea...

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Reposted by Philippa

Orcspiration's avatar Orcspiration @orcspiration.bsky.social
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TOMORROW YOU WILL GRAB THE SUN WITH BOTH HANDS AND DEVOUR IT. FOR NOW DOES YOUR BODY NEED STRETCHING?

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