Sleepy Amy

@sleepyamy.bsky.social

Pile of poor coping mechanisms in a malfunctioning meatsack. POTS, EDS, probable ME/CFS and more 🙃 Nature lover, bird watcher, politically left. @amy_is_tired on The Other Place. Mask up! 😷 For my music, follow @amyclaromusic.bsky.social

If you ❤ 80s music or know someone who does, Justin's book will be a good choice for you. It's divided into easily digestible nuggets and full of cool facts. Impress your friends or just be like 'oh I didn't know that' to yourself. 🤓 🎹 💿 🎶

Justin Lewis@whenisbirths.bsky.social · yesterday

#IntoTheGroove is 1 today, and I have nothing special ready for an anniversary plug bc it’s been that kind of week. But as you start making Christmas gift lists, do consider us, if you haven’t already (and thank you if you have).

Disability doesn’t care how old you are. Specialist food is no cheaper if you’re 19. Employers don’t lose their prejudice if you’re 21. This is blatant intergenerational inequality from Labour. Younger disabled people of all severities deserve better. www.theguardian.com/politics/202...

Key disability benefit for young people may be axed under major welfare changes

Exclusive: Plan under discussion involves intensive support to help young people into employment

theguardian.com

i worry that men think being A Good Guy is dramatically and heroically intervening on behalf of an endangered woman and then being publicly rewarded on a grand scale when actually being A Good Guy is just usually saying, “hey man that’s not funny” or “wow that’s fucked up” and there is no reward

“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.

#NEISvoid What papers/resources have you found most helpful for onboarding new doctors in a hospital visit? Surgical considerations would also be helpful (ex: anesthesia asks) I'm making up a hospital packet in case of emergency/low functioning admission 🙏 Dx list 👇 #MECFS #hEDS #POTS #MCAS

#MEcfs folks, they're so close to £23k - still not their stretch target, but close. I've just put in another £250, I can't afford more right now. If you can add a few quid, it all helps. May come to nothing but, personally, I feel better knowing that this work is happening. #SevereME

Firstname Lastname #FuckTrump@notunpackedyet.bsky.social · 2w ago

Ps. I know you'll have a lot of responses, and you may already be aware, but it's interesting to note that a group of ppl in ME community have been taking legal action over government inaction: NHS care for ME now share.google/8T1umLrKRla4...

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

You might have known someone who went on to develop MECFS or LC. We’re maybe someone you just stopped seeing over time, who dropped out of your social groups, or from work. We go quiet. Say you can’t meet up a few times, and you stop being asked. We’re there, but mostly we’re stuck at home. #MECFS

sarah boothby@swastrosarah.bsky.social · 2w ago

www.crowdjustice.com/case/justice... Please share widely #ME/cfs #LongCovidME #HumanRights #NHSReform

Can you spare a £fiver+ ? People with #MEcfs are crowd funding a legal challenge to the NHS for failing to provide care, especially for very severe ME - where patients are still being harmed despite many deaths. Globally countless millions with #LongCovid now meet the diagnostic criteria for ME.

Alem Matthees@alemmatthees.bsky.social · 2w ago

A persuasive statement from Sarah Boothby @swastrosarah.bsky.social about the apparent necessity of legal action such as #JusticeForME to help overcome the decades of inaction/stonewalling and to 'keep the bastards honest' (a phrase used in Australian politics). www.crowdjustice.com/case/justice...

"Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME."

[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)

[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724

[3] Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., Levin, B. (2018). https://doi.org/10.1186/s40359-018-0218-3

[4] Valerie Eliot Smith (2015) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/

[5] Brighton Coroners Court, 13 June 2006

[6] Rochdale Coroners Court, 19 May 2018

People will cut out artificial food dyes, spend hours at the gym, drink vitamin infused water…and then go to the airport and rawdog breathing in an airborne pathogen that can disable you permanenty and is basically guaranteed to be there.

Dr. Jen Irwin@drjenirwin.bsky.social · 2w ago

“Air sampling at four US airports in 2023 and 2024 detected SARS-CoV-2, the virus that causes COVID-19, in over 98% of samples and influenza A in over 17%, according to a study published in PLOS Global Public Health” www.cidrap.umn.edu/covid-19/air...

Nothing says "lets clean up politics to deal with Reform's super rich donors" like holding a No.10 drinks party for Labour's Ultra High Net Worth donors.

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Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.