Alacka Spooner
@alacka.bsky.social
Lover of baking & dogs. Posting about ME/CFS, disability, NDIS, current affairs (not mine!) and life. Pronouns: She/her Location: Australia
Here is your friendly reminder to back up any social media data you might want to keep.
I just got sent to
Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!
I just got sent to
Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!
November 21, 2025 at 5:35 AM
Here is your friendly reminder to back up any social media data you might want to keep.
I just got sent to
Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!
I just got sent to
Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!
Reposted by Alacka Spooner
Exclusive | Speakers are boycotting the Bendigo Writers Festival after receiving a code of conduct from event organisers that required “compliance” with a controversial definition of antisemitism.
Writers boycott Bendigo Writers Festival for demanding 'compliance' with controversial antisemitism rule
Several notable speakers have already bowed out, with more set to follow, Crikey understands.
www.crikey.com.au
August 14, 2025 at 6:07 AM
Exclusive | Speakers are boycotting the Bendigo Writers Festival after receiving a code of conduct from event organisers that required “compliance” with a controversial definition of antisemitism.
Reposted by Alacka Spooner
Stand up for disability care! SARRAH urges the Australian Government to reject harmful proposed pricing changes. Read more at the link below
sarrah.au/NDIS
#ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky
sarrah.au/NDIS
#ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky
June 13, 2025 at 5:02 AM
Stand up for disability care! SARRAH urges the Australian Government to reject harmful proposed pricing changes. Read more at the link below
sarrah.au/NDIS
#ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky
sarrah.au/NDIS
#ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky
Tomorrow I’ll reach the 190 week mark in my #NDIS home mods saga.
It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.
It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.
April 30, 2025 at 11:40 AM
Tomorrow I’ll reach the 190 week mark in my #NDIS home mods saga.
It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.
It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.
I’m one of the lucky ones who had great drs in my corner and I could grasp what was needed from them so I got access. The process though (incl a rejection first time) made me a lot sicker. If it had been simple I’d have gotten access a year earlier and not gotten so severe which costs ndis more.
@markbutlermp.bsky.social
"Just 3 per cent of #mecfs patients surveyed by Emerge Australia in 2019 said they were able to access the National Disability Insurance Scheme (NDIS) — a troubling figure ... given how physically and cognitively disabling ME/CFS can be."
www.abc.net.au/news/2025-04...
"Just 3 per cent of #mecfs patients surveyed by Emerge Australia in 2019 said they were able to access the National Disability Insurance Scheme (NDIS) — a troubling figure ... given how physically and cognitively disabling ME/CFS can be."
www.abc.net.au/news/2025-04...
Sarah's 'career change' sounds like a dream, until you hear her full story
What about the people who change their career not to scratch some creative or philanthropic itch or make a truckload of money, but out of necessity — because illness or injury derailed or destroyed th...
www.abc.net.au
April 14, 2025 at 8:08 AM
I’m one of the lucky ones who had great drs in my corner and I could grasp what was needed from them so I got access. The process though (incl a rejection first time) made me a lot sicker. If it had been simple I’d have gotten access a year earlier and not gotten so severe which costs ndis more.
Reposted by Alacka Spooner
The NDIA spent thirty-seven MILLION fighting disabled people & their families in court to stop us getting supports in 2023-2024.
In 2019-2021 they apparently lost 76% of cases at the then AAT.
So much for that 'waste clock' and demonising the disabled.
www.righttoknow.org.au/request/ndia...
In 2019-2021 they apparently lost 76% of cases at the then AAT.
So much for that 'waste clock' and demonising the disabled.
www.righttoknow.org.au/request/ndia...
NDIA expenditure on individual law firms for 2023-2024 - a Freedom of Information request to National Disability Insurance Agency
Please provide the following information about all law firms engaged by the NDIA in 2023-2024 for matters to which the NDIA was a Respondent at the Administrative Appeals Tribunal (AAT):
1) A list o...
www.righttoknow.org.au
February 11, 2025 at 1:56 AM
The NDIA spent thirty-seven MILLION fighting disabled people & their families in court to stop us getting supports in 2023-2024.
In 2019-2021 they apparently lost 76% of cases at the then AAT.
So much for that 'waste clock' and demonising the disabled.
www.righttoknow.org.au/request/ndia...
In 2019-2021 they apparently lost 76% of cases at the then AAT.
So much for that 'waste clock' and demonising the disabled.
www.righttoknow.org.au/request/ndia...
Scary, scary times in the USA.
🪓MASS DELETION UPDATE—More than 1,000 pages are now deleted from websites of CDC, National Institutes of Health, and other sites of the Department of Health and Human Services, according to a new WSJ analysis—including many **vaccine recommendation** scientific pages!
February 1, 2025 at 11:07 AM
Scary, scary times in the USA.
Reposted by Alacka Spooner
BREAKING: The Household Pulse Survey, a key source of Long COVID prevalence data, was among the CDC pages taken down today following Trump's order to remove “gender ideology” references.
More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
Breaking: Vital Long COVID data taken down following Trump order - The Sick Times
A key source of U.S. Long COVID data is now offline following a purge of information related to sexual orientation and gender identity ordered by President Donald Trump’s administration. The Household...
thesicktimes.org
January 31, 2025 at 11:39 PM
BREAKING: The Household Pulse Survey, a key source of Long COVID prevalence data, was among the CDC pages taken down today following Trump's order to remove “gender ideology” references.
More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
Independent review of Music & Art therapy commissioned. Changes on hold. Reports in March. #NDIS www.ndis.gov.au/news/10530-i...
Independent review of NDIS funded music and art supports | NDIS
The NDIA is commissioning an independent review of appropriate NDIS pricing for music and art supports, based on available evidence.
www.ndis.gov.au
December 13, 2024 at 3:22 AM
Independent review of Music & Art therapy commissioned. Changes on hold. Reports in March. #NDIS www.ndis.gov.au/news/10530-i...
#PwME what is something you like to do for your well-being when you hit overwhelm with all the organising, managing & educating you now need to do because of your #mecfs #disability?
November 26, 2024 at 4:34 AM
#PwME what is something you like to do for your well-being when you hit overwhelm with all the organising, managing & educating you now need to do because of your #mecfs #disability?
Professional bodies for music therapists and art therapists are reporting their services are no longer going to be allowed to be funded by #NDIS. These evidence based therapies can produce great results. E.g. music therapy can be great for language development. chng.it/4f9S9v5yMt
Sign the Petition
Save Music Therapy: Keep It Funded Under NDIS
chng.it
November 26, 2024 at 1:36 AM
Professional bodies for music therapists and art therapists are reporting their services are no longer going to be allowed to be funded by #NDIS. These evidence based therapies can produce great results. E.g. music therapy can be great for language development. chng.it/4f9S9v5yMt
Wouldn’t be nice if #NDIS participants & nominees could charge for all our NDIS admin work and the education we find ourselves needing to provide to so called providers?
November 25, 2024 at 7:42 AM
Wouldn’t be nice if #NDIS participants & nominees could charge for all our NDIS admin work and the education we find ourselves needing to provide to so called providers?
Reposted by Alacka Spooner
Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
'I'm not inserting catheters for fun, mate': NDIS participant's fight for funding leaves him furious
Adam Quarrell says being an NDIS participant is like "being in an abusive relationship". He's fighting to have funding restored in his care plan for catheters, without which he says he will die.
www.abc.net.au
November 21, 2024 at 5:32 AM
Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
"Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner."
♿️ #disability #NDIS
www.abc.net.au/news/2024-11...
OT co had details of my Dx and AT I needed, added me to waiting list. Then they contact me & confirm that ME/CFS is my “primary disability”. Result is I’m off the list. I can’t help but think it’s my Dx not lack of avail. of an OT who can prescribe grab rails that is the issue.Auto email kicker:
November 22, 2024 at 3:11 AM
OT co had details of my Dx and AT I needed, added me to waiting list. Then they contact me & confirm that ME/CFS is my “primary disability”. Result is I’m off the list. I can’t help but think it’s my Dx not lack of avail. of an OT who can prescribe grab rails that is the issue.Auto email kicker:
I have experienced so much patient blaming, “poke you 5 ways and give up” or being told that I’m faking or it’s psychosomatic. Doctors don’t take responsibility for figuring out what’s wrong or how to help. That’s up to me apparently. And that’s not just with ME/CFS but with other conditions too.
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
1/
1/
November 21, 2024 at 1:08 AM
I have experienced so much patient blaming, “poke you 5 ways and give up” or being told that I’m faking or it’s psychosomatic. Doctors don’t take responsibility for figuring out what’s wrong or how to help. That’s up to me apparently. And that’s not just with ME/CFS but with other conditions too.
My dog absolutely loves going to the vet. Here she is in the consulting room waiting for the vet to come in. Every passing shadow gets her tail wagging.
If I got lots of treats every time I went to the doctor maybe I might feel the same way?
If I got lots of treats every time I went to the doctor maybe I might feel the same way?
November 21, 2024 at 12:51 AM
My dog absolutely loves going to the vet. Here she is in the consulting room waiting for the vet to come in. Every passing shadow gets her tail wagging.
If I got lots of treats every time I went to the doctor maybe I might feel the same way?
If I got lots of treats every time I went to the doctor maybe I might feel the same way?
I think I’ve reached the age where all policemen look too young.
Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis
Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis
November 19, 2024 at 2:17 AM
I think I’ve reached the age where all policemen look too young.
Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis
Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis
Reposted by Alacka Spooner
And that's all, folks. Chick #3 made an exciting exit dragged off with a parent. Fare thee well. #367Collins #PeregrineFalcons2024
November 17, 2024 at 1:43 AM
And that's all, folks. Chick #3 made an exciting exit dragged off with a parent. Fare thee well. #367Collins #PeregrineFalcons2024
Reposted by Alacka Spooner
🗣️The federal Health Minister Mark Butler will speak at the Parliamentary Friends of #MECFS meeting 18th Nov
👩🏻💻 Pls join event via zoom to ⬆️ attendee numbers
🗳️ Politicians notice numbers
🛌Cameras can be off to allow resting
Click on link to join zoom
tinyurl.com/2zt7wbas
👩🏻💻 Pls join event via zoom to ⬆️ attendee numbers
🗳️ Politicians notice numbers
🛌Cameras can be off to allow resting
Click on link to join zoom
tinyurl.com/2zt7wbas
November 16, 2024 at 9:25 AM
🗣️The federal Health Minister Mark Butler will speak at the Parliamentary Friends of #MECFS meeting 18th Nov
👩🏻💻 Pls join event via zoom to ⬆️ attendee numbers
🗳️ Politicians notice numbers
🛌Cameras can be off to allow resting
Click on link to join zoom
tinyurl.com/2zt7wbas
👩🏻💻 Pls join event via zoom to ⬆️ attendee numbers
🗳️ Politicians notice numbers
🛌Cameras can be off to allow resting
Click on link to join zoom
tinyurl.com/2zt7wbas
Wordle 1,247 2/6
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November 16, 2024 at 11:48 PM
Wordle 1,247 2/6
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Post a picture you took (no description) to bring some zen to the timeline
November 16, 2024 at 11:38 PM
Post a picture you took (no description) to bring some zen to the timeline
Reposted by Alacka Spooner
Humbled by all the kind people who’ve reached out to me asking how they can help us after the Asylum Seeker Resource Centre was robbed twice in past 48 hrs
If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday
If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday
November 13, 2024 at 9:57 AM
Humbled by all the kind people who’ve reached out to me asking how they can help us after the Asylum Seeker Resource Centre was robbed twice in past 48 hrs
If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday
If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday
Reposted by Alacka Spooner
(New Zealand)
2-minute video piece plus text that is somewhat similar to a transcript
"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"
www.newshub.co.nz/home/new-zea...
#MEcfs #CFS #PwME
2-minute video piece plus text that is somewhat similar to a transcript
"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"
www.newshub.co.nz/home/new-zea...
#MEcfs #CFS #PwME
January 22, 2024 at 7:52 PM
(New Zealand)
2-minute video piece plus text that is somewhat similar to a transcript
"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"
www.newshub.co.nz/home/new-zea...
#MEcfs #CFS #PwME
2-minute video piece plus text that is somewhat similar to a transcript
"Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome"
www.newshub.co.nz/home/new-zea...
#MEcfs #CFS #PwME
Reposted by Alacka Spooner
“New study has doctors recommending you eat your weight in cheese every day.”
Ugh, another medical study funded by Big Parma
Ugh, another medical study funded by Big Parma
January 22, 2024 at 11:20 PM
“New study has doctors recommending you eat your weight in cheese every day.”
Ugh, another medical study funded by Big Parma
Ugh, another medical study funded by Big Parma