@bananamangodog@aus.social avatar

bananamangodog

@bananamangodog@aus.social

Philosopher attempting #permaculture design while existing with #MECFS #Fibromyalgia late diagnosed #AuDHD. Equity advocate. Anti-capitalist. Arch Linux user. Promoter of FOSS.

Born at 333ppm

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tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

"Research Roadmap for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Released"

Free:
https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=1451

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

bananamangodog,
@bananamangodog@aus.social avatar

@tomkindlon @mecfs
The full NINDS report can be found at the following link:

https://www.ninds.nih.gov/sites/default/files/2024-05/Report%20of%20the%20MECFS%20Research%20Roadmap%20Working%20Group%20of%20Council_05_29_2024_508C.pdf

enobacon, to random
@enobacon@urbanists.social avatar

If people in the US had a decent set of options for , a bit of car trouble wouldn't blow a giant hole in your week.

bananamangodog,
@bananamangodog@aus.social avatar

@enobacon you presume the government/governments work for the people instead of capitalist industry.

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

Western Australia: Aged care residents dying needlessly due to vaccine complacency, health advocates warn. By John Flint

@auscovid19

Source: https://thewest.com.au/news/wa/covid-wa-aged-care-residents-dying-needlessly-due-to-vaccine-complacency-health-advocates-warn-c-14581620

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bananamangodog,
@bananamangodog@aus.social avatar

@CarolynStirling @auscovid19 @DenisCOVIDinfoguy when public hospital staff are no longer required to mask you can bet private nursing home staff will be REQUIRED NOT TO.

Dr_Obvious, to Autism German
@Dr_Obvious@chaos.social avatar

@actuallyautistic
When it comes to awareness and false stereotypes an important topic is autistic woman that were ignored to exist for a long time.

When people talk about that they often refer to "female autism" or "female representation". That often focusses on higher level of masking and deep compensation in social skills.

I find that sometimes irritating because I kind of see myself in that description. On the other hand there are woman that show rather stereotypical traits.

bananamangodog,
@bananamangodog@aus.social avatar

@Dr_Obvious @actuallyautistic I'm a straight male that has the attributed "female presentation" of ADHD/Autism. Stereotypes are a lazy persons way of assessing things.

bananamangodog, to disabled
@bananamangodog@aus.social avatar

Can anyone point me in the direction of #disabled persons pursuing self-sufficient lifestyles? The #disability could be mental, physical, or other and the self-sufficiency could be from a #Permaculture, #Prepping or #Sustainability perspective.

Looking for social media accounts, books, blogs, youtube or people doing this kind of thing outside of modern socials that would be happy to have a conversation about it.

@permacultre @mecfs @actuallyautistic

bananamangodog,
@bananamangodog@aus.social avatar

@KnittingMittens @permacultre @mecfs @actuallyautistic Thanks :) I haven't heard of Parkrose Permaculture until now, I'll check it out 👍

bananamangodog,
@bananamangodog@aus.social avatar

@KitMuse @permacultre @mecfs @actuallyautistic Absolutely, and I'm in the same boat really. My personal perspective is that those with disabilities (AKA differences the mainstream society does not cater for) are pioneers in self-sufficiency as in order to survive they have to learn to adapt.

bananamangodog,
@bananamangodog@aus.social avatar

@thorncoyle @KitMuse @actuallyautistic @permacultre @mecfs I'm in the same boat with employment, although I'm working towards being self-employed. I did take out a business name etc and was ready to launch but realised I still couldn't put in the time needed to make it work. Having ME has been a real lesson in realising my brain absolutely does not respect the limited energy of my body when it comes up with ideas.

bananamangodog,
@bananamangodog@aus.social avatar

@thorncoyle @actuallyautistic @KitMuse @permacultre @mecfs Water bricks? How do you use these?

bananamangodog,
@bananamangodog@aus.social avatar

@orbweaving @permacultre @mecfs @actuallyautistic YES! I love what you've achieved and how you're going about it. Since becoming ill I now appreciate the value of community more and realise my old habit of doing everything myself was not the right approach. Over the last few years while being unwell I've raised the idea of renting out a room or two to like minded people that could share the workload of maintaining a house and garden but due to a few bad experiences my partner won't even entertain the idea. Which leaves me overwhelmed due to feeling like I'm not contributing and constantly battling to perform with the little energy I do have. I hope that one day she will understand my perspective and be willing to give it a try as I think there is so much to gain from shared responsibilities.

I've followed you as I greatly appreciated what you've written here and I'm excited that you're encouraged to write more on this topic. How can I make sure I get to read it?

bananamangodog,
@bananamangodog@aus.social avatar

@thorncoyle @actuallyautistic @permacultre @KitMuse Ahh ok, I was thinking they were some fancy building product that stored water and used the thermal mass too. For water storage I'm lucky enough to have 12000L of rainwater tank and numerous 200L barrels and a couple of 20L jerry cans for transport. We also converted the mostly unused swimming pool that was here before us into a pond and that's where all the garden water and chook food (duck weed) comes from.

bananamangodog,
@bananamangodog@aus.social avatar

@thorncoyle @actuallyautistic @permacultre @KitMuse the 200L barrels I found for $15 each and originally had pickles in them.

bananamangodog,
@bananamangodog@aus.social avatar

@dasparky @permacultre @mecfs @actuallyautistic Hey. I'm in a similar situation health wise but am privileged in that I almost own my own home. If I didn't have an understanding partner that would be impossible.

Is there anything specific you think might benefit disabled people more when it comes to sustainability or permaculture? Often being more sustainable or living a simpler life comes with significantly more physical inputs; how have you adapted and what makes it work for you? (or anyone else reading this post feel free to also comment).

bananamangodog,
@bananamangodog@aus.social avatar

@DrSuzanne @actuallyautistic @permacultre @mecfs I hope you can make that work too, it sounds ideal :)

bananamangodog,
@bananamangodog@aus.social avatar

@dasparky @permacultre @mecfs @actuallyautistic All very useful points you have made.
In summarising what you have said it seems to come down to "Share what you have and receive what you haven't in return". You seem to share excess produce, your land or space, tools and skills, and the number 4 bullet point 😁

bananamangodog,
@bananamangodog@aus.social avatar

@BrahmaBelarusian @permacultre @actuallyautistic Thanks for the reply. Often perusing a sustainable lifestyle leads to more physical inputs to achieve that means. Is there anything you have done that enables your sustainability from a physically restricted perspective?

bananamangodog, to mecfs
@bananamangodog@aus.social avatar

It just occurred to me (better late than never) that the majority of information about is shared within the community; arguably this isn't where it is most useful given that most doctors know very little about it and are seemingly unwilling to educate themselves.

Given social media's reach and function would it not be better to organise a campaign to educate medical professionals via the very hashtags or groups they communicate within? Not hijacking so much as a measured leaking of information into these groups so as to not cause too much resistance but with the aim of slowly but surely educating them?

Can anyone with experience in this space comment further on the pros/cons of such an approach? Particularly medical professionals that exist in both worlds or people with campaigning experience.

@mecfs

DenisCOVIDinfoguy, to auscovid19
@DenisCOVIDinfoguy@aus.social avatar

‘Not over’: New resource for schools tackling COVID scourge. By John Flint

"The COVID Safety For Schools Course was launched Monday to provide schools with accurate information and debunk some of the common myths and misunderstandings."

www.covidsafetyforschools.org

@auscovid19

Source: https://thewest.com.au/news/coronavirus/covid-lessons-for-schools-tackles-myths-and-provides-advice-on-keeping-pupils-and-teachers-safe-c-13621541

“Schools have been let down by public health in most states in Australia. The information they’ve been given is grossly inadequate, and in some cases factually incorrect. It’s no wonder schools are finding it hard to prevent COVID spreading. “Kids have their whole lives ahead of them. We should be doing everything possible to prevent them catching a disease that could cause lifelong harm and chronic illness.” Professor Brendan Crabb, Director and CEO of Burnet Institute in Melbourne said the course gave practical advice on how to assess and manage risk, and how to use layered protections, such as ventilation, CO2 monitoring, HEPA filters, masks and testing. “Studies have shown that clean classroom air improves academic performance and reduces student and staff absences. With Australia’s growing teacher shortage, and figures from Canada showing that 38 per cent of people develop Long COVID after three or more infections, schools can’t afford not to act.” An initiative of not-for-profit organisation COVID Safety Australia, the course is intended as a professional development activity for staff in Australian primary and secondary schools. It is also available for parents who want to know how to reduce the risk of COVID to their family. It is available for free at www.covidsafetyforschools.org.

bananamangodog,
@bananamangodog@aus.social avatar

@3TomatoesShort @DenisCOVIDinfoguy @auscovid19 I'd wager they probably are but were prevented from doing so by politics and were too gutless or comfortable to fight back.

atomicpoet, (edited ) to random

How is this 290ft tiny cabin anyone’s idea of “retirement living”?

I’d rather rent a studio apartment. At least then I’d get running water and plumbing.

bananamangodog,
@bananamangodog@aus.social avatar

@atomicpoet I guess it saves on having to buy a coffin when you finally die 🤷‍♀️

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Having blood test tomorrow.

How do I ready myself? I was going to eat/drink more for the past week but got a long migraine and health problems bc of hot humid weather. So I drank more but eating more didn’t work out much.

I also have low blood volume so that makes it even worse. I’m generally wrecked for at least a few days after a blood draw.

Suggestions?

@chronicillness
@mecfs

bananamangodog,
@bananamangodog@aus.social avatar

@halcionandon @chronicillness @mecfs Check with the clinic and see if they have capacity for you to lie around in a comfy chair for 30 minutes after your blood draw to recover. Take some electrolyte water to sip during that time and/or some non-messy food.

The phenomena of a blood draw taking so much energy is quite a strange but very real one. I'm not sure I would have understood it had I not experienced it myself. I've taken blood from people thousands of times and have taken my own blood numerous times but it wasn't until I became sick with MECFS I suddenly became intolerant of blood draws. It doesn't make much sense but is a very real phenomenon. I'd love to know why.

bananamangodog,
@bananamangodog@aus.social avatar

@halcionandon @chronicillness @mecfs Sorry yes if taken prior to blood sample they may interfere with the results. Best taken immediately after whilst continuing to lay down.
13 vials sounds like a lot but it isn't much blood. It is strange how little it takes to affect us with ME though.

bananamangodog, to mecfs
@bananamangodog@aus.social avatar

Excuse the interruption but as an ex-Registered Nurse I know all too well the misinformation that exists in the medical community surrounding and the incorrect assumptions that leads practitioners to adopt. Too often I've heard "but we never learnt about that (MECFS) in our training".

This is why it is imperative medical textbooks are updated with the latest science on and related conditions. Please sign this petition to have this one book updated and perhaps we can start the ball rolling in that other publishers will follow suit.

Thank you for your time.

https://www.change.org/p/me-cfs-changing-the-definition

@mecfs

Private
bananamangodog,
@bananamangodog@aus.social avatar

@eo @actuallyautistic from the research I have conducted over the past few months since working out I am autistic I think it's a little early for this research to occur. However the advances in autistic/neurodivergent discourse and voices of actually autistic people over the past few years I expect this research won't be far off. I believe it could actually occur now, but I wouldn't have said the same thing even 3 years ago.

bananamangodog,
@bananamangodog@aus.social avatar

@StevenSaus @eo @actuallyautistic I suspect the question should be how many autistic/neurospicy sociologists are given the freedom to investigate the phenomenon (as opposed to being confined to investigating what neurotypical people demand). I do however agree with your vision for medical science; I myself was in a medical related field and fought that fight until I couldn't any longer, but received very little support from my peers. I would REALLY like to be given the freedom to stack a public health department with autistic staff to see what would happen. I think it would be beautiful.

eyesquash, (edited ) to random
@eyesquash@mastodon.world avatar


What are masks for?

bananamangodog,
@bananamangodog@aus.social avatar

@Frances_Larina @pfred60 @trendless @eyesquash @auscovid19

Same in Australia. What I want to know is which lobbyists campaigned the governments in both our countries to dismantle epidemiology and public health measures that for years have safeguarded the public.

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