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tomkindlon , to disability
@tomkindlon@disabled.social avatar

Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer).

My thoughts are with those with conditions such as ME for which this is relevant.

Hashtags:
@longcovid
@chronicillness
@spoonies
@disability
@mecfs

tomkindlon , to disability
@tomkindlon@disabled.social avatar

From ABC (Australia)

"Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know"

https://www.abc.net.au/news/2024-06-18/ambulatory-wheelchair-mobility-aid-users/103937484

One of the people interviewed has ME/CFS

=========================
Hashtags:
@chronicillness
@spoonies
@disability
@longcovid
@mecfs







tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

UK Government Open Consultation
“Modernising support for independent living: the health & disability green paper”

Article with links
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

The government has published a series of documents including a Green paper & evidence pack

@disability @disabilityjustice
@chronicillness @spoonies

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

There is consultation questionnaire about whether assessment for PIP should be based more on a diagnosed condition or on its functional impact; about the need for assessment and review for awarding PIP, and how to assess fluctuating conditions.


@disability @disabilityjustice @chronicillness @spoonies
@mecfs

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

People with disabilities including a woman with ME complaining about how they have been treated by the Welsh health service

https://www.bbc.com/news/uk-wales-68891090

@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

tomkindlon , to disability
@tomkindlon@disabled.social avatar

@mecfs
@longcovid
@chronicillness
@spoonies
@disability

tomkindlon , to disability
@tomkindlon@disabled.social avatar

Notes from a recent support group meeting: "Minority Survival Skills: Facing Internal & External
Ableism".

Note: "minority" here doesn't refer to ethnic or racial groups but having a or

https://batemanhornecenter.org/wp-content/uploads/2024/02/20240216-Support-Group-Recap.pdf

https://batemanhornecenter.org/wp-content/uploads/2024/02/Minority-Survival-Skills-The-Victim-and-Empowered-Identities-for-Chronic-Illness-and-Disability.pdf

@mecfs
@chronicillness
@spoonies
@disability

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

(Ireland)

This is an easy to read summary of the green paper on disability reform that is out for consultation.

https://www.gov.ie/pdf/?file=https%3A%2F%2Fassets.gov.ie%2F270940%2F581637ed-ada2-4cb4-a913-efb099245992.pdf&fbclid=IwAR2Ithrzv1BCYvpqdhq0wKO7AYzrFem9vMOK7q7i3WYyQNn6H6E1DFQw1HU#page=null

With just 2 weeks to go to the deadline for submissions, this document I think is a good place to start if you haven't started reading.


@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

1/

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

My new blog post:

Comments from an ME/CFS perspective on “The Green Paper on Disability Reform:a flawed effort to reform payments for people with disabilities" (Cousins)

https://forums.phoenixrising.me/blog-articles/comments-from-an-me-cfs-perspective-on-the-green-paper-on-disability-reform-a-flawed-effort-to-reform-payments-for-people-with-disabilities-cousins.3482/


@mecfs
@chronicillness
@spoonies
@disability
@disabilityjustice

tomkindlon , to disability
@tomkindlon@disabled.social avatar

Somebody shared the following saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I
relate so much"

Here's the TikTok link:
https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

@chronicillness
@spoonies
@disability
@mecfs
@longcovid

video/mp4

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

"Framing the activists: gender, race, and rhetorical disability in contested illnesses"

https://www.tandfonline.com/doi/full/10.1080/00335630.2023.2291895

@mecfs

@longcovid

@disability @disabilityjustice @chronicillness
@spoonies

tomkindlon , to disability
@tomkindlon@disabled.social avatar

On , please remember that not all disabilities are visible.

@chronicillness
@spoonies
@disability


@mecfs
@longcovid

tomkindlon , to disability
@tomkindlon@disabled.social avatar

"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"

https://www.independent.co.uk/life-style/health-and-families/me-symptoms-wheelchair-dancing-b2450860.html

@mecfs






@chronicillness
@spoonies
@disability

tomkindlon , to disability
@tomkindlon@disabled.social avatar

"How to Be a Friend to a Friend Who's Sick"

I saw this book being recommended by somebody who cares for someone with ME.

I don't know anything more about it.

https://www.hachettebookgroup.com/titles/letty-cottin-pogrebin/how-to-be-a-friend-to-a-friend-whos-sick/9781610392846/?lens=publicaffairs

@fibromyalgia @chronicillness
@spoonies
@disability
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@mecfs

tomkindlon , to random
@tomkindlon@disabled.social avatar

"Chronic fatigue syndromes: real illnesses that people can recover from"

Some wishful thinking from the biopsychosocial school

Free fulltext:
https://www.tandfonline.com/doi/epdf/10.1080/02813432.2023.2235609

What was supposed to be the definitive trial, the £5M , found no increased recovery rates with CBT or GET using the protocol recovery criteria:
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

@mecfs

tomkindlon , to disability
@tomkindlon@disabled.social avatar

"Energy-Saving Self Care Cards" from Ricky Buchanan

https://www.energysavingselfcare.com/

The cards are not free but she does post some examples on the associated social media pages
e.g. https://www.facebook.com/energysavingselfcare/


@mecfs
@chronicillness
@spoonies
@disability
@longcovid

tomkindlon , to disability
@tomkindlon@disabled.social avatar

(US) "Discrimination on the Basis of Disability in Health and Human Programs or Activities"

https://www.federalregister.gov/documents/2023/09/14/2023-19149/discrimination-on-the-basis-of-disability-in-health-and-human-service-programs-or-activities

https://www.govinfo.gov/content/pkg/FR-2023-09-14/pdf/2023-19149.pdf

"an OCR investigation revealed a State denied a
prospective parent with & other disabilities the opportunity to become a foster parent"

@mecfs
@chronicillness
@spoonies
@disability





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