@tomkindlon@disabled.social
@tomkindlon@disabled.social avatar

tomkindlon

@[email protected]

95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.

With ME/CFS 34 years, housebound 29 years.

Health has deteriorated post Covid (March 2022).

Irish ME/CFS Association* trustee 26 years.

26 publications in peer-reviewed journals.

MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon

#ChronicFatigueSyndrome #MECFS #PwME #fedi22

*[email protected]

This profile is from a federated server and may be incomplete. Browse more on the original instance.

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

On my way to the (on ) protest outside Leinster House (which houses the Irish parliament). These proposals if implemented would make life a lot more difficult for many with and disabling illnesses. 😡

@disabilities @disability @disabilityjustice @mecfs @chronicillness @spoonie

tomkindlon,
@tomkindlon@disabled.social avatar

@CAETFOOD We we’re encouraged to wear red. @disabilities @disability @disabilityjustice @mecfs @chronicillness @spoonie

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 disabilityjustice
@tomkindlon@disabled.social avatar

UK Government Response to the Work Capability Assessment: Activities & Descriptors Consultation

The report follows the public consultation & details planned changes to the rules & assessments for existing & new claimants

https://shorturl.at/csAW2

Some people on 🐦 found it less bad than expected

@disability @disabilityjustice @spoonies @chronicillness

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

(UK)
A worrying development for many with disabilities and disabling illnesses

“Disabled people must work from home to do ‘their duty’, says UK minister

https://www.theguardian.com/uk-news/2023/nov/21/disabled-people-work-from-home-laura-trott-benefits

#disabled #chronicillness #disabilities @disability @disabilityjustice @chronicillness @spoonies @mecfs @longcovid #mecfs

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

I'm considering going to this protest, "“Scrap The Green Paper” coalition calls on the Department of Social Protection to "Scrap the Green Paper" on Disability Reforms." outside Leinster House on Thur, Dec 7.

Main thing that might stop me is my health

https://beacons.ai/scrapthegreenpaper

@disability @disabilityjustice @spoonies @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

2/
While not definite,I'm still hoping to go to this.

I haven't located anything red yet to wear.I think I’ll wear a blue ribbon to highlight I have ME
& also where my invisible disability lanyard around my neck (though I will either be in a wheelchair or mobility scooter).I might bring some more blue ribbons if I remember in case anyone wants one on the day.Do come up & say hi if you see me #ScrapTheGreenPaper
@disability @disabilityjustice @spoonies @mecfs

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
@longcovid
@mecfs

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

(Ireland)
The Proof of Impairment Working Group of Independent Living Movement Ireland (ILMI) are running a survey on disabled parking permits which some people with disabilities and disabling might be interested in completing, as I have done.

A link was included in their latest e-bulletin:
[https://mailchi.mp/ad1d91ba6b75/ilmi-ebulletin-17th-of-november-2023?e=UNIQID]

@chronicillness
@spoonies
@disability
@disabilityjustice

tomkindlon, to disability
@tomkindlon@disabled.social avatar

The author refers to using the spoon theory so presumably has some energy limiting chronic illness (which is unspecified)

https://www.tumblr.com/i-the-spoonie/724820869881495552

@fibromyalgia @chronicillness
@spoonies
@disability

tomkindlon, to disability
@tomkindlon@disabled.social avatar

Ep 148

Let's talk dynamic disability.

Vlad Vexler:
From: https://twitter.com/vladvexler/status/1453428887548047367

If people know of any of Vlad's other social media channels where he talks about ME, etc., please let me know.

I know he has a very popular YouTube channel on Russian politics but that's not particularly relevant for those who might be interested in this video.

@mecfs @longcovid @chronicillness
@spoonies
@disability

video/mp4

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 #PACEtrial, 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

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

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

Disability At Home:
"This website documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible..."

https://www.disabilityathome.org/

@chronicillness
@spoonies
@disability @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

ADAPTATIONS

https://www.disabilityathome.org/adaptations/

@chronicillness @spoonies @disability @mecfs

tomkindlon, to disability
@tomkindlon@disabled.social avatar

🧵
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"

https://themighty.com/topic/disability/what-to-know-about-getting-a-disability-parking-placard/

@chronicillness
@spoonies
@disability
@mecfs
@longcovid















1/

tomkindlon,
@tomkindlon@disabled.social avatar

2/

"I see it almost daily. In the health communities I’m in, someone will say 'I need to get a disabled placard but I’m afraid to.' I see the images of awful notes left on the car of someone who uses a placard. You can find examples here, here, here and here. I could keep going"

@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

3/

"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."

@chronicillness @spoonies @disability @mecfs @longcovid



tomkindlon,
@tomkindlon@disabled.social avatar

4/

"But I was wrong. I was and am disabled. I got the [parking] placard and ended up using it every day because it was a life saver. I wished I had gotten it sooner when I needed it, long before I finally talked to my doctor about it."


@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

5/

"I imagine there are a variety of reasons people leave notes on cars or make discriminatory comments to the disabled...they may assume all disabilities are visible and that only individuals who require a mobility aid qualify as disabled."

#Hiddendisability #Hiddendisabilities
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

6/
"When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop."

#Butyoudontlooksick #Invisibledisability #Spoonie
@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

7/

"1. Most and are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate."

@chronicillness @spoonies @disability @mecfs @longcovid


tomkindlon,
@tomkindlon@disabled.social avatar

8/

"2. Police officers, parking attendants, etc. can ask someone to show them the permit people are required to carry when they use a placard. Other people do not need to enact their own form of vigilante justice. There is a system in place to make sure that those who use the placards are permitted to use them."

@chronicillness @spoonies @disability @mecfs @longcovid


tomkindlon,
@tomkindlon@disabled.social avatar

9/

"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability

@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

10/

"Those with face hurdles every day the able-bodied cannot fathom. If you are concerned that the are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."


@chronicillness @spoonies @disability @mecfs @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





tomkindlon, to disability
@tomkindlon@disabled.social avatar

It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments in lots of countries

This document is from the US but the questions could give ideas about areas people in other countries could write about when writing such a report

https://www.ssa.gov/forms/ssa-3380.pdf

#chronicillness @chronicillness #Spoonies @spoonies #Disabled @disability @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid
1/

tomkindlon, to disability
@tomkindlon@disabled.social avatar

🧵
I thought this was very good

"Riding the Roller Coaster of Fluctuating Disability"

https://themighty.com/topic/disability/roller-coaster-of-fluctuating-disability/

"When people think about or , they tend to do so in a very black and white sort of way: Either you are completely , or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple"

@chronicillness @spoonies @disability @mecfs @longcovid

1/

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