Private
tomkindlon,
@tomkindlon@disabled.social avatar

3/
Response to this on the bird site:
"The head psych I had to see at my local hospital for CBT & GET had never ever read any scientific papers about ME outside the field of psychology. I found this out as I was asking how his statements fitted with the science I had read. GET ended up disabling me permanently (contd.)"

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

4/

"They didn’t understand PEM. I was told if I didn’t try GET it meant I didn’t really want to get better. I was told it was impossible for exercise to harm. They told me how GET helped patients much sicker than me with MS, stroke & Parkinsons. If they could do it, why couldn’t you."

@mecfs

kikkih, (edited ) to mecfs

ME/CFS explained for carers.
«ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems.» «It is not something that they did wrong or a psychological illness.»
https://www.emerge.org.au/me-cfs-explained-for-carers/

@mecfs

From: @tomkindlon
https://disabled.social/@tomkindlon@disabled.social/110889529519083158

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Results from the NIH's intramural study of : WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in ME/CFS

https://www.pnas.org/doi/10.1073/pnas.2302738120

@mecfs

tomkindlon,
@tomkindlon@disabled.social avatar

2/

“Following chronic fatigue mechanisms to the source: WASF3 & mitochondrial respiration”

https://medicalxpress.com/news/2023-08-chronic-fatigue-mechanisms-source-wasf3.html

Possibly based on a press release, this explains, step by step, what these researchers did. A lot of terms are new to me but I understand the logic

@mecfs

Private
tomkindlon,
@tomkindlon@disabled.social avatar

2/

“(Contd) And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond.“

@mecfs

HistoPol, (edited ) to random
@HistoPol@mastodon.social avatar

(1/n)🧵

As the movement of once again rears its head and gears up for the next elections, it is much better prepared than in 2016 and the of 2022.

A racist utterance of a military 🪖 leader made me remember a thread I had published on the Birdsite in Sept. 2022.
It focused on the strategic use of by the movement.
As it will happen again, I am republishing...

https://washingtonspectator.org/maga-military/

HistoPol,
@HistoPol@mastodon.social avatar

(13/n)

"...in U.S. history, $1.6 billion, has been made to , co-chair of the and one of the ’s [Center for National Policy] most prominent members.
Leo is a Catholic. The donor, a secretive businessman named Barre , is Jewish.
👉The multi-ethnic make-up of the veterans running for Congress in November,as well their...

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

From: Decode ME Study

Some participants may be recontacted over the next week, as we are now inviting more to donate DNA – read more about this update in our blog post here:

https://rb.gy/y2anp

There is still time to sign up to : https://rb.gy/o10l2

@mecfs

IrishMECFSAssociation, to mecfs

This is one of five free talks and question-and-answer sessions the Irish ME/CFS Association organised around Ireland in May 2023.

Thanks to our volunteers and supporters who make our activities possible. 👍

https://www.facebook.com/watch/?v=985968992760580
(you don't need a Facebook account)

@mecfs

cdarwin, to random
@cdarwin@c.im avatar

To Understand the Upcoming Republican Primary, Follow the Dark Money

Chris Jankowski, CEO of the pro- group Never Back Down, documented as the “settlor” — effectively, the creator — of the , a massive pool of cash is using to finance conservative advocacy groups.

In 2021, the trust received $1.6 from the sale of Chicago businessman ’s surge-protector empire, constituting the largest known donation in history and leaving Leo in control of an unprecedented political advocacy fund.

The role Jankowski played in developing the Marble Freedom Trust has not previously been reported, though he has for years served as a consultant for Leo’s dark money , which played a central role in flipping control of the and building its 6–3 conservative supermajority.

https://jacobin.com/2023/04/leo-leonard-desantis-super-pac-funding

DanielMenjivar, to sewing
@DanielMenjivar@mastodon.social avatar

No for me today; makes me sad. I have to travel two hours for a one hour physiotherapy appointment, then two hours back home. When I get back, I’ll be sore, exhausted and will need to take a long nap to recover before dinner. @sewing

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
IrishMECFSAssociation, to mecfs

One week to go to the start of this series of events

in case in range: 5 Talks and Q&As by UK ME expert consultant Dr William Weir in Cork/Dublin/Galway/Limerick/Sligo in May. Followed by tea/coffee/water & biscuits. All free. All welcome.Please tell others.More info at
https://forums.phoenixrising.me/blog-articles/dr-weirs-5-free-irish-me-cfs-talks-in-cork-dublin-galway-limerick-sligo-may-2023.3292/

@mecfs @cfs

tomkindlon, to longcovid
@tomkindlon@disabled.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New US research:
"Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome"

Free
https://sciencedirect.com/science/article/pii/S2666354623000418

"Relying on data from two independent cohorts of ME/CFS and control study participants, one at rest and one undergoing an exercise challenge"

@mecfs @cfs

IrishMECFSAssociation, (edited ) to mecfs

May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retooting this video. This 2017 TED talk features @jenbrea.

https://youtu.be/Fb3yp4uJhq0

@mecfs @cfs

Day #1

IrishMECFSAssociation, (edited ) to mecfs

🧵
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retooting this image.

@mecfs @cfs

IrishMECFSAssociation, (edited )

2/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retooting this image.

Day #2

@mecfs @cfs

IrishMECFSAssociation,

3/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by re-tooting this image.

Day #3

@mecfs @cfs

IrishMECFSAssociation, to mecfs

Two weeks to go. We would very much appreciate if some people supported us either by holding tea parties with others or simply on their own.

Donations can be given here: https://www.idonate.ie/fundraiser/BlueSunday2023

You can always set up your own separate fundraising page for us https://www.idonate.ie/cause/3640_irish-me-cfs-association.html if you don't want to use the existing one.

@mecfs @cfs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New from the NIH intramural ME/CFS study:

A Mixed Methods System for the Assessment of Post Exertional Malaise in /
(I corrected a typo)

Free:
https://www.medrxiv.org/content/10.1101/2023.04.24.23288821v1

"Measurement of PEM can be improved by using a quantitative-qualitative mixed model approach."

@mecfs @cfs

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