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Tom Kindlon · @tomkindlon
756 followers · 1951 posts · Server disabled.social

ME Research UK

is the largest ME/CFS study in the world & is ongoing but a paper has recently been published reporting initial findings from the questionnaire relating to the characteristics of the people who have taken part so far.

Read more here:
meresearch.org.uk/initial-find

@mecfs

#decodeme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #me #mye #millionsmissing

Last updated 1 year ago
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pepperminta · @pepperminta
1 followers · 2 posts · Server rollenspiel.social

Only a couple of days till the national championship! The first ever event i will attend with our team :) so exciting

#fabtcg #meeps

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
745 followers · 1891 posts · Server disabled.social

4/

"(Contd.)—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility.”

@mecfs @longcovid

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #covidlonghaulers #LongHaulers

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
739 followers · 1852 posts · Server disabled.social
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Just changed profile: now 29 years housebound with (more than half my life) (ill 34.5 years)☹️

We need more public & private money to make research progress soon, the quicker the better: my life & the lives of millions of others are passing by.

Here's a list of ME/CFS research funds:

phoenixrising.me/resources-2/r

Here's my story as told in the Irish Independent in 2015:

independent.ie/life/health-wel

@mecfs

#SevereME #MyalgicEncephalomyelitis #mecfs #cfs #pwme #myalgice #chronicfatiguesyndrome #meeps

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
735 followers · 1848 posts · Server disabled.social
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From Simmaron Research: Read Simmaron's Summer review:

static1.squarespace.com/static

We are resolving key roadblocks to treatments: lack of animal models & poorly defined subsets. We are blowing the door open for treatment discovery and for pharma investment in & . Read more and retoot.

@mecfs

#me #LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
732 followers · 1844 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
732 followers · 1844 posts · Server disabled.social
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29/

"...people with other chronic diseases, such as for example diabetes or multiple sclerosis, do not have the same problems of disbelief and lack of legitimisation experienced by people with ME/CFS. All people with chronic diseases need, and should be entitled to, social support, but few experience the same difficulty accessing it as people with ME/CFS."

@mecfs

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
725 followers · 1824 posts · Server disabled.social
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Austria:
"Artists severely affected by have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna

Link that should translate webpage into whatever language you want:
www-kuenstlerhaus-at.translate

@mecfs



@severeme

#mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #SevereME #severemecfs #severecfs #verysevereme

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
725 followers · 1824 posts · Server disabled.social

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

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #gradedexercisetherapy #cognitivebehaviouraltherapy #cbt

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
725 followers · 1822 posts · Server disabled.social
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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

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #gradedexercisetherapy #cognitivebehaviouraltherapy #cbt

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
707 followers · 1773 posts · Server disabled.social

2/

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.

@mecfs @longcovid

#myalgice #meeps #cfsme #LongCovid #NeuroME

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
627 followers · 1312 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #cfsme #meeps #cfids #seid #NeuroME #me #mye

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
593 followers · 1259 posts · Server disabled.social
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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:

rb.gy/y2anp

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

@mecfs

#decodeme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #cfsme #meeps #cfids #seid #NeuroME #me #mye #millionsmissing

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
147 followers · 1136 posts · Server mastodon.ie
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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. 👍

facebook.com/watch/?v=98596899
(you don't need a Facebook account)

@mecfs

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #cfsme #meeps #cfids #seid #NeuroME #me #mye #millionsmissing

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
588 followers · 1217 posts · Server disabled.social
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New from Australia:

A Unique Circular RNA Expression Pattern in the Peripheral Blood of /#ChronicFatigueSyndrome Patients

sciencedirect.com/science/arti

"14 circRNAs were highly expressed in ME/CFS patients but absent in controls throughout the exercise study"

@mecfs

#MyalgicEncephalomyelitis #mecfs #cfs #myalgice #pwme #cfsme #meeps #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
585 followers · 1131 posts · Server disabled.social

Welcome to the Emerge Australia Research Digest. This edition features a study looking at transcriptomic changes in those with ME/#CFS following an exercise challenge and examines ME/CFS symptom differences in Black and White individuals. This edition also highlights the impact of in Australia and the Conversation hour discusses Long COVID, in the context of how it's changing the way we respond to

emerge.org.au/research-digest-

@mecfs @cfs @longcovid

#LongCovid #mecfs #myalgice #pwme #cfsme #meeps

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
585 followers · 1129 posts · Server disabled.social

2/

Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.

@mecfs @cfs

#myalgice #meeps #cfsme #LongCovid #NeuroME

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
584 followers · 1124 posts · Server disabled.social
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Alcohol intolerance & /#chronicfatiguesyndrome

Free fulltext
wjgnet.com/2218-6212/full/v9/i

"those with are more likely to experience alcohol intolerance [&] those with this symptom have more overall symptoms than those without alcohol intolerance"

@mecfs @cfs

#MyalgicEncephalomyelitis #mecfs #cfs #myalgice #pwme #cfsme #meeps #cfids #seid #NeuroME #me #mye

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1039 posts · Server mastodon.ie
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31/

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

You can help by retooting this image.

Day 31

@mecfs @cfs

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #cfsme #meeps

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1038 posts · Server mastodon.ie
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30/

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

You can help by retooting this image.

Day 30

@mecfs @cfs

#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #cfsme #meeps

Last updated 1 year ago
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