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Tom Kindlon · @tomkindlon
778 followers · 2081 posts · Server disabled.social
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From the Solve ME/CFS Initiative:

Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with or .

Click to read: solvecfs.org/wp-content/upload

@mecfs

#mecfs #LongCovid #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfsme #cfids #seid #NeuroME

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social

12/

“Other viruses, such as Epstein-Barr virus (), are also thought to trigger ME/CFS, although the mechanisms are equally complex.

Like other human herpes viruses, EBV can hide out in the body, evading the immune system for years until stress or some other illness reactivates the virus.”

@mecfs

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

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
765 followers · 1993 posts · Server disabled.social

8/

“What's more, by the time a person develops ME/CFS and receives a formal diagnosis (if they do), they or their treating doctor might not make the connection between their illness and a previous viral infection.”

@mecfs

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

Last updated 1 year ago
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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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Tom Kindlon · @tomkindlon
752 followers · 1922 posts · Server disabled.social
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(Northern Ireland)
Thanks to Laura for sharing how ME has had a huge impact on her life & for her family & the donors for raising much-needed money for research via @meresearchuk

impartialreporter.com/news/237

Fundraising page:
justgiving.com/page/damien-oka

"Multi-system chronic diseases like ME are not too mysterious or complicated to solve. We just haven’t devoted enough resources into solving them"

@mecfs

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #NeuroME

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
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
699 followers · 1683 posts · Server disabled.social

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

#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #me #millionsmissing #cfsme #cfids #seid #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
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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Tom Kindlon · @tomkindlon
575 followers · 979 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME #saltlakecity #utah

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
131 followers · 906 posts · Server mastodon.ie
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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
forums.phoenixrising.me/blog-a

@mecfs @cfs

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

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
129 followers · 903 posts · Server mastodon.ie
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3/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by re-tooting this image.

Day #3

@mecfs @cfs

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

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
574 followers · 970 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #PostCovid19 #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME #me #mye #millionsmissing #LongHaulers #LongCovid #covidlonghaulers #pwlc #PostCovid #lc

Last updated 1 year ago
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