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Tom Kindlon · @tomkindlon
778 followers · 2084 posts · Server disabled.social

Medically Documenting Disability in / (ME/CFS) Cases (2019)

shorturl.at/hERST

Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases

@mecfs

Probably of use to some with @longcovid

#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #me #millionsmissing #cfsme #cfids #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
778 followers · 2083 posts · Server disabled.social

#spoonie #chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid

Last updated 1 year ago
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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
777 followers · 2063 posts · Server disabled.social

Canada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.

shorturl.at/dgjvK

@mecfs

#sfc #syndromedefatiguechronique #encephalomyelitemyalgique #em #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
774 followers · 2022 posts · Server disabled.social

6/
"I constantly wonder whether I could have avoided disability if I had known to stop and rest when I first became ill. I hope that every new ME/CFS patient will avoid pushing through, as I tried to do, and instead will rest, discern their energy envelope as well as they can while living with a constantly changing illness, and avoid physical, emotional, and mental stressors as much as possible."

@mecfs

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

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
740 followers · 1863 posts · Server disabled.social
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #LongCovid #mecfs #PostCovid #ot #otalk #occupationaltherapist #cfs #pwme #myalgice #cfsme #pwlc #postcovidsyndrome #PostCovid19 #lc #covidlonghaulers #LongHaulers

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
740 followers · 1859 posts · Server disabled.social
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New Zealand press release:

ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS

voxy.co.nz/health/5/420846

"in practice ANZMES has found that many with ME/CFS are denied help, despite the obvious need." ☹️

@mecfs

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

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
739 followers · 1857 posts · Server disabled.social
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"NIH Researchers Find New Mitochondrial Abnormality in ME/CFS"

This article on this fascinating and exciting study is not short. But Cort does include have a “gist” section (i.e. layperson’s summary) which is shorter.

Lots of aspects to this research so does take longer to explain than most studies

healthrising.org/blog/2023/08/

@mecfs

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

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 · 1830 posts · Server disabled.social

2/

"Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/ showed increased WASF3 protein levels and aberrant ER stress activation."

These give simpler explanations:

Science:
A protein that disrupt cell's energy centers may be a culprit in chronic fatigue syndrome
t.ly/QfIDZ

Science Alert:
This Protein Could be Responsible For The Exhaustion in
t.ly/bAr2R

@mecfs

#cfs #chronicfatiguesyndrome #mecfs #cfsme #myalgice #mye

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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