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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 · 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
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
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
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
708 followers · 1783 posts · Server disabled.social

2/

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

medicalxpress.com/news/2023-08

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

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

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
660 followers · 1489 posts · Server disabled.social

From May:

“Dr. Bateman's Research and Education Update
In her classic style, Dr. Bateman provides an accessible explanation of the recently concluded Collaborative Research Centers work, the state of ME/CFS research in the U.S., BHC's current and upcoming research, along with the strides being made in education at the top levels”

9 minutes

youtu.be/6Srwq7WhCrc

@mecfs

#mecfs #cfs #pwme #LongCovid #cfsme #cfids #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
645 followers · 1420 posts · Server disabled.social

4/

“A search for the most-cited papers on ME/CFS in the past five years turns up research on the condition’s prevalence, symptoms and presentation, and pathophysiology, often with comparisons showing a similarity to long Covid. None of these papers mention exercise, except as an older treatment which has been abandoned because of its tendency to provoke symptom flares and its association with a worsening of disease severity. The science has moved on”

@mecfs

#mecfs #pwme #cfs #cfids

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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