Tom Kindlon · @tomkindlon
778 followers · 2084 posts · Server disabled.socialMedically Documenting Disability in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) Cases (2019)
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 #MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS
Probably of use to some with #LongCovid @longcovid
#PwLC #PostCovidSyndrome #LC #postcovid
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #me #millionsmissing #cfsme #cfids #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
Tom Kindlon · @tomkindlon
778 followers · 2083 posts · Server disabled.social“What Does It Mean to Really, Truly Rest?” (December 2022)
https://www.self.com/story/what-does-rest-mean
#spoonie @spoonies #chronicillness @chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
#spoonie #chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
Tom Kindlon · @tomkindlon
777 followers · 2075 posts · Server disabled.social
UK Patient & Public Involvement (PPI) in ME/CFS research
An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration
From @CGATist
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @s4me
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
Tom Kindlon · @tomkindlon
777 followers · 2069 posts · Server disabled.social
"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il Every sample returned strengthens the results of our research."
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
#decodeme #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
Tom Kindlon · @tomkindlon
777 followers · 2067 posts · Server disabled.social#DecodeME
Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home
Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25000 DNA samples, incl. 5000 diagnosed with ME/ #CFS following #Covid19 infection
https://www.decodeme.org.uk/portal/
@mecfs #pwlc #LC
#MEcfs #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
1/
#decodeme #cfs #COVID19 #pwlc #lc #mecfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
Tom Kindlon · @tomkindlon
777 followers · 2065 posts · Server disabled.socialUK ME Association Advertising Standards: Chrysalis Effect cannot claim ME/CFS recovery!
"The ME Association had made a complaint to the Advertising Standards Authority (ASA) relating to recovery claims made by the Chrysalis Effect Ltd. on its website in regard to ME/CFS. The ASA issued its ruling yesterday, and upheld the complaint."
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me
Tom Kindlon · @tomkindlon
777 followers · 2063 posts · Server disabled.socialCanada - 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.
#sfc #Syndromedefatiguechronique #encephalomyelitemyalgique #em @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#sfc #syndromedefatiguechronique #encephalomyelitemyalgique #em #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids
Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social12/
“Other viruses, such as Epstein-Barr virus (#EBV), 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 #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME
#EBV #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids #seid #NeuroME
Tom Kindlon · @tomkindlon
773 followers · 2007 posts · Server disabled.social11/
“Modern genetic sampling techniques might be better able to detect low amounts of residual virus hiding out in cells and tissues, and help figure out which viruses are possibly involved, Hanson suggests”
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me
Tom Kindlon · @tomkindlon
768 followers · 1998 posts · Server disabled.social10/
“‘Approximately one-third of ME/CFS patients cannot trace their onset to a flu-like illness,’ explains Hanson. ‘Quite possibly, they could have had an asymptomatic case or a mild one long before the onset of the characteristic ME/CFS symptoms’”
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me
Tom Kindlon · @tomkindlon
767 followers · 1996 posts · Server disabled.social9/
“Up to half of enteroviral infections are asymptomatic, and people with ME/CFS who participate in research studies have likely been unwell for years. Enteroviruses are also very common, and often cause mild illness.”
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me
Tom Kindlon · @tomkindlon
765 followers · 1993 posts · Server disabled.social8/
“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
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids #seid #NeuroME
Tom Kindlon · @tomkindlon
756 followers · 1951 posts · Server disabled.socialME Research UK
#DecodeME 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:
https://www.meresearch.org.uk/initial-findings-from-the-decodeme-questionnaire
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
#decodeme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #me #mye #millionsmissing
Tom Kindlon · @tomkindlon
725 followers · 1830 posts · Server disabled.social2/
"Expanding on our findings, skeletal muscle biopsy samples obtained from a cohort of patients with ME/ #CFS 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
https://t.ly/QfIDZ
Science Alert:
This Protein Could be Responsible For The Exhaustion in #ChronicFatigueSyndrome
https://t.ly/bAr2R
#cfs #chronicfatiguesyndrome #mecfs #cfsme #myalgice #mye
Tom Kindlon · @tomkindlon
718 followers · 1814 posts · Server disabled.social7/
"Pacing is the single most important strategy that a lot of the people I’ve talked to have taken up, and that is a way of carefully sensing how much energy you actually have and keeping your activity levels below that threshold that might lead to a debilitating PEM [post-exertional malaise] crash."
@longcovid @mecfs #longcovid #postcovid #PostCovid19 #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE
#LongCovid #PostCovid #PostCovid19 #mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye
Tom Kindlon · @tomkindlon
718 followers · 1814 posts · Server disabled.social6/
"One of the people I spoke to said to me: 'Fatigue is profoundly anti-capitalistic.' It means that people cannot do the thing that we expect a lot of people to do, which is to push through, to keep at it, to show grit, and so on."
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE @longcovid @mecfs #PostCovid #LongCovid #pwlc #PostCovid19 #postcovidsyndrome #fatigue #fatigued #chronicfatigue #spoonie @spoonie
#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #PostCovid #LongCovid #pwlc #PostCovid19 #postcovidsyndrome #fatigue #fatigued #chronicfatigue #spoonie
Tom Kindlon · @tomkindlon
717 followers · 1810 posts · Server disabled.social5/
“All subjects demonstrated altered metabolic responses during a number of activities and exceeded their anaerobic threshold during at least one of the *everyday activities* tested.”
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE @mecfs
#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye
Tom Kindlon · @tomkindlon
717 followers · 1809 posts · Server disabled.social4/
“our finding that people with ME may exceed their anaerobic thresholds during everyday activity supports the potential for heart rate monitoring to be used as part of an energy management strategy which warrants further investigation.”
@mecfs
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME
#mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #me
Tom Kindlon · @tomkindlon
710 followers · 1791 posts · Server disabled.social2/
“All the people I know who have #LongCovid and ME and who are also health-care professionals tell me that they never learned about these conditions when they were going through their training and were completely shocked to see for themselves that a body could lack energy in these profound ways”
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #postcovid #MedMastodon #postcovid19 #postcovidsyndrome #pasc #pwlc
#LongCovid #mecfs #cfs #myalgice #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwme #mye #PostCovid #MedMastodon #PostCovid19 #postcovidsyndrome #PASC #pwlc
Tom Kindlon · @tomkindlon
710 followers · 1790 posts · Server disabled.social(From January 2023)
(4 minutes)
Jessica Maya, graduate student in the lab of Dr. Maureen Hanson, provides a video abstract of a recent publication on fatty acid oxidation in ME/CFS immune cells. Specifically, Maya is lead author of "Altered Fatty Acid Oxidation in Lymphocyte Populations of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome" published in the International Journal of Molecular Sciences.
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye