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#myalgicencephalomyelitis

37 posts14 participants2 posts today
Public
Tom Kindlon

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots

Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"
Public *
Tom Kindlon

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

frontiersin.org/journals/neuro

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI

Frontiers in Neuroscience Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al. "These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond efficiently to physical exertion, potentially driving exacerbation of symptoms seen in PEM."
Public
Tom Kindlon

More on the scrapped update to the Cochrane review of exercise therapy for ME/CFS

s4me.info/threads/2025-the-201

s4me.info/threads/2025-the-201

drive.google.com/file/d/1bJzQ7

pacific.qualtrics.com/jfe/form

s4me.info/threads/survey-on-th

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Letter to the ME/CFS community and consultation Mary Dimmock and Todd Davenport also wrote a letter to the ME/CFS community. "When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment." They describe the extensive work of the author group, and their shock at the announcement, adding "This risk of harm is compounded by Cochrane’s decision to revise the date of Larun et al from October 2019 (2) to December 2024". They have made the protocol public and set up a public consultation survey. Letters | Thread | Protocol | Survey | Thread
Replied in thread
Public
Donia 🖖♾️ ♿️

@broadwaybabyto Ironically, I think I may be coming down w/ Covid on #longcovidawarenessday for the FIRST TIME💔

I’m severely disabled w/ #MyalgicEncephalomyelitis & have been very diligent about masking & not going places these past 5yrs… but I had 2 dr appts this week (I still can’t believe masking isn’t mandatory at all health facilities!) & started having painful symptoms. I’m worried bc I live alone + don’t want my toothless, asthmatic cat who is the love of my life to get Covid😔

Adorable black cat looking up at the human holding her while being cradled in the crook of an elbow
Continued thread
Public
ahimsa

For examples of scientific harm done to ME/CFS patients see this video by @brokenbattery

It lists many issues, including the CDC renaming the illness in 1988 and the PACE trial, a flawed research study that has not yet been retracted:

youtube.com/watch?v=RiwX9Y0Nbi

"George Monbiot describes the treatment of Myalgic Encephalomyelitis as 'the greatest medical scandal of the 21st century' …'"

Transcript:

medium.com/@abrokenbattery/me-

@mecfs

YouTubeME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)By Broken Battery
#MEcfs#PwME#PACEtrial
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