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#myalgicencephalomyelitis

8 posts6 participants1 post today
Public
ahimsa

"The History of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign"

thesicktimes.org/2025/03/31/th

This campaign was inspired by George Monbiot who called the history of mistreatment of people with Myalgic Encephalomyelitis (ME) the “greatest medical scandal of the 21st century”

Note: Most patients in the USA get a diagnosis of ME/CFS, not ME. CDC info here:

cdc.gov/me-cfs/about/index.htm

As Monbiot wrote, ME still has no approved treatments decades after being first recognized. This lack of scientific progress is too often explained as patients unwilling to get better or an illness too complicated to understand. But in reality, an intentional campaign has obstructed scientific breakthroughs and cures and stigmatized the illness. As a result, medical professionals don’t just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever.
#MEcfs#MyalgicEncephalomyelitis#ChronicIllness
Public
Tom Kindlon

Recording with:

- Dr David Joffe: an overview of biological basis of Long COVID

- Dr David Tuller: on basis of psycho-behavioural therapy focusing on the PACE trial & a major #LongCOVID trial"

youtu.be/V9f_kjlz6Ho

From latest Science for ME update

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial."
Public
Tom Kindlon

Today is 8-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial

Free: researchgate.net/publication/3

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

Screenshot of abstract and title
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"
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