"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in #LongCovid and ME: How brain retraining therapies intersect with the biopsychosocial model"
"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."
Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.
He concludes: "Does anyone think that LP or its promoters are remotely serious?"
(pay wall)
"Parents of children with #longCovid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and... court cases and the threat of the child’s removal from the home."
"For some people, disabling symptoms lead to complete inability to work. In less extreme cases, “work instability,” which is a mismatch between patients’ functional abilities and the demands of their work, can threaten employment if not addressed."
"Children with #LC have a reduced VO2 peak […], abnormal cardiovascular efficiency (VO2/HR% pred), pathological VE/VCO slope […], and abnormally reduced slope of VO2 work" "48% of the LC patients had a suspicious phenotype for pulmonary hypertension."
New research from UK team:
Examining well-being and cognitive function in people with #longCovid and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study
"In this article, we review the evidence surrounding the post-acute sequelae of COVID-19 and the potential benefits of the use of heparin, with a special focus on the treatment of postural orthostatic tachycardia syndrome”
Dr Barnden and his team at Griffith University & the University of Queensland have recently published new findings showing increased neurochemical levels in the brains of people with ME/CFS & #longCOVID
I think diagnoses like #LC & #MECFS are important for those ill after an infection to help adapt to the impairments, not get worse from pushing/having to push, etc
We have made images of the charts from the analysis of PubMed publications data for #MECFS & #LongCovid available in our Google Drive, for use by anyone in advocacy 📊
"We have found a potential mechanism underlying #LongCOVID which could represent a biomarker – that is, a tell-tale signature of the condition. We hope that this could help to pave the way to develop therapies and give some patients a firm diagnosis”
“in this cohort, there was a significant risk participants under-reported, rather than over-reported, cognitive difficulty that was detected on NP [neuropsychological] testing”
Update I saw today from somebody in the #MECFS community. Please highlight widely.
"I inquired about the trial a couple of weeks ago, one of the coordinators mentioned that they only had 11 people participate so far, their goal is to recruit roughly 100. The location is very easy to get to via public transit, the trial location is set on the Upper East Side (a few blocks away from the 96th St. subway station). If you are in the New York Metro Area, please consider participating."
#COVID Isn't Going Anywhere. Masking Up Could Save My Life
Alice Wong writes about trying to keep safe in the pandemic as a high-risk person. "The normalization of repeated infections, preventable deaths, & anti-science propaganda is tearing the fabric of society, with the most marginalized hanging by a thread”
#LongCOVID & ME/CFS have overlapping symptoms, yet many studies overlook the proportion of individuals with long #COVID who meet ME/ #CFS criteria. Read more about current estimates of the proportion of individuals with long #COVID19 who meet #MECFS criteria:
“Our analysis suggested an improper crosstalk between the cellular and humoral adaptive immunity in #LC, which can lead to immune dysregulation, inflammation and clinical symptoms associated with this debilitating condition”
An essay inspired by Giorgia Lupi's recent high profile article in the NY Times, also detailing the author's experiences. "It is September, 2022, the beginning of the waiting rooms. I'm glad I don't know what's coming. The very first doctor that I see says the pain I feel is anxiety”