"The lived experiences of people with #LC, in relation to their condition and their experiences of healthcare services have provided a primary source of evidence”
"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"
"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."
"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?"
BBC: #LongCovid course is 'exploiting people', says ex-GB rower
Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.
Professor and LC-researcher Danny Altmann says such behavioural approaches disregards the "mass" of measurable underlying damage in patients. Neuroscientist Dr Camilla Nord says the course is straying very far from neuroscience and calls it an abuse of scientific terms. The story is presented both as an article https://www.bbc.com/news/health-69040592 and a 38 min radio programme titled "Long Covid: Mind Over Matter?" https://www.bbc.co.uk/sounds/play/m001zg5q
(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”
Needs a clean but I'm told it works. Peering inside, no battery leakage and caps look okay - though there's lots of dust. Slight cracks on front cover but otherwise intact.
Prusty Lab, the laboratory and team of ME/CFS researcher Bhupesh Prusty has a new website. Prusty is currently Professor of Science at Rīga Stradiņš University in Latvia.
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
Hand grip strength, a measure of muscle fatigue, has previously been explored in ME/CFS. A recent study conducted by researchers from Charité – Berlin University of Medicine extended this research to #longCOVID
(US) Solve ME/CFS Initiative has created an automated tool (meant for folks in the USA) https://p2a.co/tE8DZk8 that will contact your Member of Congress & ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs).