Extract from comments by Dr Binita Kane in this popular Guardian article today:
"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"
"The results revealed significant differences in the neurophysiological parameters of P300 & beta band rhythms in subjects affected by cognitive fog, and these alterations persist even 8 months after recovery from #Covid19"
"In our unmatched comparison, we observed that, following #COVID19, POTS and ME/CFS yielded higher rates than after negative testing. In absolute terms, we observed #POTS & #MECFS diagnoses to have a similar disease burden as DM [diabetes]"
"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"
UK Advertising Standards have upheld complaints against Gupta and LP founder Parker for making unfounded claims, yet they continue to dupe media and clinicians into supporting their programs.
"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.
Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
(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”
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.