Search results

@Janna Moen PhD

I was really quite hopeful for the various trials this year - given that virtually no drugs had been trialed for ME at any particular scale and that recovery from these diseases is possible, I thought there was a decent chance that throwing a lot of somewhat uninformed darts might lead to...

That 47% on observational trials, around $500 million, was by far RECOVER's big mistake. The NIH essentially decided to give half of RECOVER's funding to an extraordinarily large observational trial with around 40,000 people. They collected so much data and collected it so badly that people in...

Really fair - I deteriorated because of a doctor like that. A year in, I listened to a podcast with a doctor who claimed that hyperbaric oxygen therapy had cured every Long Covid patient he'd seen. I was 23 and desperate to get better, so I turned off all my critical faculties. I travelled from...

I've ended up going to a couple of private Long Covid doctors this past year after doing everything via the NHS for the first two years of the illness, and sadly I do think private treatments have a fair bit to offer Long Covid patients - they just don't have anything to offer those whose Long...

I was hoping you’d chime in - I have 0 scientific background so have never known what to make of microclots. Always good to see what an expert makes of the evidence :)

So Garner and Carson are essentially using the microclots literature as a way to rubbish the biomedical literature around Long Covid writ large. Very telling that they write "Furthermore, there is a body of research in neuroscience, psychology, and evolution that explains the presence of PCC in...

Abstract: People with the post-COVID-19 condition suffer symptoms that persist beyond 12 weeks following acute COVID-19 infection. Fatigue, shortness of breath, and cognitive dysfunction (“brain fog”) are common. Scientists, clinicians, and patients debate the pathophysiology. One...

Two possibilities: a) One of the Republicans who attended the HELP hearing provided input here. I can’t remember which Republicans were at the hearing, but at least one of them has a close family member with Long Covid. b) They lifted the paragraph on RECOVER from on of the Stat News articles...

It's confusing - because clearly they see RECOVER as another stick to beat the NIH with, but their actual criticisms of RECOVER are very accurate as you say. Very difficult to work out what this means for Long Covid within the NIH. But the call for reorganisation is clearly bad news for the NIH.

I largely agree with their critique of RECOVER. Of its billion dollars, RECOVER spent 47% of it, roughly $500 million, on an extraordinarily large observational trial with around 40,0000 people. They collected so much epidemiological data - and collected it so badly - that it's all but unusable...

In a small crash so I'm afraid I can't help out a lot more today - but I think I'd focus on providing as many authoritative sources as possible, so includes Times articles about Maeve, Monbiot's article etc.

This is one idea about how to structure it: Hi Divya! Thanks for reaching out to me. There's a lot to say about this - ME/CFS patients have been seriously mistreated for decades. This mistreatment is the result of ME/CFS being viewed until recently as a largely psychological illness. George...

c) is certainly unethical. In terms of a) - the problem is that it's not a study of recovery stories, it's a study of a highly unrepresentative and biased sample of recovery stories that she seems to believe reflects recovery stories writ large. Also - the study spills over into a different...

I have sent these photos to Dr Cefai. Going ahead with research that is not only so obviously flawed and biased but is also riddled with conflicts of interest is… not good. If she’s a serious and competent academic, she will change course. If she doesn’t, she’ll have her name attached to a very...

As far as I can tell, she’s leading it. She’s a lecturer at Goldsmith’s.

I"d also be fascinated to know more about "the amazing advisory group of medical doctors and researchers who worked their butts off to bring this project to life." When I wrote the email to her, I noticed that the language she used in the information sheet was almost identical to language used...

I sent a very polite email earlier this week to Dr Cefai laying out my concerns with the study - that she was studying a self-selecting and tiny group of patients that was almost certain to validate everything she seems to believe about the illness based on the information sheet, meaning that...

I find statistics like this slightly maddening - far more important than knowing how many people have experienced any symptoms 3 months after a covid infection is knowing how many people are debilitated 3 months after a covid infection. The problem is that you end up with a real conflict - you...

Hadn't thought of that - and completely true, a study like this must be a huge boon to Raelan Agle and her ilk