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I think the prominence given to OI in the article is justified because it seems to be a major factor in problems very severe pwME face with enteral feeding, and not coping with lying at the angle recommended by guidelines. For me, OI is a significant problem and is more disabling than...

I am put off by the title. Why do scientists try to be creative writers? The degree of confidence of assertions in the abstract also put me off. Doesn't come across as serious science.

Dr Bateman is keen on using hours upright with feet on floor (walking, standing, sitting on upright chair) as part of measuring severity and changes over time. I'll see if I can find a link.

I'm not sure that's a fair comparison. Miranda has been in several very popular TV series. The British media treats her as a major celebrity as a result, and if I remember correctly she has been a Strictly 'superfan' for years. Even without her book to sell her publicist would ensure she had...

Thank you @hibiscuswahine for stating that so clearly. It's valuable to have your observations with your medical background.

That was quick! A very useful summary, thank you. It's interesting to see just how badly this trial failed in all its objectives - recruitment, retention, outcomes, cost effectiveness. I was going to say what a humungus waste of a million pounds, but perhaps it was worth that money to finally...

Maybe seek advice from a dietician.

That's a good question, @Yann04. Even as a borderline moderate/severe person, I can't do what most people would call 'exercise'. I also voted no. Perhaps a more refined poll would tell us more, including different severity levels. Or perhaps it's really talking about exertion, so for me the...

OMF has branches and/or funds several researchers in different countries, not just the Stanford group led by Ron Davis.

The PACE trial also called all the active arms versions of pacing. GET was also called Simple incremental pacing and CBT was called Complex incremental pacing. Edited to correct the above See the Manual for therapists for CBT, pages 12, 13 What I don't understand with this trial design is...

This cost over a million pounds, and they recruited less than half their target number of participants. The Activity Management is GET.

Some links to previous threads: Jul 2019 Protocol | Thread Cost-Effectiveness of Online CBT for Children with CFS/ME Compared to Online Activity Management: FITNET-NHS Trial Findings, 2023, Crawley Poster presentation | Thread

Moderator note Please be mindful of these rules, and avoid personal insults and speculation about any identifiable individual's health.

I glanced through to try to find out how participants were selected. It seems they contacted some of their existing hEDS patients to invite them and the patients selected their relatives to be controls?? Surely that brings in huge biases. The hEDS patients would only have been attending the...

Couldn't you test it by covering each eye in turn and testing different light levels?

I think my light sensitivity may be one sided when I have a migraine. Worse on the head pain side, but there on both sides.

I hope the trying out medications means proper clinical trials, not just random prescribing.

I also have a question. I admit I haven't been able to keep up with the research, so it may have been answered. I gather Pretorius was studying microclots in other diseases before Covid came along, is that correct? If so, what were the clinical and biomedical findings in these other diseases...

I can't remember. I just remember being caught by surprise by how bad it felt the next day.

I tried the handgrip test multiple times one day a few years ago. The next day my arm muscles were much more painful than usual, but I wasn't crashed.