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I'm influenced by my own experience of [what was labelled] PVFS in the aftermath of viral meningitis. I was told I "wouldn't feel like myself" for 6 months, but it was more like 14 months. For the following 5 months I slowly introduced the less vigorous end of vigorous exercise and it seemed...

OK. Are there other conditions that your proposed mechanism would predict would be more common among relatives of pwME? I'm replying here to your post above only so that we understand each other better, but this is a peripheral point and I don't want it to distract from the discussion of your...

Thank you so much, @Jonathan Edwards , Jo Cambridge and Jackie Cliff for all your thinking and work on this paper. Please pass on our thanks. I hope you gave them the good biscuits when they came to your house to work on it. I really appreciate all the time and energy you have put into trying...

And here's another one: Post–COVID-19 Condition Fatigue Outcomes Among Danish Residents Shattered now. Rest time.

This might be the one I was thinking of: Estimated Global Proportions of Individuals With Persistent Fatigue, Cognitive, and Respiratory Symptom Clusters Following Symptomatic COVID-19 in 2020 and 2021. JAMA. 2022 Oct 25;328(16):1604-1615. That was for all symptom clusters. They also looked at...

Thank you all so much for the ideas and links - keep them coming! The tantalizing thing is that it will just be a detail - a line or one of many figures - and I'm fairly sure I've come across at least one and thought to myself, "Yep, just like Dubbo". I'll post here if I find anything helpful.

I'm not interested in people who were in ICU and have organ damage or who only have loss of taste or smell or breathing issues. I'm interested in people who have something that looks like ME/CFS, so with fatigue, PEM, exercise intolerance, cognitive dysfunction etc as prominent symptoms.

I hope someone will be able to point me to studies that have documented the resolution of (ME/CFS-like) long COVID at regular intervals during the first year and beyond. A bit like this from the Dubbo study by Hickie et al. 2006 https://pmc.ncbi.nlm.nih.gov/articles/PMC1569956/: I know I...

I don't, because for me the link goes to a Chinese language something or other: But you can download the pdf by searching for it in Suzanne Broadbent's publications https://research.usc.edu.au/esploro/search/outputs?query=any,contains,3483878740002621&page=1&lang=en The citation is...

Stumbled on a study by Broadbent and Coutts 2015, where they found: The sample was small, though - 24 patients and 18 controls - and so I'd want to see if it was replicated in a larger study with equal female:male ratios.

I did not specify which patient forum, so if you want her to see something, I would email her directly or invite her to the thread.

No, Dr Broadbent gave me the two pieces of information on SF36 PF that I provided in my post above preceded by the words "Dr Broadbent..." i.e.: All the rest of my post is me providing context with other studies. Anyone is free to email Dr Broadbent or ask her to join the conversation.

In Fluge et al.'s rituximab trial they report mean steps per day in the low-mid 3000s for a cohort with mean SF36 PF scores in the low-mid 30s. For the group who got worse, they had a mean SF36PF of 27 and mean steps around 2500/day. That would all be consistent with van Campen's numbers...

That info is not from Dr Broadbent, it is from table 3 of this study https://pmc.ncbi.nlm.nih.gov/articles/PMC7551321/ I have no reason to be sceptical of the numbers. Are there other studies that found lower steps per day for each severity? You could have a look at Rekeland et al.'s data...

Since there are no/almost no between-group differences, I was interested in what the participants might have valued in the intervention. In a qualitative study of 11 participants in the pilot study of aquatic exercise, Broadbent et al. 2020 report:

You're welcome. No, she just explained that they would be written up separately.

I was interested to know how severe the patients in this study were. So I emailed Dr Broadbent with a few questions about SF36 physical function scores, which were not reported in this paper. She explained that they will be reported in another paper which they expect to publish later this...

I've edited my post to add the possibility of a trial like the one @Jonathan Edwards described in #83, that looks at different doses of the same drug. The SF36PF has been very useful in demonstrating just how physically disabling ME/CFS is (e.g. Komaroff 1996), correlates well with steps per...

Thanks so much for explaining that, @EndME , and for doing it so clearly. I did not know that, and now I do. Rekeland et al. give a nice list of possible mechanisms of action for cyclo in ME/CFS in the 2024 paper. Maybe there are less toxic drugs that could test some of them:

Thanks for clarifying. In that case, I don't understand why you say How can you back down on something you might have advocated if a trial that has not yet happened were positive? I don't follow.