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It's great to hear of the use of FUNCAP by ME/CFS researchers. I think a 1-2 day retrospective period would require very clear instructions and checking that people understand. The answers are based on a sort of assessment of average capability. If you get very specific about a short time...

A paper that analyses the muscle metabolite data from this paper, along with similar data from the NIH ME/CFS study Systems Modeling Reveals Shared Metabolic Dysregulation and Novel Therapeutic Treatments in ME/CFS and Long COVID 2024 Gong-Hua et al

I'm a bit puzzled. For ME/CFS, they find issues with alanine and aspartate, and then "ASN" is mentioned out of nowhere, with no explanation of the acronym. Then in Long Covid, there's no mention of alanine and aspartate, but there are issues with Asparagine, which is also referred to as ASN...

Ha, thank you SNT. I did not recognise the name. It's terrific that Wenzhong is working with people in Kunming, China. We hear so little about how ME/CFS is regarded in China, let alone in Yunnan. There's a decent understanding of ME/CFS and Long Covid here: Edit to add:

Many posts have been moved to Chris Armstrong - Melbourne ME/CFS researcher, research updates and general chat Apologies from the moderation team, for not getting to this sooner. The OMF thread is specifically for news about and from OMF.

Thanks very much @Nightsong. So, similar results to that older study I quoted in my last post. Standing shock index increased from 0.67 to 0.76 after blood donation The OCSI (orthostatic change in shock index, the difference between supine and standing shock index) increased from 0.11 to...

There's another paper: Orthostatic Change in Shock Index: Comparison with Traditional Tilt Test Definitions The OCSI (change in the shock index after standing) was 0.11 in healthy people and 0.18 in those same people after donating 450ml of blood. My OCSI was often 0.3 and even up to 0.6.

Standing shock index: An alternative to orthostatic vital signs Donating 450 ml of blood didn't change supine shock index values in healthy people. It did change standing shock index values by a bit less than 0.1, which is quite significant. And the authors suggest that standing shock...

From the above study: Yes, I don't think we have to see the orthostatic tachycardia itself as pathologic. It may well be a very normal and helpful reaction to some sort of stressor - to blood or oxygen not getting to where it needs to get to, for example.

Well, sure, if you really need an umbrella term for the pain and functional restriction of arthritis, the loss of physical capacity of multiple sclerosis, the tremors of Parkinsons, the pain of migraines, the numbness of leprosy, the weight loss of cancer, and so much more.... But, the title of...

:) In the spirit of robust debate, I'd suggest a better word than 'disagreeable' might be 'rigorous'.

Thanks @horton6. The tag is "study idea". Tags are found on the top left of a thread. You can click on the link in this paragraph and also search on tags in the search function to see all the threads with ideas. People can attach a "study idea" tag to threads they start themselves and staff...

I'm very sorry to hear that cassava. I'll add ApresJ20 to our list of patient organisations. If anyone has a contact with them, we'd love have them onboard with our Cochrane campaign.

I was going to disagree with you a bit Rvallee, and suggest exercise is useful for some things, giving the example of Type 2 diabetes. Can't walking programmes tip some people out of type 2 diabetes? Activity, within reason, surely is good. But then I read that point, and realised that just...

That is, higher risks of poor recovery for American Indian and Alaska Native participants

Yeah, we've still got this problem of Long Covid being a whole heap of things. It's not surprising that people who have been through a traumatic hospitalisation will take longer to recover, and might not ever recover their pre-illness health. That's going to really blur identification of risk...

Note the high mean age of the sample. Vaccination prior to infection was also very low (20.5%) - making me think that most of the surveys must have been sent out earlier rather than later. I think that low level of vaccination makes it more likely that the vaccinated people are different to the...

I think this potentially is one of the better studies we have seen - prospective, very large, multiple cohorts. I'm just not sure why the people with reported SARS-CoV-2 infection were such a low percentage (14.2%) of the people who responded to the questionnaire. Given this study was done over...

Worth noting - obesity didn't increase odds, nor a history of 'elevated depressive symptoms'.

It may not be, but I think there are a few things to think about before the idea is chucked away. Here are my example measures again. I don't think some of those heart rates on standing are normal, and the days when standing heart rates were high coincided to some extent with worse ME/CFS...