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I don't think there is clear evidence on this. Was discussed a couple of years ago on S4ME here: https://www.s4me.info/threads/blood-volume-and-red-blood-cell-volume-in-me-cfs.17305/#post-176681

Yes, thanks that would be more accurate. The Powell et al. trial from 2001, however, (the exercise that reported by far the biggest effect size) did report: That researchers believed that ME/CFS was caused by deconditioning so they set up an exercise trial to cure patients but when they...

Many thanks to oceanblue on the Phoenix Rising forum for analyzing the literature more than 10 years before me. This was very helpful in writing the blog.

Twitter summary here: 1) Just published a new blog post on what severe deconditioning looks like and how it is different from ME/CFS. 2) Interestingly the best evidence on deconditioning comes from NASA bed rest studies. Head-down bed rest was used as a proxy for the low gravity that...

Just wrote a blog about what deconditioning looks like and how it differs from ME/CFS. https://mecfsskeptic.com/what-does-deconditioning-look-like/ Interestingly the best evidence on deconditioning comes from NASA bed rest studies. Head-down bed rest was used as a proxy for the low gravity...

David's blog writes: Can anyone point me to the text? Is it available online?

The FDA disapproved MDMA-therapy for PTSD. https://www.bbc.com/news/articles/cl4465dpmrro Although randomized trials showed a clinically significant improvement, there were concerns about unblinding as most participants were able to guess which trial arm they were in. So lack of blinding was...

Does anyone know what BMI and calorie intake Maeve had when Roy decided not to use jejunal feeding or TPN?

Thanks, but blood volume is also something that is strongly impacted by bed rest and deconditioning so I suspect it would be difficult to make this part of diagnostic criteria.

I realise that severe ME and not being able to sit upright might cause additional difficulties setting up a feeding tube safely. But the patients described in these reviews were very ill as well, with for example stroke, cancer or dementia that also increase the risk of complications such as...

Here some quotes from reviews on NJ, PEG, PEG-J and Jejunostomy feeding tubes. Gastrostomy and PEG PEG is a safe and effective procedure even if performed in fragile patients Percutaneous endoscopic gastrostomy and jejunostomy: Indications and techniques - PubMed (nih.gov) Tube feeding via a...

Regarding aspiration (food content inhaled into the respiratory tract): the risk was highest for a NG-tube which they did try. So how can it be an argument to not try NJ or PEG-J where the risk is lower than with a NG?

Ok, but there must be some truth-finding involved. You can't just take someone's word for it if they say they did not screw up and did everything right. From summaries that people tweeted, it seems that the Coroner is saying that the death was of natural cause, that nothing more could have...

Do not want to minimise the risk of sepsis but here's for example what a review on long-term TPN says: https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12209 EDIT: here are some more quotes from reviews: https://www.sciencedirect.com/science/article/pii/S0002916523062901...

Could be but doubt it. Would be interested in seeing that protocol if it exists. Even the bad guidelines that we discussed here on S4ME and that do not want to medicalise functional problems are not that bad that they would recommend against trying PEG-J or TPN if there is a clear risk of...

The news articles make it sound like the main problem was that there are no ME specialist clinics and that the doctors did not have experience with ME. From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise...

Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts. From reading guidelines on enteral feeding it is very hard to believe that there were no other options...

I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that...

Pain measured on a visual analogue scale going from 0 to 100. The main effect MD-15.2, 95% CI-18.3 to -12.2 close to the minimal clinically important difference of 15 points. The effect for functional limitations (MD -6.8 (95% CI -8.3 to -5.3)) was lower than the minimal clinically important...