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I have come to this conclusion too. It is not that it will happen again, other people with very severe ME have been subjected to the same standard of medical care (or lack thereof) since Maeve’s passing, as has been repeatedly reported on social media. Besides accountability, the lack of any...

I have not read the study but I see that the authors are from the “Integrated Curriculum for Anthroposophic Medicine” at a German university. As far as I’m aware, anthroposophy is a pseudoscientific discipline if not a sect. I would interpret their findings paper with caution.

The stomach may well send feedback via neurons that it is full, but fullness does not equal satiety (one can feel full but not satiated by simultaneously eating a sizable portion of fibrous vegetables and drinking a large bottle of water). Dr Roy is conflating the two, and it seems that he is...

Sorry? When NJ feeding is correctly tolerated, it can be run between 60 to 100 mL per hour, which is plenty enough to feel satiated as feed formulae contain 1 to 2 kcal per mL. Even when it isn’t well tolerated, it can be run at 20-30 mL/h over a longer period of time. Maeve was a fully bedbound...

To be fair to Dr Roy, infection / sepsis in the context of TPN is a very real threat. But this needs to be weighed against the risk of not initiating TPN, and in this case, severe malnourishment played an instrumental role in Maeve’s death. Also, even though she was very severe, she might have...

This was the recent position paper from the European Society of Parenteral and Enteral Nutrition which was discussed in this thread: https://www.s4me.info/threads/avoiding-the-use-of-long-term-parenteral-support-in-patients-without-intestinal-failure-a-position-paper-from-the-2024-lal-et-al.39263/

Yes, because trying to force myself to eat more would consistently flare my symptoms for hours (nausea, stomach fullness and distension, sometimes vomiting) and the exertion of digesting more than I could handle also made me crash / PEM. Only the surgical intervention helped, after that I was...

As someone who has been severely malnourished because of gastroparesis and followed by a hospital unit specialized in eating disorders and malnourishment, I was told time and time again that my gastroparesis was caused by my stomach having become weak (as a muscle) from not eating enough, and...

I was on a locked eating disorder ward, although it wasn’t because I was considered as a mentally ill / eating disordered patient but only because this hospital unit is specialized in severe malnourishment and that was the state my gastroparesis got me in. I had my nasojejunal tube fitted (and...

Thank you @Andy and @forestglip. I am as eager as everyone else to see the results but I would much rather that you take the time you need to conduct this study rigorously rather than having to compromise because of these supplier delays.

I am out of the loop so I apologize as this must already have asked previously — I recall that the first results from DecodeME were expected to be publicly released in August or September, is this timeline still holding up?

I’m surprised that benzodiazepines have not been mentioned. They must only be used as a last resort, sparingly (i.e. not continuously) and at the lowest dosage possible to prevent physical dependence — benzodiazepine withdrawal symptoms are beyond hellish — but (unfortunately) I find them to be...

Precisely. I have been followed by a nutrition department at the hospital that specializes in eating disorders for severe malnourishment / weight loss secondary to my gastroparesis, and while they put me on a nasojejunal tube early on with which I maintained but failed to gain weight due to poor...

Plus ça change… Biopsychosocialists pushing their interests forward with the approval, and even complacency, of medical bodies. I wonder how Anne Örtegren would have tried to fight back against this.

Two helpful papers from Prof Julia Newton’s group: Rethinking childhood adversity in chronic fatigue syndrome, 2017 Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction (2019) And a...

Published in Nature Metabolism, 1 July 2024 (received 27 October 2022, accepted 8 May 2024) Authors from the Knight Lab at University of California at San Diego — As the microbiome field moves from descriptive and associative research to mechanistic and interventional studies, being able to...

It will be interesting to see what happens to the share price of Cassava Sciences. I also imagine that the indictment of Dr Wang must be worrisome news for Sylvain Lesné, the first author of the “landmark” paper on amyloid beta 56 in Alzheimer’s published in Science in 2006 that was found to be...

This is an important point that I rarely see addressed. For instance, the Bateman Horne Center’s protocol for the NASA lean test calls for “limit[ing] extra fluid and sodium intake[, not wearing] compression socks, and alter[ing] the intake of medications that might influence the test” but at...

I am glad that the abstract states how the data was collected. It saved me the energy of reading further.

Millions Missing France and especially ApresJ20, the largest association of long Covid patients, have had to battle against Lemogne and Ranque since 2020. They are the co-leads of the long Covid clinic CASPER (yes, like Casper the friendly ghost) at the Hôpital Hôtel-Dieu, a renowned public...