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So how many hours a day lying down or how many consecutive days would start the process of changing physiology? Or how often and for how long would you need to stand/ sit up to prevent that change from happening? Would it also help to only slightly increase the upper body's reclined position...

Thank you everyone for reporting from the inquest and discussing. I find it hard to cope (both emotionally and cognitively) with what's being said at the inquest and am mostly much too slow to follow and participate in the discussion. So apologies for only popping in. Thank you @Nightsong...

Still trying to understand if there is such a thing as 'partial parenteral nutrition' (see post #264 ) and if there is, why would be managing that be much different to managing 'total parenteral nutrition'?

Seems I'm not good at googling at the moment -- couldn't find according guidelines. (Edit -- crossposted with @Nightsong who found and quoted some guidelines just two posts above but so could not find a source for the claim either) Instead found "PINNT" a support group for people living with...

Yes would be good to see people getting involved in the discussion there. Apologies for being dumb, but I can't see a way to leave commentaries there. Do you have to register to even just see how to do that? I only see the possibility to do a review or suggest reviewers. That would be helpful...

Edit after I re-found this thread: I realize that this idea has been discussed here already in some detail -- but not sure if just to have such a tool for the value of the forum at the first place has been implied in the discussion? so add here the link to a members only thread for an idea who...

Plus I think to show the evidence, i.e. set up treatment trials properly, both a scientific mind and some clinical experience is needed -- whereas to see bad reasoning in trial setups/ reports and eventually in all research logical thinking and endurance (e.g. with thoroughly checking...

Research on 'effort-based decision making' maybe a bit trendy currently? (Sorry not up to reading / commenting on the paper, just stumbled across it when searching for something else)

Abstract Willingness to exert effort for a given goal is dependent on the magnitude of the potential rewards and effort costs of an action. Such effort-based decision making is an essential component of motivation, in which the dopaminergic system plays a key role. Depression in Parkinson’s...

Apologies, not able to look up the paper myself -- do the authors discuss that as a limitation? Also, does anyone know how that percentage is comparable/ dealt with in similar surveys or can assess how sound the rest of their methodology is? That certainly is a interesting finding. Almost as...

Thank you to everyone working on dissecting the study. In skimming-mode only and most is way beyond me anyway but stumbled across a quote from Jeannette's blog: Too unwell to check myself -- so not clear to me: Do they mean the primary objective of the EffRT performance study as part of the...

Apologies for just popping in -- not able to participate in the discussion but the question about what could doctors do to help people with ME/CFS asking for help when there is no treatment reminded me of a forum discussion (members only) : "As long as there is no treatment for ME, what can...

Couldn't resist to try google and found this note on a study that seems unrelated to ME/CFS: Acknowledgments "The GenROC study was originally conceptualised with significant mentorship and guidance from Professor Esther Crawley who has now retired. We thank her for her significant contribution...

As improvement occurred only several months after infusions were given I think it's unlikely that any outcomes measured an actual effect of Saline IV or volume expansion? (Apologies -- in skimming-mode only so in case it hasn't been discussed in this thread yet: How could there be any long term...

Ah, Thanks. Couldn't see the tweets and don't know why I thought it referred to something different. So it's that: S. Wessely, Standing up for Science panel discussion, March 2017, tweet by Janet Eastham. Now that I could see the one tweet to which you posted the link I searched the forum for...

Searching for a quote on the recovery treshold in PACE I only retrieved this similar quote: 1. Anyone happened to save an image of the quote? 2. Does anyone have an idea what other quote I'm looking for and can add it here? If I recall correctly, someone did a transcript of an interview...

At least would like to add these individual endorsements to @Tom Kindlon For many more, see original thread.

Just thought this thread could do with a bump and an update -- sorry not able to do the latter myself

Thank you for commenting on Ernst's blog. Apologies, only able to skim -- but the part on Crawley caught my eye. From your comment: "Many of the promoters of the PACE, CBT+GET, model have said good things about the LP. In fact one of the researchers on PACE did a study (Esther Crawley, the...

To facilitate sharing on Mastodon -- @Tom Kindlon shared this: https://disabled.social/@david@trialbyerror.org/112410350748904615 Edited for clarity.