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I am also happy to hear you have improved so much, @JenB and I wish the improvement continues. Thank you for letting us know what was going on and your thoughts about it. I appreciate that you made it clear that right now nobody knows the cause of your improvement for sure, and that the idea...

bump edited to add: https://www.s4me.info/threads/understanding-the-lightning-process-approach-to-cfs-me-a-review-of-the-disease-process-and-the-approach.4888/page-3#post-87936 edited to add 2: -- not LP, but NLP and coaching:

I admit I don't know which criteria are now most consensually used within serious ME research, and don't have the capacity to discuss the different criteria per se. I am rather thinking about a more pragmatical question: Given that ME advocacy often refers to the ICC or CCC, are there any...

Thank you, @dave30th. (Re-using a comment I made on an other thread.) I don't know about Esther Crawley's relation to T. Segal (who not only approvingly refered to the SMILE trial in the recent paper David is refering to but is also the almost omnipresent author of the Royal College of...

An influential teacher at least: http://www.bristol.ac.uk/social-community-medicine/people/esther-m-crawley/teaching.html I don't know about her relation to T. Segal though (the almost omnipresent author of the conference's contributions on ME/CFS) other than Segal perhaps received Crawleys...

Thank you. I was aware of that. :) I just wanted to link to the context within which this and the other contributions were presented on the conference. P.S. I am also aware that even though EC seems to have not presented anything herself, her and other cognitive behavioral concept proponents'...

Seems these contributions were mostly presented as posters. Perhaps not so easy to find in the program. Also, not all titles include ME/CFS.

These groups' (Young Persons Health Special Interests Group and Paediatric Educators’ Special Interests Group) conference program : https://www.rcpch.ac.uk/news-events/events/young-persons-health-special-interests-group-paediatric-educators-special I was surprised by the absence of Bristol /...

A Freudian slip? That would be interesting to know: What exactly were the kids asked about their school attendance? (Also considering that it was a null result at 6 months) (Apologies, haven't re-read the paper, do they display the questions there?)

Does anybody understand what Sharpe wanted to say here (as one of the experts asked by the SMC)? The first sentence seems just strangely worded, but the follwing sentences? Perhaps I don't understand the meaning of the words "however" and "likely" in this context? (The preceding sentence is...

Thank you @Kalliope and @Esther12 Is @dave30th aware of this?

Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?

https://adc.bmj.com/content/103/2/155.responses

https://statmodeling.stat.columbia.edu/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/ There are also some forum threads on Gelman or mentioning him.

https://www.s4me.info/threads/my-robot-makes-me-feel-like-i-havent-been-forgotten.5552/ (which isn't suitable for the very severely affected, though)

Don't know where to put this, so I leave it here: I want to thank all who were and are busy with all the highly relevant things currently happening--the ME awareness week, the media coverage and recovering from attending May 12th events, plus dealing with the newly released PACE trial data...

Deleted one of my previous muddled posts. Apologies. What I wanted to say in this post was that, from my experience as well as from what people in other threads wrote, many of us struggle with (temporary) severe cognitive impairments that aren't assessed properly. In my case, I can increase...

My last point on this for now: To not harm severely affected with experiments, do we have any evidence with regard to sleep regulation and other symptoms management from homecare/ palliative care in other illnesses such as MS that could be applied to ME?

In general, I think to not misunderstand Jonathan‘s idea it‘s important to be aware that he is interested to find out what helps and that he doesn‘t make assumptions. Some of us who are living decades with certain illness patterns might feel offended when somebody wants to investigate such...