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Don 't want my suggestion to get lost in the point about PwME.;) #4MEScience?

#4MEScience? I wonder if use of PwME in any form will be confusing for people who support us, but aren't conversant with that term. Think this is a great idea, by the way, @Kalliope! :thumbup::thumbup:

Oh, please....!

@Agapanthus So sorry to hear that both you and @MeSci are having such a hard time. I have no suggestions for your nasal issues or lack of sleep. So I'm just sending hugs and good thoughts! :hug::hug::hug:

I look forward to reading your blogs, @Simon M, on those occasional days when my brain is not mush! This will meet a serious need for us non-scientuific types. Thanks in advance.

Don't worry, @Stevo. You'll get there.;)

We have 2 stairlifts, one going to the upstairs, and one to the basement. We bought them new, and together they were about $6000 USD, if I recall correctly. This is one of the best decisions we've ever made. I wouldn't be able to use stairs any more, and my husband uses them to bring laundry...

Thanks, @Alvin and @MarcNotMark, for the info on these studies. I'll check this subject out further soon.

Sure, @Alvin . For a long time, maybe 15 to 20 years (my onset was 1990), I'd go to bed exhausted, but then would just lie there with my mind buzzing around, unable to sleep. So I'd finally get up, go into my computer, and play Freecell for hours--at least until 3 or 4 a.m. and sometimes until...

Very interesting, @MsUnderstood . Thanks.

What a thoughtful and complete list of considerations,@MsUnderstood! I was reminded of my father, who was driven out of his new condo, after a lifetime of living in detached housing, by the myriad small sounds coming from others in the building. This was in new construction touted to be...

You take this 3 times per day, so i don't think you can just take one before bed when you think you need it and expect any results. @NelliePledge It's not like melatonin in that regard, or a sleeping pill.

@Sunshine3 Please see question in #11, above. Thanks!

I sleep 9-11 hours per night. Less than 9 and I'm barely functional. If I don't set an alarm, which is most of the time, I sleep 10-11 hours. I used to have terrible "tired but wired" problems (up til 3 or 4 am), but that has come to a screeching halt since I started taking N-acetyl cysteine...

I'd also be chary of sales representations re these issues unless you get in writing exactly what will be used. This caution is based upon experience.:(

Thanks for this. It helps me understand other developments, like the release of the minutes of the two "oversight" bodies.

Thank you, @Sasha! I gather that, if they want to fight it, they would go to a tribunal?

What is the ICO? What is the significance of this for members who don't know the legal setup in the UK?

Oh, @dreampop, we've all been there. :hug:

I'm blown away by the quality of thought and writing in this submission, and in the many serious discussions on this forum. It's also thrilling to me to contemplate the possibilities the forum offers for interacting with researchers and impacting the field of ME/CFS research to our benefit...