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Excellent report by Ryan. Great that this is on the front page at CNN.

Hi @Notjustfatigue - So is the call for donations solely based on a medical student saying: "Several investigations have demonstrated the presence of potential biomarkers that would indicate inadequate immune function and signs of autoimmunity as well as alterations in NK, cytokine profiles and...

In practice, I think that standardising wake and sleep times for a PWME is extremely difficult. I can set my alarm to wake up but might feel so ill that I can't actually get out of bed. It might take three hours to get up, by which time I'll probably have drowsed off. If I'm able to force myself...

Is anyone planning on doing any of this stuff?

Very interesting, @Andy - thanks for reporting back.

Sorry, didn't mean to appear to minimise the results of depression being caused by events rather than being endogenous (I've seen the former and it was horrific) - I didn't express myself well there!

Thanks for that summary - I've been unable to read the paper and therefore hadn't read the plan! In terms of comparison groups, isn't it likely that serious depression (not just a reaction to temporary bad circumstances) is a biomed problem, though a different one to ours?

Agreed, but it's all relative and in terms of getting healthy but sedentary controls and patients from other disease groups, especially if blood has been biobanked, it ought to be fairly easy.

TBH I don't care about the psych lobby at this point - I care about having good science done to get us a valid test and I think that the objection that the test might simply be showing something to do with deconditioning seems entirely valid, regardless of who is bringing it up. For our own...

I'd have thought that even just having sedentary healthy controls and a single disease control group (e.g. MS) would have been hugely informative. There seems to be something about this that I'm not getting!

:thumbup: Thanks for offering but I'd prefer my message not to be posted on the PR forum. If you'd like to mention it to Ben in a PM that would be fine but I don't want to put you to that trouble (and maybe Jaime will be able to respond here).

Actually, I see @Ben H isn't often on the forum - @JaimeS, is this something you can help with, please, in terms of passing on a message?

Hi sea - I understand that no one is dismissing my experience but equally I understand all the reasons why I can't expect my experience to lead others to draw the same conclusions as I did. We each are familiar with our own normal pattern, and with the details and context of any event that might...

@Ben H - it looks as though several of us are wondering why there were no control patients from other disease groups (e.g. MS, depression). I'm not able to read much at the moment but is it the case that the controls used were just healthy people, not deconditioned ones? If so, why were there no...

I tried this myself for three months but it didn't help - but as you say, it helps for some, apparently. I think we had a thread on this in the other place.

I think we do need those studies - and in order to do them, we need something that patients already need to monitor their OI, which would be something like a Fitbit but that you could strap to your ankle or trunk to show when you were reclining. My illness was stable at the time but I was...

I made myself permanently worse in a single day when I chose not to lie down in a situation where it was difficult to do so. I really pushed myself through it and I'm still paying for it nearly ten years later. I think we have to be as careful around this as around GET.

It's frustrating that there's such a mismatch between these interesting-sounding things that Cort says about her work and what she occasionally says herself and what actually gets published. Her recent GWI work (the basis for the trial that I think is currently ongoing) sounds very interesting...

Been digging a bit harder - more here from Cort in May 2018: Klimas should know – she’s been intensively charting how ME/CFS patients’ systems go off the rails during exercise for several years now. She’s measured every cytokine, neuropeptide, etc. she can at 8 timepoints before, during and...

Wondering if it's best to avoid sitting with your feet up then, whenever possible, and alternate between lying flat and sitting normally in order to 'train' the ANS, if that's possible. That would be hugely disabling in the short term because people like me would spend almost all day lying flat...