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I am not on FB. Thanks to whoever for making it possible for me to see these anyway, without having to have a FB identity.

I wonder if this thread needs to be split into two related but very distinct themes. But it looks like it might be a big job.

Disappointing (that bolded bit). ...very. Harriet Hall et al (and especially her video series about science based medicine) really helped me fairly early on in my illness. A year in, I was getting so desperate, everyone was throwing ideas at me, I was determined to be the one who beat this...

I’d like to read this but I can’t get past the cookies disclaimer (it won’t accept my clicking it). Is there any other way to read it? Or a secret to getting past the disclaimer? I love the quotes you have given us, thanks!

I would too. In my case, I was wrong. Over months and years of recording the results for myself (recording a range of whatever I could think of), and only later going back to assess, I confirmed (for myself): PEM => sleep difficulties + reduced function, rest => improved sleep + improved...

You make some very good points. Perhaps you want to look at some of the following (based on advice and recommendations i’ve seen amongst pwME): * ear-muffs (or sound avoidance) vs noise habituation (which is something I’ve seen recommended to non-pwME) * light control vs light habituation...

I’d like to comment but, although in bad PEM I have been simply surviving in bed dark and silent going mad with frustration at the waiting, I am not severe and have not been severe (in the sense of it being my ‘normal’). I guess the reason you focused on severe (as opposed to moderate) pwME is...

[ETA Thanks for the longer quote.] He says these days there are blood tests? [ETA: This keeps coming up and, as someone who gets good patches and therefore a crushing amount of doubt (usually on my way into a crash), I would like to know where this is a real thing and where it’s just...

Just checking (apologies if I’m just not reading it right): what is the y-scale measuring? Stress response in what substance/unit/process? What are they specifically measuring, do you know?

Interesting stuff! A few things I found when thinking about plasma replacement (how do they do it): When donating plasma they recommend you boost your protein and fluid intake. Seems like good advice for pwME in my personal experience too. The word is plasmapherisis.

Sorry, I’ve just done the test and I’m not sure if a high percentage is good function or good correlation with Executive function deficit (you may have the condition)? eTA and what is considered a high percentage for this test? Over 50?

Um, there’s a self-test?

I think the heading for this thread is a good one: strategies for coping with cognitive difficulties. Personally, executive function disorder looks too broad and vague to mean much to me. Sure, lots of it is familiar but I’ve definitely not had it all my life, or even all the time. And there...

Sorry, my point is: When I was in my first year or two, and had not found how tiny my envelope had to be, I would have picked option 2. Now, with my pacing under control (except when the envelope randomly changes on me or I have no control of life events), I say option 3.

I started out having very little sleep at all (2-3hrs per 24hrs - not exaggerating - I actually thought I got more til I did the numbers). Lots of stuff between then and now. Now I’m pretty stable, on a good level compared to how bad it has been. And sleep-wise so good that I wondered for a...

Nope, never thought of that one. Have considered Histamine in relation to someone who had something like Mast Cell Activation Disorder (=MCAD ... edited from mistakenly writing MCAS) (ETA: but maybe that’s the same? Anything I can confirm with a blood test or by taking an enzyme to see if it...

Unfortunately copy-paste on S4ME is too hard for me. (Highlighting just the bit I want incredibly fiddly.) Some people can’t see if you do, some people miss the article with no link.

NB I know what DOMS feels like for me (when I was fit and healthy and for a few weeks in a remission) and my illness feels distinct from that - and has a lot more symptoms. I’m not confusing the two, just wanting to get a handle on how much we know about normal before we can identify abnormal.

It’s probably obvious that I’m new to really looking into exercise physiology. I found this article (I’m having a very good reading day) quite interesting: https://www.painscience.com/articles/delayed-onset-muscle-soreness.php It’s about DOMS = delayed onset muscle soreness (generally in...

This is not a study of ME/CFS at all (mods please move if it’s in the wrong place). I’m interested because of the time factor in the study: they studied physiological effects of exertion over time (6hrs, 24hrs, 48hrs) in relation to level of exertion (defined in proportion to failure = max...