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O' Sullivan recounts the case of a mother and daughter, Stephanie and Abigail, apparently the opening anecdote of the book. O' Sullivan was, by her own admission, pretty unsuccessfully treating Stephanie for epilepsy for years, and then Stephanie started having some trouble walking. Stephanie...

The case she had been presented with by the interviewer was that of someone who had a test at the optometrist and subsequently presented with the symptoms of a brain injury. This was in the context of a discussion on long COVID, so my understanding is that the person contracted COVID during the...

Thanks to @Deanne NZ for posting a link to the interview. I skipped to the end and listened to just a few mins before this section and this bit. I thought O' Sullivan sounded rude here, it was a thinly veiled 'You're an idiot' and Ryan's high brief "Hm" was a 'Yeah, I'm done with you' and she...

Getting back to the Hanson article, this is interesting: I would like to go back in time, please. With an iron infusion.

In Italy, France etc the comma is used where other countries would have a period so I think it's 30.00mg i.e. 30mg of iron.

It makes me think of the word "cerulean" which is a shade of blue!

I've never heard of it but it sounds blue!

Good to hear how you’re doing. That’s a long time with unpleasant side effects. Great that you’ve found a supplement you might be able to tolerate better. But it sounds like you’ve definitely earned the right to regular iron infusions! My ferritin was 2 a couple of years ago when I had...

All I know is mine is not a form of polycythemia! I don't have high or nearly high red cell count, haematocrit or haemoglobin. I can't parse the second sentence so can't comment on that. Yeah, I dunno, I don't think there's any good evidence of a link between ME/CFS and iron issues, but it...

Ferritin, transferrin saturation and serum iron are the only ones that are low for me at this point. All other measures, including haemoglobin, are in the normal ranges. What I have is iron deficiency, and if I don’t get an iron infusion, that will keep going until haemoglobin also drops below...

Just wondering how you're getting on now in terms of iron, @Sean ? My ferritin, transferrin saturation and serum iron have dropped again. In a sense this is good, because I've been feeling extra-crappy and now I know why. My hair is also falling out, having never fully replenished itself...

Well that's a happy story. Let's hope I follow in your wheel treads.

Thanks Binkie! Wheelfreedom sounds amazing, and your chair sounds perfect for you. Wonderful that you actually get to go places now. Yeah transport is not really on the cards at all, because I don't have the energy/stamina to do things that require it! The wheelchair reps could not get their...

Thank you so much for your enthusiastic and encouraging responses! Yes, I have figured out a few of these tricks already. A quick google gave me the essential advice from powerchair users to put the joystick in the V between thumb and forefinger. I was kind of almost doing this already, but...

I got my powerchair a week ago, a Quickie Q300m Mini. It is fabulous, and it will ultimately be great for me. But right now, it’s just a very powerful PEM-inducer. I’ve practised three times for up to 20 mins each time including a rest, and that’s too much. So I have to bring that way down...

Yeah, I think if you get those symptoms and they go away pretty soon after you stop talking then it's not PEM and cognitive fatigue is a good term for it. I started using "cognitive crash" for when those symptoms continue for days/weeks so that I could have a short-hand for carers. I can just...

I think that the newly diagnosed person needs to know that if they're much sicker for days or weeks or more after an activity or period of activity, then it is a sign that they've overdone it either immediately before or in the recent past and that they need to pay attention to what they did...

My repertoire includes cognitive crashes, pain flares and the whole shebang, but I see all of them as coming under the umbrella of PEM, because they're all post-exertional, they're all prolonged and they're all disproportionate. They're not really as discrete from each other as the separate...

Just want to echo @AliceLily - so grateful for all the work you're putting into this.:thumbup: My views are evolving too. These discussions are so worthwhile.

Yeah, I thought that was a bit odd too. But this is a group of (mostly) exercise scientists looking at their data and only seeing delayed onset "occasionally", so I can see where they're coming from. Subjects also provided "free-text input"/"narratives" as in other CPET studies. The authors...