Thank you @hibiscuswahine for stating that so clearly. It's valuable to have your observations with your medical background.
We need another poll!
Someone on Xitter suggested that “breakdown” is the wrong word as it implies there was once effective care. Same with “re-instituting”. There was the odd NHS physician-led service but they were few and far between and there has never been effective care.
I’m pleased you included this. Is there any way that this possibility could be excluded without finding another cause?
In this section, you could cite Leonard Jason’s prospective study which found that psychological symptoms were not predictive of people developing ME/CFS:
Do you have anywhere in mind? Lancet, BMJ?
I’m severe and I’d say by this level you are into the territory of it being about hour (s) per week rather than day you can be ‘more upright’ (but for me unless I’m in a situation I can’t eg appointment) or ‘out of bed’ and then ill raise my feet or be slouching when sitting when I can too. And it will vary greatly week from week I think but might have a time pattern between eg ‘big exertion’ fir appointments or medium exertion eg phone appointments/serious phone calls cumulatively then how much you get flat off your back in the weeks following
That sounds familiar for when I was moderate. Except I was in the office for 2-3 days a week so it’s an average based on when working from home could be laying back whilst doing it mostly. But still used leave primarily to catch up on rest and had to buy more to do so.
This would be more my hours as well, some days less horizontal. I'm always looking at my day and the whole week to make sure I am not overdoing.
I like a lot of this and it describes the wall I kept hitting when first ill but still able to get around. Now severely affected I do much less. But this idea of hitting walls and of things being about stamina is really important and well put. And I like the final comment, even when feeling a bit better and optimistic about what I can do, I quickly find I cannot, all too often bad results.
You’ve explained it well
Certainly to those familiar with this.
We don’t know so much. But the fact that even in my darkest and worse spots I know that at some point, if given the right conditions and support, I will have a better day is what I hold on to. And shows that things may not be working at that point but aren’t permanently broken.
I think it would be very valuable for this to be published in a well-read medical journal (i don't know about Queios). It's the kind of clear thinking that should inform the medical debate.
Wouldn't being in Queios count as publication already, ruling out publication elsewhere?
It would help to get a representative sample: maybe the MEA could help get a bigger one.
That's good. Nearly 1,100 views and over 50 downloads now so it's looking popular.
Dr Bateman is keen on using hours upright with feet on floor (walking, standing, sitting on upright chair) as part of measuring severity and changes over time. I'll see if I can find a link.
I wonder how many of us are significantly worse in the mornings? Outside of PEM/crashes I am, too; that seems to be fairly common and will not be shared by people with some other fatiguing conditions (some will worsen as the day progresses).