The Concept of ME/CFS, 2024, Edwards

I think that's well worth doing.

I'e always assumed it's to do with severity, since the only times I've physically needed to lie down during the day were when I was very ill. I sometimes feel like lying down, but not enough to make it worth the discomfort—slouching will do instead.

In reality the pattern may be nothing like that at all. If that's the case, we ought to know about it.

 

We need another poll!
I do now estimate my total time spent recumbent vs Sitting & standing, it’s on average 4 hours upright and the other 20 horizontal. And I’m only moderate.

 

Thanks for doing this @Jonathan Edwards.

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:
https://academic.oup.com/cid/article/73/11/e3740/6048942

I’m not sure if there have been similar prospective studies. @Dolphin may know.

 

Lying down flat has been essential for me. When I look back to my many years of severer ME I find it utterly shocking the amount of very severe symptoms I was having to deal with.

I think there could be a valid problem with understanding how severe each person actually is on the scale of severe and very severe. I've been on the spiral down towards very severe ME and spent over 10 years with severe ME and now at moderate level. My experience of ME at moderate now feels light years away from my severest years. So it wouldn't surprise me if others have not experienced certain symptoms that the severest of levels have.

Having been through what I have I keep up with my pacing because I know from experience that this (bed rest, lying down) has been the most beneficial. I really struggle cognitively still, but that is not as severe as it once was.

 

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.

The difference for me now that I am moderate compared to my severer years is that my upright and horizontal hours are more to keep at moderate level. There still is need to be horizontal due to symptoms but more about pacing. I wish I could explain this better than I have.

 

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.
To a healthy person I may still seem very ‘ill’ but the difference is stark to me. So why not have more of that scale of improvement along the positive axis when we find and fix whatever the issue is? There’s always hope.

 

Very powerful statement. On a smaller scale, what gives me hope in the mornings is that by the evening, I will be having a better day. I wish we knew what drove the huge variation in illness and disability even within a 24-hour cycle. (I say huge, but it's the difference between having to lie in bed feeling horrible versus being able to sit with my feet up feeling OKish and able to have a short conversation. But in terms of quality of life, that's a massive difference.)

Again, I feel as though there's a big clue that we may be missing - this variation within the day.

 

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.
I think we would need to look at hours recumbent (or other measure) by severity category.

 

Part of their policy is to allow people to publish and get peer dialogue and then publish elsewhere if they want.

 

That's good. Nearly 1,100 views and over 50 downloads now so it's looking popular.

 

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).

Also, I wonder how many of us experience periods of complete remission? (I never have, not in 20 years.)