Building an evidence base for management of severe ME (including sleep management)

I agree with Adam here. There might be a common pathophysiology but since we do not know anything about it that may not help much. Moreover, the point of the exercise is to find out in practical terms what might help or hinder someone with particular living problems. And in a way people have been saying this throughout the thread. Trying to standardise sleeping times for moderate patients might work when it might be disastrous for severe patients. As the levels of disability change what helps is likely to change. Advice on how to get to the toilet is not going to apply to mild cases. The idea is purely to look for ways to support and manage, free of any ideas about why.

 

I used a Fitbit for a while. It doesn't really give useful information that I didn't already have. It doesn't even come close to counting steps properly, hand movement screws it all up.

I'm getting tired of this whole diary and write down your symptoms or whatever. Nobody ever reads or uses it in a meaningful way so what's the point? If it's not done in a systemic, controlled and standardized, fashion it's a complete waste.

PACE did a lot of that. In excess. So what? Did they use any of it? If so, where is it? What's the point of asking sick people to spend energy they don't have writing things down that nobody ever does anything with?

 

Dear Chris, I am in "that sort of mood" non stop; it is the underlying problem we need addressed asap; and things are just not moving along at the speed required. And that sadly is human nature...

 

I get that. But it doesn't matter so much if it's not accurate, so long as it's consistent.

If it reads 5,000 steps per day, but that's mostly moving your arms energetically, it's a) still capturing something active and b) not a problem if it logs 5,000 steps every day that you're similarly active.

It's only a problem if the same level of activity is 5,000 one day and 10,000 the next.

I'm pretty sure that my current FitBit overestimates my steps. But I mainly use it to track differences between days, rather than using the numbers as absolutes. Likewise with sleep, I think it makes it up to a degree, but when I sleep well the results are usually better and when I don't they're usually worse.

Though I think we're getting a little side-tracked by the topic of step counters (there could be other things used to measure activity, sleep, etc). It was just one example.

 

I went back to reread the original post. When I was at my most severe (first 6 years after onset) I was unable to stand up or walk to the loo. My sleep and wake times did not have any impact on my level of disability. I slept like a baby and woke up feeling refreshed. My sleep issues manifested 12 years into the illness when I was moderately affected.

Does regulating sleep matter? Not in my case.

 

Section 6.1 (page 28) of this 2014 Clinical primer has as section on Severe ME if it helps @Jonathan Edwards
https://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

 

It looks reasonable but what I find disappointing is that I think I could probably have invented it myself without any special experience - just from knowing the symptoms and what PWME find difficult. If expert advice is to be worth anything as truly expert I would hope to see some unexpected things that had been found to be helpful despite what you might predict. I am also unimpressed that it says to keep medicines to a minimum and then throws in rintatolimod for good measure - despite the lack of solid evidence.

I guess I want something harder nosed. I can see that the primer is better than a good dose of GET and some nice loud music, but I would like to think professionals might have more to offer. Otherwise how does one justify the call for more professional support? A nursing auxiliary who could read the manual would do. I want to cajole professionals into taking evidence gathering seriously. Theory-free evidence gathering.

 

Good thought, but they don't.

Perhaps a primer on how to filter through clinicians to find a caring one.

Come to think of it, it would be great if there were a primer for doctors that included a long look at their attitude, at least, for starters; as a group they have refined condescension and dismissiveness and sheer meanness of spirit when it comes to our community. It's shameful. What a nice change of pace it would be to feel confident about going to a doctor and not being condemned because you are the recipient of a diagnosis.

You want to help pwME, that isn't a bad place to begin, or include, and I believe with all my heart it would help across the board on a fundamental level.

 

I know some who do. I can think of some on the NICE committee but I don't want to name names. I understand the pessimism but when we have Luis Nacul being appointed to head a large facility in Canada I think there is hope for a change.

There are professionals who are totally theory neutral and who have the motivation to get useful studies done. They should not be belittled just because most colleagues don't have a clue. I think what may have changed recently is that now there are people who not only genuinely want to help but also have the scientific methodological scepticism needed.

 

Yes, I do as well. They are exceptions, but that's okay. You are one of them. Exceptions can become the norm, and we can strive for that and hope for it.

But the bad ones - who are the rule today - need to be called out. And the indifferent ones need to be taught their indifference can be damaging. That needs to be spoken to, imo.

 

I will do my best.

 

This is not what people were saying in this thread.

 

Indeed, the first sentence you quoted from me goes with the ones before, not the one after!

 

Ok, sorry!

 

My ME/CFS has always been mild/moderate since Day One, 28 years ago. I have push-crashed for the past 28 years, yet it hasn't made my ME any worse. I've tried the resting and pacing at the advice of my doctor in the first year, however, all that accomplished was that it made my brain fog that much worse. I personally believe that if I hadn't had the push-crash mentality that I would be a lot worse off today. I realize that for some people with ME that it is impossible for them to do much of anything physical, however, if you can, I say do it. Otherwise, when we reach our golden years we are going to be so much worse off.

I'm editing to add that I have always gone to bed between 10 and 11 pm and unless I have something like a sinus infection or some bug that is going around, I'm usually up between 7 to 7:30 am. So I obviously practice good 'sleep hygiene', and it has made absolutely no difference to my ME/CFS.

 

thank you so much for sharing all that, i am learning a lot

yes. I mean i understand that one wants more formalised evidence, for all kinds of reasons, not least because because the pure survey-type of evidence tends to get dismissed as 'the patients dont know what they are on about or whats good for them', and indeed a great many of us (people generally) do (as i think @Trish mentioned way up in the thread) tend to credit whatever they were doing just before an improvement or deterioration with being the thing that caused it. But at the same time.... aggghh its frustrating because it ought to be as simple as simply asking patients, they are the true 'experts' after all. So formally observing & testing what patients have already indicated they find helpful might be a start?

 

It seems to help in dealing with external life, as in not being out of whack with, uh, muggles, who still respect the more-or-less 9-5-is-when-things-happen. Especially important to be in sync with obligations that can't be asynchronous, even the stuff nobody thinks about like receiving mail packages.

But it has no particular effect on illness severity, short and long term.

 

Maybe a trial of does sleeping in the cold or hot help and having a supply of air from an open window vs closed
I sleep best in cold with window open
I’m always trying to get my sleep cycle correct but cannot,if I wake early I take all day to come round then can’t shut off at night
Someone observed that I look like I’ve woke up and taken sleeping pills and am fighting the Fatigue all day
If you get through a day the next day is worse till you cannot do it anymore
African sleeping sickness and reversed sleeping patterns was interesting

 

Is it possible that the more severe a pwME is, the more confounding factors there might be? e.g. A severely ill pwME will almost certainly also be deconditioned; etc.

 

I definitely sleep better in a cool room with the windows open. The only time I have the windows shut at night is in the winter when it is close to 0° C or colder. When I was younger the heat didn't bother me so much at night, but now that I am a woman of a certain age, I can't stand being hot at night. I definitely don't sleep well when I'm even slightly too warm.