Significance of unrefreshing sleep in IOM diagnostic guidelines

(Mods please move if there is a better place for this question)

Given that in the IOM diagnostic unrefreshing sleep must be present (correct me if I misinterpret) for a diagnosis of ME/CFS, if that one criterion is under control (no longer present/significantly true) does that mean the patient does not have ME/CFS by that IOM standard?
If so, what does that mean? Cured? Remission? Never was? Is there a differential diagnosis to consider for that case?

 

Personally: when first ill I didn't sleep more than 3-4hrs a night. Obviously also not refreshing.
Now (having created a life that requires little of me in order to pace effectively) I have no more trouble with sleep, using good sleep hygiene etc, than I would when well. Except when having a crash, come to think of it, I can't sleep for a few nights.... hmmm... ok, so I probably still fit the criteria if the sleep thing is allowed to be purely part of PEM.

My question is because I fit ICC easily but IOM has such an emphasis on sleep. And IOM is more recent than ICC.
and yet ... if you found a way to mitigate that symptom, possibly one of the more doable ones, i wondered if that called the diagnosis into question.

 

I've never known what some of these things mean.

My sleep doesn't leaving me feeling recovered and bounding with energy, but it's much more refreshing than no sleep.

It's like some criteria requiring that symptoms are not relieved by rest... but mine partially are, and this seems to be the same for most patients I talk to.

I suspect that we not going to be able to have great criteria until we have a better understanding of the causes of CFS.

 

That's a hard one @Subtropical Island. For me, this is a major symptom. Over the past eight years, I only have 2-3 days per year where I feel good when I wake up. I think it is a core symptom, but at the same time, we know we are all different and diagnostic criteria is based on normative data...and when it comes to ME/CFS, data is limited. If you have PEM...you are probably in our camp.

 

Definite, delayed, PEM. It's what you can't ignore no matter how much you want to or have grit or whatever. Forget and act like a normal person on a lazy Sunday and, not right away but the next day, you're a gibbering wreck like you've been dunked in ice water charged with electric shocks and misfirings.
And I definitely have exercise intolerance, I started with the assumption that's not possible, or maybe just doesn't apply to me, and proven myself wrong over and over again.

Ah, no, I don't wake refreshed and bounding out of bed.
But little to no sleep is still worse than a full night. So it is refreshing in that sense.
Sleep certainly doesn't cure my symptoms ... though sufficient rest (to a level more suitable for a normal someone more than twice my age with a health condition) does, after months of it, stave off most symptoms.
Enough to get optimistic and start the cycle again.

I guess I was wondering why sleep was raised in importance for diagnosis since the previous criteria.

At my worst I would say getting some refreshing sleep would be one of the biggest things I'd want to fix, as the more I need it the less I am able. Is that why?

 

Without good sleep you can not become healthy again but that does not mean that good sleep cures the disease instantly.

For quite some time now I sleep like a baby and am refreshed in the morning but I am not cured. The healing process accelerated but it still will take a long time to get rid of the fast getting tired.

 

On very rare occasions I will wake, feeling refreshed, and start planning/scheming how to get something done. Sometimes I can even get up and still feel like this, it generally goes back to crud by the time I've fed the cat. Sometimes I'll even sit up, in bed, feeling great, and next thing I know, 2 hours have gone by, and I'm still sitting there. (*with a very annoyed cat)

I take being able to get something, anything, done in the "morning" as a sign that I am improving, and losing the ability as a sign that I am not

 

This is an interesting question. I know I’m better than in the first couple of years because some days I do wake up feeling ready to get up, with some energy for the day ahead. However these are the days that I will overdo everything (not doing a huge amount and nothing like a ‘healthy’ person, or what I would do before getting ill).

But I also know I’m in a bad phase when I don’t get any of these good days for a while. I then believe they’ve gone forever and doubt I’ve ever had them as it’s hard to remember the feeling of energy when you haven’t got any!

My sleep has probably been better since being ill, as I’m not working now and, as others have mentioned, don’t have the stressful demands that used to keep me awake (Work worries more than anything).

 

I think it just means that your disease doesn't go away after a good night's sleep. It's a stupid and confusing requirement. I sleep well and feel better in the morning than I do when I go to bed, but I still have a chronic illness.

It's probably a holdover from the Fukuda fatigue focus. If you're going to make a disease about fatigue, you have to find a way to distinguish it from being sleepy, etc. The better is solution is to stop focusing on fatigue, and that's the one major thing I don't like about the IOM criteria.

 

The whole fatigue/sleep thing is confusing and, in my opinion, is too broad a definition.

For me sleep doesn't make me feel better. I feel absolutely , shockingly awful after a sleep, even if it's been undisturbed. Gradually I warm up to the more usual levels of awfulness.

However, if I don't have my nap or sleep my overall symptoms will get rapidly worse.

So sleep does not make feel better, but apart from the initial horrors, which can last some time, it stops me feeling worse.

 

I had what I assume is meant by unrefreshing sleep for several years. I woke up feeling exactly as bad as when I feel asleep, as if I had not slept at all.

These days, thanks to meds etc, sleep is helpful in that a decent amount of good sleep will make me feel less ill than the night before, while a poor night will leave me feeling even more rough. The amount of deep sleep I get seems to be a key factor in the outcome (based solely on my observations).

So I think there is such a thing as genuinely unrefreshing sleep: you feel as bad after sleeping as you did before, as if the 'rest and repair' functions of the body never switched on.

ETA I also think this is very difficult for healthy people to understand: usually, if one gets tired a good night's sleep will fix it. It's hard to get one's head around the idea (let alone the experience) of sleep making no difference.

 

I don't think that improving or eliminating one symptom of ME means that you no longer have it. Can you function as well as you did before you got ME?

 

Nope, I worked it out and I'm now fairly stable at 30% of normal daily pre-illness function with careful pacing (down to 10% if I overdo it by 30% - ie if I do 40% of a pre-illness day). I was very active and capable by anyone's standards pre-illness so this means I am not severe by absolute ME/CFS standards but it's a huge change for me and I don't take it lying down .

I still wonder if one of the people more au fait with the medical end of things could tell me why sleep has become a cardinal symptom though. I wonder what data or observations brought it forward.

I've also since realised that I still often have sleep issues, I'm just more used to it and adapted.

 

Pulling from the report:

Some of the finer details about unrefreshing sleep in ME/CFS, including links to studies, can be found in the Sleep Related Symptoms section of the IOM/NAM report at

https://www.ncbi.nlm.nih.gov/books/NBK284902/#sec_089

 

@Subtropical Island - my tuppence worth is that just because you have managed some control over one symptom does not mean you are cured or no longer have ME. You are simply symptom managing, which is all we can do for now.

In my own case, I was diagnosed with Hashimotos. I have had someone say that as I have Hashimotos my diagnosis of ME is questionable (It being a condition that should be ruled out when diagnosing ME).

My own consultant and Dr reckon that, as I take medication for Hashimotos and we can control it relatively well ( though it can sometimes suddenly require a change of med dose), I do have ME. My symptoms fit even the tighter criteria when my thyroid condition is being treated.

 

It’s a very interesting area - diagnostic criteria.
I don’t get PEM (at least I don’t think I do), but I feel absolutely terrible after sleeping. Sometimes wake up feeling nauseated & with a headache.

 

Then there's the reason for feeling so unwell in the morning, all that mental expenditure the brain does, all the filing of memories, then all those vivid elaborate journeys and stories it takes you on, I actually remember a couple from last night, and two of the people in it date back to over 20 years ago.

 

My dreams have become really chaotic and disruptive. I wonder if I get any deep sleep at all.