Discussion of full IOM report

[Bob]

Here's a relevant extract re sleep...

Their conclusions, re unrefreshing sleep, seem to be based on the evidence of a 2013 study by Jason et al. which found that 92-99% of ME patients reported unrefreshing sleep. See the bottom of this post for details.

Starting on page 87 of full report...

Patients with ME/CFS frequently experience sleep-related problems
such as insomnia, sleep disturbances, unrefreshing sleep, and nonrestorative
sleep (FDA, 2013; Fossey et al., 2004). These symptoms are included in all
existing ME/CFS case definitions and diagnostic criteria (see Chapter 3).
Unrefreshing sleep, or feeling as tired upon waking as before going to bed,
is among the most common symptoms reported by ME/CFS patients, and
only a small percentage of patients diagnosed with ME/CFS fail to report
some type of sleep dysfunction (Carruthers et al., 2003; IACFS/ME, 2014;
Jason et al., 2013b). This section summarizes the evidence on sleep-related
signs and symptoms in ME/CFS reviewed by the committee to determine
whether such symptoms should be a component of its recommended diagnostic
criteria for ME/CFS.

ME/CFS patients are more likely than healthy controls to experience
sleep-related symptoms occurring at least half of the time and of at least
moderate severity (see Figure 4-2) (Jason et al., 2013b). Although sleeprelated
symptoms also are reported by healthy persons and by chronically
fatigued persons who do not fulfill ME/CFS criteria, a greater percentage
of people fulfilling ME/CFS criteria report unrefreshing sleep, sleep disturbances,
and difficulties falling asleep or waking up early in the morning
(Komaroff et al., 1996a; Krupp et al., 1993; Nisenbaum et al., 2004) relative
to these other groups.

Sleep-related complaints may change throughout the course of the illness.
For example, one study found that in the first few months of the illness,
ME/CFS patients complain of hypersomnia, but as the disease progresses,
they have trouble staying asleep (Morriss et al., 1997). A cross-sectional
study of randomly selected patients found that sleep-related symptoms
may become less frequent over the course of the illness (Nisenbaum et al.,
2003); however, this may be due to behavioral adaptation or changes in
sleep medication.

It is important to consider frequency and severity thresholds when
assessing subjective sleep complaints. In a study using the DePaul Symptom
Questionnaire, for example, 65 percent of healthy controls reported
unrefreshing sleep that occurred with mild severity at least a little of the
time, yet only 16 percent of healthy controls reported unrefreshing sleep
that occurred with moderate severity at least half of the time (Jason et al.,
2013b). The percentages of ME/CFS patients reporting unrefreshing sleep
at the same thresholds were 99 and 92 percent, respectively.

This is the reference:
Jason, L. A., M. Sunnquist, A. Brown, M. Evans, S. Vernon, J. Furst, and V. Simonis. 2013b.
Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis.
Fatigue: Biomedicine, Health & Behavior 2(1).

 

[Sean]

99 & 92 % are getting pretty close to universal.

Nonetheless, maybe unrefreshing sleep would be better in the second group of symptoms, alongside cognitive impairment and orthostatic intolerance, with a requirement to have at least 2 of those 3.

 

[Ember]

The SEID diagnostic criteria divide symptoms into three categories: required, optional and supportive. Relative to the ICC, SEID elevates unrefreshing sleep to a requirement and reduces symptoms such as pain and immune impairments to a supportive-only role. Other symptoms are dropped entirely.

Has anyone found a consistent basis for determining whether a symptom is optional or merely supportive in the SEID hierarchy? The guiding principle mentioned by the IOM presenters was a polite version of KISS (Keep it simple stupid).

 

[Bob]

Has anyone found a consistent basis for determining whether a symptom is optional or merely supportive in the SEID hierarchy?

Whether right or wrong, they consider unrefreshing sleep to be universal in ME patients, and that seems to be the criteria for inclusion as a required symptom. I haven't yet read their discussions re immune impairments.

 

[Simon]

More on sleep

I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.

Yes, I think this is the main point of the criteria, that sleep does not ameliorate PEM, or "exertion intolerance" (i.e., it does not "refresh" the patient). In other words, SEID is not caused by a lack of sleep.

I wouldn't want that to be a criteria, because many of us sleep soundly, and many of us have fairly normal sleep patterns.

I agree, and if they'd qualified unrefreshing as not restoring normal function, I would be happy.

The percentages of ME/CFS patients reporting unrefreshing sleep
at the same thresholds were 99 and 92 percent, respectively.

I find that a bit hard to square with reports here, other studies I've seen and this:

A cross-sectional
study of randomly selected patients found that sleep-related symptoms
may become less frequent over the course of the illness (Nisenbaum et al.,
2003); however, this may be due to behavioral adaptation or changes in
sleep medication.

That said, the Jason study used a large sample () of SolveCFS Biobank patients - self-referred and diagnosed by physicians according to CCC/Fukuda, it says. Won't be entirely representative, but still.

I wonder how the Jason studydefined 'unrefreshing'? If unrefreshing does mean "non-restorative" it's a good question/symptom, but the IOM says

Unrefreshing sleep, or feeling as tired upon waking as before going to bed,
is among the most common symptoms reported by ME/CFS patients

And I'm not sure thats 90%+. I suspect a lot of people feel tired on going to bed as they did when well, and 'refreshed' to some extent on waking, but not, of course, restored to health.

So am still a bit uncomforatable with the criteria but not sure there's much more to say

 

[Ember]

Whether right or wrong, they consider unrefreshing sleep to be universal in ME patients, and that seems to be the criteria for inclusion as a required symptom. I haven't yet read their discussions re immune impairments.

My question wasn't about required symptoms, but about a consistent basis for determining whether a symptom is optional or merely supportive. Cognitive impairments and OI are optional SEID symptoms. Supportive SEID symptoms include pain and immune impairments.

 

[MeSci]

Cognitive impairments and OI are optional SEID symptoms.

You have to have one or the other:

At least one of the two following manifestations is also required:

1. Cognitive impairment* or
2. Orthostatic intolerance

* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS
should be questioned if patients do not have these symptoms at least half of the time with
moderate, substantial, or severe intensity.

 

[Ember]

You have to have one or the other:

Is there a better descriptor than optional?

 

[Scarecrow]

You have to have one or the other:

Is there a better descriptor than optional?

It's more correct to say that you need to have at least one of two, so optional isn't correct. I'm not sure of the best way to express this: alternative requirements?

 

[Sean]

Also I prefer non-restorative sleep to unrefreshing sleep.

 

[SOC]

Also I prefer non-restorative sleep to unrefreshing sleep.

So would I. I think it's a much clearer word.

The IOM Report says:

Patients with ME/CFS frequently experience sleep-related problems
such as insomnia, sleep disturbances, unrefreshing sleep, and nonrestorative
sleep (FDA, 2013; Fossey et al., 2004).

Blast! Now I'm even more confused! So what the heck is the distinction between unrefreshing sleep and nonrestorative sleep in the perception of the committee? They've listed them as different items in this list as if they believe them to be different....

Maybe we've got our microscope focused too tightly and are looking for fine-tuned wording where it doesn't exist. I dunno....

Bottom line (IMO) on our response to the IOM report -- we shouldn't lose track of the remarkable forest by focusing on the few imperfect trees.

 

[Sean]

Bottom line (IMO) on our response to the IOM report -- we shouldn't lose track of the remarkable forest by focusing on the few imperfect trees.

+1

 

[robynk]

Admittedly, I have not yet read the full report and after watching the video on IOM's site, I don't have a lot of hope. Unless I am missing something, I see an apparent disservice to the complementary and alternative medical communities who have largely been the ones to recognize, accept, and effectively help those of us with CFS. Why were none of those medical professionals and experts with CFS on the committee? To me, that is as blatant a disregard for a key segment of CFS as all of the medical personnel who have dismissed us and our symptoms.

Yes, I am glad IOM streamlined the CDC's criteria but the new name is about as horrible as the video. (What happened to recent reports proving abnormalities in the brains of CFS patients? Gee, why didn't they put more dollars into funding that Stanford research so maybe they could have an accurate name...and maybe even an accurate diagnostic test?)

The panelists in the video seemed more concerned about touting names and not providing very definitive information or articulate responses to questions. It was as disheartening and frustrating as dealing with CFS. Just one more example of the government making a bumbling mess of things...not much different than the erroneous NBC News report this week...Can't they get this right; or perhaps as someone suggested, they prefer to wear us down. Oh, that's right; we're already worn down. I suppose that's the Exertion Intolerance portion of the dis-ease.

 

[Forbin]

Patients with ME/CFS frequently experience sleep-related problems
such as insomnia, sleep disturbances, unrefreshing sleep, and nonrestorative
sleep (FDA, 2013; Fossey et al., 2004).

"Unrefreshing sleep, and nonrestorative sleep," doesn't completely capture it, as some patients actually wind up feeling worse (i.e. more tired) after sleep.

 

[SOC]

Admittedly, I have not yet read the full report and after watching the video on IOM's site, I don't have a lot of hope. Unless I am missing something,...

Probably actually reading the document before drawing conclusions would help. The report is, in fact, very, very positive for the patient population. It's not perfect, but it is far, far better than any of us expected. Perfection shouldn't be expected given the limited research base... perfection doesn't exist even under the best of circumstances.

No need to get bummed out and hopeless until you actually know what you're bumming yourself out about.

 

[beaker]

"Unrefreshing sleep, and nonrestorative sleep," doesn't completely capture it, as some patients actually wind up feeling worse (i.e. more tired) after sleep.

How about the very technical term of "crappy sleep" ? : )

 

[Sean]

"Unrefreshing sleep, and nonrestorative sleep," doesn't completely capture it, as some patients actually wind up feeling worse (i.e. more tired) after sleep.

True. Especially early on, I used to feel like shit when first waking up. Usually improved a fair bit once I got moving. But that isn't saying much, still felt like shit & struggled for the rest of the day.

 

[A.B.]

Same here. The first symptom was unrefreshing sleep, and I felt worse upon waking up than going to bed despite sleeping without interruptions.

 

[Sidereal]

Non-restorative sleep would be a better term than non-refreshing IMO. For what it's worth, earlier on in my illness I used to feel dreadful in the mornings, worse than when I went to sleep, and it would take me several hours to get to my "normal". Then something changed and lately I feel "refreshed" in the mornings but as the day goes on and I start expending energy I immediately begin to fade out again. I would consider my sleep currently to be refreshing but non-restorative. It makes me feel somewhat better than the night before but does not eliminate my exertional intolerance or other symptoms.

 

[MeSci]

Non-restorative sleep would be a better term than non-refreshing IMO. For what it's worth, earlier on in my illness I used to feel dreadful in the mornings, worse than when I went to sleep, and it would take me several hours to get to my "normal". Then something changed and lately I feel "refreshed" in the mornings but as the day goes on and I start expending energy I immediately begin to fade out again. I would consider my sleep currently to be refreshing but non-restorative. It makes me feel somewhat better than the night before but does not eliminate my exertional intolerance or other symptoms.

The trouble with 'refreshing' is that it has several meanings, so is open to misinterpretation. I much prefer 'non-restorative'.