Discussion of full IOM report

[eafw]

For anyone who might find it useful, I've taken tables 7.1 and 7.2 into their own document. They give a good overview of the committee's proposals for how they think the diagnosis should work in practice

http://forums.phoenixrising.me/inde...report-reformatted-for-ease-of-reading.35575/

 

[MeSci]

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

But thinking about it, I'm not entirely what restorative means either. Presumably they don't expect sleep to restore anyone with an illness to full health, so what does it need to restore them to? Just make them better to some extent? Restore them to feeling relatively well within the scope of the illness? Or...?

 

[Sean]

Restorative as I understand it in this context just means the normal function of sleep, not some curative power over disease.

 

[MeSci]

Restorative as I understand it in this context just means the normal function of sleep, not some curative power over disease.

So - good-quality sleep as opposed to poor-quality sleep. Sometimes I use the word 'restful' to contrast it with the type where you are waking frequently, sleeping too lightly, finally waking up feeling wired, anxious, with a pounding pulse, tension and a bowel screaming to be emptied! After a restful sleep I wake feeling relaxed, calm, able to lie there for a while, having a nice stretch, etc. 'Refreshed' would be fairly appropriate, in fact!

 

[Bob]

...you are waking frequently, sleeping too lightly, finally waking up feeling wired, anxious, with a pounding pulse, tension and a bowel screaming to be emptied!

Oh what fun we have!

 

[Bob]

What happened to recent reports proving abnormalities in the brains of CFS patients?

That's documented in the full report, along with other brain-related research, starting on page 104. And, in the same section of the report, there's also an impressive amount of discussion about research into cognitive issues including processing speed etc.

 

[Marco]

That's documented in the full report, along with other brain-related research, starting on page 104. And, in the same section of the report, there's also an impressive amount of discussion about research into cognitive issues including processing speed etc.

While I agree that the section is generally good they do conclude that cogntive impairments appear to be milder than seen in other conditions and elsewhere in the report bemoan small sample sizes, the lack of research on childhood adolescent ME/CFS and the inability to sub-group.

I may have missed it but I don't recall any discussion of this large study into childhood 'CFS' that not only showed severe cognitive impairment but also identified two discrete sub-groups whose impairments were pretty much opposite (hyperresponsive and hyporesponsive) and would have effectively cancelled out in a simple between groups comparison with controls.

Event-related potentials in Japanese childhood chronic fatigue syndrome.
Akemi Tomoda, Kei Miyuno, Nobuki Murayama, Takaka Joudoi, Tomohiko Igasaki. Journal of Pediatric Neurology, January 2007.

http://iospress.metapress.com/content/w14pg23t125337q8/

 

[Sidereal]

I think studies doing neurocognitive testing on CFS patients tend to use an inappropriate design. In order to demonstrate deficits I think you'd need to do one or more of the following:

- exercise the patients the day before cognitive testing

- induce cognitive PEM with a neuropsych battery on day one followed by repeat testing on day two (although there would be a problem of practice effects if you used the same tests even if with different versions on both days, so day 1 should be something fatiguing but different than the real tests you're interested in doing on day 2)

- subject the patients to an orthostatic challenge while they are doing the cognitive tests

@Woolie might have some thoughts on this.

 

[Marco]

@Sidereal

I agree that you're more likely to show cognitive impairment when physiologically 'stressed' or with repeat teasing (the report does acknowledge that problems manifest during multitasking and timed testing) but as per the study I linked to above impairments are found under normal test conditions - once you identify sub-groups.

 

[Bob]

I may have missed it but I don't recall any discussion of this large study into childhood 'CFS' that not only showed severe cognitive impairment but also identified two discrete sub-groups whose impairments were pretty much opposite (hyperresponsive and hyporesponsive) and would have effectively cancelled out in a simple between groups comparison with controls.

Event-related potentials in Japanese childhood chronic fatigue syndrome.
Akemi Tomoda, Kei Miyuno, Nobuki Murayama, Takaka Joudoi, Tomohiko Igasaki. Journal of Pediatric Neurology, January 2007.

http://iospress.metapress.com/content/w14pg23t125337q8/

That study is cited on page 189, towards bottom of page, but it's not discussed in great detail.

Abnormalities emerge when participants are selected on the basis of
increased difficulty with memory and concentration and when more complex
challenges are employed, most notably those combining orthostatic
and cognitive stresses (Haig-Ferguson et al., 2009; Kawatani et al., 2011;
Ocon et al., 2012; Stewart et al., 2012; Tomoda et al., 2007; van de Putte
et al., 2008).

 

[MeSci]

cognitive impairment when physiologically 'stressed' or with repeat teasing

Oh yes - repeat teasing works very well in stressing me!

 

[eafw]

they do conclude that cogntive impairments appear to be milder than seen in other conditions

Their summary statement (page 106) does not seem to describe the impairments as mild

Slowed information processing, demonstrated by objective neuropsychological testing and poten-
tially related to problems with white matter integrity, is one of the strongest
neurocognitive indicators in support of a diagnosis of ME/CFS, particularly
if there is evidence of normal functioning on untimed tests and impaired
functioning on time-dependent tasks.

The greater severity of memory and other neurocognitive deficits in
ME/CFS patients without psychiatric comorbidity suggests that these defi-
cits may be a distinguishing feature of the disease, or at the very least a
means of defining subgroups within the ME/CFS population.

The thing I'd take issue with is when they say it is not a necessary condition for the disease, they have it as and/or with OI and a possible way to sub-group.

But as this was basically a literature search and analysis, then if the lit doesn't show cog deficits as a necessary symptom right now then it doesn't.

I don't recall any discussion of this large study into childhood 'CFS'

They reference it on page 189 in the paediatric section

Abnormalities emerge when participants are selected on the basis of
increased difficulty with memory and concentration and when more com-
plex challenges are employed, most notably those combining orthostatic
and cognitive stresses (Haig-Ferguson et al., 2009; Kawatani et al., 2011;
Ocon et al., 2012; Stewart et al., 2012; Tomoda et al., 2007; van de Putte
et al., 2008).

subject the patients to an orthostatic challenge while they are doing the cognitive tests

some studies have done this, as above

(ETA, Bob beat me to it with the Tomoda ref)

 

[Marco]

Thanks @Bob and @eafw

I still think they could have made more of it though as the study made statements like :

“…abnormal P300 patterns and frontal dysfunctions might be associated with a high-order brain function abnormality in patients with CCFS”

“The findings in the present study were consonant with the hypothesis that patients with CCFS have brain dysfunction”

and

“their higher nervous system has deteriorated as demented subjects were previously reported to have longer P300 latencies”

I think the 'less severe' comment I'd picked up on was on page 100 discussing slowed reaction and movement times :

"Comparisons with other illnesses, such as sleep apnea and depression, suggest that psychomotor impairment in ME/CFS may be less severe than in those other illnesses (Neu et al., 2011; Schrijvers et al., 2009)."

 

[Marco]

Oh yes - repeat teasing works very well in stressing me!

Damn French keyboard.

Repeat teasing would be much easier to 'operationalise' than the 2-CPET though.

 

[Bob]

While I agree that the section is generally good they do conclude that cogntive impairments appear to be milder than seen in other conditions and elsewhere in the report bemoan small sample sizes, the lack of research on childhood adolescent ME/CFS and the inability to sub-group.

I only have a limited knowledge of the research but, if I remember correctly, cognitive deficits often don't show as we'd expect them to, when measured in research settings, and it's only a certain type of specific cognitive task that demonstrate a substantial deficit when measured. If I remember correctly, multi-tasking shows a problem as we'd expect it to, and I think there's another certain type of information processing which shows a deficit in tests. (I can't remember exactly what - but we've discussed it on the forum.)

On page 102 it mentions a large size impairment for complex information processing speed...

Also, in
a meta-analysis of research studies, measures of both simple (reaction time
task) and complex (PASAT) information processing speed showed moderate
to large significant impairments in persons with ME/CFS compared with
healthy controls (Cockshell and Mathias, 2010).

 

[Sidereal]

I don't see the Stanford study cited where a reduction in white matter volume was shown.

 

[Bob]

I don't see the Stanford study cited where a reduction in white matter volume was shown.

So you remember the name of the lead author?

 

[Sidereal]

So you remember the name of the lead author?

Yes, Zeineh.

http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079

 

[Bob]

Yes, Zeineh.

http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079

Yes, it doesn't seem to be cited, but the formal publication date seems to be Feb 2015, so perhaps that's why it's not included?

 

[Sidereal]

Yes, it doesn't seem to be cited, but the formal publication date seems to be Feb 2015, so perhaps that's why it's not included?

Yes but it appeared online first in October 2014.