The IOM clinician's guide is out

[Nielk]

The question to ask yourself is: Do you spring out of bed in the morning with no disability or symptoms? Or do you still have symptoms and/or impaired function after a night's sleep?

This would be experienced though by patients suffering from most long term chronic diseases like lupus, ra, fibromyalgia, heart diseases, cancer and others. They don't wake up in the morning without symptoms. It is not unique to ME/CFS.

 

[Undisclosed]

Most of the research on sleep problems for ME/CFS were subjective measures where patients filled out questionnaires. One objective study examined pairs of twins in which one twin had ME/CFS and the other was healthy. Compared with the healthy twins, the twins with ME/CFS reported more subjective complaints of insomnia, but objective measures of sleep were “remarkably similar” (Watson et al., 2003) Other studies generally have found only minor objective differences between ME/CFS patients and suitable comparison groups (Armitage et al., 2009; Majer et al., 2007; Neu et al., 2007; Reeves et al., 2006) or differences that were not statistically significant (Ball et al., 2004; Le Bon et al., 2007; Sharpley et al., 1997)

I would assume that sleep issues (call them what you want -- unrefreshing sleep ... ) are quite important re: people with ME as they are mentioned both in the ICC and CCC. What is the research re: sleep that resulted in it being included in both the ICC and CCC?

When it comes to sleep, I could care less if I have some kind of objective proof. I know how I feel in the morning when I wake up -- I feel horrible, dizzy, in tons of pain, and most nights like I haven't slept at all. However, that being said, I don't know of many people with ME who don't have some kind of sleep issue. This definitely needs to be studied more to get to the underlying cause and lack of sleep issues accompanied by PEM etc shouldn't rule out a diagnosis of ME.

I was commenting really on tania's comments that there has been no scientific proof which there has and that the report is not evidenced based which it is.

I am only on chapter 5 of the report so I really don't have a lot to say about it -- yet.

 

[Nielk]

I would assume that sleep issues (call them what you want -- unrefreshing sleep ... ) are quite important re: people with ME as they are mentioned both in the ICC and CCC. What is the research re: sleep that resulted in it being included in both the ICC and CCC?

When it comes to sleep, I could care less if I have some kind of objective proof. I know how I feel in the morning when I wake up -- I feel horrible, dizzy, in tons of pain, and most nights like I haven't slept at all. However, that being said, I don't know of many people with ME who don't have some kind of sleep issue. This definitely needs to be studied more to get to the underlying cause and lack of sleep issues accompanied by PEM etc shouldn't rule out a diagnosis of ME.

I was commenting really on tania's comments that there has been no scientific proof which there has and that the report is not evidenced based which it is.

I am only on chapter 5 of the report so I really don't have a lot to say about it -- yet.

I'm not saying that sleep issues/problems do not exists in ME/CFS. Clearly, it is there for a majority of people. There is no major scientific objective study on it yet. It is mostly based on subjective questionnaires of patients.

 

[anciendaze]

Funny you should mention catatonic depression. I've been wondering lately if uninitiated health care practitioners might view the mostly transient "paralysis" and aphasia seen in ME/CFS/SEID as catatonic depression? What do you think?

Now that you mention "paralysis", which is rare in ME/CFS/SEID, you might go looking into a clinical disease with strong objective evidence: periodic paralysis (PP). While only about half of diagnosed patients have known genetic markers, those without will also show very unusual responses on objective tests. This can even extend to life-threatening responses. While most patients show flaccid muscles during an attack, some also have myotonia. I am very afraid that in the past many PP patients have died in mental institutions.

I keep mentioning this disease because I see groups of patients on this forum with problems that depend on potassium levels, diet and exercise, and the abnormal response to exercise or carbohydrate loads in PP lasts about 72 hours, which matches many reports from ME/CFS/SEID patients as well as the limited research from exercise testing of ME/CFS/SEID patients.

 

[Ren]

Are those a common enough problem to warrant special mention in the context of clinical diagnosis?

Personally I have little problem in that area, especially when not crashed.

These symptoms are among my very most debilitating, all day every day going on seven years - though they were even far, far more extreme at onset.

I end up in the same place, so to speak, following physical activity or cognitive activity (which can include exposure to light and sound - neurosensory disturbance / sensory impairment) or any combination of the two.

I believe neurosensory disturbance / sensory impairment has been important enough to be included in CCC and ICC.

Mango, above, wrote:

...sensitivity to light, sound, vibration etc is a huge problem for so many of us. i would really have loved to see them added to the sentence "Sensitivity to external stimuli (e.g., foods, drugs, chemicals)".

And this is what struck me as well - that neurosensory disturbance / sensory impairment should have been included here. / Edit: Though maybe it should have been (if not) fleshed out more in descriptions of cognitive difficulty.

 

[alex3619]

This would be experienced though by patients suffering from most long term chronic diseases like lupus, ra, fibromyalgia, heart diseases, cancer and others. They don't wake up in the morning without symptoms. It is not unique to ME/CFS.

The point, I think, is to demonstrate this is not garden variety fatigue. Fatigued people wake up feeling refreshed after a good night of sleep.

 

[Bob]

Re unrefreshing sleep...

This would be experienced though by patients suffering from most long term chronic diseases like lupus, ra, fibromyalgia, heart diseases, cancer and others. They don't wake up in the morning without symptoms. It is not unique to ME/CFS.

I'm not sure of the significance of this? The same could be said of pain, which is included as a core criterion in the CCC (i.e. many different patient groups experience it). I acknowledge that unrefreshing sleep is an odd criterion to include but, as I discussed earlier, it does help to distinguish SEID from stress-related illnesses, sleep deprivation, life-style issues, and over-activity etc., which is perhaps very useful? (i.e. it might help counter claims that people have recovered after a life-style change, and it might help stop medical professionals conflating tiredness or stress with SEID.) Also, the criterion is operationalised in the same way as the CCC (which you approve of) to include unrefreshing sleep and/or sleep disruption.

 

[Nielk]

Re unrefreshing sleep...

I'm not sure of the significance of this? The same could be said of pain, which is included as a core criterion in the CCC (i.e. many different patient groups experience it). I acknowledge that unrefreshing sleep is an odd criterion to include but, as I discussed earlier, it does help to distinguish SEID from stress-related illnesses, sleep deprivation, life-style issues, and over-activity etc., which is perhaps very useful? (i.e. it might help counter claims that people have recovered after a life-style change, and it might help stop medical professionals conflating tiredness or stress with SEID.) Also, the criterion is operationalised in the same way as the CCC (which you approve of) to include unrefreshing sleep and/or sleep disruption.

Right. What I am trying to say is that the argument against including Myalgia should be the same as unrefreshed sleep. If a criteria includes one, it should include the other as well - that is the case with the CCC or ICC.

 

[Bob]

Right. What I am trying to say is that the argument against including Myalgia should be the same as unrefreshed sleep. If a criteria includes one, it should include the other as well - that is the case with the CCC or ICC.

Yes, there does seem to be some inconsistency here. I've just re-read the pain section of the full report, and I can't work out why they didn't include pain as a core criterion, whereas they did include unfreshing sleep with what looks like a very similar evidence base.

This is an extract of their discussion re the research evidence relating to pain :

The majority of ME/CFS patients experience some type of pain, although individual experiences with pain vary widely (FDA, 2013; Meeus et al., 2007; Unger, 2013). In one community-based study, 94 percent of respondents fulfilling the Fukuda definition reported muscle aches and pain, and 84 percent reported joint pain (Jason et al., 1999). Recent preliminary data from the Centers for Disease Control and Prevention’s (CDC’s) Multisite Clinical Study of ME/CFS indicate that 80 percent of ME/CFS patients enrolled had experienced pain in the past week (Unger, 2013). Muscle aches and pains were the most common pain complaint (reported by 72 to 79 percent of patients), followed by joint pain (reported by 58 to 60 percent of patients) and headaches (reported by 48 to 56 percent of patients).

So they say that 94 percent of Fukuda patients report experiencing muscle pain (or aches).

The 94 percent figure is almost identical for the figure that they give for unrefreshing sleep, that I quoted earlier. So it's a reason to question why they included unrefreshing sleep but not pain.

Note, however, that 94 percent of Fukuda patients report experiencing muscle pain, so it doesn't seem to be a helpful criterion to distinguish CCC/ICC patients from Fukuda patients?

 

[Dolphin]

I think I agree with that. There does seem to be some inconsistency here. I've just re-read the pain section of the full report, and I can't work out why they didn't include pain as a core criterion, whereas they did include unfreshing sleep with what looks like a very similar evidence base.

This is an extract of their discussion re the research evidence relating to pain :

The majority of ME/CFS patients experience some type of pain, although individual experiences with pain vary widely (FDA, 2013; Meeus et al., 2007; Unger, 2013). In one community-based study, 94 percent of respondents fulfilling the Fukuda definition reported muscle aches and pain, and 84 percent reported joint pain (Jason et al., 1999). Recent preliminary data from the Centers for Disease Control and Prevention’s (CDC’s) Multisite Clinical Study of ME/CFS indicate that 80 percent of ME/CFS patients enrolled had experienced pain in the past week (Unger, 2013). Muscle aches and pains were the most common pain complaint (reported by 72 to 79 percent of patients), followed by joint pain (reported by 58 to 60 percent of patients) and headaches (reported by 48 to 56 percent of patients).

So they say that 94 percent of Fukuda patients report experiencing muscle pain (or aches).

The 94 percent figure is almost identical for the figure that they give for unrefreshing sleep, that I quoted earlier. So it's a reason to question why they included unrefreshing sleep but not pain.

Note, however, that 94 percent of Fukuda patients report experiencing muscle pain, so it doesn't seem to be a helpful criterion to distinguish CCC/ICC patients from Fukuda patients?

If one looks at Figure 5-1, using the threshold that symptoms were at least of moderate severity and occurred at least half of the time over the past 6 months, only 73% have muscle pain (and 64% have joint pain).

 

[Valentijn]

The 94 percent figure is almost identical for the figure that they give for unrefreshing sleep, that I quoted earlier. So it's a reason to question why they included unrefreshing sleep but not pain.

I think they included sleep problems, despite not being at all specific to ME/SEID, as a way to help define PEM. Otherwise they would have likely left it out entirely.

 

[Sidereal]

I am very afraid that in the past many PP patients have died in mental institutions.

No doubt. These channelopathies give rise to symptoms that sound like textbook description of "hysteria".

 

[Nielk]

If one looks at Figure 5-1, using the threshold that symptoms were at least of moderate severity and occurred at least half of the time over the past 6 months, only 73% have muscle pain (and 64% have joint pain).

Quoted from IOM report p. 142 on pain -

More severely disabled ME/CFS patients may experience more pain (Marshall et al., 2010).

Are severe ME patients adequately represented in the results of the report and the criteria?

 

[Dolphin]

Are severe ME patients adequately represented in the results of the report and the criteria?

Another way of looking at it is whether more mildly affected patients are adequately represented in criteria like the ICC.

When I became more severe I developed a lot more symptoms. I satisfy all the criteria now but wouldn't have when I was more mildly affected (unless perhaps I was forced to do lots of physical challenges/manual labour).

 

[medfeb]

Quoted from IOM report p. 142 on pain -
Are severe ME patients adequately represented in the results of the report and the criteria?

Nielk - that's a really good question, not just from the perspective of whether pain is included as a core symptom but from the perspective of whether doctors would recognize severe ME from what is in the IOM criteria.

 

[Nielk]

Another way of looking at it is whether more mildly affected patients are adequately represented in criteria like the ICC.

When I became more severe I developed a lot more symptoms. I satisfy all the criteria now but wouldn't have when I was more mildly affected (unless perhaps I was forced to do lots of physical challenges/manual labour).

With most chronic diseases patients go through times when they feel better and then relapses or crashes. I suffer from Crohn's disease but have not had symptom exacerbations now for a long time. Should not criteria for disease describe the disease when experienced at full force?

 

[Seven7]

I have a question, I quantity for NK was LOW to non existing, BUT my activity was border low. I have the rest OI, Sleep issues, PEM, Low T cells, high B cells... I am classic CFS, with this paper would I be consider SEID??

I know I qualify for NK cell dysfunction syndrome adn cfs at the time. Now?

 

[Nielk]

I have a question, I quantity for NK was LOW to non existing, BUT my activity was border low. I have the rest OI, Sleep issues, PEM, Low T cells, high B cells... I am classic CFS, with this paper would I be consider SEID??

I know I qualify for NK cell dysfunction syndrome adn cfs at the time. Now?

There are no testing required for diagnosis, so that you nk cell function results are not taken into account. You simply have to have the three major symptoms; fatigue, pem and unrefreshed sleep along with one of these two - cognitive impairment and/or O.I.

 

[Dolphin]

Another way of looking at it is whether more mildly affected patients are adequately represented in criteria like the ICC.

When I became more severe I developed a lot more symptoms. I satisfy all the criteria now but wouldn't have when I was more mildly affected (unless perhaps I was forced to do lots of physical challenges/manual labour).

With most chronic diseases patients go through times when they feel better and then relapses or crashes. I suffer from Crohn's disease but have not had symptom exacerbations now for a long time. Should not criteria for disease describe the disease when experienced at full force?

I was mildly affected for the first 4.5 years. I would have liked to have been diagnosed during that time rather than waiting till I was more ill. The ICC wouldn't have picked up my condition.

 

[Nielk]

I was mildly affected for the first 4.5 years. I would have liked to have been diagnosed during that time rather than waiting till I was more ill. The ICC wouldn't have picked up my condition.

What were your symptoms for the first few years?