Bob
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I promise that you're not the only one!I have not been able to keep up with all the threads/posts about the I.O.M.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I promise that you're not the only one!I have not been able to keep up with all the threads/posts about the I.O.M.
Hi CBS, having OI is not a requirement for a SEID diagnosis if you have cognitive impairment. To be precise, the requirement for a diagnosis is: cognitive impairment and/or OI. So if you have cognitive impairment without OI, then you'd get a diagnosis. I take your point about developing OI at a much later stage, but I think that cognitive impairment is widely considered to be an almost ubiquitous symptom in ME. For example, "cognitive/neurological manifestations" are a requirement of the CCC.
Yes, I think that is a major issue. We've not been given any chance for meaningful input or feedback in relation to the recommendations. It feels like we can either accept this report in its entirely or reject it outright, and that's what's causing this dreadful split in our community. A binary 'yes' or 'no' decision has been forced upon us, and there's no room for nuanced debate. The community has had no say, and many people are feeling frustrated and disenfranchised because we have been excluded from the process. Excluding the community from the process is the worst possibly way to do community relations.I also think it might shed light on why the discussion about the P2P Report might have been somewhat easier for the community to engage in because it was marked as a "Draft Report" and comments about the Report were invited by the Government/HHS.
Hi CBS, having OI is not a requirement for a SEID diagnosis if you have cognitive impairment. To be precise, the requirement for a diagnosis is: cognitive impairment and/or OI. So if you have cognitive impairment without OI, then you'd get a diagnosis. I take your point about developing OI at a much later stage, but I think that cognitive impairment is widely considered to be an almost ubiquitous symptom in ME. For example, "cognitive/neurological manifestations" are a requirement of the CCC.
Good questions. I haven't studied the report in enough detail to answer these questions. There must be some evidence in the report to justify these sections of the diagnostic criteria, just as there is for including unrefreshing sleep as a core criterion. But whether we accept their evidence as being strong enough or appropriate is another matter.@Bob - I honestly can't remember off the top of my head how I would have described my cognitive abilities at that time (those issues were present but they became much more profound seemed in conjunction with OI).
So why do you think that they made these two particular symptoms an either/or item?
Are you aware of any emperical evience that "actual" patients have one or the other (I have heard many patients complain of these Sxs patients).
And is there any emperical evidence that supports the Dx algorithm:
FATIGUE AND PEM AND (Cognitive Impairment OR OI) and that patients meeting these criteria do not inadvertently draw in patietns with primary mental health or other issues? If there is such empirical evidence for the new Dx criteria as written, I apologize for overlooking it.
Pain was my primary feature for years. Now its exhaustion, PEM, and cognitive decline. Yet for years a big issue was OI. The disease morphs over time in my current view, and so a definition has to allow for that. I am not yet convinced that a SEID definition is bad. The sensitivity is likely to be fine, it should be good at capturing most patients over time, but might not be able to diagnose them for years in a patient's life. I think the specificity will be a problem, until we have a good way to objectively determine PEM.
Pain was my primary feature for years. Now its exhaustion, PEM, and cognitive decline. Yet for years a big issue was OI. The disease morphs over time in my current view, and so a definition has to allow for that. I am not yet convinced that a SEID definition is bad. The sensitivity is likely to be fine, it should be good at capturing most patients over time, but might not be able to diagnose them for years in a patient's life. I think the specificity will be a problem, until we have a good way to objectively determine PEM.
Compared with patients with longer duration of ME/CFS (>3 years) IL4, IL10, IL13, and IL17A are increased and eotaxin is decreased in early ME/CFS
I think that "myalgic," which means "muscle pain," may be too specific for many people.But ME does not have to stand for myalgic encephalomyelitis. It can also stand for myalgic encephalopathy or myalgic encephalitis.
They didn't go up that far. Remember this had to go through committees and peer-review so I don't find it a problem that a study that came out on October 29 isn't included.Yes but it appeared online first in October 2014.
@Dolphin has pointed out that 'unrefreshing sleep' has been operationalised in the report as 'unrefreshing sleep' or 'sleep disturbance' (which is the same as the CCC):
http://forums.phoenixrising.me/inde...an-just-unrefreshing-sleep.35702/#post-561006
I think that "myalgic," which means "muscle pain," may be too specific for many people.
I've had pain ever since my illness began, but it's been in the form of headaches and migraines rather than muscle pain. (ETA: I do have muscle weakness, i.e., myasthenia.)
So I don't meet SEID criteria because I have both?
Only joking...
@Dolphin has pointed out that 'unrefreshing sleep' has been operationalised in the report as 'unrefreshing sleep' or 'sleep disturbance' (which is the same as the CCC):
http://forums.phoenixrising.me/inde...an-just-unrefreshing-sleep.35702/#post-561006
So I don't meet SEID criteria because I have both?
Only joking...
One has to be very careful with one's wording around here!Or includes both otherwise it would be xor
One has to be very careful with one's wording around here!
'unrefreshing sleep' has been operationalised in the report as 'unrefreshing sleep' or 'sleep disturbance'
Sleep problems is broader so more people can agree with that. That should bring closer again to 100%.So
'unrefreshing sleep' has been operationalised in the report as 'unrefreshing sleep' or 'sleep disturbance'
doesn't really leave me any the wiser. I'm just reading it as sleep problems. I also wonder if they should this relate these to PEM particularly sleep disturbance - does it get worse after exertion.
PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors...
...Conclusion: There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions.
...The existence of PEM can help physicians confirm a diagnosis of ME/ CFS earlier rather than only after extensive exclusion of other conditions.
...Several studies have found that PEM best distinguishes ME/CFS from idiopathic chronic fatigue (Baraniuk et al., 2013; Jason et al., 2002a) and may help distinguish it from other fatiguing conditions with a lower frequency of PEM, such as multiple sclerosis and major depressive disorder (Hawk et al., 2006a; Komaroff et al., 1996b).
Summary
Subjective reports of PEM and prolonged recovery are supported by objective evidence, including failure to normally reproduce exercise test results (2-day CPET) and impaired cognitive function. These objective indices track strongly with the presence, severity, and duration of PEM.
Patients’ experience of PEM varies, and some patients may have adapted their lifestyle and activity level to avoid triggering symptoms. As a result, health care providers should ask a range of questions (see Chapter 7, Table 7-1) to determine whether PEM is present. Minimally, patients should be asked to describe baseline symptoms, the effects of physical or cognitive exertion, the time needed to recover to the pre-exertion state, and how they have limited their activities to avoid these effects
Canadian Criteria said:Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertio1nal malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen.
Oh, did I mention that's my blog Julie kindly links to?Unfortunately, no one test can reliably distinguish patients who have chronic fatigue syndrome from those who don’t. The closest thing to a reliable, objective test is a two-day exercise-to-exhaustion challenge on a stationary bike. Sick patients of all varieties may poop out quickly on Day 1 but whatever they do, they can generally repeat it the next day. Not C.F.S. patients; their performance tanks. Physiological measures ensure that the results can’t be faked, and so far, researchers haven’t seen similar results in any other illness. But large studies haven’t been done. The test also has a big problem. It can leave patients much sicker for months.
IOM said:By contrast, a single CPET may be insufficient to document the abnormal response of ME/CFS patients to exercise (Keller et al., 2014; Snell et al., 2013). Although some ME/CFS subjects show very low VO2max results on a single CPET, others may show results similar to or only slightly lower than those of healthy sedentary controls (Cook et al., 2012; De Becker et al., 2000; Farquhar et al., 2002; Inbar et al., 2001; Sargent et al., 2002; VanNess et al., 2007). Thus, the functional capacity of a patient may be erroneously overestimated and decreased values attributed only to deconditioning. Repeating the CPET will guard against such misperceptions given that deconditioned but healthy persons are able to replicate their results, even if low, on the second CPET.