Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 24, 2015.
Fatigue and impairment
There is sufficient evidence that fatigue in ME/CFS (SEID) is profound, not the result of ongoing excessive exertion, and not substantially alleviated by rest. This fatigue must be accompanied by a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities and persist for more than 6 months. Fatigue, and particularly the impact of illness on function, should be assessed in making a diagnosis of ME/CFS (SEID).
Post-exertional malaise (PEM)
PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM
is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.
Despite the absence of a specific objective alteration in sleep architecture, the data are strong that the complaint of unrefreshing sleep is universal among patients with ME/CFS (SEID) when questions about sleep specifically address this issue. While polysomnography is not required to diagnose ME/CFS (SEID), its use to screen for treatable sleep disorders when indicated is appropriate. Diagnosis of a primary sleep disorder does not rule out a diagnosis of ME/CFS (SEID).
Cognitive impairment in ME/CFS (SEID) includes problems with thinking or executive function exacerbated by exertion, effort, or stress or time pressure. There is sufficient evidence that slowed information processing is common in patients with ME/CFS (SEID), and a growing body of evidence shows that it may play a central role in overall neurocognitive impairment associated with the disease (memory impairments, attention deficits, and impaired psychomotor function). Such a deficit may be responsible for disability that results in loss of employment and loss of functional capacity in social environments.
Orthostatic intolerance is a general term that implies worsening of symptoms upon assuming and maintaining upright posture. Symptoms are improved, although not necessarily abolished, by lying back down or elevating the feet. Sufficient evidence indicates a high prevalence of orthostatic intolerance conditions in ME/CFS (SEID) as measured by objective heart rate and blood pressure abnormalities and physical findings during standing, bedside orthostatic vital signs, head-up tilt testing, or by patient-reported exacerbation of orthostatic symptoms with standing in day-to-day life. These findings indicate that orthostatic is a common and clinically important finding in ME/CFS (SEID).
The committee found evidence of other manifestations of ME/CFS (SEID):
Pain is common in ME/CFS (SEID), but highly variable in presence, nature, and severity
(with a higher prevalence in more severe cases). However, there is no conclusive evidence
that pain experienced by ME/CFS (SEID) patients can be distinguished from that experienced by healthy people or those with other diseases. Pain associated with ME/CFS (SEID) can come in many forms, including headaches, arthralgia, and myalgia.
Sufficient evidence supports the finding of immune dysfunction in ME/CFS (SEID). Specifically, the committee’s literature search yielded data demonstrating poor NK cell cytotoxicity (NK cell function, not number) that correlates with illness severity in ME/CFS (SEID) patients and could serve as a biomarker for the severity of the disease, although it is not specific to ME/CFS (SEID).
There is sufficient evidence to suggest that ME/CFS (SEID) can follow infection with EBV and possibly other specific infections, but there is insufficient evidence to conclude that all cases of ME/CFS are caused by EBV or that ME/CFS (SEID) is sustained by ongoing EBV infection. There is also insufficient evidence for an association between ME/CFS (SEID) and bacterial, fungal, parasitic, and other viral infections.
There are several other symptoms that are reported less frequently but may support a diagnosis of ME/CFS (SEID). These include
• Gastrointestinal impairments
• Genitourinary impairments
• Sore throat
• Painful or tender axillary/cervical lymph nodes
• Sensitivity to external stimuli (e.g., foods, drugs, chemicals)
I am not suggesting the whole thing is poor or riddled with problems, I will need time to digest. But here are some things I noticed on a quick scan (my bolds and my comments in italics)
The following guide, derived from the IOM report, is intended to help primary and specialty care clinicians better understand this complex, debilitating, and often-misunderstood illness specialists bit was new to me
Symptoms can persist for years, and most patients never regain their pre-disease level of functioning. honest and concise
Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness I find it strange they have put the effect on patients perceptions first in the list. I have never seen that as a particular issue
Physicians should diagnose ME/CFS (SEID) if diagnostic criteria are met following an appropriate history, physical examination, and medical workup, including appropriate specialty referrals.
Patients who do not meet the criteria for ME/CFS (SEID) should continue to be diagnosed by other criteria as their symptoms and evaluations dictate. These patients should also receive appropriate care. (Conditions that may approach but not meet the criteria for ME/CFS [SEID] include, for example, protracted recovery from EBV mononucleosis or gradual emergence of a different chronic illness, such as multiple sclerosis, colon cancer, or a primary sleep disorder.)I would have thought doctors would find the first part of this paragraph obvious to the point of condescending. what are the other criteria? psychiatric? I like the disussions of other conditions (MS, cancer) much better - appropriately serious and relevant
diagnosing/observing PEM Using two cardiopulmonary exercise tests(CPETs) separated by 24 hours, look for marked inability to reproduce maximal or anaerobic threshold measures on the second day (note that this test may induce severe exacerbation of symptoms in these patients)Big problem for many patients - what happened to 'first do no harm'?
I too, think this is a very strange - and poor - choice of words. The focus really ought to be on others, as patients know first hand how real the disease is. Perhaps they are trying to get across that we don't like the CFS label, but their wording on that isn't good.
I agree with your thoughts on the other bits you picked out. Especially this one:
My bolding. I think this is a massive massive win for us. So often, the examples given include depression, anxiety, etc. and even if these are listed alongside other non-mental-health conditions, they cause a major problem in that they by association, maintain the idea that ME/CFS is also a mental health condition. I'm really pleased that they just left that stuff out all together. It's logical, as most of the time those mental health conditions actually look very different to ME/CFS if you truely understand the symptoms of ME/CFS and, as you point out, the examples they have listed are serious, relevant and recognised biological diseases.
Not mention psych condition does not guarantee that clinicians will not misdiagnose them with SEID. The symptoms in the criteria such as fatigue, sleep problems and cognitive issues are all symptoms of clinical depression.
So, SEID. No longer Myalgic Encephalomyelitis and no longer a Neurological disease. Where have my symptoms gone?
'memory impairments, attention deficits, and impaired psychomotor function'
Sorry its from Wikipedia - I am sure there are more erudite sources for definition of psychomotor impairment.
'Psychomotor retardation (also known as "psychomotor impairment" or "motormental retardation") involves a slowing-down of thought and a reduction of physical movements in an individual. Psychomotor retardation can cause a visible slowing of physical and emotional reactions, including speech and affect. This is most-commonly seen in people with major depression and in the depressed phase of bipolar disorder;'
Yes but PEM and orthostatic intolerance are not symptoms of depression, in fact, exercise is usually good for depression.
Nielk, thanks for posting the Clinician's Guide, much appreciated. I have also noticed that you have had to debate one side of these conversations nearly by yourself, and I do hope that you are not feeling "ganged-up on". I guess I can only speak for myself in saying that I'm truly trying to understand your position in the most respectful way. Please take care of yourself first (and same for everyone else here), I hate to think of us all PEMing from this experience.
It's possible that Wikipedia is right and it is most often seen in major depression and bipolar disorder, but the same terms are commonly used to described symptoms observed in patients with motor neuron disease, multiple sclerosis, Parkinson's disease and huntington's disease, among others.
Actually there are many types of depression from vegetative depression to the point of being catatonic all the way to agitated depression where the person would not have any psychomotor impairment. So wikipedia is making a generalization that is not always true.
I think the main point is that the report (if I am understanding it correctly and I have mostly stayed out of these threads) is that PEM and orthostatic intolerance (autonomic dysfunction) are now key components of diagnosis and neither of these have anything to do with any kind of depression. Exercise can improve depression whereas exercise could put someone with severe PEM and orthostatic intolerance in the hospital!
Hmm. Not sure they got that one right. Not saying patients' perceptions are not influenced by the name, but the real problem here is with other people's perceptions of us based on the name.
No recommendation for CBT
No recommendation for GET
No recommendation for rehab
It's much safer than most reports based on evidence-based reviews.
(Ideally, I'd like clinicians to know more of course. But some will only read so much)
It was not in the scope of their charge to recommend treatments.
Psychobabble/psychological speculation/mention of "pejorative" psychological findings
suggestions that rehab/CBT/GET can work
turn up in all sorts of CFS* papers.
It can mean that lots of material turns out not to be suitable in my eyes to show to professionals.
*And indeed other literature e.g. for POTS.
The section on infection reads a little strange to me:
A little contradictory?
re: orthostatic intolerance
The more general point being that at least some of the 'behavioural' features are not psychopathology but instead are legitimate compensatory management responses to symptoms.
Just finished reading through it, and apart from the one point I commented on before, I don't have any serious problem with it.
Works okay for me.
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?
ummm Im shocked they've used something which had no research in in the main core of the definition. Its exactly what I'd thought when I saw that in the criteria and I really thought that wasnt from research done on ME/CFS.
They are wrong, it isnt universal at all. My case is proof of this as a severe ME person meeting both International ME criteria and the CCC, the SEID criteria due to this dont fit me well.. as long as Im not crashing too badly or crashed, I do wake up feeling refreshed. (if refreshed is based on how fatigued one feels and having waking up with less fatigue).
This part would cause some doctors to not label me with SIED say if I was given a form to fill out with these criteria on it and asked to tick a box asking if I'd suffered this in past 2 weeks. It is likely I may not have as long as I'd stayed in my limits.
They should of done better then put things which havent had any studies done on them into the core definition!! I thought this whole thing was supposed to be "evidence based" and putting things in which havent been researched doesnt make it an evidence based definition.
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