Nielk
Senior Member
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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- 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
- 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
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.
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IOM SEID:
'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.
http://en.wikipedia.org/wiki/Psychomotor_retardation
'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;'
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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.
- 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.
It was not in the scope of their charge to recommend treatments.No recommendation for CBT
No recommendation for GET
No recommendation for rehab
No psychobabble.
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)
Psychobabble/psychological speculation/mention of "pejorative" psychological findingsIt was not in the scope of their charge to recommend treatments.
Infection
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.
Thank you.Other signs include: pallor, general discomfort, blue discoloration of extremities, cold hands and feet, diminished peripheral pulses, sway, efforts to compensate by moving around.
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.
Unrefreshing sleep
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).