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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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Cort- where's the link to the main site?
Before considering the possibility that a patient may have infection-associated CFS, the patient would need to have experienced fatigue for at least six months, and the patient's primary care provider would need to rule out the following categories of diseases as possible causes of the patient’s fatigue. We have listed some examples of common diseases to rule out in each category.
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Dysautonomias
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Thanks for the article, Cort!
I looked at their web site and found this section from the diagnosis page (see http://chronicfatigue.stanford.edu/overview/diagnosis.html )
So, does this mean that any type of Orthostatic Intolerance (NMH, POTS) is an exclusionary condition for ME/CFS according to this group? I'm just wondering because sometimes it seems like the CDC folks act as if this is the case (e.g., CDC presentations saying "there's no orthostatic intolerance in CFS" and yet the CDC web site never lists this as an exclusionary condition). On the other hand, the Canadian ME/CFS clinical case definition (aka, CCC criteria) actually calls out Autonomic Manifestations such as NMH and POTS (see p. 12 of the Journal of CFS, Volume 11, Number 1, 2003).
While I agree that ME/CFS research studies should rule out other conditions that can cause fatigue, I'm wondering what kind of patients the Standford folks plan to study. Especially since they call the illness by "the phrase that shall not be named."
minor edit: I referenced the old definition, forgot that it had been changed in 2010, probably should have linked to the ME/CFS wiki -- http://www.mecfsforums.com/wiki/Revised_Canadian_Consensus_Definition
They responded that they needed to do this because they want people to find it with their search engines when looking for "Chronic Fatigue Syndrome" and needed to use four words in the title.
Why exactly four words?
what about:
Stanford ME [or ME ("CFS") or ME/CFS] Research Institute [or Initiative]?
Stanford Neuro-immune Disease Institute?
Chronic Infectious Disease Institute?
Infectious Neuro-immune Disease Institute?
Abnormal Illness Beliefs Lazyterium?
anything but "chronic fatigue"!