-
Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
Article: The Stanford Initiative For Chronic Infectious Diseases Website is Up
- Thread starter Phoenix Rising Team
- Start date
Cort- where's the link to the main site?
Good point. Here's the link: http://chronicfatigue.stanford.edu/
I'm delighted that Stanford has such a robust ME and Chronic Viral Diseases "Initiative" and now place on the Med School website. I especially happy that they are soliciting patient opinion on PR. Not used to that kind of consideration. see thread:
http://forums.aboutmecfs.org/showth...-Chronic-Fatigue-Initiative-Website-is-Online!
Cort said: "go down the link bread crumbs to see where Stanford put the program….…Stanford Medicine/School of Medicine/Infectious Diseases/Chronic Fatigue Syndrome…..Stanford has put chronic fatigue syndrome in their Infectious diseases department"
Well actually, they put CFS in their "Chronic Fatigue" Department in their "Infectious Diseases" Dept.:
Stanford Medicine School of Medicine Departments Medicine Infectious Diseases Chronic Fatigue
http://chronicfatigue.stanford.edu/
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"!
You can think of something. If you really can't give us some more info to go with on what you want in a name.
Really, 'Chronic Fatigue' is absolutely unacceptable. A complete non-starter. I'm shocked the Initiative doesn't realize this.
Other than that I think it looks great. i would just be less tentative with the wording. For example, even for a medical site the following passages on the "CFS overview" page are way too qualified:
"At Stanford, we believe that a subset of cases of Chronic Fatigue Syndrome (CFS) may be related to infection."
It's already proven and totally accepted that most cases of ME are related to infection. I would say something like "We believe that most cases of ME are caused by viral infection." With that you'd just be stating your belief not a fact, so it is not overstating.
Similarly "it could be biologically plausible that the infection could be responsible for a chronic illness." is too weak. 'Could be...plausible' is meaningless. Almost anything could be plausible; just cut out the 'could be'. Why say 'a chronic illness'. specify ME.
Similarly in this passage on the CFS Diagnosis page there are enough qualifiers to make the statement meaningless:
"If all of the preceding diseases have been ruled out, all tests appear normal, and fatigue has been present for more than 6 months, it is then possible that the patient and physician may want to consider the possibility that a chronic infection may be contributing to the fatigue."
I would really like to see Stanford use the Canadian ME/CFS Consensus Criteria definition and diagnostic procedure.
Ideally no link to CDC.
So to sum up: no "CF", use "ME" and CCC for definition and diagnosis.
Thanks for your consideration!
http://forums.aboutmecfs.org/showth...-Chronic-Fatigue-Initiative-Website-is-Online!
Cort said: "go down the link bread crumbs to see where Stanford put the program….…Stanford Medicine/School of Medicine/Infectious Diseases/Chronic Fatigue Syndrome…..Stanford has put chronic fatigue syndrome in their Infectious diseases department"
Well actually, they put CFS in their "Chronic Fatigue" Department in their "Infectious Diseases" Dept.:
Stanford Medicine School of Medicine Departments Medicine Infectious Diseases Chronic Fatigue
http://chronicfatigue.stanford.edu/
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"!
You can think of something. If you really can't give us some more info to go with on what you want in a name.
Really, 'Chronic Fatigue' is absolutely unacceptable. A complete non-starter. I'm shocked the Initiative doesn't realize this.
Other than that I think it looks great. i would just be less tentative with the wording. For example, even for a medical site the following passages on the "CFS overview" page are way too qualified:
"At Stanford, we believe that a subset of cases of Chronic Fatigue Syndrome (CFS) may be related to infection."
It's already proven and totally accepted that most cases of ME are related to infection. I would say something like "We believe that most cases of ME are caused by viral infection." With that you'd just be stating your belief not a fact, so it is not overstating.
Similarly "it could be biologically plausible that the infection could be responsible for a chronic illness." is too weak. 'Could be...plausible' is meaningless. Almost anything could be plausible; just cut out the 'could be'. Why say 'a chronic illness'. specify ME.
Similarly in this passage on the CFS Diagnosis page there are enough qualifiers to make the statement meaningless:
"If all of the preceding diseases have been ruled out, all tests appear normal, and fatigue has been present for more than 6 months, it is then possible that the patient and physician may want to consider the possibility that a chronic infection may be contributing to the fatigue."
I would really like to see Stanford use the Canadian ME/CFS Consensus Criteria definition and diagnostic procedure.
Ideally no link to CDC.
So to sum up: no "CF", use "ME" and CCC for definition and diagnosis.
Thanks for your consideration!
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 Stanford 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
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 Stanford 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
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
Good catch Ahimsa - that really is odd. I believe I've heard some peoples OI clear up or at least get better after antivirals. Your post brings to mind what a service alert people with CFS can be....