Stanford Chronic Fatigue Initiative Website is Online!

[Timaca]

See: http://chronicfatigue.stanford.edu/

Please look it over and provide feedback to this patient forum. We are interested in what you have to say.

If you like what you see, consider a donation.

The Phoenix Rising website is mentioned in the Links and Resources page. Don't forget a donation to this website as well.

Best, Timaca

 

[urbantravels]

At first glance this looks great.

I have a very global comment/question - why is "chronic fatigue" referred to everywhere on the site (including in the name of the initiative) instead of "chronic fatigue syndrome" or "ME/CFS"?

This use of terminology is a huge hot-button issue with patients...we all know that "Chronic Fatigue" is a symptom, not a disease. Why this seemingly tone-deaf choice?

 

[CBS]

Timica,

Thanks to Dr. Montoya, his staff, and to you for what clearly was and will continue to be a huge amount of work. The information on this site covers a broad range of topics and the information on testing ought to be particularly useful for patients not able to be seem by Dr. Montoya.

At first glance this looks great.

I have a very global comment/question - why is "chronic fatigue" referred to everywhere on the site (including in the name of the initiative) instead of "chronic fatigue syndrome" or "ME/CFS"?

This use of terminology is a huge hot-button issue with patients...we all know that "Chronic Fatigue" is a symptom, not a disease. Why this seemingly tone-deaf choice?

UT,

I had the same reaction. I have sent a detailed letter to Dr. Montoya's assistant. I suspect that chronic fatigue was chosen over CFS as the clinic is treating more than just ME/CFS patients and "fatigue" is a common symptom.

I suggested they reconsider the name as I fear it will generate unnecessary concern and detract from the focus on chronic infections.

Perhaps something along the lines of "The Stanford Chronic Infection Initiative" would cover the range of patients that are being seen and at the same time make a strong statement about what is actually being treated in the clinic.

 

[eric_s]

Stanford says at least a subgroup of us have an "infection-associated chronic disease"... It's not really what you would like to have but it sounds great...

Thanks for posting. I will make a small donation in the next couple of days.

 

[eric_s]

One question, Timaca... In the "projects" section i could read that the team plans to look for different pathogens, including XMRV. They want to collaborate with Dr. Lipkin. What about collaborating with someone from the WPI as well?

 

[Timaca]

Eric~ I'm not involved with the reseach aspect of their work. But, from what little I know, they are seeking to do their own investigations into what pathogens are causing our illness. To this end, they have collaborated with some of the best microbe hunters, Ian Lipkin, being one of them: http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001.

Dr. Montoya is well aware of all the XMRV studies that have come out to date. Many of them are listed here: http://chronicfatigue.stanford.edu/infections/other-pathogens.html

Best, Timaca

 

[CBS]

Regarding the name, I just received a reply and permission to post this from the clinic's Research Coordinator:

Hi Shane,

I completely agree with your comments and we struggled a lot with this. The problem was we needed a 4-word title for the site, and although we HATE the label of Chronic Fatigue, for the sake of people understanding what the website is about and being able to find it through an internet search, etc. we decided to go with that for the current title. The sub-title explains more accurately what the website is about: An initiative dedicated to studying infection-associated chronic diseases.

If you can help us think of a name that would still be come up on internet searches on Chronic Fatige Syndrome but that also does not de-mean the patient’s experience of the disease that is only 4 words long, that would be great! We are definitely open to new name suggestions.

​

Perhaps there is a way to have the site come up with the search term 'chronic fatigue' or CFS but to leave chronic fatigue out of the name of the initiative itself and not lower the number of hits.
​

 

[eric_s]

Eric~ I'm not involved with the reseach aspect of their work. But, from what little I know, they are seeking to do their own investigations into what pathogens are causing our illness. To this end, they have collaborated with some of the best microbe hunters, Ian Lipkin, being one of them: http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001.

Dr. Montoya is well aware of all the XMRV studies that have come out to date. Many of them are listed here: http://chronicfatigue.stanford.edu/infections/other-pathogens.html

Best, Timaca

Thanks, Timaca. I've heard about Dr. Lipkin before and i'm sure he's very good, i've just thought that given the difficulties many researchers seem to have finding XMRV it might be helpful to talk to the WPI. Still doing their own investigations of course, only some exchange of experiences in order to maybe get to success quicker. But no problem, it's very good news and i hope more universities will sooner or later copy this.

 

[Cort]

See: http://chronicfatigue.stanford.edu/

Please look it over and provide feedback to this patient forum. We are interested in what you have to say.

If you like what you see, consider a donation.

The Phoenix Rising website is mentioned in the Links and Resources page. Don't forget a donation to this website as well.

Best, Timaca

That's a great idea Timaca!

There's also an article on the Front Page

http://forums.aboutmecfs.org/content.php?372-The-Stanford-Initiative-For-Chronic-Infectious-Diseases-Website-is-Up

 

[Otis]

Regarding the name, I just received a reply and permission to post this from the clinic's Research Coordinator:

Perhaps there is a way to have the site come up with the search term 'chronic fatigue' or CFS but to leave chronic fatigue out of the name of the initiative itself and not lower the number of hits.
​

CBS,

A good webmaster should know the Search Engine Optimization (SEO) tricks. There are non-displayed fields in web pages for this exact purpose.

 

[George]

Yeah all they have to do is set the metta tags and then add info into an attached CSS sheet with the same info. Plus, they can raise their standing by getting everybody with a ME/CFS website to provide a link to their site. The more linkbacks the higher it will come up in the standings. So they can name it anything they want!

 

[heapsreal]

I think it looks like a good initative, good to see others not just WPI looking into cfs, the more the better. As for the name cfs, i know its a sucky name but i think we are stuck with it, if we called it something else now i think those labelled with cfs might miss the boat and think the new name is not their condition, especially alot of docs who have no idea anyway. I think the best thing to happen is when they find the exact cause is to shout it from the mountain tops that cfs is real and this germ/virus etc causes it, stick ya yuppie flu where it fits, lol, and all u psycho babblers better get all your depressed patients tested or the lawyers will be knocking on your door for malpractise. When theres a good test we will be alright.

cheers!!!

 

[eric_s]

stick ya yuppie flu where it fits, lol, and all u psycho babblers better get all your depressed patients tested or the lawyers will be knocking on your door for malpractise.

Yeah, that and a free lumbar puncture for all of them :tongue: I better go to sleep now

 

[heapsreal]

lmao!!! thats good work eric

 

[justinreilly]

No "CF"

Thanks a lot for the amazing work you do at the Stanford CFS Clinic!! Also thanks for vetting the website with patients. Not used to that kind of consideration.

Why exactly four words?

what about Stanford ME [or ME ("CFS") or ME/CFS] Research Institute [or Initiative]?

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!

 

[urbantravels]

I'm sorry, this "only four words" thing Does. Not. Compute.

Why only four words? Cutting off an essential part of your meaning in order to - what? Fit into a logo or something? Isn't that a little bit like cutting off your nose to spite your face?

Just "chronic fatigue" is unacceptable, no matter which way you slice it. Let's see, if Stanford started a Sexually Transmitted Diseases initiative, you'd be happy with calling it the Stanford Transmitted Diseases Initiative? Well, that doesn't make any sense. How about the Stanford Sexually Transmitted Initiative? Oh dear, that's not much better.

Getting your page to come up in searches is extremely do-able, as many here have already described. If you have a web designer who does not know how to do this, you need a better web designer. If it's the *web designer* who insists that the initiative have a title of four words only, you REALLY need a different web designer.

 

[justinreilly]

Urbantravels nails it again!

Stanford Neuro-immune Disease Institute
Chronic Infectious Disease Institute
Stanford Infection-associated Disease Initiative
Infectious Neuro-immune Disease Institute
Abnormal Illness Beliefs Lazyterium

anything but "chronic fatigue"!

 

[SaveMe]

Stanford Clinic appears great at first sight...until you call them and schedule an appointment FOR THE YEAR 2013! Yes thats right, a 2-year waiting list.

 

[August59]

Stanford Clinic appears great at first sight...until you call them and schedule an appointment FOR THE YEAR 2013! Yes thats right, a 2-year waiting list.

I wonder if a clinic like Stanford has a lot of cancellations? U might be able to get in much quicker if they had a "standby" list, but appt like this are hard without plenty of notice to prepare.

 

[5150]

Stanford Clinic appears great at first sight...until you call them and schedule an appointment FOR THE YEAR 2013! Yes thats right, a 2-year waiting list.

if indeed a 2year wait, that makes the clinic pretty much worthless; how long for the follow-ups? idk, Except i feel like in 2years, i will be dead unless something good happens