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Stanford Chronic Fatigue Initiative Website is Online!

heapsreal

iherb 10% discount code OPA989,
Messages
10,138
Location
australia (brisbane)
is there any news on the virus/pathogen study that montoya did? U would think if they are promoting themselves like this that they have found stuff in their study.

cheers!!!
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I don't think you have to see the value of this in you as an individual going there, but in the fact that it's a very prestigeous place doing this and that hopefully they can gain more knowledge so you can get treated somewhere else too.

What study do you mean Heapsreal? Do you mean the clinical trial? I think it was never published so far, so i've only heard comments. From what i heard he found that the treatments work, but not as good as in the first, smaller study. But i have not heard much, so that might not be correct and the trial was finished 3 or so years ago, so he might know a lot more by now.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,138
Location
australia (brisbane)
the study im refering to was that a number of patients with cfs were testing for multiple infections not just hhv6 but all the herpes infections and all the bacterial culprits like mycoplasma etc.
I agree with u about not being a direct patient to experience value as i think their clinical experience will filter through to other docs just like i think will Happen with WPI, thats a good comment eric-s

cheers!!!
 

Hope123

Senior Member
Messages
1,266
the study im refering to was that a number of patients with cfs were testing for multiple infections not just hhv6 but all the herpes infections and all the bacterial culprits like mycoplasma etc.
I agree with u about not being a direct patient to experience value as i think their clinical experience will filter through to other docs just like i think will Happen with WPI, thats a good comment eric-s

cheers!!!

My understanding is that study is still ongoing. AFAIK, the recruitment started last summer and I gave blood in August. Last month, I got a note saying they wanted me (and others) to sign another release so I did that. So I wouldn't expect results in the near future yet.
 

Timaca

Senior Member
Messages
792
Thanks for everyone's feedback. It is most appreciated.

I agree that "Chronic Fatigue Syndrome" is an awful name for our medical problems, but I'm guessing it is the most common name used by the medical community at this point in time. Hence, it makes sense that Stanford has chosen the name that it did: "Stanford": because the work is taking place at Stanford; "Chronic Fatigue": because that is what most doctors are used to calling it, and thus most patients will end up with that diagnosis. So, when they turn to the internet, this website will come up on a search engine. "Initiative": because Stanford is taking a "fresh approach", a "new way of dealing with" Chronic Fatigue, by looking at infections and the immune response. This is clearly stated on the home page. So, while no one likes the name "Chronic Fatigue" this is is a very appropriate name for a website. And, the web address is very manageable. Trust me, I saw the first web address, and it was ridiculously long. At least this one can be memorized!

I have taken notes on all the other name suggestions and will pass them along. One of the research assistants has read the responses on this thread, so she is aware of how people feel about the name. She struggled over the name too, as you will notice by her reply that someone quoted and posted earlier. The name may change in the future, but really it is a good choice if you consider the points I made above.

I understand the frustration and the disappointment over the two year wait to see Dr. Montoya. They are hoping to expand the clinic, but that hasn't happened yet. The website was created so patients could get the help that they needed in their hometown, working with their doctor and perhaps an infectious diseases doctor. Travel is difficult for people who are ill, and it is expensive. I do see Dr. Montoya, and it costs me between $500 and $1000 for airfare, rental car and hotel.....for each visit! Not everyone can travel physically or has money for out of town doctors visits. So, that was one reason the website was created.

Heapsreal: the study you are talking about is #1 on this page: http://chronicfatigue.stanford.edu/about/projects.html That study is ongoing.
The study that Dr. Montoya did on HHV-6 is about to be published. See:http://chronicfatigue.stanford.edu/infections/herpes-experts.html (read the 5th paragraph under his name).

My best to all,
Timaca
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I agree that "Chronic Fatigue Syndrome" is an awful name for our medical problems, but I'm guessing it is the most common name used by the medical community at this point in time. Hence, it makes sense that Stanford has chosen the name that it did: "Stanford": because the work is taking place at Stanford; "Chronic Fatigue": because that is what most doctors are used to calling it, and thus most patients will end up with that diagnosis. So, when they turn to the internet, this website will come up on a search engine.

Timaca, I'm sorry, this is simply not true. The proper name of the disease (little as we all like it) here in the US is "Chronic Fatigue Syndrome." When you get diagnosed, you get diagnosed with the name of the disease (which has a diagnostic code and everything) - not by a "nickname" which in fact nobody uses but the very ignorant. Even doctors who have all kinds of wrong-headed ideas *about* the disease usually tend to get the name right.

"Chronic Fatigue" is something different - a symptom of literally dozens of different diseases. If you think "most" people are getting diagnosed by their doctors with "Chronic Fatigue" than I am afraid you are proceeding from an incorrect assumption.

You really need someone more knowledgeable advising you about search engine optimization (SEO). In this day and age it's a disastrous thing to get wrong. If you think that people might be searching under a wrong name, or a name spelled wrong, or a partial name, there are many ways incorporate the "wrong" answers into your website *invisibly* so that people still find the site. Mimicking a wrong or partial name in the official title of your website is NOT the way to handle this problem. You wouldn't change the name of the university on all of its web sites to "Stamford" because there are some people who think it's spelled that way. That is a backwards way to approach it.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
You can always use "CFS" instead of "Chronic Fatigue" if you value brevity. Though I'd much prefer ME (or MECFS).

I agree with urbantravels 1011%.

"Chronic Fatigue" is absolutely unacceptable.
 

Timaca

Senior Member
Messages
792
urbantravels~ You are correct....it is Chronic Fatigue Syndrome, not Chronic Fatigue, and that is why I said "Chronic Fatigue Syndrome" in the start of my post.

I do know, for whatever reason, they were limited to 4 words for the website name. They wanted a website name that could be easily found by people who are diagnosed with Chronic Fatigue Syndrome or who have chronic fatigue and are trying to find answers as to why. (Please read CBS's post of what the research coordinator had to say on the first page about the website name).

The Stanford website team spent a considerable amount of time on this website. I would think that includes SEO for various words and phrases that are related to our problems.

All names suggested will be mentioned to the Stanford team. But I think it might be best to move on from this topic to others.....any other feedback on the website?

Best, Timaca
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
But from the website it's apparent that you aren't an initiative centered around treating and researching all chronic fatigue states and illnesses for which CF is a prominent symptom. Instead the subject is, in the initiative's words "infection-associated chronic diseases". Using "Chronic Fatigue" is like naming it the Pain Initiative or Brain Fog Initiative. These are all prominent symptoms and are short and easy to remember but they are all absolutely totally inappropriate. The initiative is not centered on the symptom of chronic fatigue, but instead a range of diseases. What about the people with "Chronic Lyme Disease, Epilepsy, Multiple Sclerosis, and other unexplained chronic illnesses" who search on google and will never click on chronicfatigue.stanford.edu because this clearly does not apply to them.

I think that most people who have a diagnosis of "CFS" will search for "CFS" not "chronic fatigue". It is true that most people with ME/"CFS" are not diagnosed so they may search for 'chronic fatigue.' It would be great if these people read your site, but most pwME/"CFS" would agree that not having some of those people find the site is the far lesser of two evils. Then you have a much much larger number of people who have Idiopathic CF and they may find your website, but it looks like that condition(s) is not the subject of the initiative's study. The clinic will be getting all types of calls and emails from tired people asking questions and trying to make appointments.

I have to agree with the remarks made by others about SEO. And in any event, if there is a conflict between SEO and using something more appropriate than "CF", the choice should be very clear.

This issue will never go away until you address it appropriately. Our being given the label of "chronic fatigue" in general is seen as something ranging, depending on the pwMW, from very inappropriate and misleading to part of a pattern of human rights abuse. Patients will just bother you, so why not deal with it now. Please ask someone who has more authority to come and check out this thread, please. "I want to see a manager." : )

Stanford Chronic Fatigue Initiative
An initiative dedicated to studying infection-associated chronic diseases

Mission Statement
To become a center of excellence that improves the health of patients with chronic diseases in which infection or its immune response plays a major etiologic role.

To provide leadership, facilitate multidisciplinary collaboration, make new discoveries, and educate in the field of infection-associated chronic diseases.

Aim
Our primary aim is to study the role that infection and its immune response plays in the symptoms of patients suffering from chronic diseases.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
If anyone is a patient of the clinic, can you please email your doctor and also ask him or her at your next appointment to change the website and initiative name to something other than "chronic fatigue"? thanks.
 

Timaca

Senior Member
Messages
792
Justinreilly~ Thanks for your continued feedback. We hope that those with Chronic Lyme Disease will find the website by google search because there is a section on tick borne diseases, including Lyme disease. Ditto for other pathogens. There is nothing yet on the website about MS or epilepsy, because that has yet to be explored. (Google search takes a couple of weeks to recognize a new website, so searching for Chronic Fatigue Syndrome or Chronic Fatigue does not yet bring up the Stanford website).

I am heavily involved with the website. Don't worry, all your suggestions will get passed along.

Best, Timaca
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Justinreilly~ Thanks for your continued feedback. We hope that those with Chronic Lyme Disease will find the website by google search because there is a section on tick borne diseases, including Lyme disease. Ditto for other pathogens. There is nothing yet on the website about MS or epilepsy, because that has yet to be explored...
Best, Timaca

ok, thanks for passing the info to them.

There is a section on "CFS" so people with "CFS" will find it that way, like people will find Lyme under tick-bourne diseases.
 

*GG*

senior member
Messages
6,391
Location
Concord, NH
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

I understand why you feel that way. Perhaps they only see so many new patients in a week. I know a dr I saw in Boston only saw 1 new patient everyweek because of the amount of time she spent with you upon the 1st visit, so perhaps follow ups are not as hard to get?!

GG
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I understand why you feel that way. Perhaps they only see so many new patients in a week. I know a dr I saw in Boston only saw 1 new patient everyweek because of the amount of time she spent with you upon the 1st visit, so perhaps follow ups are not as hard to get?!

GG

yeah; obviously you don't wait 2 years for a follow up. they are just limiting the inflow of new patients to what they can handle so they can see their patients regularly. they take ME seriously and you know how much time it takes up to actually treat this disease.

the fact they are so booked up is a testament both to how good they are and how underserved pwME are. if i lived anywhere in NoCal i would sign up on that 2 year waiting list.

like others, i am very happy they are doing all they are doing. thanks Stanford and Dr. Montoya!
 

5150

Senior Member
Messages
360
yeah; obviously you don't wait 2 years for a follow up. they are just limiting the inflow of new patients to what they can handle so they can see their patients regularly. they take ME seriously and you know how much time it takes up to actually treat this disease.

the fact they are so booked up is a testament both to how good they are and how underserved pwME are. if i lived anywhere in NoCal i would sign up on that 2 year waiting list.

like others, i am very happy they are doing all they are doing. thanks Stanford and Dr. Montoya!

hi... sorry , i sure didn't mean to sound ungrateful or totally negative; certainly am not feeling like that. Probably i should have added that the clinic will be useless For Me personally if i had to wait 2years. There is no way i'll make it that long, as i said. And of course, my thanks to Dr Montoya also. he is not only very learned re our illness. but i personally know that he is extremely compassionate, understanding of us, way ahead the times when most docs just didn't get it.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi Timaca, i have now tried to find that website through Google. "Stanford CFS" or "Stanford CFS initiative" didn't find it, but "Stanford Chronic Fatigue Syndrome initiative" did. I think it would be important that also people who search for "Stanford CFS", "Stanford ME/CFS" or "Stanford ME" find it, no matter the website's name. Eric
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
5150,

I am so sorry you are that sick! Let's all fight to get real treatments for all those who can not wait for years and years, like you!! Let's not look back and wonder if we could have helped save many thousands of lives if only we had protested harder and louder!! Let's do it!
 
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