Posting this for those residing near San Francisco in case you might be able to attend this free talk event by Dr Jose Montoya. This Thrs evening (3/3/11) at 7pm Dr Montoya will speak for 1 1/2 hrs on a new CFS study involving apprx 1500 patients. Not completed; still recruiting for those interested.
Why this is relevant to this board and to you is that Dr Montoya is with Stanford, prestigious big league institution. This research study tests CFS patients for over 60 disorders which includes lyme disease and coinfections!!!!! This is a milestone breakthrough in my opinion. We now have a major medical institution testing for lyme disease and coinfections!!!
They are still recruiting for patients to participate in the study, but you must be diagnosed with chronic fatigue syndrome (regardless of whatever other things you have been diagnosed with). In otherwords those with lyme disease who do not also have CFS diagnosis are not eligible to participate.
Chronic Fatigue Syndrome (CFS) is a disorder that causes extreme fatigue that is unchanged with rest and which interferes with one's ability to attend to daily activities. It is often accompanied with an array of symptoms that can include muscle pain, memory problems, headaches, pain in multiple joints, sleep problems, sore throat and tender lymph nodes. Since other illnesses can cause similar symptoms, CFS is hard to diagnose.
Dr. Montoya will discuss CFS and current research regarding diagnosis and treatment and the possible CFS-infection connection. [Dr Montoya is currently doing a privately funded CFS study of apprx 1500 CFS patients, testing for over 60 disorders; still recruiting for those interested...blood draws MUST be at Stanford/Menlo Park.....http://chronicfatigue.stanford.edu]
Speaker: Jose Montoya, MD Associate Professor of Medicine, Infectious Diseases Stanford University Medical Center
When: Thursday, March 3, 2011. 7:00 PM. Approximate duration of 1.5 hour(s).
Where: Frances C. Arrillaga Alumni Center 326 Galvez Street Stanford University Campus (Map)
For anyone in the SF bay area, I hope you will consider attending this event to ensure the concerns about lyme disease are represented in the comments/q&a section.
For anyone interested in the list of what disorders are included in the research (over 60) please let me know. I have a partial list given to me by Stanford at the time of my lab draw. It is not a final list. My understanding is that they added more tests to it.
Posted by 5vforest (Member # 29365) on :
That's great, hopefully someone will report on the event. Montoya's a very smart guy, it'll be interesting to hear what he has to say.
I'd probably be seeing him as a doctor if it weren't for his two year waiting list.
Posted by timaca (Member # 6911) on :
It is my understanding that his talk will be videotaped and put on the website in the future.
To participate in the study mentioned above you have to live in CA.
Best, Timaca
Posted by nspiker (Member # 22824) on :
You actually have to live in the San Francisco Bay area. I tried, but won't take So Ca.
Also, this does not give you access to Dr. Montoya, only the study.
Posted by jam338 (Member # 14002) on :
Yes I recently heard they are restricting to SF bay area which is interesting and must be suspected to have environmental implications according to some. Otherwise why restrict it geographically?
Wonder if it has anything to do with the oil refinery being located outside of SF?? There was a spill there where many in surrounding areas were made very sick. Wonder how many of them developed compromised immune systems and maybe later acquired lyme? Lyme is prevalent in the SF bay area as evidenced by Amy Tan and many others.
Perhaps if you attend the talk (since you live close by) you can ask why the restriction to the Bay area.
I *think* they wanted to control the control population. For instance, they did not want out of state participants (I live out of state and am a patient of Dr. Montoya) because they wanted 2 controls for each CFS patient (at least at that time they did...not sure what they are looking for now....I assume the same ratio). Those controls had to be people I did not know. So, it's pretty hard to get controls for any study, let alone try to get someone I don't know to travel to another state. "Hi, I don't know you, but are you healthy? Great, how about going to CA at your own time and expense to get blood drawn?" Not likely to happen.
So, perhaps that is why it is limited to those in the Bay area.
Best, Timaca
Posted by jam338 (Member # 14002) on :
I will try to remember to ask about the restriction if questions are taken. I have had the "control" issue stated elsewhere as well. On the other board someone raised what seemed to be a very valid point. Stanford is right there with thousands of young students at their beck and call who are usually eager to participate in incentivized trials. But, the word "incentivized" might be the issue...they may not be paying stipends to controls. If they provided a slight stipend they would get more than enough. Surely they have thought of that? Confusing.