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Stony Brook's Friedberg on $600,000 Grant for Studies in Chronic Fatigue Syndrome

X

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi nielk,

Sadly, I've been waking up from thinking medical professionals were Gods, for at least 6 years now. My biggest clue was the fact that they don't look for nutritional deficiencies .. Not even in celiacs.

I just thought they were ignorant (due to med school training) but dr friedberg appears to be making a career move here. In the etiology section of the iacfsme website, they describe me/cfs well but not in details that would help doctors or patients find the cause of their me/cfs. I'm assuming he read that section ...

Tc ..x
 
X

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi andrew,

My point was that we have cbt, the spoon theory, the program where people are wearing heart monitors to determine their threshold, etc. so we don't need any more info on how to manage our lives.

We need the money for biological studies. We have some great studies by individuals, rich, myhill, kdm, lapp, montoya, etc .. going but we need to expand on these. And from the looks of dr friedberg.s background he should know this .. I had no idea he was the president of the iacfsme when I read this article. Was that mentioned in the article ? I'm using my tablet right now so i'll check in a sec ..

Tc ..x
 
Andrew

Andrew

Senior Member
Messages
2,517
Location
Los Angeles, USA
xchocoholic said:
Hi andrew,

My point was that we have cbt, the spoon theory, the program where people are wearing heart monitors to determine their threshold, etc. so we don't need any more info on how to manage our lives.
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We have biological theories too. The idea of a study is to review something in a systematic way and see how often (if at all) it actually works. And the only studies we seem to get in the activity management areas are the Oxford style ones that don't even study the correct syndrome.

Admittedly, I would rather see biological studies. But I also see some value in a managements style of study that is not based on UK politics.
 
F

floydguy

Senior Member
Messages
650
Andrew said:
We have biological theories too. The idea of a study is to review something in a systematic way and see how often (if at all) it actually works. And the only studies we seem to get in the activity management areas are the Oxford style ones that don't even study the correct syndrome.

Admittedly, I would rather see biological studies. But I also see some value in a managements style of study that is not based on UK politics.
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Sorry still think it's a waste of time. Everybody is different in the activity area. One size fit all studies do not work and may never work. Best for patients to experiment on their own and report on sites like this what is working and what isn't - perhaps based on some dx profile. 10% of NIH funding going towards such vague things like "reducing" stress is ridiculous and self-evident. We don't need pretty leather bound reports for such work. "Messy" self reports are much cheaper and possibly more effective. In this economic environment and with so little funding currently available "some value" just doesn't cut it, IMHO.
 
Andrew

Andrew

Senior Member
Messages
2,517
Location
Los Angeles, USA
floydguy said:
Sorry still think it's a waste of time. Everybody is different in the activity area. One size fit all studies do not work and may never work.
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I don't see any one size fits all claims in the IACFSME site or in the study design. I also don't see it saying they are going to do stress management.
 
Nielk

Nielk

Senior Member
Messages
6,970
Andrew said:
I don't see any one size fits all claims in the IACFSME site or in the study design. I also don't see it saying they are going to do stress management.
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Some of the treatments in the program are active relaxation, to help with managing stress and symptom relief, pacing activities to keep patients from doing too much or too little, and low-level activities, which may include leisurely walks of 30 seconds to five minutes.
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It's my bolding from the explanation of what the study will include.
 
Hope123

Hope123

Senior Member
Messages
1,266
Thanks for the gracious words, Nielk. Ultimately, you and I are on the same side -- we all just want to get well and get back to life.
 
Daffodil

Daffodil

Senior Member
Messages
5,875
hi all. could someone help me out? i am confused ..which study results will be out at end of 2011/early 2012? is that the lipkin xmrv study? is that still going on? is it the deep sequencing lipkin/hornig study?

thanks a lot
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
hi Daffodil,
you can read about the status of the Lipkin study from Dr. Lipkin here (yes, it is still ongoing).
heapsreal has started a thread to collect ongoing studies here
 
D

deboruth

Messages
38
Ember said:
http://sbpress.com/2011/10/stony-br...rant-for-studies-in-chronic-fatigue-syndrome/

A self-management study for Chronic Fatigue Syndrome, or CFS, that is receiving a grant of approximately $600,000 from the National Institute of Health is lead by Dr. Fred Friedberg, who is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University.

The project, titled Efficacy of Home-Based Self-Management for Chronic Fatigue, focuses on establishing a cost effective program in which patients with CFS can apply individualized, ability-based treatments to help themselves feel and function better.

Chronic Fatigue Syndrome is a medically unexplained illness. Dr. Friedberg said in an interview that this means Were not really sure what causes it, and there is no definitive test for it. However, there is consensus about several of its symptoms, such as six months of persistent fatigue not alleviated by sleep or exercise, headaches, flu-like symptoms and post-exertional malaise.

According to Dr. Friedberg this last symptom, meaning prolonged and/or delayed exhaustion after performing an activity, has been under-emphasized in the past, and may, in fact, be one of the illness defining characteristics.

Besides the substantial physical limitations caused by the illness, which may lead to the inability to hold a job, another frustration of patients with CFS is the skepticism of family, friends and doctors alike. People are often treated dismissively by doctors, and so there is little help available to them.

Dr. Friedberg clarifies that patients suffering from these symptoms often do not look sick. They may have their lab tests come back normal, resulting in doctors telling them that they are healthy. If the doctor says youre OK, everyone believes that youre OK.

Additionally, patients with CFS are often told by others that a simple change in diet, or attitude will reverse the symptoms. These types of advice are rarely helpful.

The tendency to disbelieve or blame the patient for his or her suffering is one of the reasons why Dr. Friedbergs study is so important now. The fact that the program is purely self-management sets it apart from other related studies. Based on a recent survey of CFS patients, it was clear that a large number desired this kind of self-applicable treatment.

People who are home-bound usually have their own schedule, Dr. Friedberg noted, They dont want to try something that may flare their symptoms.

This is where the convenience of a home-based treatment is helpful.

Some of the treatments in the program are active relaxation, to help with managing stress and symptom relief, pacing activities to keep patients from doing too much or too little, and low-level activities, which may include leisurely walks of 30 seconds to five minutes.

The idea is to begin at a level that will not exacerbate the symptoms and gradually move on to higher levels of activity. Dr. Friedberg believes that this process the will help to develop a tolerance of activity.

If the the program is successful, he hopes to make the treatment more available to doctors and insurance companies, who might cover the program.

Dr. Friedberg welcomes anybody who wishes to contact him about his study; he can be reached at 631-632-8252.
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