Kati
Patient in training
- Messages
- 5,497
http://www.immunedysfunction.org/excellence.html
From Dr Friedman's Facebook page. (Not sure if it's been posted before)
There are a number of very powerful slides if you scroll down the link. Great work.
Announcing CFSAC ME/CFS COE Recommendation
On May 17, 2016, the Chronic Fatigue Syndrome Advisory Committee, a U.S. Department of Health advisory committee, whose purpose is to make recommendations to the U.S. Secretary of Health on matters related to ME/CFS (formerly known as Chronic Fatigue Syndrome), recommended to the Secretary the creation of 12 ME/CFS Centers of Excellence, each to be funded at a level no less than $1 million/year in direct costs, for no less than 5 years, requiring an investment of no less than $60 million in direct costs for these Centers and ME/CFS. It was further recommended that these Centers be geographically distributed throughout the United States to enable access by all ME/CFS patients, and that these Centers be comprehensive in the services they provide which include: both basic and clinical ME/CFS research, ME/CFS patient care, education of both patients and the public, physician training so that more physicians are able to provide advanced care for patients, and social services for patients. For those patients who are unable to travel to one of these Centers, the recommendation stipulates that there will bedbound and housebound patient care provided via telemedicine in the communities in which these patients live.
ME/CFS Centers of Excellence, while primarily targeted for ME/CFS research and patients, may include the study of related illnesses such as Lyme disease, fibromyalgia, Gulf War Illness, and Multiple Chemical Sensitivity. Such an inclusive strategy recognizes the similarities of pathophysiological mechanisms of illnesses which exhibit similar symptoms, and the efficiency in advancing the understanding of mechanisms contributing to these illnesses by simultaneously studying multiple illnesses.
ME/CFS Centers of Excellence have the potential to explore and reveal a new class of infectious disease agents: those viral and bacterial agents which produce chronic unwellness and disability by either persisting beyond the usual and recommended course of treatment and/or incapacitate the immune system such that it is no longer able to clear the infectious agent or agents from the human body. It is, therefore, to everyone’s benefit that such Centers be funded.
According to Jason et al. (1), the societal cost of ME/CFS to the U.S. economy is approximately $7 billion per year. Therefore, from an economic point of view, it would be financially advantageous to fund ME/CFS Centers of Excellence at a fraction of this cost with the expectation that within 10 year’s time, the $7 billion annual loss to the U.S. economy would be substantially reduced or eliminated.
For these reasons, we ask everyone to support the CFSAC’s recommendation for ME/CFS Centers of Excellence.
The CFSAC approved the creation of 12 Centers based upon the presentation you may view at the following link:
http://www.immunedysfunction.org/excellence.html
We encourage you to read the identified reasons why ME/CFS Centers of Excellence should be established. Our hope is that after reading the presentation you will be a staunch supporter of these Centers, willing to inform your federal government representatives of your support for the creation of these Centers.
Thank-you.
1. Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding (2008) The Economic impact of ME/CFS: Individual and societal costs. Dynamic Medicine 7:6
From Dr Friedman's Facebook page. (Not sure if it's been posted before)
There are a number of very powerful slides if you scroll down the link. Great work.
Announcing CFSAC ME/CFS COE Recommendation
On May 17, 2016, the Chronic Fatigue Syndrome Advisory Committee, a U.S. Department of Health advisory committee, whose purpose is to make recommendations to the U.S. Secretary of Health on matters related to ME/CFS (formerly known as Chronic Fatigue Syndrome), recommended to the Secretary the creation of 12 ME/CFS Centers of Excellence, each to be funded at a level no less than $1 million/year in direct costs, for no less than 5 years, requiring an investment of no less than $60 million in direct costs for these Centers and ME/CFS. It was further recommended that these Centers be geographically distributed throughout the United States to enable access by all ME/CFS patients, and that these Centers be comprehensive in the services they provide which include: both basic and clinical ME/CFS research, ME/CFS patient care, education of both patients and the public, physician training so that more physicians are able to provide advanced care for patients, and social services for patients. For those patients who are unable to travel to one of these Centers, the recommendation stipulates that there will bedbound and housebound patient care provided via telemedicine in the communities in which these patients live.
ME/CFS Centers of Excellence, while primarily targeted for ME/CFS research and patients, may include the study of related illnesses such as Lyme disease, fibromyalgia, Gulf War Illness, and Multiple Chemical Sensitivity. Such an inclusive strategy recognizes the similarities of pathophysiological mechanisms of illnesses which exhibit similar symptoms, and the efficiency in advancing the understanding of mechanisms contributing to these illnesses by simultaneously studying multiple illnesses.
ME/CFS Centers of Excellence have the potential to explore and reveal a new class of infectious disease agents: those viral and bacterial agents which produce chronic unwellness and disability by either persisting beyond the usual and recommended course of treatment and/or incapacitate the immune system such that it is no longer able to clear the infectious agent or agents from the human body. It is, therefore, to everyone’s benefit that such Centers be funded.
According to Jason et al. (1), the societal cost of ME/CFS to the U.S. economy is approximately $7 billion per year. Therefore, from an economic point of view, it would be financially advantageous to fund ME/CFS Centers of Excellence at a fraction of this cost with the expectation that within 10 year’s time, the $7 billion annual loss to the U.S. economy would be substantially reduced or eliminated.
For these reasons, we ask everyone to support the CFSAC’s recommendation for ME/CFS Centers of Excellence.
The CFSAC approved the creation of 12 Centers based upon the presentation you may view at the following link:
http://www.immunedysfunction.org/excellence.html
We encourage you to read the identified reasons why ME/CFS Centers of Excellence should be established. Our hope is that after reading the presentation you will be a staunch supporter of these Centers, willing to inform your federal government representatives of your support for the creation of these Centers.
Thank-you.
1. Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding (2008) The Economic impact of ME/CFS: Individual and societal costs. Dynamic Medicine 7:6