Subject:  Important Info re CFIDS/M.E., Children, Mortality |
Author:
Leeza
|
[
Next Thread |
Previous Thread |
Next Message |
Previous Message
]
Date Posted: Wednesday, October 01, 10:57:08am
Comments from the National CFIDS/M.E. Foundation (NCF)
General Comments:
Overall, CFS has not been a priority. Although some specialists refer to it as serious and debilitating, from reports from patients nationwide, the majority of physicians still do not take it seriously. Acute infectious diseases like those associated with bioterrorism, as opposed to chronic diseases, have grabbed nearly all the attention of the media and government officials. We need to allocate more funds and resources to study these more prevalent, but hidden, chronic diseases.
We would like to make two issues an immediate priority:
The first is the name change. Much has been said about the problems with the name and the word fatigue in particular and it is time to move beyond these discussions and toward resolution. Tom Hennessy, who began the name change movement and started Awareness Day, recognized the problems with the name early on. Our organization, the ME Society of America, the Co-Cure Project and many patients we have heard from will not accept any branding or marketing or promotion of chronic fatigue syndrome, CFIDS, or CFS.
An appropriate name and accurate diagnosis and classification are essential for progress to be made. But beyond problems with the name, ambiguities in the definition have produced widespread discrepancies in epidemiological studies and all issues of diagnosis, treatment, research, disability, etc. hinge on the definition. CFS as defined by the Fukuda criteria has been
shown to be a heterogeneous condition, and studies of subgroups have revealed marked differences in types and severity of symptoms, immunological abnormalities, prognosis and response to treatment. It is critical to use a means of differentiation via subgrouping to end the
confusion.
The NCF, the ME Society, and Co-Cure fully endorse the proposal by the Name Change Workgroup. Patients have historically called for the recognition of ME (not just changing the name to ME). ME - the term and description - have had recognition in the medical literature for several decades and is a more specific and appropriate diagnosis than chronic fatigue syndrome, as it describes the illness that causes post-exertional sickness and neurological problems, not just fatigue.
While efforts have stalled waiting for the formation of this committee, the Name Change Workgroup has worked commendably, and we would especially like to thank Carol Lavrich as Chair and Dr. Leonard Jason, for their considerable dedication to this endeavor. We would ask that the NCW be supported so that they may continue their work and that this committee hold a name change session as promised at the last CFSCC meeting.
And now turning to the second issue: Children. This is a quote from Sara Baas' testimony at a CFSCC meeting:
"My name is Sara Bass and I am President of The Connecticut CFIDS Association, Inc. I am standing before you today, as I did 2 years ago, to speak on the subject of pediatric CFIDS since, from all that I can tell, the Department of Health and Human Services has done next to nothing in the past 2 years to study, address or help conquer pediatric CFIDS, or to promote physician, school or public education and awareness of this problem or to
even acknowledge that it exists."
This was presented in 1998. I stand before you today, 5 years later, and can say the same thing. The effects can be devastating in children, resulting in serious disruption of their education and social development.
Minimal attention has been paid to critical features of CFS in children and few epidemiological studies on children and adolescents with CFS have been conducted. The first step is to develop a pediatric case definition, which from past experience we know Dr. Bell would be willing to work to help develop. The issue of pediatric case definition requires prompt attention and its own taskforce.
Mortality
Most CFS investigators recognize CFS as a serious and debilitating illness, but not one that may be fatal. However, researchers at DePaul University, led by Dr. Leonard Jason, have been looking into mortality rates of persons with CFS.
They have been analyzing the National CFIDS Foundation's Memorial List in order to better categorize causes of death. The DePaul University team uncovered some significant findings. They found that approximately 60% of
deaths were caused by heart failure, cancer and suicide. But of even more importance, they discovered that those dying of cancer and suicide were considerably younger than individuals who die of these conditions in the general population.
Many serious cardio-circirculatory and immunological abnormalities in patients with CFS have been discovered, which are known to increase the occurrence of other health conditions and even decrease patient's life expectancy. The findings are significant and this issue warrants further investigations.
Dr. Betty Dowsett, a well-known M.E. specialist in England who has seen thousands of patients over several decades, has reported in a paper titled "The Late Effects of ME," that 10% of long term patients die of organ failure, usually cardiac or pancreatic failure. She also states that the large number of suicides in young people with CFS is due to the "climate of disbelief."
Summary
CFS is now recognized and we are getting some insights into what some of the underlying causes are. But much more remains to be done, and this committee has the opportunity to be a catalyst.
We look forward to direction and leadership from the current DHHS administration. Most of the people who are currently in charge are new and should not be constantly blamed or lambasted for past problems. We cannot hold them personally responsible for the past - but we can hold them
responsible within the Department that they represent for insuring that there is real progress which will help patients - both now and in the future. This committee can advise and organizations, advocates and patients can participate, but HHS has to act.
Thank you for your time and attention.
Jill McLaughlin
Executive Director
The National CFIDS Foundation, Inc.
http://www.NCF-net.org
[
Next Thread |
Previous Thread |
Next Message |
Previous Message
]
| |
Feedback: 