Better research is needed
“Lastly, I’m not a chronic fatigue doctor, but I have learned a lot about chronic fatigue in the last six months and have spoken to a lot of patients. I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease. It usually starts with a viral-like illness. If XMRV is not the causative agent — and it may well not be — there is still need by other groups to look for the next agent which may be the case.” – Dr. Harvey Alter, NIH Investigator, FDA Blood Products Advisory Committee meeting, 2010,
“It’s a shame, in fact, that today the CDC’s budget to study this illness is half of what it was in 2005. And the NIH support for studying this illness is less than it was several years ago. It’s a shame because the tools to study it today are nothing like they were 20 years ago.” – Dr. Anthony Komaroff, Harvard Medical School, Senate briefing in 2008.
“… I would like to point out that one of the cardinal features of myalgic encephalomyelitis, neurological abnormalities, was reported to the original CDC representatives who came to Incline Village to confer with Dr. Cheney and Dr. Peterson; however, the committee that was formed by the CDC to produce a definition totally ignored these findings, which had been verified at the time by Dr. Sheila Bastien….” – Steven Du Pre, Vice President of the California Capital Area M.E./CFIDS Association, a 2005 letter to Dr. J. Gerberding of the CDC.
“The harsh reality is that research on CFS, viruses, and cardiac abnormalities is under-funded, ignored and at times outright dismissed by those charged with informing the public of the dangers of disease.” – Dr. Mary Schweitzer, patient, testimony to Chronic Fatigue Syndrome Advisory Committee, 2005.
Inform people of the seriousness of this illness
“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to Multiple Sclerosis, AIDS, end-stage Renal Failure, Chronic Pulmonary Disease.” – Dr. William Reeves, former CDC Chief of Viral Diseases Branch, 2006 Press Conference
“They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, University of Miami, 2006 Press Conference
“Chronic Fatigue Syndrome is a serious illness; it’s a real illness that’s affecting at least 1 million Americans.” - Dr. Julie Gerberding, former Director of CDC, 2006 Press Conference
“The bad news is we don’t know what causes it or how to treat it successfully. But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can just imagine that they have, and it’s not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over.” – Dr. Anthony Komaroff, Harvard Medical School, 2006 Press Conference
“We need the public to be told now that there is a serious disease out there, and that nearly 1 million people in the United States have it. They need to be told of the uncertainty about the cause, prognosis, and cure. They need to be told what they should be tested for to rule out other diseases. And they need to know that patients die.” - Dr. Mary Schweitzer, patient, testimony to Chronic Fatigue Syndrome Advisory Committee, 2005.
Physicians need to be educated
“Given the fact that less then 20% of the patients that have this illness actually carry the diagnosis, have been to the doctor and been diagnosed, it’s clear we have a long, long way to go.” – Dr. Nancy Klimas, University of Miami, 2006 CDC Press Conference
“If you listen carefully to the patient, they will tell you the diagnosis.” – William Osler, Physician in Chief at Johns Hopkins Hospital in the late 1880s.
“Many patients, like that first patient I saw in 1983, say, in so many words, ‘It all started with that flu, that virus.’ It surprises me when some of my colleagues hear that from a patient and don’t take it seriously.” – Dr. Anthony Komaroff, Harvard Medical School, Senate briefing in 2008.
“In spite of all we have learned about CFS, and the promised research on the horizon… there are very few mechanisms to share this knowledge with physicians and other providers on the front line of patient care. Armed with our current information and a little confidence, I know my peers can competently and capably provide better care for patients with CFS.” – Dr. Lucinda Bateman, Utah Physician, Senate briefing in 2008.
“It can be overwhelming to be a CFS expert but not because of the challenging nature of the illness or the patients I greatly respect who have trusted me with that label. But because I am only one faced with thousands in need. And there are too few of us who identify ourselves as CFS providers to meet the demands of care.” – Dr. Lucinda Bateman, Utah Physician, Senate briefing in 2008.
A new name and research criteria is needed
“I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease. It usually starts with a viral-like illness. If XMRV is not the causative agent — and it may well not be — there is still need by other groups to look for the next agent which may be the case.” – Dr. Harvey Alter, testimony to the FDA Blood Products Advisory Committee, 2010.
“Nevertheless, the construction of the CFS label has resulted in a disproportionate allocations of funding towards psychosocial models of the illness. It has been left to a small minority of pioneer researchers—funded by smaller charities to identity the physiological causes of M.E. and try to find a cure.” – Dr. Vance Spence, Chairman of the ME Research UK, forward in the book “Shattered” in 2003.