Saturday, March 26, 2011
Tuesday, March 22, 2011
Monday, March 21, 2011
Sunday, March 20, 2011
The real question is why does a patient have to sort all this out - especially on a subject that is so basic. What is the disconnect here - and why? My answer? This is all part of a continuing "disinformation" trailing after this illness. Even those partial towards this illness have trouble seeing it.
ME/CFS is a complex, neuro-immune illness that is very likely infectious in nature, and is associated with profound immunological dysfunction. There is an existing means by which this patient population can be accurately identified -the Canadian Consensus Criteria - and cytokine/NK cell panels that can identify those with these immune dysfunctions. These patients have abnormal areas of white matter on spect scans, diastolic dysfunction, aberrant proteins in ttheir spinal fluid, viral activation, and most likely a retrovirus and perhaps more than one. These patients lead a non-life ("a living death") for many years and then die an early death, 25 years short of average life expectancy. The pattern does not vary much. Certainly some people get better, often transiently, but few people who meet the Canadian criteria return anywhere near to their former selves, especially if left untreated. I personally would like to meet one patient who has completely recovered from this neuro-immune illness. Some say that those who escape have gone back into society and gotten lost in the crowd. I say those who have disappeared are more likely to be six feet under or entombed in darkened rooms.
Friday, March 18, 2011
Saturday, March 12, 2011
CFSAC Oral Testimony October 2009
"Hello. I’m Dr. Joan Grobstein. I’ve been a physician since 1977, last working at Children’s Hospital of Philadelphia Division of Neonatology. I’ve had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1999. I’m a doctor and a patient. I‘m going to talk about science and ME/CFS.
To be blunt, scientific research on ME/CFS is a mess. Given how little time I have, I’ll focus mainly on the worst offender, the CDC. The CDC has underfunded and underinvestigated this disease since their initial involvement in the mid-‘80s. They’ve also failed to correctly define the disease. In 1994, they created the Fukuda definition, which is flawed but which has been used to define the CFS data set for fifteen years, resulting in a significant body of research. However, oddly, in 2005 the CDC redefined the data set. Perhaps they noticed research using the Fukuda definition seems to suggest physiologic explanations for ME/CFS symptoms. One wonders. In any case, using the new Reeves 2005 “empirical” definition, their estimate of the number of people with CFS in the United States suddenly jumped from one million to 4 million people. Basically, they created a new, unverified definition which defined a new, much larger data set, and they still used the name CFS for this very different data set. This is outrageous! This isn’t science--it’s a shell game.
Dr. Peter White was involved in a similar definitional misadventure in the ‘90s, also muddying the research waters. He helped develop the Oxford definition, which was actually a description of Idiopathic Chronic Fatigue, which is not CFS. Putting a prestigious name on a definition does not necessarily give it a useful meaning.
As Dr. Mikovits and her colleagues have shown so brilliantly in the past month, when researchers look at patients that meet the Fukuda & Canadian consensus criteria, they can quickly begin to discover potential mechanisms and possible treatments for this severe illness.
So how do we find our way out of this mess? We need to tidy up the literature, so we know when we’re talking about apples and when we’re talking about oranges. I suggest the following solution: Until we have a better name, call the cohort of patients who meet the Fukuda criteria: CFS-Fukuda; the Canadian Consensus cohort: CFS/ME; the Ramsey cohort: ME; the Oxford criteria cohort: Idiopathic Chronic Fatigue; and the Reeves definition cohort: Reeves’ disease. After removing CFS-Fukuda, CFS/ME and ME from the Reeves cohort, Reeves’ disease will probably consist of a group of people with Idiopathic Chronic Fatigue, various other undiagnosed conditions, and some, but not all, people with major depressive disorder. These people deserve study and treatment, but they do not have ME/CFS.
It is very important that any ME/CFS study published states in its abstract which group is being studied. A retrospective review of all previous CFS studies should be funded in order to determine what group of patients were actually studied. Research on Idiopathic Chronic Fatigue is not relevant to ME/CFS.
I suggest the following recommendations to Secretary Sebelius:
1. No taxpayer dollars should be wasted on ME/CFS research which uses the Reeves definition. All federally-funded research should use the Fukuda criteria & the Canadian Consensus Definition.
2. Abandon the CDC’s current proposed 5 year plan. Ensure that this Committee’s previous recommendation for a change in the CFS leadership at the CDC actually happens. The new leadership should propose a new 5 year plan which should then be reviewed by an unbiased panel. Meanwhile, make the taxpayer-funded data that the CDC has already collected available to all researchers to analyze.
3. If the XMRV connection to ME/CFS is confirmed, initiate a congressional inquiry into why Elaine DeFreitas’ research into retroviruses and ME/CFS was not pursued in the early ‘90s. Many people may have been harmed by this decision.
4. Increase funding for ME/CFS research. Patients and doctors need more information. Designated funding for a collaborative trials network is imperative, as is the retrospective review previously discussed.
I could say much more, but my time is up. I have submitted written testimony. Thank you."