SpecialK82
Ohio, USA
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Couldn't agree more Sing - to say that this is unfair and tragic is an understatement!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I only wish that we patients could agree with our own expert doctors and scientists. So far, our advocates have contradicted them.There is such irony in how we with cognitive dysfunction and memory issues have to be the ones to analyze, correct and propose to those who are supposed to be fully capable, competent and knowledgable. The doctors, bureaucrats and scientists have functioned as if they were more handicapped than we are, but then they use their real abilities and powers to try to knock us down. I am tired of this!
I wish people like Byron Hyde would publish in peer-reviewed journals more. Doctors can make all sorts of claims but without getting published, with the rigors involved, the claims are not generally seen as good evidence.I only wish that we patients could agree with our own expert doctors and scientists. So far, our advocates have contradicted them.
In the Joint Request for Action that was sent to Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee in June, the ME/CFS Community wrote that “many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS.” They wrote too of “CFS, known as myalgic encephalomyelitis or ME/CFS,” and they argued before the NCHS last September that “when properly defined, CFS is the same as ME.”
The ICC panel of experts disagrees. They contend, “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.” The panel recommends that “patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
Dr. Unger noted almost a year ago that the “opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities.” She added, “We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.”
We keep hearing that our disputes impede progress.
Hello. My name is Andrew ___. Thank you for allowing me to speak.
In 1984 an outbreak of a flu-like illness began in Lake Tahoe and nearby areas. A review of 259 patients, published in Annals of Internal Medicine stated: “Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system.“ A government committee decided to invent a new term that would cover this outbreak. The term they invented was “Chronic Fatigue Syndrome.”
More than a decade after the outbreak, Prime Time Live presented a television news story about Chronic Fatigue Syndrome. They conducted a telephone interview with William Reeves of the CDC, who told them that the patients in Lake Tahoe were actually suffering from hysteria. In the same news story, Stephen Strauss of the NIH said CFS is so subjective that patients will commonly feel better no matter what you give them. These are not the kind of beliefs that give one a sense of any seriousness or urgency in solving a problem, and I began to wonder if their ongoing research was anything more than just going through the motions.
So what has followed these events? NIH funding for CFS scrapes the bottom of the barrel, at about the same level as hay fever. The CDC ignores even its own definition of CFS, and uses Oxford Criteria Studies to justify its views about exercise as a treatment.
For those of you not familiar with the Oxford Criteria, it was invented in England and has only one symptom: fatigue. This is not how we define CFS in the United States. And so citing these studies is no more appropriate than citing generic coughing studies to make conclusions about how to treat asthma, TB, or pertussis. But that’s what the CDC did. And they even created a special toolkit for doctors, with treatment suggestions based on this research.
Recently, the CFSAC recommended that the toolkit be removed from the CDC website. It has not been removed. But they removed a different page where they cited Fulcher and White (1997) to explain their support of exercise as treatment. So now the conclusion that was drawn from the Oxford Criteria study remains, but with no real way to contest it because the citation is gone. This is not what many of us hoped for when we heard the website would be reviewed. This is like painting over rotting wood, and saying it’s a repair.
In closing, I want to thank the CFSAC members for volunteering their time. Also, during my brief talk today, I mentioned a Prime Time news story, two studies, and the Oxford Criteria. If CFSAC members would like to see any of these, please feel free to email me using my contact information.
Thank you for letting me speak.
The review of 259 patients, published in Annals of Internal Medicine: http://www.ncbi.nlm.nih.gov/pubmed?term=Ann Intern Med. 1992 Jan 15;116(2):103-13
Prime Time Live presented a television news story about Chronic Fatigue Syndrome: vimeo.com: 13048135
Oxford Criteria: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/
Fulcher and White (1997): http://www.bmj.com/content/314/7095/1647
I'm posting a copy of what I said, including the resources I offered to supply to the CFSAC.