Nielk
Senior Member
- Messages
- 6,970
http://slightlyalive.blogspot.com/2014/01/testimony-to-iom-january-2014.html
Excerpt:
NIAID's EBV specialist, Stephen Straus, who had coined the name CFS in 1986, decided that the disease was somatic (the physical expression of a psychiatric problem) - having to do with depression and/or stress. For the next three decades, what little funding NIH allocated went to fatigue studies or studies of stress hormones. As for cluster outbreaks, it was decided they were outbreaks of friendly diagnoses.
Over at CDC, the first demographic efforts came up with a figure of 10-50,000 patients with CFS, all white upper middle class women - yuppies overdoing it trying to have it all. Critics noted that the method CDC used was to ask physicians for information about patients they saw with CFS, which heavily tilted the data set towards those with the means and determination to find someone who could diagnose and treat them.
Nearly 20 years ago, Congress asked CDC to do a study on children and adolescents with this disease. CDC spent the money on another project entirely, and got in trouble with Congress. The money was reinstated, but not the projects. Dr. William Reeves, in charge of CFS at CDC, explained that he didn't think enough school-aged children and teenagers got the disease to be worth a study.
In 1999 Leonard Jason and a team at DePaul estimated that roughly 800,000 American adults probably had the disease, and the disease was equal opportunity - all income groups; all ethnicities. This estimate has been in use ever since – today, the DePaul estimate would put the number of patients closer to 1.3 million.
In 2003, Canada adopted its version of ICD-10, which included CFS, with M.E., in neurology. A committee was convened of clinician experts, including several from the US. The result is called the Canadian Consensus Criteria and does an admirable job of capturing the complexity of this illness.
In 2004, CFSAC recommended to the secretary of HHS that the US adopt the Canadian Consensus Criteria- and that's when we found out about what had happened to the money allocated to CDC to study young people. The recommendation was repeated again two years ago – but HHS’s response was to convene this IOM committee.
The money had been spent on closed annual meetings at a resort. According to Dr. Reeves, they had created a new definition for CFS (the “New International Definition”). Eventually it devolved into a set of questionnaires that Reeves claimed "operationalized" the Fukuda (1994) definition, but they did not. Comparing the Canadian criteria with Reeves' questionnaires, Jason found that Reeves lost the bottom 30% of patients, while inappropriately including patients with primary mood disorders
Researchers never used the Reeves questionnaires. The funds and the time spent were wasted.
I am here to as you not to repeat the errors of the past: Dig Deeper. M.E. experts desperately need funding to replicate and further new research on exercise physiology, immunology, virology, genomics, and intricate metabolic research. Please do not repeat the past – please do not waste money on something that researchers do not want and will not use.
Excerpt:
NIAID's EBV specialist, Stephen Straus, who had coined the name CFS in 1986, decided that the disease was somatic (the physical expression of a psychiatric problem) - having to do with depression and/or stress. For the next three decades, what little funding NIH allocated went to fatigue studies or studies of stress hormones. As for cluster outbreaks, it was decided they were outbreaks of friendly diagnoses.
Over at CDC, the first demographic efforts came up with a figure of 10-50,000 patients with CFS, all white upper middle class women - yuppies overdoing it trying to have it all. Critics noted that the method CDC used was to ask physicians for information about patients they saw with CFS, which heavily tilted the data set towards those with the means and determination to find someone who could diagnose and treat them.
Nearly 20 years ago, Congress asked CDC to do a study on children and adolescents with this disease. CDC spent the money on another project entirely, and got in trouble with Congress. The money was reinstated, but not the projects. Dr. William Reeves, in charge of CFS at CDC, explained that he didn't think enough school-aged children and teenagers got the disease to be worth a study.
In 1999 Leonard Jason and a team at DePaul estimated that roughly 800,000 American adults probably had the disease, and the disease was equal opportunity - all income groups; all ethnicities. This estimate has been in use ever since – today, the DePaul estimate would put the number of patients closer to 1.3 million.
In 2003, Canada adopted its version of ICD-10, which included CFS, with M.E., in neurology. A committee was convened of clinician experts, including several from the US. The result is called the Canadian Consensus Criteria and does an admirable job of capturing the complexity of this illness.
In 2004, CFSAC recommended to the secretary of HHS that the US adopt the Canadian Consensus Criteria- and that's when we found out about what had happened to the money allocated to CDC to study young people. The recommendation was repeated again two years ago – but HHS’s response was to convene this IOM committee.
The money had been spent on closed annual meetings at a resort. According to Dr. Reeves, they had created a new definition for CFS (the “New International Definition”). Eventually it devolved into a set of questionnaires that Reeves claimed "operationalized" the Fukuda (1994) definition, but they did not. Comparing the Canadian criteria with Reeves' questionnaires, Jason found that Reeves lost the bottom 30% of patients, while inappropriately including patients with primary mood disorders
Researchers never used the Reeves questionnaires. The funds and the time spent were wasted.
I am here to as you not to repeat the errors of the past: Dig Deeper. M.E. experts desperately need funding to replicate and further new research on exercise physiology, immunology, virology, genomics, and intricate metabolic research. Please do not repeat the past – please do not waste money on something that researchers do not want and will not use.
