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CFSAC meeting Oct 3-4, 2012

Ember

Senior Member
Messages
2,115
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 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.
 

Dolphin

Senior Member
Messages
17,567
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.
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.

The ICC document largely refers to ME/CFS or CFS research so not sure how good it is as a means to claim ME is different from CFS.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I'm posting a copy of what I said, including the resources I offered to supply to the CFSAC. But before I post this, I want to thank everyone here who offered me positive feedback on my presentation. I was so upset at the time I presented it I wasn't sure what kind of job I did.

Here's a copy of my presentation. And after it I'm adding links to the sources I said I would provide.

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.


Next, here are the sources to which I made reference.
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
 

Nielk

Senior Member
Messages
6,970
Thank you Andrew.

I know how much effort this takes. All the preparation, trying to fit it all in within the allotted time and then the delivery. I did it a year ago and it took so much out of me.

Thank you for doing this.:thumbsup:
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
This fall’s CFSAC Meeting is now available on the HHS YouTube channel. The event has been broken into various sections, listed below with the associated links. Once pending internal processes are complete, the video will be posted on the CFSAC website.

Welcome and Opening Remarks (CFSAC Fall 2012)

Public Comment on Day One- AM (CFSAC Fall 2012)

Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)

Biomarkers – An overview & Future Look (CFSAC Fall 2012)

FDA & Drug Development (CFSAC Fall 2012)

Public Comment on Day One – PM (CFSAC Fall 2012)
http://www.youtube.com/watch?v=_fIEeQBdvxM

Committee Discussion & Plans for Day Two (CFSAC Fall 2012)
http://www.youtube.com/watch?v=Fs1A6KhHInU

Opening Remarks & Agency Updates (CFSAC Fall 2012)
http://www.youtube.com/watch?v=PWBmqd8LDhg

Social Security Administration (CFSAC Fall 2012)
http://www.youtube.com/watch?v=af_r5LiIjXQ

Public Comment on Day Two (CFSAC Fall 2012)
http://www.youtube.com/watch?v=qGb0U6EaI4o

ME/CFS Organizations (CFSAC Fall 2012)
http://www.youtube.com/watch?v=MTHpny0u-XU

A Path Forward (CFSAC Fall 2012)
http://www.youtube.com/watch?v=NFaXiiSdZqI

Finalize Recommendations (CFSAC Fall 2012)
http://www.youtube.com/watch?v=CO9bO-udcY0
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Here's Andrew's list without any embedded videos, in case helpful:


This fall’s CFSAC Meeting is now available on the HHS YouTube channel. The event has been broken into various sections, listed below with the associated links. Once pending internal processes are complete, the video will be posted on the CFSAC website.

Welcome and Opening Remarks (CFSAC Fall 2012)
www.youtube.com/watch?v=4Zl2RX4URuI

Public Comment on Day One- AM (CFSAC Fall 2012)
www.youtube.com/watch?v=oIGpfvfFZ1w

Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)
www.youtube.com/watch?v=buDxhejdg90

Biomarkers – An overview & Future Look (CFSAC Fall 2012)
www.youtube.com/watch?v=01hZYq4GMtI

FDA & Drug Development (CFSAC Fall 2012)
www.youtube.com/watch?v=IGASSh7YV3s

Public Comment on Day One – PM (CFSAC Fall 2012)
www.youtube.com/watch?v=_fIEeQBdvxM

Committee Discussion & Plans for Day Two (CFSAC Fall 2012)
www.youtube.com/watch?v=Fs1A6KhHInU

Opening Remarks & Agency Updates (CFSAC Fall 2012)
www.youtube.com/watch?v=PWBmqd8LDhg

Social Security Administration (CFSAC Fall 2012)
www.youtube.com/watch?v=af_r5LiIjXQ

Public Comment on Day Two (CFSAC Fall 2012)
www.youtube.com/watch?v=qGb0U6EaI4o

ME/CFS Organizations (CFSAC Fall 2012)
www.youtube.com/watch?v=MTHpny0u-XU

A Path Forward (CFSAC Fall 2012)
www.youtube.com/watch?v=NFaXiiSdZqI

Finalize Recommendations (CFSAC Fall 2012)
www.youtube.com/watch?v=CO9bO-udcY0
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'm posting a copy of what I said, including the resources I offered to supply to the CFSAC.

Hi Andrew, I haven't seen your testimony, but your statement is spot on, and really demonstrates that the CDC are behaving ridiculously. Thanks very much for doing that. It's really a great statement, and crystallises the essential issues so succinctly.

:thumbsup:
 

Seven7

Seven
Messages
3,444
Location
USA
Can we do like a advertisement like in youtube and diffuse it in our personal media on CDC attitude for CFS? If I would know how to produce I would do something tasteful ( 2min or so) asking for answers, put pressure.