The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.
I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.
Thank you for posting this. As always, Mindy Kitei's comments were excellent! My favorite is this one "Dr. Leonard Jason of DePaul University has shown in published studies that CDC, in employing the Empirical Definition, is studying patients with Major Depressive Disorder, not patients with M.E. That’s like doing an HIV trial and none of the people are HIV positive. As a result of studying the wrong cohort, doctors are misinformed."
Dedicated to the utterly brazen hypocrisy of claiming to be interested in "CFS" while behaving the exact opposite. -------------------------------------------------http://www.cfsuntied.com/videosvictims.html
"Let me make something perfectly clear. The illness entity known as CFS, based on an outbreak of ME Plus, has never been fully investigated by anyone. Not one researcher has examined all of the evidence that caused the creation of this syndrome. NOT A SINGLE ONE. After nearly 30 years. This is a disgrace of epic proportions. A disease that has brought brutal,relentless suffering to now millions of people and yet we have evidence that has been around since the inception of the syndrome that has never been examined." -Jeri McClure Kurre
ME and CFS researchers have no means whatsoever to convince me they are sincere about resolving CFS. They have demonstrated an utter unwillingness to examine the evidence from this incident. An absolute "Failure to Respond" that grows increasingly antagonistic and obstinate as time passes.
I had been under the MISTAKEN impression that Dr Peterson and his Simmaron Research would always maintain some interest in this phenomenon, if nothing more than for "Old times sake"
But Simmaron Research has taken the lead in turning a blind eye to what happened on this spot. They have no right to be picky about "deselecting" critical elements that were present.
Having Hillary Johnson insultingly say I am "stealing" quotes from her book, as I explain the circumstances has crossed the line of bizarre counterproductive suppression of evidence.
There is an objective measure for having a sincere interest in solving CFS, and that is the willingness to discuss the circumstances that resulted in the creation of the syndrome.
NO WILLINGNESS = NO SINCERITY.
Simmaron Research and Hillary Johnson completely FAIL on that score.
Mary Schweitzer has a vague sense of what just hit you guys at the FDA meeting. How the attendees literally forced the FDA and the CDC to "agree" that CFS is "too heterogeneous" to be a discrete and diagnosable entity. Moving CFS below the minimum qualifications for "Syndromhood" (and for drug testing)
But she doesn't understand her own part in it.
This was the inevitable result of "But Erik, CFS didn't start anywhere. There were other clusters"
The other clusters did not have the evidence Dr Peterson did, and they were not the basis of the new syndrome.
By saying so, Mary Schweitzer and the other CFS advocates made the CDC's dream become reality. "CFS was based on nothing but opinons" which, as anyone can see who read "Hoosier's Weeb"*, is not how it really happened.
http://slightlyalive.blogspot.com/
(*Slightly altered to avoid copyright infringement)
Thank you for posting this. As always, Mindy Kitei's comments were excellent! My favorite is this one "Dr. Leonard Jason of DePaul University has shown in published studies that CDC, in employing the Empirical Definition, is studying patients with Major Depressive Disorder, not patients with M.E. That’s like doing an HIV trial and none of the people are HIV positive. As a result of studying the wrong cohort, doctors are misinformed."
ReplyDeletePatricia
Thank you Mindy.
ReplyDelete"International Disinformation Day".
ReplyDeleteDedicated to the utterly brazen hypocrisy of claiming to be interested in "CFS" while behaving the exact opposite.
-------------------------------------------------http://www.cfsuntied.com/videosvictims.html
"Let me make something perfectly clear. The illness entity known as CFS, based on an outbreak of ME Plus, has never been fully investigated by
anyone. Not one researcher has examined all of the evidence that caused the creation of this syndrome. NOT A SINGLE ONE. After nearly 30
years. This is a disgrace of epic proportions. A disease that has brought brutal,relentless suffering to now millions of people and yet we have
evidence that has been around since the inception of the syndrome that has never been examined."
-Jeri McClure Kurre
I ask that the missing posts be restored.
ReplyDeleteIn the interests of truth.
ME and CFS researchers have no means whatsoever to convince me they are sincere about resolving CFS.
ReplyDeleteThey have demonstrated an utter unwillingness to examine the evidence from this incident.
An absolute "Failure to Respond" that grows increasingly antagonistic and obstinate as time passes.
I had been under the MISTAKEN impression that Dr Peterson and his Simmaron Research would always maintain some interest in this phenomenon, if nothing more than for "Old times sake"
But Simmaron Research has taken the lead in turning a blind eye to what happened on this spot.
They have no right to be picky about "deselecting" critical elements that were present.
Having Hillary Johnson insultingly say I am "stealing" quotes from her book, as I explain the circumstances has crossed the line of bizarre counterproductive suppression of evidence.
There is an objective measure for having a sincere interest in solving CFS, and that is the willingness to discuss the circumstances that resulted in the creation of the syndrome.
NO WILLINGNESS = NO SINCERITY.
Simmaron Research and Hillary Johnson completely FAIL on that score.
http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related
Mary Schweitzer has a vague sense of what just hit you guys at the FDA meeting.
ReplyDeleteHow the attendees literally forced the FDA and the CDC to "agree" that CFS is "too heterogeneous" to be a discrete and diagnosable entity. Moving CFS below the minimum qualifications for "Syndromhood" (and for drug testing)
But she doesn't understand her own part in it.
This was the inevitable result of "But Erik, CFS didn't start anywhere. There were other clusters"
The other clusters did not have the evidence Dr Peterson did, and they were not the basis of the new syndrome.
By saying so, Mary Schweitzer and the other CFS advocates made the CDC's dream become reality.
"CFS was based on nothing but opinons" which, as anyone can see who read "Hoosier's Weeb"*, is not how it really happened.
http://slightlyalive.blogspot.com/
(*Slightly altered to avoid copyright infringement)