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.
I want to consider Dr. Joan Grobstein once again - as what she says is so important. I don't pretend to be able to articulate issues as well as her - and I don't think there is a finer mind in analyzing the current situation with ME/CFS. Dr. Grobstein was a pediatric physician at CHOP in Philadelphia (forced out of work by ME/CFS), one of the finest hospitals in the world (I know firsthand.). Despite being sick for twelve years, she can still reach out in any situation and put her finger precisely on the pulse. It is unfortunate that she is so ill - as the good guys could use more of her insights and expertise. For the past few years Dr. Grobstein has struggled to make semi-annual trips to DC to testify before the CFSAC committee. (I tell her not to waste her time and energy. When was the last time that a committee - particularly a government committee - accomplished anything? The short answer is - never.) Dr. Grobstein persists in the face of this known reality, and here are several of her testimonies.
The video of her October 2010 testimony can be found here. On this HHS website Dr. Grobstein is identified as "speaker 2" - an Orwellian reduction of this very smart woman. This video is worth watching. Being a government website, it, of course, takes forever to work, if in fact it does work.
Here is a written statement of Dr. Grobstein's 2009 presentation. At the moment I cannot find the video although I am still looking for it.
ME/CFS is presented to the world, especially by the press, as an astounding set of confusions. The issues are not as difficult as they are made out to be. If one is seeking clarity, one can start here - with the Canadian Consensus Criteria. This 2005 CCC criteria gives an unambiguous basis by which ME/CFS patients can be identified. Who can't see this - and why?
I hope you can find the video of Dr. Grobstein's 2009 testimony. I found it earthshaking. I had been suffering with M.E. for so long and thinking there was no one who understood what I was going through, and then I saw Dr. Grobstein's video. It shook me to my core. She not only understood; she articulated it perfectly. I felt that no one watching that video could fail to understand. I'll look for that video again too. It needs to be seen again and again.
It's a shame the video of Dr. Grobstein's October 2009 CFSAC testimony is no longer readily available on YouTube. I couldn't find it, either, the last time I looked. It was a stunning tour de force and coined the term "Reeves' Disease" for the mishmash the CDC has been studying since 2005 and still calling CFS.
Thanks for giving Dr. Grobstein more well-deserved recognition.
Anyone remember Luminescentfeeling on Youtube? He had a great collection of videos but is no longer active. Pity. Think i watched most of the CFSAC 2009 thanks to him.
I can answer that! "Who can't see this - and why?"
A strange "mystery illness" paralyzed a small town at north lake Tahoe, many years ago. Dr Cheney and Dr Peterson called the CDC for help. Eventually the CDC sent two epidemiologists, who made clear by their disinterest in the illness, that they considered this visit to be more of "working vacation" than an actual investigation. When they left, saying there was "insufficient evidence for an epidemic", a strange thing happened. Although the ILLNESS hadn't gone away, people's FEAR of it did. Not because of what they observed, not because anything had really changed, but because of what they WANTED to believe. That is why they can't see this - and why. It is because they choose not to.
found it! http://www.hhs.gov/advcomcfs/meetings/index.html Look under CFSAC Oct 29 - 30 2009. Click Day 1. I think you need Real Player (and a free download comes up if you don't have it). Dr Grobstein is the 5th public speaker, at 3h 35min.
I remember her as being an outstanding speaker too - right to the heart of the different issues at play.
Her evisceration of the "Reevees definition" is well worth a (re-)listen.
here's the link to her written testimony http://www.hhs.gov/advcomcfs/meetings/presentations/joangrobstein.pdf
More relevant info from the CFSAC Oct 2009 meeting. In looking for Dr Joan Grobstein's video testimony, I came across the minutes, which include this chart. It gives a good recent history of CFSAC recommendations and progress on them.
Chris, you might check "comments", then "spam" on your blogger dashboard. I use blogger, too, and for unknown reasons, comments sometimes go to spam, although I have not set any reasons for it. If you click "not spam" the comments will post.
I hope you can find the video of Dr. Grobstein's 2009 testimony. I found it earthshaking. I had been suffering with M.E. for so long and thinking there was no one who understood what I was going through, and then I saw Dr. Grobstein's video. It shook me to my core. She not only understood; she articulated it perfectly. I felt that no one watching that video could fail to understand. I'll look for that video again too. It needs to be seen again and again.
ReplyDeleteDr. Grobstein is a true hero.
Patricia Carter
It's a shame the video of Dr. Grobstein's October 2009 CFSAC testimony is no longer readily available on YouTube. I couldn't find it, either, the last time I looked. It was a stunning tour de force and coined the term "Reeves' Disease" for the mishmash the CDC has been studying since 2005 and still calling CFS.
ReplyDeleteThanks for giving Dr. Grobstein more well-deserved recognition.
Anyone remember Luminescentfeeling on Youtube? He had a great collection of videos but is no longer active. Pity. Think i watched most of the CFSAC 2009 thanks to him.
ReplyDeleteI can answer that!
ReplyDelete"Who can't see this - and why?"
A strange "mystery illness" paralyzed a small town at north lake Tahoe, many years ago.
Dr Cheney and Dr Peterson called the CDC for help. Eventually the CDC sent two epidemiologists, who made clear by their disinterest in the illness, that they considered this visit to be more of "working vacation" than an actual investigation.
When they left, saying there was "insufficient evidence for an epidemic", a strange thing happened. Although the ILLNESS hadn't gone away, people's FEAR of it did.
Not because of what they observed, not because anything had really changed, but because of what they WANTED to believe.
That is why they can't see this - and why.
It is because they choose not to.
found it! http://www.hhs.gov/advcomcfs/meetings/index.html Look under CFSAC Oct 29 - 30 2009. Click Day 1. I think you need Real Player (and a free download comes up if you don't have it). Dr Grobstein is the 5th public speaker, at 3h 35min.
ReplyDeleteI remember her as being an outstanding speaker too - right to the heart of the different issues at play.
Her evisceration of the "Reevees definition" is well worth a (re-)listen.
here's the link to her written testimony http://www.hhs.gov/advcomcfs/meetings/presentations/joangrobstein.pdf
More relevant info from the CFSAC Oct 2009 meeting. In looking for Dr Joan Grobstein's video testimony, I came across the minutes, which include this chart. It gives a good recent history of CFSAC recommendations and progress on them.
ReplyDeletehttp://www.hhs.gov/advcomcfs/recommendations/10292009.pdf
CFSAC Recommendations since Sept 2004 sorted by focus, area, agency and progress
Chris, you might check "comments", then "spam" on your blogger dashboard. I use blogger, too, and for unknown reasons, comments sometimes go to spam, although I have not set any reasons for it. If you click "not spam" the comments will post.
ReplyDeletethanks oerganix, that was the answer.
ReplyDeleteChris
Dr. Grobstein rocks! Thank you for highlighting her contributions.
ReplyDelete