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Article: The Patient Side: WPI Clinical Director Dr. Deckoff-Jones Talks
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That would be very exciting....I've got to think inflammation (can we say neuro-inflammation) plays a big role.....throwing some things out of whack in some patients and others out in other patients - but if you can get at the source.......
Reply to Cloud, then Danny
Cloud, the idea of renting a big house with rooms is one idea, but I think we'd need a staff of some kind, so I am thinking of an inexpensive hostel for patients and families. Some medical centers have them nearby. Or if those who know Reno or travel there could try to identify some places that would be useful--a list of rooms with kitchenettes and weekly rates, or inexpensive short term housing?
Danny, highlighted for me were the same ideas you pointed out; Dr. Deckoff-Jones noting that those who seem to be doing the worst are those who are pursuing various expensive experimental treatments--How doing so is very stressful emotionally, physically and financially, with the swings between hope and despair. But some may say that those pursuing expensive experimental treatments may be sicker to begin with. I actually doubt this because financial resources don't cluster with one group, and it would seem even less likely to be the sickest. Is my logic breaking down?
And I absolutely agree with the kind of Zen-like balance it is best to return to as much as possible, or else there is an immediate pay back with serious stress and PEM. The more badly I am doing, the more frightening it is, or it certainly would be if I took a "normal" attitude to it-- but I need to keep letting go of my fears and dire conclusions, no matter how rational they seem.
Trust in the unknown no matter what, seems to be the ticket. And of course, doing the best I can. If normal people knew the efforts I/we make to do ordinary things, they'd be very surprised and would probably have more compassion. But just try to explain to them, and, in my experience anyway, the truth most often gets lost in the attempt to communicate it. Guilt, denial and projection come in. Personally, I've found sometimes the truth is better communicated by not trying to explain. So there too, a Zen-like silence or letting be can actually help the communication. And if I were even more of a Zen kind of practitioner, I might know which situation calls for which approach, because there is no one best way, consistently, to deal with this!
Cloud, the idea of renting a big house with rooms is one idea, but I think we'd need a staff of some kind, so I am thinking of an inexpensive hostel for patients and families. Some medical centers have them nearby. Or if those who know Reno or travel there could try to identify some places that would be useful--a list of rooms with kitchenettes and weekly rates, or inexpensive short term housing?
Danny, highlighted for me were the same ideas you pointed out; Dr. Deckoff-Jones noting that those who seem to be doing the worst are those who are pursuing various expensive experimental treatments--How doing so is very stressful emotionally, physically and financially, with the swings between hope and despair. But some may say that those pursuing expensive experimental treatments may be sicker to begin with. I actually doubt this because financial resources don't cluster with one group, and it would seem even less likely to be the sickest. Is my logic breaking down?
And I absolutely agree with the kind of Zen-like balance it is best to return to as much as possible, or else there is an immediate pay back with serious stress and PEM. The more badly I am doing, the more frightening it is, or it certainly would be if I took a "normal" attitude to it-- but I need to keep letting go of my fears and dire conclusions, no matter how rational they seem.
Trust in the unknown no matter what, seems to be the ticket. And of course, doing the best I can. If normal people knew the efforts I/we make to do ordinary things, they'd be very surprised and would probably have more compassion. But just try to explain to them, and, in my experience anyway, the truth most often gets lost in the attempt to communicate it. Guilt, denial and projection come in. Personally, I've found sometimes the truth is better communicated by not trying to explain. So there too, a Zen-like silence or letting be can actually help the communication. And if I were even more of a Zen kind of practitioner, I might know which situation calls for which approach, because there is no one best way, consistently, to deal with this!
This interview has got me thinking hard, about something I've been contemplating since I first heard WPI was setting up a clinic. Should I approach them about becoming one of their physicians?
..."I am looking for family practitioners, internists, pediatricians and emergency physicians who are compassionate, capable of creative thinking and motivated by a need to serve. Also a need to learn. I am currently talking to several doctors, with and without experience treating the conditions in question."
I'm not a perfect fit to these categories, being an anesthesiologist, but my fellowship training in pain medicine could be useful. And, I've got something I think might be a good qualification: I have CFS (with chronic pain ala fibromyalgia), had it for almost 18 years now, throughout my entire medical training and what minimal career I've been able to sustain. I have the compassion and the need to serve. I have an open mind in medical matters, am strongly interested in non-traditional approaches while being critical minded about all approaches, whether mainstream or "alternative."
What do you all think? Would having your physician be a fellow CFS sufferer be a plus to you? While being fortunate in being less debilitated than many, I do need to take care to not overdo too much. At least I should. I imagine working in an environment where I don't need to stay "in the closet" about my condition would be liberating, and I would like being able to help some of my fellow CFSers. But I would need to learn a lot first, if they were interested. Patient expectations will be very high for this new clinic! Rambling a bit as I mull this over. Thanks for "listening."
..."I am looking for family practitioners, internists, pediatricians and emergency physicians who are compassionate, capable of creative thinking and motivated by a need to serve. Also a need to learn. I am currently talking to several doctors, with and without experience treating the conditions in question."
I'm not a perfect fit to these categories, being an anesthesiologist, but my fellowship training in pain medicine could be useful. And, I've got something I think might be a good qualification: I have CFS (with chronic pain ala fibromyalgia), had it for almost 18 years now, throughout my entire medical training and what minimal career I've been able to sustain. I have the compassion and the need to serve. I have an open mind in medical matters, am strongly interested in non-traditional approaches while being critical minded about all approaches, whether mainstream or "alternative."
What do you all think? Would having your physician be a fellow CFS sufferer be a plus to you? While being fortunate in being less debilitated than many, I do need to take care to not overdo too much. At least I should. I imagine working in an environment where I don't need to stay "in the closet" about my condition would be liberating, and I would like being able to help some of my fellow CFSers. But I would need to learn a lot first, if they were interested. Patient expectations will be very high for this new clinic! Rambling a bit as I mull this over. Thanks for "listening."
Hi valentinelynx,
I can answer to one aspect of your mulling! One of the best doctors I have seen had CFS and it was a huge plus! He knew what his patients felt like, and his own experience with the disease saved a whole lot of muddling around trying to eliminate things that has already been eliminated. Also, he had tried most of the treatments himself and knew their pluses and minuses and what side-effects to be concerned about.
The only down-side was that he couldn't stop pushing himself as he had such a passion to help patients. He told us to pace ourself but couldn't do it himself and often crashed.
I think it is great of you to consider this possibility.
Best wishes,
Sushi
Valentinelynx, it would mean a lot to me to have a physician who also has ME-CFS and knows about it, inside and out. It would be really helpful! I think that the gains in efficiency, "cutting to the chase", would far exceed any lack of efficiency due to your having to take breaks during the day or not see patients every single day of the week. Determining a schedule that works well for you would be ideal. I would be happy for you to be in a job where you don't have to hide in the closet, so to speak. I understand that--we all do probably--in how we have to function around healthy people.
I hope you go for it!
Sing
I hope you go for it!
Sing
I support you in taking a closer look at this. For me the key factor is a passionate commitment to this disorder which you obviously have. The learning will come -but nothing can replace the commitment. I also think you would be good because you would be less attached to pet theories and more focused on what works. Good luck!
Thank you, Cort, Sing, Sushi
... for your kind words and encouragement. The things you say are right on. I'm not very good at budgeting my energy. Part of that is medical training; physician culture does not permit admission of illness or weakness. License applications illustrate and reinforce this: they all ask if you have any medical problems, mental or physical that "might interfere with you ability...". Implies that all physicians are specimens of perfect health! One license application I encountered (every state has their own; you have to be licensed in each state separately to practice there) even asked if you now, or in recent years, had any condition that might be or have been a problem if it weren't treated! Forgive the venting...
Also, I liked what you said, Cort, about not being attached to pet theories. I think that's true for me. I try to keep an open mind. Some doctors out there who claim to have had CFS and to have "cured themselves" seem a bit attached to their theories... But, maybe because I haven't found an answer for myself I don't think I have the singular answer for anyone else. I certainly have my biases. For example, I am strongly of the opinion that ME/CFS has one etiology (cause). There is a pattern in medicine that diseases of unknown cause tend to be first thought to have multifactorial etiologies, or to be "final common pathways" of multiple insults. In the early days of AIDS, for example, some researchers believed it to be caused by the breakdown of the immune system due to repeated exposures to infectious or toxic agents through the "homosexual lifestyle" during the wild bath-house days of the '70s: multiple sexual partners, anal sex, use of "poppers" and other drugs. Now, all but the most stubborn recognize that the Human Immunodeficiency Virus is the cause of AIDS. The parallel to ME/CFS is striking: those theories of "burnout", stress, somatization will likely never die until a specific agent akin to HIV is definitively found to be the cause.
Having knowledge of the real cause of ME/CFS will fuel true progress in treatment. In the meantime, however, we have to use what we do know to relieve suffering as much as possible. That what helps one patient does not help another is terribly frustrating, and further underscores that we haven't yet pinpointed the underlying cause of the disease. So, the role of the treating physician is to help each CFS patient find the best ways to feel better, even if we don't understand why it helps. We need to keep open minds, so we don't miss answers because we refuse to believe in them. At the same time, critical thinking is necessary. One of my favorite quotes is the one that says, "Half of what we 'know' in medicine is wrong. But we don't know which half..."
... for your kind words and encouragement. The things you say are right on. I'm not very good at budgeting my energy. Part of that is medical training; physician culture does not permit admission of illness or weakness. License applications illustrate and reinforce this: they all ask if you have any medical problems, mental or physical that "might interfere with you ability...". Implies that all physicians are specimens of perfect health! One license application I encountered (every state has their own; you have to be licensed in each state separately to practice there) even asked if you now, or in recent years, had any condition that might be or have been a problem if it weren't treated! Forgive the venting...
Also, I liked what you said, Cort, about not being attached to pet theories. I think that's true for me. I try to keep an open mind. Some doctors out there who claim to have had CFS and to have "cured themselves" seem a bit attached to their theories... But, maybe because I haven't found an answer for myself I don't think I have the singular answer for anyone else. I certainly have my biases. For example, I am strongly of the opinion that ME/CFS has one etiology (cause). There is a pattern in medicine that diseases of unknown cause tend to be first thought to have multifactorial etiologies, or to be "final common pathways" of multiple insults. In the early days of AIDS, for example, some researchers believed it to be caused by the breakdown of the immune system due to repeated exposures to infectious or toxic agents through the "homosexual lifestyle" during the wild bath-house days of the '70s: multiple sexual partners, anal sex, use of "poppers" and other drugs. Now, all but the most stubborn recognize that the Human Immunodeficiency Virus is the cause of AIDS. The parallel to ME/CFS is striking: those theories of "burnout", stress, somatization will likely never die until a specific agent akin to HIV is definitively found to be the cause.
Having knowledge of the real cause of ME/CFS will fuel true progress in treatment. In the meantime, however, we have to use what we do know to relieve suffering as much as possible. That what helps one patient does not help another is terribly frustrating, and further underscores that we haven't yet pinpointed the underlying cause of the disease. So, the role of the treating physician is to help each CFS patient find the best ways to feel better, even if we don't understand why it helps. We need to keep open minds, so we don't miss answers because we refuse to believe in them. At the same time, critical thinking is necessary. One of my favorite quotes is the one that says, "Half of what we 'know' in medicine is wrong. But we don't know which half..."
Thanks again
I sent a letter (email) to Dr. Deckoff-Jones today. Thank you for your encouragement.
Valentelynx, absolutely you should apply. Knowing ME/CFS from the inside, as someone said, is an extremely valuable asset. Add that to an open medical mind, and you sound like the kind of doctor many of us have hoped for.
I sent a letter (email) to Dr. Deckoff-Jones today. Thank you for your encouragement.