Parkinson's Disease Tulip


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Old 04-11-2011, 02:36 AM #51
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Thank you for your reply,which I appreciate.
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Old 04-11-2011, 09:42 PM #52
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Thumbs up Two signs of a charlatan

Quote:
Originally Posted by made it up View Post
Muireann,
He's a known charlatan here in Australia and INMO a complete wanker who tries to rip PWP with his pathway recovery from PD. Fortunately with little success here.
The parkinsons association and community here have been complaining about his ludicrous claims for many years now.
Previously he claims to have recovered from not just PD but a Parkinsons Plus syndrome which makes it even more untruthful.
I'm not having a go at you Muireann I'm just very annoyed that he has the gall to tell us like it's fact and vulnerable people newly diagnosed or those further down the track might stop taking the levodopa their MDS recommends or prescribes which would otherwise give them a greater degree of relief from the rigidity and bradykinesia they would otherwise suffer with.
Apologies for offending anyone who took much notice of him but on behalf of many parkies here I find this man "deeply offensive."
Without making a judgement on Mr Coleman go to research done on charlatans. When studied, most people who sell unproven methods rely on the placebo effect which shows a 60% effectiveness, ie, 60% of those who believe it will work receive some positive effect.

Charlatans have two common qualities stated or implied in their information regarding claims of results in the face of incurable diseases:
1. They claim they can completely cure you
2. They claim that something in your attitude or way of dealing with the world has helped cause the disease in you.

#1 takes advantage of your deep rooted desire to turn back the clock
#2 very sneaky, almost hypnotically suggests you to open up further, which will increase your tendency to succumb to the placebo effect. This also allows them to eschew the 40% of believers who get no result because of some defect in their attitude or manner of dealing with the world...

Ask yourself these questions about Mr. Coleman. I just don't have enough knowledge about what he's doing or what he's claiming to accurately comment. The answers can usually be found in the claims being made. A third claim, less common than 1 or 2 would be if he were to say or imply that PD is not a real disease. Again, I don't know enough about his claims so I cannot comment.

Search "quack"** for more on detecting quacks.
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Old 04-12-2011, 07:45 AM #53
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Dopadoc,

You say that you are not making a judgement on Coleman, but in locating your discussion of him here, by name, in the very negative semiotic neighbourhood of 'charlatans' and 'quacks', you are certainly not lending any credibility to him.

Even more questionable, you are creating these negative associations from a position of a good deal of social capital yourself, as doctor and researcher with PD, though in your own words you admit you "just don't have enough knowledge about what he's doing or what he's claiming to accurately comment." Then why do so?

Coleman does not claim to 'cure' people, as you will see if you familiarise yourself with the foregoing discussion and/or interview with him [transcript and audio link provided above], therefore there is no need to lump him into an exposition on the nature of charlatanism and quackery.

Regarding your concerns about the placebo effect, a placebo effect is only problematic if it is not sustainable indefinitely. Indeed, most medical professionals would accept that an individual's ability to believe in the capacity of one's body to heal itself and a faith in one's carers is a pre-requisite to any sustained recovery, and that its functional mechanism is very much in the realm of placebo, though no less real or organic for being so.

I would argue that we should be a lot more worried about the corresponding nocebo effect of the callous ways in which diagnoses and damning prognoses are meted out by the medical profession, depriving people of hope and leading people to erroneously cede all responsibility for their current and future wellbeing to a biomedical profession whose knowledge agenda is set by the vested interests of the pharmaceutical industry.



Quote:
Originally Posted by dopadoc View Post
Without making a judgement on Mr Coleman go to research done on charlatans. When studied, most people who sell unproven methods rely on the placebo effect which shows a 60% effectiveness, ie, 60% of those who believe it will work receive some positive effect.

Charlatans have two common qualities stated or implied in their information regarding claims of results in the face of incurable diseases:
1. They claim they can completely cure you
2. They claim that something in your attitude or way of dealing with the world has helped cause the disease in you.

#1 takes advantage of your deep rooted desire to turn back the clock
#2 very sneaky, almost hypnotically suggests you to open up further, which will increase your tendency to succumb to the placebo effect. This also allows them to eschew the 40% of believers who get no result because of some defect in their attitude or manner of dealing with the world...

Ask yourself these questions about Mr. Coleman. I just don't have enough knowledge about what he's doing or what he's claiming to accurately comment. The answers can usually be found in the claims being made. A third claim, less common than 1 or 2 would be if he were to say or imply that PD is not a real disease. Again, I don't know enough about his claims so I cannot comment.

Search "quack"** for more on detecting quacks.
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Old 04-12-2011, 08:09 AM #54
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Default It is a slow morning.

Otherwise I wouldn't get into this (again), but it isn't that simple with PD. Starting with Mr. Coleman - I, too, know little about him other than the fact that he seems to give people hope and actively engages them in their care. Contrasted to what we are offered by Big Pharma, one has to wonder which yields the better quality of life.

"Without making a judgement"..."go to research done on charlatans" is about the slickest use/abuse of rational discussion I have seen in a while. Ranks up there with "Is he still beating his wife?"

The placebo effect is not to be dismissed, particularly in the case of PWP who exhibit it at roughly twice the rate of the general population. (BTW, is there any truth to the act that "placebo" is Latin for "don't know"?

Think about this a minute. An incurable, degenerative disorder with very limited treatment options. Researcher rushes in to boss's office. "I've demonstrated a 60% success rate with zero problems and minimum cost!"....

Big Pharma takes about $10,000 from me each year and cures nothing while making me totally dependent on their product. How does Mr. Coleman compare, I wonder?

But enough of that. Been here and done it. I am more interested in "dopadoc" and would like to welcome him/her to the forum, especially if, a the name implies, he is a neuro. There is much for us to discuss.

-Rick


Quote:
Originally Posted by dopadoc View Post
Without making a judgement on Mr Coleman go to research done on charlatans. When studied, most people who sell unproven methods rely on the placebo effect which shows a 60% effectiveness, ie, 60% of those who believe it will work receive some positive effect.

Charlatans have two common qualities stated or implied in their information regarding claims of results in the face of incurable diseases:
1. They claim they can completely cure you
2. They claim that something in your attitude or way of dealing with the world has helped cause the disease in you.

#1 takes advantage of your deep rooted desire to turn back the clock
#2 very sneaky, almost hypnotically suggests you to open up further, which will increase your tendency to succumb to the placebo effect. This also allows them to eschew the 40% of believers who get no result because of some defect in their attitude or manner of dealing with the world...

Ask yourself these questions about Mr. Coleman. I just don't have enough knowledge about what he's doing or what he's claiming to accurately comment. The answers can usually be found in the claims being made. A third claim, less common than 1 or 2 would be if he were to say or imply that PD is not a real disease. Again, I don't know enough about his claims so I cannot comment.

Search "quack"** for more on detecting quacks.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 04-12-2011, 10:24 AM #55
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Quote:
Originally Posted by Muireann View Post
Dopadoc,

You say that you are not making a judgement on Coleman, but in locating your discussion of him here, by name, in the very negative semiotic neighbourhood of 'charlatans' and 'quacks', you are certainly not lending any credibility to him.

Even more questionable, you are creating these negative associations from a position of a good deal of social capital yourself, as doctor and researcher with PD, though in your own words you admit you "just don't have enough knowledge about what he's doing or what he's claiming to accurately comment." Then why do so?

Coleman does not claim to 'cure' people, as you will see if you familiarise yourself with the foregoing discussion and/or interview with him [transcript and audio link provided above], therefore there is no need to lump him into an exposition on the nature of charlatanism and quackery.

Regarding your concerns about the placebo effect, a placebo effect is only problematic if it is not sustainable indefinitely. Indeed, most medical professionals would accept that an individual's ability to believe in the capacity of one's body to heal itself and a faith in one's carers is a pre-requisite to any sustained recovery, and that its functional mechanism is very much in the realm of placebo, though no less real or organic for being so.

I would argue that we should be a lot more worried about the corresponding nocebo effect of the callous ways in which diagnoses and damning prognoses are meted out by the medical profession, depriving people of hope and leading people to erroneously cede all responsibility for their current and future wellbeing to a biomedical profession whose knowledge agenda is set by the vested interests of the pharmaceutical industry.
You clearly know more about Mr Coleman than I do. I'm going to have to correct you on your assertion that I have an agenda.

Regarding your last paragraph, I generally agree despite the seemingly hostile tone towards "the medical profession" which I don't take personally. It is partially deserved b/c of arrogance I have dealt with professionally and personally myself as well. That said, there is a dire need for solid biomarkers of PD so there is no question regarding correct diagnosis. Kudos to the Fox foundation for initiating the huge open source PPMI study searching for that very thing.

Still quackery is rampant as well. I was stating objective criteria for its detection. I know NOTHING of Mr. Coleman but was merely providing a set of tools and objective criteria to list-members to help settle what seems to be a very heated and emotional thread of exchanges that appears to be growing more personal and less factual. That's it.
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Old 04-14-2011, 03:50 AM #56
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Dopadoc,

What I know of Mr Coleman is simply what I have laid before people here, and I have not gone beyond the nature or extent of the evidence of his claims in what I have drawn attention to in terms of facts. It is a ‘fact’ that he does not claim to cure people and it is equally a ‘fact’ that several posters here say, without foundation, that he does make such a claim. So, let’s keep our facts straight.

I think the location of solid biomarkers for PD at the current time is a double-edged sword, given the context of very spurious theorizing on the cause of this syndrome and the highly problematic iatrogenic drug and surgical treatment on offer for it.

One of the first likely outcomes of the location of biomarkers for PD will be the offloading of patient care from neurologists to Primary Care Physicians and General Practitioners. With a definitive diagnosis to hand, and the long waiting lists in some parts of the world for a referral to specialists, two years in my own case, PCPs would no longer hesitate in wading into the murky waters of prescribing what should remain highly specialized drug therapy. There will be no more “let’s wait and see if this problem goes away by itself” approach, which even if you evidence the relevant biomarkers, might be a good first option, given that there is ‘no cure’. 70% of your Substantia Nigra cells don’t ‘switch off’ over night in the case of idiopathic PD, that accounts for most diagnoses. It is a process and a slow one at that. And as I have spoken of earlier in this thread, a neurologist has admitted in private to me that they see patients who exhibit the early stages of PD but then, provided the medics don’t pronounce on these cases and hold off on drug therapy, symptoms simply recede, the person never knows they had PD, and all is well with the world. It is astonishing that this is not the hottest topic of all in the medical literature on this subject.

Locating biomarkers would be an unequivocal positive development, if we were all at the point of recognizing that you can get ‘a little bit of PD’ and recover, given the right support, and crucially, if you are not put on drugs that mitigate against this process.

Even first stage drugs in this situation can do much harm. On diagnosis, I was immediately put on Selegiline in quite a cavalier fashion, as if it is just a little inconsequential MAOB. I lost my appetite completely, a situation that continued for years, becoming dangerously thin and suffering such cold intolerance and pain that I could barely leave the house. I was incapacitated.

My dopaminergic neurons were suddenly deprived of the nutrition that ought to have been boosted in an appropriate treatment regime. And cells that should have been doing the job of producing dopamine were likely engaged instead in the production of superoxide anion, which is a good way to hasten cell death.

On Mirapexin I suffered a psychosis. On l-dopa I was going around with my name, address and phone number written on a piece of paper in my pocket, such was the state of my cognition. If I hadn’t managed to get off all PD drugs 1.5 years ago, and no thanks to the medical profession, they’d probably be writing down ‘Dementia consequent to PD’ by now, totally ignorant of the fact that my problems were medication related.

There is no shortage of people on this site who have placed their faith in biomedicine to the exclusion of all else. There is room for some additional perspective and critique, given what is at stake for newly diagnosed people wondering if they are trading the present for the future, by going down the conventional path of treatment.

Muireann
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Old 04-14-2011, 06:33 AM #57
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Quote:
Originally Posted by Muireann View Post
Dopadoc,

What I know of Mr Coleman is simply what I have laid before people here, and I have not gone beyond the nature or extent of the evidence of his claims in what I have drawn attention to in terms of facts. It is a ‘fact’ that he does not claim to cure people and it is equally a ‘fact’ that several posters here say, without foundation, that he does make such a claim. So, let’s keep our facts straight.

I think the location of solid biomarkers for PD at the current time is a double-edged sword, given the context of very spurious theorizing on the cause of this syndrome and the highly problematic iatrogenic drug and surgical treatment on offer for it.

One of the first likely outcomes of the location of biomarkers for PD will be the offloading of patient care from neurologists to Primary Care Physicians and General Practitioners. With a definitive diagnosis to hand, and the long waiting lists in some parts of the world for a referral to specialists, two years in my own case, PCPs would no longer hesitate in wading into the murky waters of prescribing what should remain highly specialized drug therapy. There will be no more “let’s wait and see if this problem goes away by itself” approach, which even if you evidence the relevant biomarkers, might be a good first option, given that there is ‘no cure’. 70% of your Substantia Nigra cells don’t ‘switch off’ over night in the case of idiopathic PD, that accounts for most diagnoses. It is a process and a slow one at that. And as I have spoken of earlier in this thread, a neurologist has admitted in private to me that they see patients who exhibit the early stages of PD but then, provided the medics don’t pronounce on these cases and hold off on drug therapy, symptoms simply recede, the person never knows they had PD, and all is well with the world. It is astonishing that this is not the hottest topic of all in the medical literature on this subject.

Locating biomarkers would be an unequivocal positive development, if we were all at the point of recognizing that you can get ‘a little bit of PD’ and recover, given the right support, and crucially, if you are not put on drugs that mitigate against this process.

Even first stage drugs in this situation can do much harm. On diagnosis, I was immediately put on Selegiline in quite a cavalier fashion, as if it is just a little inconsequential MAOB. I lost my appetite completely, a situation that continued for years, becoming dangerously thin and suffering such cold intolerance and pain that I could barely leave the house. I was incapacitated.

My dopaminergic neurons were suddenly deprived of the nutrition that ought to have been boosted in an appropriate treatment regime. And cells that should have been doing the job of producing dopamine were likely engaged instead in the production of superoxide anion, which is a good way to hasten cell death.

On Mirapexin I suffered a psychosis. On l-dopa I was going around with my name, address and phone number written on a piece of paper in my pocket, such was the state of my cognition. If I hadn’t managed to get off all PD drugs 1.5 years ago, and no thanks to the medical profession, they’d probably be writing down ‘Dementia consequent to PD’ by now, totally ignorant of the fact that my problems were medication related.

There is no shortage of people on this site who have placed their faith in biomedicine to the exclusion of all else. There is room for some additional perspective and critique, given what is at stake for newly diagnosed people wondering if they are trading the present for the future, by going down the conventional path of treatment.

Muireann
I really have nothing left to contribute to this post if you are going to say that PD is a pseudo-disease based on "spurious" data. I've seen the microscopic brain sections of the upper brainstem/midbrain of deceased patients with my own two eyes. Biomedicine is not and should not be the source of everything but rather a balanced view is required. Being both a board certified physician and a certified practitioner of TCM/acupuncture I have seen the strengths and weaknesses of both sides. I'm done with this thread.
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