"..... engage and involve people living with Parkinson’s as true collaborators and partners within each step of the research decision-making – from determining priorities,
to the development of study design and protocols, to dissemination of results."
Linda Morgan: Do you propose that if someone is an expert on feeling bad, it follows that they are also an expert on how to feel good?
Each Step! This level of involvement will cost a lot. Researchers will take time from their research to explain, report, etc. Do the PWP's pay their own travel and work for free, or do they get a stipend? Who will vet the PWP participants and review the requested collaborations. If carefully done, this activity could consume upwards of 25% of the PD research budget.
Perhaps we should insist on clinical trials to determine
1. If oversight by motivated (afflicted) amateurs is useful oversight, and
2. If this kind of oversight provides more benefit than it detracts from the PD research program.
If this proposal is intended as a solution, then I ask: What is the problem? Is a significant portion (say upwards of 25%) of the PD research budget being squandered? Will this kind of oversight be effective in restoring enough of the squandered money (after expenses) to PD research to provide a net improvement in the lives of PD sufferers?How will we measure the success?
Perhaps I think too narrowly. Please enlighten me:
1. What are the significant problems with PD research?
2. What proportion of the PD research budget is squandered because of these problems?
3. What is the evidence that the involvement of amateurs will significantly improve the research productivity and/or efficacy?
4. Can we quantify the improvement, say by estimating the percent of squandered money that will be restored to productive use?
The Grinch, aka fwes
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Not directly answering your questions, I don't have answers, but you may find this site interesting. It may give some context for Linda Morgan's speech.
In addition i understood the collaborative approach to research as a well documented approach particularly in the social science field. It goes under various names such as this brief article names.
You continue to amaze and enlighten us with the links you find! The participatory medicine site is a gem. For the convenience of others, their self-description:
"The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.
Our Guiding Principles:
To guide patients and caregivers to be actively engaged in their health and health care experiences.
To guide health professional practices where patient experience and contribution is an integral goal of excellence.
To encourage mutual collaboration among patients, health professionals, caregivers and others allowing them to partner in determining care."
No one at HealthUnlocked would contest this. It is what we are about. I would estimate that upwards of 95% of the posts have something to do with helping each other either understand their treatments or providing insight into the pro's and con's of possible alternatives. We want to understand and to be able to question what is being done to us.
I of course am questioning the value of moving this model into the medical research arena. For the social sciences, life experiences often provide sufficient background and intuition to understand the questions, something about the methodology, and the expected value of advancing the knowledge in a particular area. Probably very few would suggest that partnering citizens with scientists would enhance the progress of particle physics. Medicine is a mixed bag, in which the results are sometimes vitally important to us and the research may have an underlying reliance on cutting edge advances in physiology, biochemistry, scanning physics, nutrition, other medicine, and so much more. So I wonder whether adding zealous amateurs to a medical research project would provide enrichment or would it more often be sand in the gear lubricant?
Personally believe that there is an aspect of Parkinson's Disease that is currently ignored by research efforts that deserves much more attention.......that is the Outliers, those who contrary to most have much better outcomes.
It seems to me that there has to be something about them that would provide important insights to be learned about the disease process.itself..........as well as things we need to know about how to deal with the symptoms of our disease.......I want to be an Outlier too!
Hi BillDavid. If I understand your term "outliers" properly then I would be considered to bean outlier. I have managed to overcome many of my movement symptoms and have lived without further medication for the past eleven years. I have tried to get someone, anyone, to investigate what I have done, to establish whether it would help others or not. All I have met with, over these past eleven years is statements from the medical profession that, "I do not have Pd", and that is without even examining me. I am very suspicious therefore about the whole 'Parkinson's Movement". If that movement is funded by Big Pharma, is its goal to actially find a cure for Pd or is it to make everyone believe that we are 'Looking for a cure" when in fact we are not!
John Pepper.......thinking of outlier in the statistical sense.......as described you would be one. That is great, congratulations.
More....from my perspective I am not concern by big Pharma. Seems important for outliers to share lessons learned with other PD patients........to broaden their opportunities to do better. Is a matter of taking responsibility.....taking charge.
I would be interest how you attribute your remission/? What lessons you have learned?
John Pepper.....ran down a copy of your book. You at one point discuss how you use "Conscious Control" in your movement as contrasted to the subconscious, It occurred to me that you might find a book by Lissa Rankin titled Mind Over Medicine interesting. She speaks to the subconscious and the body. Excerpt.....
Your Subconscious Mind…..p31 The power of the subconscious mind explains why positive thinking only gets you so far. How many times have you read self-help books, taken workshops, made New Years resolutions, and vowed to improve your life, only to realize a year later that your life is no better. Since the conscious mind is only functioning 5 percent of the time, it has little power to overcome the weighty influence of the subconscious mind. To effect lasting changes in belief, you must change your beliefs not just at the level of the conscious mind, but in the subconscious mind.
……many of us where programmed to have disempowering thoughts about our health at an early age. Few of our parents taught us that our minds have the power to heal and harm our own bodies. Instead we were programmed…..that we have little to no power to help ourselves get well…..
p33…. Once we change our beliefs on a subconscious level, we optimize the culture medium for the community of cells that make up the human body, thereby changing the way our DNA expresses itself
.
Seems the role of subconscious…..is serious. Basically, Lissa is saying could impact Epigenetics! Subconscious also has role in anxiety and depression. And as you John discuss in your book a role in Parkinson's Movement.
Hi John - as someone who is well into your book, I think you would be an excellent Outlier! If David and I are on the same wavelength then this would be something run by PwP
John Pepper.....ran down a copy of your book. You at one point discuss how you use "Conscious Control" in your movement as contrasted to the subconscious, It occurred to me that you might find a book by Lissa Rankin titled Mind Over Medicine interesting. She speaks to the subconscious and the body. Excerpt.....
Your Subconscious Mind…..p31 The power of the subconscious mind explains why positive thinking only gets you so far. How many times have you read self-help books, taken workshops, made New Years resolutions, and vowed to improve your life, only to realize a year later that your life is no better. Since the conscious mind is only functioning 5 percent of the time, it has little power to overcome the weighty influence of the subconscious mind. To effect lasting changes in belief, you must change your beliefs not just at the level of the conscious mind, but in the subconscious mind.
……many of us where programmed to have disempowering thoughts about our health at an early age. Few of our parents taught us that our minds have the power to heal and harm our own bodies. Instead we were programmed…..that we have little to no power to help ourselves get well…..
p33…. Once we change our beliefs on a subconscious level, we optimize the culture medium for the community of cells that make up the human body, thereby changing the way our DNA expresses itself
.
Seems the role of subconscious…..is serious. Basically, Lissa is saying could impact Epigenetics! Subconscious also has role in anxiety and depression. And as you John discuss in your book a role in Parkinson's Movement.
Hi BillDavid. Thanks for this very useful information. I hope lots of other people read it. I would like to put this into my weekly newsletter I send to my Parkinson's contact group. Have you any objections to me doing this? There is another interesting book out there by Dr Norman Doidge titled, "The Brain That Changes Itself". He gives several case studies of people with brain damage, including blindness and head injuries, which are incredible. He is a research scientist and practices as a psychologist. It is worth a read for everybody. We have to change the way we think about our brain and what it can do for us.
John Pepper: I contacted you a week back & want to receive a coy of your book, will order today, need address for your site djr2003ont@yahoo.ca Ryan 12
Hi Fwes - although I am a Scot, I believe in the second amendment of the US constitution but I have to say that I am appalled by your first post - it is patronising, downright invalid and your impossible to answer questions at the end are simply intellectual hyperbole
You certainly do think too narrowly - if one activity is crying out for a paradigm shift it is Parkinson's research - have you read the summary of the WPC in Montreal which highlighted the disparity between the views of research scientists and the People with Parkinson's (PwP) or put another way the People who Matter (PwM)?.
The scientists acclaimed the major developments in Parkinson's Research as the discovery of Levodopa and Deep Brain Stimulation, the first being decades ago and the second discovered by Serendipity says it all. Apart from Gene Therapy which does look promising, there is nothing on the horizon to give us hope that, without the shift, things will be any different in 10 years. I must add an exception here and that is Roger Barker's leading the Trans Euro Stem Cell Trials. He is the best Neurologist I have ever met - good luck for his trials
We have spent millions of pounds, dollars et al and years of the best research brains working on the subject but where are we now?
This is where the paradigm shift needs to come and Linda is right on the money when she calls for the involvement of PwP at ALL stages of research - from deciding which projects go ahead, to monitoring the status and ensuring maximum scientific coordination which will cut down, if not eradicate, unnecessary duplication. PwP must also be involved in ensuring that all scientific studies funded for Parkinson's publish their results - good or bad
As a PwP, I know I am totally reliant on the scientific community finding better treatments and possibly cures but they must change their ways - have you read the article in a recent Economist describing the behaviour of many scientific researches?
I know Parkinson's UK have issued a top ten questionnaire asking PwP and their carers what matter to them - to be used to influence the prioritisation of future projects and believe they are looking at defining "Themes" by which they will ask the scientists to bid for (not the correct words but hopefully close enough) these themed projects rather than the scientists coming up with their own pet research projects
That is the future for Parkinson's Research in my view. I would wish for a worldwide coordination but the UK and the EU through the EPDA will be a wonderful start. A quick aside, I was chatting to a fellow PwP who has moved to New Zealand and because NZ does not provide funding for Requip XL, she has had to go back to Ropinirol with the known consequences.
The most offensive thing you said was" if someone is an expert on feeling bad, it follows that they are also an expert on how to feel good?" Of course they are, Collectively we PwP know far more about the symptoms of the disease, the side effects of the medication, what is good for us, what helps, what works and what doesn't better than any medical person. The trick would be to somehow get everyone "together" in the digital world and ask all these basic questions and collate the answers - that would be brilliant and would help so many - as we do on a small scale every day through private Facebook pages.
Please do not patronise us again - you obviously have an intellect so use it to help us through the shift
I have been involved, in a previous life, with a major Change Programme and believe me it can work to achieve a paradigm shift
I am a great believer as quote from you 'I have been involved, in a previous life, with a major Change Programme and believe me it can work to achieve a paradigm shift' I thought for a moment that you meant 'In a previous life, different body, different times' in the sense of maybe previous lives!!! Then I thought no not Bob.
Almost worth thinking about this seriously - A programme for recovery - I would want to join such a programme - hope not dispair. Not the programme us People with Parkinsons have from most medical practitioners - A Programme of No Cure & Inevital Deterioration.
In fact (in a previous part of my life) when I needed help with something that was going to kill me - it was my Doctor who told me to go to this 'Major Change Programme' as the best thing for me. I did and it was the most amazing thing, saved my life. And the major change programme was run by sufferers for sufferers.
What could be the first thing to be done would be to get information out to GP's stating our aims - our help, hopes for now and the future. And this could be given to people newly suspected or confirmed with PD. Maybe then we can get 'this paradigm shift' we need to more self help & group help.
It could be that 'The Power of the Mind, Love, Spirituallity & Knowledge' which in the end could be the main thing to use for a cure or even to stay healthy. One thing for sure we are not short of people on this site who have plenty of pioneering spirit, knowledge & the power of love. I find that I respect and love all that post their good, their bad and their anquish & I already feel that we are on the way to a World Wide Community. But we need to do more!!!
Thank you for your kind reply - I was indeed talking about a Change Programme in this life - although there are plenty of examples in history of major change programmes. Who knows we might have been part of them?
I would be very interested in hearing more about your previous life experience - my email is bob.raeburn@hotmail.co.uk
To get back to the present, we do need to get organised but the how best to do it is the question. There are a number of organisations that I am aware of but it is the logistical issues that perplex me. There is no shortage of enthusiasm,, intellects, knowledge and experience to achieve our aims.
I have posted recently on a number of private Pd pages on Facebook about the history and current trials of GDNF asking what could/should/can do about it and I await some meaningful responses with interest
I still believe, as I have recently posted, in the combined power and influence of a world wide PwP collaboration and also believe that with our combined experiences and sharing them we could significantly improve the lives of PwP without much input from Science. By having more control over Pd research (dream on I think but don't accept) we could channel their skills and brains in a top down way that tackles the longer term, or maybe just the major issues, with less regard for time
I agree with you that we need to get our message out to GP's and other medical / therapy practitioners and from there to the newly diagnosed to give them hope and inspiration - and avoid the wasted years of denial.
So, what are your views on formalising this much needed collaborative venture?
Thank you for your thoughtful and stimulating response, the first that is directed to the heart of the issue. I apologize if I seem to patronize. Since you have hit the target fairly, I obviously did not patronize you.
...............................Perhaps I think too narrowly................................
froggatt55: You certainly do think too narrowly - if one activity is crying out for a paradigm shift it is Parkinson's research - have you read the summary of the WPC in Montreal which highlighted the disparity between the views of research scientists and the People with Parkinson's (PwP) or put another way the People who Matter (PwM)?
..........................1. What are the significant problems with PD research?.........
froggatt55: The scientists acclaimed the major developments in Parkinson's Research as the discovery of Levodopa and Deep Brain Stimulation, the first being decades ago and the second discovered by Serendipity says it all.
...............2. What proportion of the PD research budget is squandered?........
(implicitly) MOST OF IT!
froggatt55: Apart from Gene Therapy which does look promising, there is nothing on the horizon to give us hope that, without the shift, things will be any different in 10 years. I must add an exception here and that is Roger Barker's leading the Trans Euro Stem Cell Trials. He is the best Neurologist I have ever met - good luck for his trials
We have spent millions of pounds, dollars et al and years of the best research brains working on the subject but where are we now?
...................3. What is the evidence that the involvement of amateurs will significantly improve the research productivity and/or efficacy?.....................
froggatt55: This is where the paradigm shift needs to come and Linda is right on the money when she calls for the involvement of PwP at ALL stages of research - from deciding which projects go ahead, to monitoring the status and ensuring maximum scientific coordination which will cut down, if not eradicate, unnecessary duplication. PwP must also be involved in ensuring that all scientific studies funded for Parkinson's publish their results - good or bad
froggatt55: As a PwP, I know I am totally reliant on the scientific community finding better treatments and possibly cures but they must change their ways - have you read the article in a recent Economist describing the behaviour of many scientific researches?
I know Parkinson's UK have issued a top ten questionnaire asking PwP and their carers what matter to them - to be used to influence the prioritisation of future projects and believe they are looking at defining "Themes" by which they will ask the scientists to bid for (not the correct words but hopefully close enough) these themed projects rather than the scientists coming up with their own pet research projects
...........4. Can we quantify the improvement, say by estimating the percent of squandered money that will be restored to productive use?....................
fwes: admittedly patronizing, intended to make a point. Merely substituting one super class and its pet projects with another super class and its pet projects may create excitement, but rarely produced meaningful results.
froggatt55: Linda is right on the money ...
fwes: And that is my fear: the Linda's will take significant portions of the scarce research funding to support the new oversight and the scientists will spend most of their time trying to figure out how to please the new masters. Science will wait in the wings.
I have stated in another post that I have never seen scientific endeavor advance linearly. I have always observed Great Leaps followed by endless plateaus where the entire field contributes minor embellishments by baby steps, building a foundation for the next Great Leap, often by an outsider. I see PD scientific research on such a plateau (since dopamine; DBS is merely fantastic engineering). While we can anticipate a steady advancement of the symptomatic relief (PD engineering) I have no expectation of an understanding of the cause, of possible prevention, or of a cure until there is another Great Leap (PD science).When? Hard to predict. 0Tomorrow? next Century? A Great Leap requires a special intellect, a special circumstance, and a lot of hard work using the tools of the plateau.
I agree that the near future is discouraging. Baby steps are boring and mostly a waste. But history has often shown that somewhere in the baby steps lies a germ of an idea or a technique that is grasp by the highly trained and especially creative messiah who will lead the next Great Leap.
Where there is corruption, Throw It Out! Call on Citizen Oversight if necessary. But I know of no case in the history of (hard) science where a Great Leap was facilitated by a citizen management of science. More often it has exacerbated and prolonged mediocrity.
I will respond to you Thursday 30 January but right now, I am bushed having just finished my first evening of 30 minutes of intense exercise - inspired by my having started to read John Pepper's book "Reversing Parkinson's"
Long live the PwP movement! - Hello to a good night's sleep!
Hi fwes and Bob. What is said above just underlines the fact that we have opposing agendas. The funding is paying the scientists to look for a 'CURE' for Pd. But if they find a cure the funding dries up and they don't have a job. The pharmaceutical industry, which must not be confused with the scientists, would be crazy if they found a cure because they would lose all the patients they currently supply. Those of us who have been taking various medications that only hide the symptoms and do not slow down the progression of the Pd, cannot get off this conveyor belt, because we cannot do without the medication. We are locked in.
Now comes this crazy fellow, John Pepper, who has been lucky enough to have only been prescribed one type of medication that helps the brain to use the dopamine it already has, while he does meaningful walking, which produces natural GDNF in the brain, which in turn repairs the damaged brain cells. Now he gets more dopamine and his symptoms get less. He thinks the medical world is going to beat a track to his door to find out how he did it, so he writes a book about it, so that others can also do what he did. What a fool he is! The doctors told his fellow PwPs that he obviously does not have Pd and they must not listen to him. How do you interpret that? Without one of the medical critics asking him to let them examnine him, they claim the high ground and tell the world he is a fraud! Meantime, he has got even better, although he still has most of the symptoms, but at a much lower level.
If we want to make sense out of this story, we have to realize that the scientists and the doctors and the pharmaceutical industry live off the likes of us and they do not want a cure to be found. WE ARE ON OUR OWN!
Not having taken levodopa medication, nor any agonists, he is unable to undertand what happens when we stop taking these drugs. We become zombies! How long does that zombie state last? Who knows? If we slowly come off the levodopw meds and take the MAO-b instead and start doing meaningful walking, how long would it take to turn the corner? It took him ten years, which is a long time. But during those ten yers he slowly became better and better. Has anybody else tried to do that?
Only we can help ourselves! Nobody else is going to help us.
I leave you with some very meaningful sayings: 1. We only get out what we are prepared to put in! 2. What we don't use, we lose! 3. If we blame others for what has happened to us, we are blaming the wrong person! 4. Nobody is to blame for our condition, we have to accept it and get on with our life. 5. Medication that does not cure the condition, therefore it can only exacerbate it. 6. Putting toxins into the body cannot make it better, it can only make it worse!
I agree With Linda Morgan. Presently, the only PD research being done is in finding new medications that will mask symptoms of PD. Medications that mask symptoms make big pharmaceutical companies lots of money. If someone found a cure for PD; there would be only one chance of getting some of the funding back i.e. not enough profit for a big pharmaceutical company. Since we the people with Parkinson's contribute money to research, we should have a say in how our money is spent.
Just imagine what could be accomplished if all the people doing Parkinson's research were to gather in one large lab, and share their knowledge and funding to find a cure for PD. Wouldn't the chance of finding a cure be increased dramatically? Then they could go on to find a cure for cancer, and MS, etc.
"As I was sitting here, I thought of a recent project undertaken by the Parkinson’s Disease Foundation with of the PD community. PDF invited people with PD and care partners to name their research priority. More often than not, their responses related to immediate issues that we, those with PD, deal with on a daily basis.
So, what strikes me after listening to the dialogue of the last two days is how the long game of research- the important work of understanding this disease and one day finding a cure - must be balanced with the short game of research – that of helping people with PD live better lives today.
How can we do the best job possible in focusing on and funding of critical ‘long game’ issues like understanding the normal and abnormal function of alpha synuclein while providing equal emphasis on critical ‘short game’ issues such as fatigue, imbalance and gait issues, indiscriminate pain, the progressive ‘off’ periods, and the inevitable dyskinesias. "
I am 75 and can expect to live about a decade. The end-game for PD is pretty nasty. Can you expect me to vote for a 25 year path to a cure or a 5 year project to ease pain and discomfort? People in democracies all over the world repeatedly vote their self-interest. For PWP, the issues are considerably more weighty than those concerning whether or not we should beautify our neighborhood.
I am concerned on the impact that this proposal could have on the long game. The second paragraph of the quote says to me that Linda's objective is to use this process to divert some money from the long game to the short game. You and froggatt55 seem to be defenders of the long game. Please help me to understand how fulfilling your objectives is consistent with the quote above.
Perhaps our differences are less intellectual, than in our confidence in human behaviour.
Hi MagicMax. You are a man who thinks like I do. I am not in any way convonced that anybody connected to Big Pharma is going to allow a 'Cure' for any ailment to find its way to the marketplace. It is not in their interests. To illiustrate this point, ask yourself the question, "How many cures for any medical problems have been found since World War II? My guess is that there are none. That is a pretty bad result for the work being done by the best brains in th world. I might ask, "How many cures have been found, which have since disappeared off the face of this earth?" My bet would be, 'quite a large number'. After all, as a scientist or a scientific company, would I, or the company, be immune to accepting large financial offers for this cure? Again, the answer is, "No".
We all have to understand that there are a huge number of vested interests in this matter, of finding a cure for any medical problem, and we the patients, have to accept that the situation is unlikely to change until we take a hand in this.
Alternative thoughts on involvement of PwP in research.....things to think about.
Thoughts from a presentation by Nassim Taleb to the National Science Foundation as shown on YouTube. Application to Parkinson's Research mine, not his. Taleb is a noted Academic and Author.
From the perspective of probability more likely to find the desired outcome with more variability in research
.....implication better to structure more smaller research projects rather than fewer large ones as currently done.
Research failure on smaller projects has an important outcome in itself......shows where not to put resources
.....contrasted to large projects which reduce the variability covered and thus the probability of research success.
Stated in other words, fewer large projects because of smaller variability covered compared to many smaller projects, in themselves, are less likely to result in success. In this regard, Top Down research would have less variability compared to Bottom Up.
Also has implication for focus of research, should it focus more on cure or more on symptom remediation?
From the perspective of probability, success for symptom remediation more likely as would involve more variability. Particularly when focused on symptoms, involvement of PwP. in research would be indicated from this perspective.
Taleb also noted that most successes in medical research actually occurs by accident rather than by design.
He mentioned Viagra whose effect was noted in human trails as a side effect. It was intended as a treatment for high blood pressure. A similar success in PD was the accidental discovery that a synthetic Herion contaminant (MPTP) tragically caused PD symptoms in users. This discovery resulted In the development of animal models on which to test new drugs and treatments. And the recognition of Deprenyl (Selegeiline) as a treatment to retard the progress of the disease.
The link below is to a poster presented at WPC. I hesitate to post it as it doesn't directly answer your question but it is follow on from your comment on the PDF survey. (Do you have a link)
The point about where funding should be directed, on research for better treatments or research for cure was part of a survey on this site. 81% felt that funds were best directed to finding a cure. 50% wanted new symptomatic treatments for PD. 32% prioritised long-term social support.
As you astutely reminded me a few months back, age matters. The population: "...mainly young (76% aged 50-69), highly educated (68% with at least 1 degree), with mild Parkinson’s (Hoehn & Yahr stage 1/2: 66%) for 4-6 years. " Do you think that they would have found the same emphasis from a population 70+, with 10+ years PD and Hoehn & Yahr stage 4-5?
Of course, it is hard to get these people involved, so their concerns may not be included. In that case, I personally would applaud the result and deplore the method.
Interesting references. Where do you find the time?
The chart's summary seems to be based upon the model wherein PD is conceived as a single disease process. That is very different from invoking a model wherein PD is a syndrome reflecting different or slightly different diseases in various subgroups of PwP.
As a participant in the PDF research priority consultation I was interested to see the results of this too. There is the usual split between long term research and short term needs which must also be a dilemma for Parkinsons organisations, whether to spend on research or spend on services and how to decide. I don't think they can ever get it right for all people.
I don't have an answer to the original question, but I do believe in our involvement in every aspect of PD. We people with parkinsons are not just passive. It is not us and them but needs to be a we - together we are making a difference in the lives of those with Parkinsons now and in the future.
And in response to the question 'What are the significant problems with PD research' see the message in the video about how research results are reported, or often not. Thousands of clinical trials have not reported their results; Information on what was done and what was found in these trials lost. We can discuss how to approach research, but unless we have the outcomes published what a waste of research money.
Hi Hikoi. Maybe these research results don't get published because they are too good and get bought out quietly? Just raising a possibility. The GDNF story still lingers in the background!
Hi Hikoi. In normal circumstances, I would agree with you. I sincerely believe that the stakes in this matter are so high that what I have suggested is a distinct possibility. You may say in response that conspiracy theories are all a lot of nonsense, but when you realize that not one 'CURE' for anything, including the common cold, has ever been produced, by the top brains in the world, then either it is not possible to find a cure for anything, or there is another possible alternative and that is where I am coming from. GDNF is not a cure, it is however, a way or reversing Pd. GDNF is produced naturally in the body by certain types of exercise, so why do we have to make artificial GDNF, to pump into our brains, in order to get the same results? I have been able to reverse my Pd through the combination of one type of medication and energetic walking, plus some common-sense actions like dealing with stress and eating properly. I know most people think they are unable to exercise, but if the doctors put their minds to encouraging their patients to exercise, and there were more studies done on this approach to dealing with Pd, I am sure that many patients, not all by any means, will benefit from doing what I have.
fwes quite rightly wants numbers. The one that matters is 0 - the percentage of people cured of Parkinson's disease.
I don't see it as us (PwP) and them (scientists). I see it as a problem (PD) which will be solved quicker if more people are involved in the fight against it.
PwP citizen scientists are a resource that should be used in the fight against Parkinson's. We have a vast range of relevant skills that we gained during our careers. We don't lose these skills the moment we are diagnosed with PD. I'm thinking of PwP who were doctors, engineers, chemists, mathematicians, programmers etc..
I think we might be on the brink of something total new here - exploiting the knowledge and experience of PwP for the betterment of PwP in the short term then more control / involvement of PwP in Research in the longer term - I accept that we have some negotiation to get through on the latter!!
We need to meet digitally and come up with a Plan and Terms of Reference (with my background, I can produce Tor's and Plans without any problems
3 months ago, I introduced a lightly followed post: What are the attributes of an effective treatment for PD? Perhaps we need to start there, because in the current context, it asks "What is the target?"
From most comments, the short game consists of techniques to improve the lives of the afflicted. Sometimes science helps with this, sometimes serendipity. That leaves to the long game most of advancing science and solving two major problems : finding a Cure and Prevention. (Certainly those who don't have PD (yet) also have an interest.)
Expanding your point: We get 0 for both Cure and Prevention. The PDF discussion focused on improving support for Symptomatic Relief. Younger PWP's and the medical community think both in terms of Symptomatic Relief and a Cure. Economic Analysis would probably conclude that Prevention should be the focal point and a Cure would have lessor but significant value. Should we ignore the probability of success for one project over another? Scientists are the only ones that can provide a credible WAG on probability of success in any aspect of the long game and some contributors seem ready to cut them out of policy decisions.
The castigated Question 4 in this Post is a suggestion of what would be a useful for a cost/benefit analysis. Inputs: probable cost, probability of success, value of proposed product.
Score = Cost / (Probability x Value)
A lower Score indicates a project that has more potential for economic payoff.
Scientists must be involved in estimating the Cost and Probability of Success within the stated schedule. Citizens can provide some help is estimating Value of the product, but it is highly likely that policy makers will want to hear from the Medical community as well. If this model is followed, as is almost always the case, then even for the short game, citizen input will be allowed have only a modest impact.
We may disagree with this approach, but consider: What foundation or politician would want to be charged with suppressing funding of a likely-successful, higher-value product in order to fund a popular higher-risk, lower-value product?
Love your web-site. Have been there before (look for fwes). I believe that there would be value in a collaboration between your approach, my non-clinical trial for Coconut Oil, and a similar investigation for JohnPepper's walkers (how many do you know of John?). With the exposure of widely fudged clinical trials, our efforts can at least provide honest counting!
High vs. Low is not the issue. Which trials support the institutional message? They will be published. This has been going on since at least the '70's, when some early Cholesterol trials had the embarrassing outcome that the low C. subjects had more high C subjects. They had statins to sell, so ....
OOPS! Should read: This has been going on since at least the '70's, when some early Cholesterol trials had the embarrassing outcome that the low C. subjects had more heart attacks than high C subjects. They had statins to sell, so these results were not published.
Hi fwes. It is impossible for me to give you numbers of people I have spoken to and possibly demonstrated the ability to control their walking by using their conscious brain. I would hazard a guess that no more than 20% of those I have spoken to have continued to do meaningful walking, while controlling it with their conscious brain. The rest of those Pwp's were eiither too far advanced or felt unwilling to do the hard work, preferring to take medication. 20% is still a meaningful number. We must all be aware that it took me ten years before I became aware that my condition had improved so much that I no longer needed to take the MAO-b inhibitor.
I must also remind everybody that I got rid of the major stress in my life ny giving up my job and every other non-family commitments that caused me stress. That was a very important part of my recovery story. In addition to that, my positive attitude towards my future prognosis has always been a plus factor in my recovery.
I have the same problem with Coconut Oil. I know that many are taking it and getting some benefit, but of course they are under no obligation to report to me. So I started the non-clinical trial for CO. About 20 people have contacted me and 15 are active participants. What I ask is that they fill out a form rating their impact by 24 common symptoms (none, modest, moderate, severe, debilitating) for each symptom, as they best remember before CO and every 3 months after taking CO. I compare their NO CO status with their current status and look for statistical evidence that CO provides benefit, and which kinds of symptoms are most likely to show benefit. If we can get up to 30-40, we should have pretty good data on FIRST: does CO help PWP, and THEN: what symptoms are most likely to respond favorably and are there symptoms where CO does not seem to help. Our hope is that providing good data and reports, we will incite some interest in the establishment to conduct regular clinical trials.
I can see no reason why we could not put together a similar non-clinical trial for walkers. If you built it, they may come out of the woodwork! You have the knowledge, JohnPM and I know how to handle data. It sounds like he's willing to help. For starters, look at the PD pages on my Website tending-the-iris.us/ If you like the approach, I'm sure that we can get the word out and make it work. The mailing list from your book sales is a great starting point.
Hi fwes. I have suddenly realized how unsophisticated I am. I wrote my book over ten years ago and have printed and published it myself, here in SA. I also got it published, at no mean expense, in the USA. Today, after reading something on this blog site, I went into Amazon and looked up the reviews of my book published in the USA. Had I known that it was received by most people very well, I might have been a lot more adventurous and tried harder to sell more books and get my message to more people.
In line with this new awareness, I am very happy to join in with any activity that will make more people aware that Pd is not the end of the world.
Please contact me at johnpepper@telkomsa.net and I will forward to you my contact list.
What I would like to see is a number of PwP inputting data on their condition, their symptoms, their drugs, side effects, benefits, what works for them, what doesn't, their life styles et al Then we correlate the data and produce a Forward Plan for PwP. This, as you have been saying doesn't need Scientists. Our aim would be to deliver a structure to achieve an immediately improving quality of life - giving hope especially to those newly diagnosed and thus avoid those wasted years in denial
When I say we wouldn't need scientists, I am tying this to our other discussion on PwP having more say in PD research - we could in theory stop all research that we can handle ourselves. I still believe we PwP should exercise greater input to the prioritisation of major research
There are many strands to this debate but in terms of getting info from PwP, could we collaborate?
Of course we can. I would enjoy that. Of course collaboration does not imply subordination, especially in thought. Hopefully we will find many ways to cooperate and complement. There is so much to do.
How do I find out more about you? I can get a pretty good idea of your broad goals from these several posts, but I may not understand all of your priorities. A brief synopsis, bio, etc. would be helpful.
The biggest impediment to PwP doing useful research is, in my opinion, not a lack of skills, nor a lack of equipment, nor a lack of money, but isolation from other citizen scientists. We can fix that.
As a first step, let's collect a list of people interested in collaborating in PD research.
We need people to choose research projects that Big Pharma won't support, such as plant-based treatments like mucuna pruriens and cannibas in their natural forms, as there's no way for them to make a profit from plants people can grow themselves. How can we break the tie between research money and profit motives?
This is what Linda Morgan was writing about and advocating.
How muchfaith do you have in the ability of basic science to solve a problem like Parkinson’s?
I have absolute, unwavering faith. I don’t see any other route. But I don’t think we should channel all funding into primary research, that is a significant part of it and that it where the major leaps are going to come from, but those decisions have to be informed by patient input. Patients have to lead the agenda and be able to say to scientists, ‘these are my priorities and these are the things that need addressing.’ The idea of scientists alone making the decisions about what they perceive to be Parkinson’s is insane. If I think back to who I was before the diagnosis, I wouldn’t trust myself to make those decisions.
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