This will probably be very boring for most people (including me). The sole purpose of this thread is in response to my complaint that John was crapping on another thread "Worlds first pill may stop Parkinsons" by posting an un-necessarily long and irrelevant promotional post which has subsequently been deleted - probably by the moderators I complained to.
I posted
"I am not hostile to either your frustration at delay, nor necessarily your ideas for a solution. I am hostile to your transparent trolling and spamming. I am reporting this reply as I reported your original long post. If you have any integrity delete both, replace them with a brief post expressing frustration that this solution takes time we don't have to deliver and invite a discussion on a separate thread promoting your ideas. Where I am happy to engage with you in debate. "
John was being a bit of a naughty tinker and carrying on our debate which had nothing to do with the thread, on the thread. So I have moved us here
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WinnieThePoo
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Actually, re-reading my quoted post, given it was unlikely JP did delete the thread, I wonder how much obligation I should feel to honour the promise "happy to engage in debate"
I think I will confine it to 2 topics.
1) Being silly and paranoid about the scientific community deliberately inflicting a chronic illness on PWP to protect their revenues from symptomatic therapies, when they could easily cure it if they wanted to
2) Not understanding what GDNF is and falsely claiming that GDNF used in trials was toxic because it was not "internally produced"
As far as I know an individual user can only delete their own comments, except if an individual user made the original posting than that user could delete the entire thing. So whatever happened I would attribute to the admins responding to your complaint.
You are not alone – there are a number of us here that object to JP's act.
Yes. I don't expect this to achieve anything other than to stop the thread crapping on your thread, and honour a, perhaps rash, offer to engage in debate elsewhere. Having refuted JP irresponsible false claim of toxicity of trial GDNF** I am reminded what an interesting and promising field it is. Maybe we should start a thread about it where grown-ups can participate
** one day I am going to forget to correct GDPR to GDNF. I am an accountant dealing with the new data protection legislation and my auto correct expects GDPR
So paranoid claims about a deliberately suppressed cure
This was JP's first thought
"If anybody is actually looking for a cure, which I doubt, because it makes no business sense, they don't appear to be very successful.
When ebola appeared on the scene, not too long ago, it was not too long before they came up with a medication to stop the spread of the disease and also to help sufferers get better. That, on my opinion, was because ebola caused people to die. Pd does not kill us, so the temptation to treat the symptoms makes much more business sense than CURING IT!"
So I pointed out that science is tricky, a cure may be hard to find, and medical science had delivered a cure for Polio which did not kill us.
John said the cure for Polio was a vaccine which is not a cure.
I pointed out that the cure for Ebola was a vaccine so if Ebola was an example of science being able to cure a fatal disease when it wanted to, Polio was an example of science similarly curing a non-fatal disease.
Our last 3 efforts on this were
JP "If anybody is actually looking for a cure, which I doubt, because it makes no business sense, they don't appear to be very successful.
When ebola appeared on the scene, not too long ago, it was not too long before they came up with a medication to stop the spread of the disease and also to help sufferers get better. That, on my opinion, was because ebola caused people to die. Pd does not kill us, so the temptation to treat the symptoms makes much more business sense than CURING IT!"
WTP "Nobody has cured Ebola then"
JP "Ebola is a terminal illness."
Over to you JP (if you really think there is any point)
JP "I know about that study, but it was done with artificial GDNF, not natural GDNF.
The cost of having that GDNF inserted into the brain was very expensive."
Later...
JP "It is no use using artificial GDNF, because it is not the same as natural GDNF. I say that because it was stated that the GDNF used in the trial proved toxic in the brain. That means it must be different. How can a natural chemical, produced in the brain, be toxic?"
(I presume JP, you have no objection to my drawing Bristol Universities legal department's attention to your written public claims that they carried out a trial with a substance found to be toxic, and have failed to disclose that in their trial results. It is technically libel.)
I questioned whether JP could provide ANY 3rd party corroboration for his claim, and the short version is he can't. He "heard it at a conference". Maybe he mis-heard it. Or misinterpreted it.
Best I can do, groping for any validity for his claim being a misunderstanding rather than outright fabrication is that the Bristol University trials included rodent tests. The rodents didn't have PD , so it was simulated by toxic destruction of the striatum in rats as a way of simulating PD. This doesn't work very well because PD involves other factors inhibiting GDNF uptake which are not present in rats with toxic destruction of the striatum and consequent damage to dopamine neurons.
However - the main point is an easy one. JP can produce no evidence for his claim that a major scientific experiment involving 41 PD patients took place at Bristol and didn't work because synthetic GDNF was toxic. And Bristol University have either forgotton to mention this or deliberately concealed it.
I will repeat a bit more information about this fascinating subject in my next post
Having discussed this on another thread with JP I had wondered whether to start a new thread about the research I referred him to. The following links should help explain the research, GDNF itself, and why I am interested in participating in a trial of a drug which inhibits alpha synuclein (A-syn). (And poo management - a lot of the A-syn overproduction is associated with the gut-brain axis and the vagus nerve)
As John will see (should have seen by now) the patients did have a novel , sophisticated , permanent catheter arrangement fitted, allowing GDNF or anything researchers want to trial, to be delivered precisely to the correct part of the brain.
Translation for John
intermittent bilateral intraputamenal infusions
intermittent (not constant - I think monthly)
bilateral (applied to both sides)
intraputamenal (within the putamen - a part of the substanti nigra region of the brain where PD destroys dopaminergic neurons - the tail on the comma in my DATscan (virtually no visible putamen on my right side))
infusion - drip application of the drug in solution
The trial was a success in terms of the long term viability of the delivery mechanism, but disappointing in terms of the dopamine neuron healing. The current theory is that this was due to inhibition of GDNF uptake in the cells due to overexpression of A-syn. This is due to the absence (or serious defecit) of an A-syn regulating microRNA in PWP (mir-7).
The GDNF used in this and earlier trials exhibited no toxicity - contrary to claims made by JP
"Winnie the Poo, in his/her normal fashion PooPoo's everything I say. " This is silly playground name calling. Your very next sentence you have remembered and say "his". In response to your whine that I was anonymous I published a biography on my profile, which clearly states I am 57 year old male, diagnosed March 2018. I regularly mention my wife Mrs Winnie the Poo (Sue) in posts. My name is Richard. When you grow up, I might stop treating you like a sulky toddler
I don't poopoo everything you say. I pointed out to you that you were continually repeating false libelous statements about gdnf used in the Bristol trial being toxic, demonstrating you don't understand what it is (never mind how it is expressed, or what a glial cell is). There is a program about the trial screening on BBC2 9PM 28 February. You should watch it - you would learn a lot about GDNF in the brain. So it was relevant to this thread, and the comment about you, for me to post that you have demonstrated you don't understand the subject, but still pronounce authoritatively (and wholly inaccurately) about it.
We'll skip "I can't motivate a study into Selegiline or MOAB inhibitors". There are plenty - these are well known drugs (not without side effects like compulsive behaviours - JP). Why you think you would motivate studies, I can't imagine. youtube.com/watch?v=mQZmCJU...
As for scientists not interested in helping PWP research exercise, and only interested in business ncbi.nlm.nih.gov/pubmed/292...
Grow up. Stop whining. And I will treat you like an adult.
I think John has the right to express his opinion like everybody else. You are posting a lot on this site and maybe some of us may not like what you are posting. That does not mean you should loose your right to post or your posts should be deleted. Let's respect each other the way we are! John is no more troll than some people claiming he is.
Excuse please, I am new to this thread . I am sorry that this happened. It sounds like a difficult time. How did you get resolution! I understand if you don't want to re-visit the past. Thanks, Paula
Meds cause so many ails, as many of us find out sometimes years later, why harm yourself when you can cure? i am all for the cure. If I wouldve listened to my drug pushing Drs, Id be crippled or dead.
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