It seems to me that the Parkinson's resea... - Cure Parkinson's

Cure Parkinson's

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It seems to me that the Parkinson's research is almost zero

Farooqji profile image

The current clinical trials by different drug giants is just to make the company's profile more attractive. These trials are stagnant at some phase/stage and are not moving an inch ahead. Similar is the situation of stem cell research. Just an example: I am seeing the status of hpNsc trial since 2017 and it has not progressed even only 1%. I am noting the same graph for the last 5 years

internationalstemcell.com/p...

Similarly on individual front all the research papers written by the researchers are just to improve their academic credentials. Neurologists give lectures just to promote theireslves and increase their patients count. I bet that every research paper is ended with the sentence "further research is needed in this regard"

In this scenario, the outlook seems bleak to me and we are inside an endless tunnel or the one with no light at the other end.

35 Replies

Where is MJFF when you need them?????

Art

Sydney75 profile image
Sydney75 in reply to chartist

My HWP Neuro is on MJF board he said his office has 25 trials going right now. They only seem to want patients who do not take C/L for trials. I asked l if there is a good outcome on a trial will it be offered to all PD patients, he indicated that once you start C/L they are not sure whether it will be successful. I guess that raises the dilemma as to whether insurance would pay.

kevowpd profile image
kevowpd in reply to Sydney75

People with early PD are the most likely candidates for successful disease modifying treatments because they are the ones with the longest amount of disease left to modify and the most neurons remaining.

The other advantage of running trials on those not using current PD drugs is that you don't need to worry about whether they are on or off meds when they are measured.

chartist profile image
chartist in reply to Sydney75

Insurance generally doesn't seem to cover things until they are more than proven effective and are considered a standard of care. Until that point I think they view the newest drugs as experimental and not covered with some possible exceptions in health conditions where there are no other options. FDA approval is not a guarantee of automatic health insurance approval.

Is there any possibility of knowing what the 25 studies are that MJFF is allocating funding for?

Art

Sydney75 profile image
Sydney75 in reply to chartist

Our MD was speaking about studies in his practice, next time we go I will ask. I just hope as most research is w folks who don't take C/L that they will trial PD who take C/L.

chartist profile image
chartist in reply to Sydney75

I understand their thinking of trying to show the cause and effect of a new drug as clearly as possible and C/L could potentially color their results and so their preference to choose PwP who have never used C/L or at least are not currently using C/L is understandable. Unfortunately that leaves the great majority of PwP with no chance to trial their drug until it is FDA approved and hopefully covered by insurance many years later.

Art

Despe profile image
Despe in reply to chartist

"Insurance generally doesn't seem to cover things until they are more than proven effective and are considered a standard of care. Until that point I think they view the newest drugs as experimental and not covered with some possible exceptions in health conditions where there are no other options. FDA approval is not a guarantee of automatic health insurance approval."

With the exception of the COVID19 "vaccine" at no cost. They (Insurance) even give bonuses for having the vaccine.

chartist profile image
chartist in reply to Despe

Despe,

Yes, that was one that came to mind when I said,

' with some possible exceptions in health conditions where there are no other options. '

Although actually, there are quite a few options for Covid-19, but many of these are largely ignored by the scientific and medical communities overall.

C-Diff might be another where FMT is sometimes used as a last resort when medications are no longer controlling the disease at all, but not currently commercially available for PD. For that, you will have to seek private providers.

Money changes things, especially the kind of money involved in Covid-19.

Art

Despe profile image
Despe in reply to chartist

👍

Despe profile image
Despe in reply to chartist

Art,

The link I provided below is highly recommended!

chartist profile image
chartist in reply to Despe

I haven't had a chance to finish reading it yet, Despe, as unexpected things came up today that I had to deal with, but I'll finish reading it now.

Art

chartist profile image
chartist in reply to Despe

Okay, I'm not sure how far I am supposed to read this, but the first section titled :Update.

I agree with most of what he is saying about the destructive forces that are at work and promoting ill health in the body mainly through excess oxidative stress and inflammation, but I do not think it is realistic for the majority of people to do everything he is suggesting to reverse these destructive forces

He mentions many supplements (35 minimum if I counted correctly), but not once does he mention melatonin which performs many of the detox effects, antioxidant activities, radical scavenging as well as inflammation reduction, which he says is all important. Melatonin is the most potent antioxidant in the human body through direct and indirect actions. Most importantly melatonin is produced throughout the body and there are melatonin receptors throughout the body. The body does not make the majority of the 35 supplements that I counted in his post, but it definitely makes and utilizes melatonin very effectively. It is the same with animals and plants when it comes to melatonin. He's very big into vitamin c and I agree it is a useful antioxidant and detoxifier, but melatonin is more on all counts, but he doesn't even mention it once! Vitamin C is not made in the body, it has to come from outside sources. Vitamin D is produced through the reaction of cholesterol in the skin with UV rays from the sun and like melatonin, vitamin D production declines with age. Melatonin is produced in every single mitochondria in the body and does a very good job for decades of controlling most of the destructive forces he mentions, including heavy metals. Once the decline of melatonin reaches a certain point, melatonin is no longer able to fully maintain that control and then a disease such as PD starts to increase in numbers and severity.

He completely ignores the decline of melatonin with age and the associated increase in age related diseases associated with that decline. He gives some useful information, but to me is a little too general in terms of how to utilize his proposed remedies and 35 supplements minimum is going to be a hard regimen for most people to tolerate or stick to, especially if some of those supplements need to be taken more than once per day. For a PwP, this would be in addition to their prescription meds and hopefully there are no bad interactions between supplements and prescription medications or even between supplements, as that can happen.

Despe, overall, I think he is seeing some things correctly and is correct about regaining control of runaway oxidative stress and excess inflammation in order to repair a damaged body, but the fact that he completely missed what melatonin is doing in the body to ameliorate all of the damage he is describing suggests to me that he has more reading to do.

I completely disagree with his blanket statement about leaky gut as the science says otherwise and the FMT studies, although small, clearly showed that what happens in the gut is very important to our health and I suspect that may be part of the reason why gut melatonin is produced at a rate that is at least 400 times the amount produced by the pineal gland.

I am not trying to be harsh about what he has written as he made some very good points, but what he has written may come across to some of his readers as the gospel truth on how to repair damage to the body and to have that discussion with no mention of melatonin, is, in my opinion, folly. I may be biased when it comes to melatonin, but if there is a bias, it is based on many many melatonin studies that when taken in total clearly suggest that melatonin is a truly amazing molecule that promotes human, animal and plant life health like no other. This is just my opinion and I freely admit that I could be wrong about melatonin, but the available studies keep me on this path and I will stay on this path as long as the studies continue to show the value of melatonin in human health.

Art

Despe profile image
Despe in reply to chartist

Thanks for your insight, Art! However, I believe he does mention Melatonin somewhere. . .

chartist profile image
chartist in reply to Despe

I missed it, if it was in that first section.

Art

ddmagee1 profile image
ddmagee1 in reply to Sydney75

I have run into the same dilemma here in the USA. Once one is on C/L, the researchers don’t seem to want to use the PWP, for their research.

Exactly my sentiment, Farooq! We are on our own and need to do what it's best for us with CAM therapy.

zx4.bc9.myftpupload.com/for...

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

sharoncrayn profile image
sharoncrayn in reply to Patrickk

Hope Exenatide works on humans. We should know by 2025. HandY scale must be <2.5 for inclusion into CT.

Patrickk profile image
Patrickk in reply to sharoncrayn

First and second stage were with 60 humans each for one year -- third stage is with 200 humans for two years.

If Parkinson's killed one out of one hundred patients within two months -- paralleling COVID -- and Bydureon -- a repurposed, proven safe drug that I was on for five years for Type II Diabetes -- had the same success it has had with Parkinson's in early trials, then, every Parkinson's patient would have Bydureon pushed at them.

Well, a hundred out of a hundred Parkinson's patients' brains are dying -- a significant part anyway -- but medicine has to stick to decade-plus protocols while we go downhill. ???

sharoncrayn profile image
sharoncrayn in reply to Patrickk

Apparently you continue to misunderstand or refuse to accept what i have written several times to you about this limited scope phase 3 CT (for a good reason).

to repeat: this phase 3 will include only PwPs with a HandY scale = or less than 2.5.

in plain English, it means they are dealing only with MILD BILATERAL PD DISEASE OR PD WITH LESS SEVERITY. Commendable but still limited in scope to "early" PD which has been my contention from day 1.

Furthermore It had no effect in a ALZ phase 2 CT (Mullins, 2020):

"Exenatide treatment produced no differences or trends compared to placebo for clinical and cognitive measures, MRI cortical thickness and volume, or biomarkers in CSF, plasma, and plasma neuronal extracellular vesicles (EV) except for a reduction of Aβ42 in EVs."

Mortality with PD is very low but has increased over the years to somewhere near 100 per 100,000 for males >65 or .001%. Not a high risk disease.

sharon

"In this scenario, the outlook seems bleak to me and we are inside an endless tunnel or the one with no light at the other end" , mind yourself because the light at the end of the tunnel could be a train.....

Fed1000 profile image
Fed1000 in reply to Lucal

Well found Lucal.

In my opinion they’re mostly trialling things for people who haven’t taken C/L for a long time so people who’ve been on the meds over a number of years have no chance of receiving anything to slow down or reverse this awful illness let alone a cure…..The proof being that They’ve been doing trials for years and years without much success for long time sufferers and the first line of treatment is still the meds from over 40 years ago which says a lot about how far they’ve come with their trials 😞😞

I agree. What we read about research seems to use a template which includes, as you write "more research needed." They all want someone else to take the baton and cross the finish line but instead of grabbing the baton everyone is standing around looking at their feet. Problem is, after so much time there's little understanding of the disease. Are misfolded proteins the cause of PD or just a symptom? We don't know, but we'll take whatever money you've got to study it, and study it....

It's not a snail's pace because a snail actually has a pace.

Oh dear such pessimism! Not all research is done by Big Pharma. The breakthrough is going to be in labs like thisparkinsonslife.eu/a-day-in-...

What about Simon Stott’s recent paper - content.iospress.com/articl... ? Also Simon’s regular articles at scienceofparkinsons.com ? Seems to me there’s a lot going on.

Hello Farooqji,

I can appreciate why you feel the way you do. I share in your frustration. Apart from exercise, I'm not sure that there is good evidence for anything currently available that is capable of doing more than treat the symptoms for most PWP. I think there are many reasons for this that I won't go into now. However, as a scientist myself (although a microbiologist rather than neuroscientist), I do know a couple of places to look to see how much research is being done for PD.

As you may already know, in the US, the best place to look for clinical trials is clinicaltrials.gov. I'm not sure if this was necessary, but I searched for both "parkinson's disease" and "parkinson disease." I think the first spelling is correct, but I sometimes see the second used. If I confine my search to Not yet recruiting, recruiting, enrolling by invitation, and Active, not recruiting, I see 840 studies listed. If I start checking boxes to narrow things down, it looks like there are probably only a couple of active Phase III trials for "disease modifying treatments" going on now. (exenatide; NCT04232969 and maybe memantine; NCT03858270). That's deeply disappointing, but the situation looks a lot better if Phase II trials are examined instead--I won't try to determine how many of the 103 listed are for disease-modifying treatments rather than treatment of symptoms, but there are certainly several. I will also mention that treatment costs are typically covered in clinical trials, so if you meet the inclusion criteria, volunteer, and are accepted, treatment costs probably won't be an issue while you're in the trial.

As much as I would like to see promising drugs in Phase II or III trials, most treatments are just not to that point. If I go to an NIH website to get a picture of US government agency-funded total PD research rather than just clinical trials, I see 1851 currently active projects, with funding totaling just over $1 billion dollars. Not surprisingly, most of the studies are funded by the National Institute of Neurological Disorders and Stroke, but most or all of the other funding agencies have at least a few projects each:

reporter.nih.gov/search/lsY...

Depending on your perspective, that may seem like a little or a lot. Moreover, even if it seems like a lot, this may come as little comfort to you. After all, who cares how many millions or billions are being spent if that money hasn't bought a single treatment that we know will slow the disease. All I can say is that I try to keep my hopes up in part because everything I've read would suggest that an optimistic attitude may also help to slow the disease, at least in comparison to a pessimistic mindset. Apart from that, I truly don't believe we're in an endless tunnel. I think disease treatment and even cures are likely possible, and that we're getting closer to finding the first one every day, even if I have no idea how many more days will be required. Finally, I can't help but think that with that many projects funded by US dollars, and however many more funded by other countries or non-governmental sources, a cure (if not the cure) may be working its way through the system now!

Fifty years and counting since the last treatment (symptoms control) was introduced--Levadopa! Another 50 for the cure?

We walked on the moon. . .

kevowpd profile image
kevowpd in reply to Despe

There have been significant improvements in symptom treatment in that time. And so much more is known about PD now than even in the year 2000.

If you shut yourself off to information...

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Yes that should fix things. Put all your campaigning zeal into abandoning medical research.

It would really help if the Russians made it their mission to cure parkinsons. Maybe we'd get a cure faster then. 😁

For the first few years of my time with PD I believed the story that a cure for Parkinson's would be found in the next 5 years. And when a year later the same estimate was repeated unchanged I believed that too. But, eventually I got wise.

Even if we have a "cure" are we sure that we know what that means? Is it maximal in the sense that it gets everyone back to where they were? Or is it minimal, perhaps a slight slowing of progression, perhaps it works for only a small sub-group of PwP, perhaps it is so expensive that only a few people can afford it?

This is not a message of doom. I find it more useful to concentrate on what I can change to improve my quality of life. And there's much that can be done. In addition to drug based therapies, this brings into play a vast range of interventions, such as socialisation and exercise.

This is not an anti-science message. We should use the best science that we have available. We should think in terms of running n=1 trials on ourselves.

As a final thought, how many of us think that our drug regimen is within 50% of optimal?

John

Despe profile image
Despe in reply to johntPM

EUREKA, EUREKA, John. Maybe, maybe, John! In the meanwhile, we shouldn't hold our breath, just continue to improve QOL as you very well put it.

WinnieThePoo profile image
WinnieThePoo in reply to johntPM

Good points John. I think most of us a bit into our time with the disease recognise that 5 year thing. Of course what it really means is it will be AT LEAST 5 years before anything new comes on stream - not "we are just 5 years away from a cure". So when there was a recent post about a new molecule , not yet tested on humans, that would "stop parkinsons in its tracks" ParkBear rightly pointed out that if it turns out it can indeed do that, its probably going to be 15 years before a doctor can prescribe it. In the meantime, the more stones we turn over the more likely we are to eventually find gold under one of them.

And interventions play a part. I wear a red light hat and stomach pad every day, exercise every day, take a few supplements, and Doxazasin. However, I wonder how much some people overdo the interventions - particularly as carers for a partner . It seems to me there is a danger that some PWP become professional invalids, and that must affect morale, and more than almost anything else, I think positive thinking and rejection of "invalid syndrome" is my top intervention. If you are obsessively taking dozens of supplements and medications, at various intervals , avoiding meals your life can get overtaken by it and you just spend your day being ill. I try hard to do normal stuff. Looking forward to a fondu with friends scoping ski resorts tonight, and the rugby dinner on Sunday. Trashes every special diet (especially as I will have a beverage or 2) but unbelievably good for the soul 😀

Levodopa is great but the control it gives is not. Here is a drug that for many provides excellent relief, but there are problems with absorption, half life, peak dyskinesia, and wearing off. Attempts have been made to modify and smooth off the peaks and troughs, but it hasn’t been perfected.

For many, money might be best spent on absolutely perfecting the delivery system one and for all.

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