Not long ago, I would have breathlessly shared this wonderful news about a potential cure. Now, I'm almost angry about it. The headline is extremely misleading.
The headline says, "Newly synthesized compounds can halt the degradation of neurons in a range of neurodegenerative diseases, including Alzheimer’s and Parkinson’s disease, researchers say."
However, the story points out that the obtained compounds were tested in cellular models and in rats.
It seems like this kind of story is reported on a weekly basis...yet here we are. Show success in Phase III trials in actual human beings and then I'll be excited.
When I saw this come through my news feed last night, I just rolled my eyes and got a little angry with the article's author and publication. Some people will print anything just to get more 'clicks', even if it raises potentially false hope among those of us who are susceptible to it.
The title and first few sentences lie (sure, it doesn't actually say that it can do these things safely IN HUMANS, but an omission is just another way of lying). This sort of article adds to the general public view that PD is now curable.
My mother-in-law will send me a link to it (or another that quotes it) and then I'll have to explain to her, yet again, that "No, this isn't a cure or even a solid guess at one yet, but thanks for keeping an eye out for me. Hopefully, they'll find a usable treatment soon." And then I'll learn from my wife that her mother thinks that I'm being too negative.
And (since I'm being too negative) I wonder if, somewhere, there's a wealthy philanthropist who just decided to donate to another cause, since PD (and other diseases) now have such an amazing cure?
I would remove this source from my news feed, except that it's just possible that they might have an actual valid story to report someday. Besides, I have to keep monitoring these types of articles so that I can guide my well-meaning friends and family through the half-truths.
Am I deluded in thinking that Anavex( human trials ongoing )SEEM worth a hope. Sure you've heard of it. If not Google anavex ... obviously. I do agree with you ..
I didn't mean to suggest that all hope was a bad thing. As PWP, we just need to keep reminding ourselves that (for better or worse) there's a fairly well-established path to get any particular remedy tested and approved. So, no, you're not deluded when you have hope, as long as you're realistic about the chances of it being proven out.
Now, there are things that we can try without approval, and some of us are trying them. Again, we shouldn't put too much hope on any particular unproven remedy. Even the article that started this thread is a fairly good and balanced one; you do eventually get the information you need to know where the remedy stands in the testing and drug approval process. It's mostly the title that's bothersome.
I haven't looked into Anavex, so I can't form an opinion about it. But I'll take a look. There are many such drugs in various stages of testing. I've seen many come and go, but that doesn't mean there isn't something right around the corner. We just don't know.
The headline is annoying; I avoid news sites like that.
The story itself is not too bad - though the leaving out that HSPs are probably not good targets due to cancer concerns is pretty annoying.
Stuff that makes me angry:
- not a lot of human trials on lifestyle interventions like sauna bathing that can safely induce the heat shock response (safe for the most part, unless you already have autonomic dysfunction)
- no human trials for off-patent drugs like MCC950 (instead having to wait for patentable derivatives - in this case Phase II for Inzolemid is supposed to start before the end of this year so at least there is some progress)
- needing an Rx for a continuous glucose monitor
- journal paywalls
{ there are other, more personal things I won't bother listing }
It looks like they addressed the issue, but it would be nice to actually be able to read the paper so I could see for myself.
My question arose since this was considered to be a problem by many experts. I learned about Hsp's from iBiology videos by Susan Lindquist:ibiology.org/speakers/susan...
I think the cancer issue is discussed in Part 3 of the first series (?) - it's in there somewhere.
A recent paper on doing the opposite - inhibiting HSPs in order to increase autophagy to clear misfolded proteins. In vitro study & not on neuronal cells, a limitation pointed out by study authors and the presenter in this podcast synopsis of the study:soundcloud.com/aging-us/tre...
And then there's this study in which HSP70 was put up the nose of male rats and "reduced inclusion numbers and the time to locate buried food." Very confusing, though I think I might gain some clarity if I could read the actual paper - but I can't since it is paywalled.
Also frustrating since sex differences is a particular topic of interest to me. In female rats, the intranasal HSP70 did not get into their brains.
This news article is a lie – the actual research has nothing to do with Parkinson's, so you have a right to be angry. The research abstract published here:
is about Alzheimer's only. Even so it is questionable, because the researchers claim amyloid is cytotoxic, yet treatments that reduce amyloid have not demonstrated clinical improvement in Alzheimer's symptoms. Many experts believe amyloid is a response to pathogens, and that this is the real problem in Alzheimer's.
Agree 100% with this : "researchers claim amyloid is cytotoxic, yet treatments that reduce amyloid have not demonstrated clinical improvement in Alzheimer's symptoms. Many experts believe amyloid is a response to pathogens, and that this is the real problem in Alzheimer's." Find and fight the pathogen, not the body's defense against the pathogen.
Why are people with extra copies of APP at higher risk of AD than those without? If amyloid is defense against infection then why wouldn't more APP reduce risk?
Sometimes the cause of something is not a good target for treatment. Putting a glass back on the counter will not fix it after I have knocked it off the counter and broken it.Maybe not the best analogy in this case.
Since the locus coeruleus appears to be damaged first, targeting amyloid may not work since the glymphatic clearance system is not functioning. I have questions from my readings on whether on not the LC neurons are dead or just moribund & can be rescued. One source seemed to indicate it is the latter - if that is true then I'm not sure why the antibody therapies don't help with the LC. Or maybe they do in the early stages and that's why aducanumab is being recommended only for early stage AD.
I have not read much on it and have not seen whether or not they were monitoring neurofilament light chain. If they do longitudinal studies of Nfl on patients on aducanumab, then they should be able to tell if it is helping (or harming) over the long term.
Just speculating : where the immune system provides an active defensive response, perhaps the generation of amyloid plaque is a passive defensive response. For PWP/PWAD the passive plaque and tau provide a sticky line of defense to slow the progression of the pathogen(s), and buy some time, until the active response can address the root cause. That explains why additional APP production as the result of a genetic disorder does not decrease risk -- the plaque and tau are not the active defensive component. For those with DS, genetic research to turn off excess APP production may provide benefit. But perhaps not so for PWP/PWAD where the production trigger is not a genetic disorder. For PWP/PWAD the question remains : why is the active immune system not successfully addressing the root cause to eliminate the need for further plaque and tau production? And that is why I feel the challenge is to identify pathogens that increase the risk of PD/AD and determine if addressing them through therapeutics or supplementation reduces the risk and symptoms.
Journal club webinar on recent study challenging amyloid hypothesis (Alzheimer's): youtu.be/fdtEjyfslgQ
I started researching Parkinson’s approximately 12 years ago for my Dad. I thought I was the first to realize he has PD. In hindsight I now think he knew and he knew there would be nothing to stop its progression. He was not in denial. He was protecting me and protecting himself from my researching it extensively and bugging him with my research. 10+ years ago I used to tell him, “Daddy, it’s going to be okay! There is going to be a cure!” I now realize how naive and annoying I was. I eventually stopped researching for him when he made it very clear he was not going to listen no matter what info I presented. His neuro suggested I “wait outside.”
He continued with his high sugar diet, frequent alcohol, and increasingly isolated and sedentary lifestyle. He is now in a nursing home and confined to a reclining wheelchair.
Better lifestyle choices could have slowed his progression. I firmly believe that.
Having resumed my PD research now for myself, approximately 10 years since I had for my Dad, I have been relieved that real progress has been made. Not the progress we hopefully wait for but some progress at least.
I say this as I sit with my red light helmet on my head having just eaten my last bite of my anti-inflammatory meal in my “time restricted eating window.” I am now going to organize my supplements for the remainder of the week;B1, ubiquinol, turmeric, etc.
The volume and investment in research has drastically increased since I researched PD for my Dad. And it will continue to increase.
Progress is painfully slow but it is there.
I do think we, PWP need to join together to advocate for more research funding and question what is funded.
I'm all in! I'm not even diagnosed with PD (diagnosed with REM Sleep Behavior Disorder) but they can squirt crap into my head 8 days a week if they want to (they don't want to).
It is usually the headline that draws our attention and the first few lines.Unless the evidence is published in a peer review journal,where they tend to be extremely cautious but give you facts and it is in real people,then that give you hope.Of course animal studies are important,but until the results are published in peer review journals and in humans be skeptical.Remember of course that even when a trial of a compound shows success,it will be years until the compound is licensed.The balance of efficacy and side effects is vital.Levodopa is still the gold standard for the treatment of PD.
I know , I know , its like every few months we hear something like this , but I'd rather be hearing about SOMETHING , at least it means they are still trying
I read this articles with a mix of curiosity and fun (when not the opposite)
i can not trust a (medical) system that prescribes Azilect (an pure, concentrated and artificial poison) because claimed as neuro-protective and don't even consider Glutathione (natural brain best defense), vitamine and SCFA's CoQ10, melatonin etc etc.
After more than 40 yrs of use (and abuse) we still don't know how Levodopa and carbidopa (the golden std) work in the body .
They have developed Duodopa for duodenal infusion of levodopa (and we know the side effects of this drug) - by the way why not injected IM? - and not for glutathione
They are working in the wrong directions: we don't know the causes yet but they are looking for the cure with a trial and error approach stubbornly ignoring any other alternative (es. B1, mucuna, LDN, ...)
BTW, coq10 failed phase 3 trials, perhaps because of BBB issues. Melatonin still looks promising in short term trials. But why should we expect that a 6-8 week trial will reverse a syndrome that has taken years --if not decades-- to develop? We need LONGER interventions in clinical trials, with longer follow-up.
I honestly believe that There’s no cure and at this rate there never will be no matter how many millions they spend and have already spent over the years trying to find one for this Godforsaken horrible illness…The main treatment for the illness is still the same since the 60s so that should tell you how far they’ve come trying to find a cure…All these studies and tests on rats and mice do is give us sufferers false hopes of a speedy cure…I wish I was wrong and hope that somebody out there proves me wrong before I’m completely consumed by it but Unfortunately I am rapidly going downhill and I’ve tried virtually every prescribed med out there which most made my symptoms worse and I’ve also tried natural remedies, and quite a few mentioned on this forum but to no avail…..😞😞
It’s a very frustrating ailment, that seems to not be well understood, by many people. Finding a cure for Parkinson’s is like looking for a needle, in a haystack! Prevention of getting a neurodegenerative condition in the first place, would seem to me, to be the best approach, at this time. For people with progressive disease, in advanced stages, there are times when the suffering is unbearable! There doesn’t seem to be a lot of support, and help, for PWP, in many places, in the USA, for example! That’s why this forum is so helpful, to me. If there was a better regimented program, nationwide, to support, educate and inform patients, to help them deal with Parkinson’s, it would make living with the disease, easier to cope, for those afflicted with it! We must not give up hope!
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