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Parkinson's Movement
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RE MCC950: 'World-First Pill May Stop Parkinson’s'

"A new therapy that appears to stop Parkinson’s disease “in its tracks” will begin phase-one clinical trials in humans next year.

"The biggest hurdle, apart from funding, is that MCC950 came off a patent. This means the researchers have had to develop variations of the original drug for intellectual property reasons. Those new drugs are currently being tested and, according to Dr Woodruff, proving to be even more effective."

Full Article: thenewdaily.com.au/life/wel...

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It's probably got mannitol extract in it

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I will volunteer as a non-PD person to test the drug in the safety trials. We need more volunteers to move the trials along more quickly

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I hope for success results but results are any long way off on this one. They have yet to start human trials. The percentage of medications that make it from preclinical to approval is very low and takes many years.

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Park_bear,

Statistically 1 in 300 medications that is brought to clinical trials makes it to production. When it comes to Parkinson not a single one of the dozens of treatments that cured mice, rats, flies and other species used to model PD, NOT A SINGLE ONE produced disease modifying effect in humans. What it conclusively proves is that all "animal models" they use in research are inadequate and they all miss some critical causal factor that we all (or at least most of us) have in our PD brains.

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PB, With a boost from MJFF maybe this one will be the exception(?).

"The progress of MCC950 to market appears to be happening rather quickly. Both the Michael J Fox Foundation for Parkinson’s Research and the Ireland-based drug company Inflazome are keen for human trials to start as soon as possible...

[They are on track to] "begin phase-one clinical trials in humans next year... The phase-one tests next year will determine whether or not the drug is safe in healthy people. All going well, volunteers with Parkinson’s will be recruited for phase-two testing in 2020...

"Whether Michael J Fox himself will be one of those volunteers is not yet known."

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I do indeed hope it succeeds. We shall see.

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What sort of boost can mjff achieve in practice? Phase 2 starts 2020 ends maybe 2022 and phase 3 starts immediately ends maybe 2027,product licenced in 2028. Great that it is being done and I really hope it works. A one button method of halting the disease progression combined with a really good pluripotent stem cell implant and Robert's your Auntie's husband. But it'll be a while. Meantime if inflammation is once again the sinner, can we do something about it as a stop-gap? But let's hope this one's a winner

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Thanks for the information brother.

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John ppppppplease stop posting the same information over and over again. We all know about the fast walking now and many of us do it so your efforts have not been in vain.

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Posts like the one above are why people invented block functions. It makes sense to make an abbreviated reply to a new HU member but in this case it is just ridiculous. No one wants to read a reply like that.

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Thanks Jeeves. Just because I have posted this news quite often, there are people who visit this site for the first time every day. There are also people who have never seen it before and I want to reach everybody.

You can just ignore it when you see it, or better still, write something that will encourage others to try it.

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thanks for repeatedly reminding us

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I know I am like a gramaphone record that is stuck in a groove. Even the computer has forgotten what a gramaphone is, but I am sure most people remember them. It is so important to me to get my message across to as many people as possible, I hope I will be forgiven for the repetition.

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That doesn't read like your post was intended as a genuine contribution to a discussion of the drug which was the subject of this thread. It sounds like it was an acknowledgement of gratuitous self promotion. There is too much SPAM in the world.

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I am not promoting myself, I get nothing out of people doing fast walking to help them overcome many of their Pd symptoms.

Isn't this forum here to discuss ways of helping patients to get better?

I am making people aware that there is an alternative to medication that actually works. It is a genuine contribution to the subject of dealing with Pd. Tell me what medication there is on the market that actually can reverse the symptoms of Pd? After more than 70 years of looking for a CURE, they aren't doing too well.

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!

Is this not wort discussing?

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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.

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Pooh, According to JP, he's been teaching and preaching the gospel of fast-walking for over 25 years (a hobby picked up after his original essential tremor diagnosis in 1992). His subsequent claims of 'reversing Parkinson's disease' coincided with his self-published book 10 years later in which he boldly touted a miraculous formula for "PD reversal". The audacity of his universally unsupported claims, together with the fact that he had heretofore never produced a hint of any diagnosis beyond that of essential tremor, promptly earned him the boot from his chairmanship position (volunteer) by his colleagues at the Parkinson’s Association of South Africa.

A person with fully functional faculties of reason would of course realize that, after 25 years of failure to produce/replicate a SINGLE instance of "PD reversal" to match his own (purported) case, the "reversal" he claims to have experienced is NOT one of a genuine case of PD. Unfortunately, JP is not such a person...

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Wtf.

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Sure - but he has suckered us both in to perpetuating his sin, and trashing this thread with posts not directly relevant to it. I'll start a JP thread later when I have time. I suspect JP is a soprano. My wife trained as an operatic soprano. Have you ever heard a soprano warm up? "Doh Reh Mi, Me, ME, ME ,ME, ME"

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It may require a few more months... 'Astra' hasn't been here long enough to fully appreciate JP's passion for self-promotion and his insatiable craving for admiration.

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If you think that what I placed here was spam then perhaps you must give me your description of spam. How can that article from Australia be reduced to a brief few words.

Do you not find that article interesting. The fact that somebody's father is feeling a lot better, due to fast walking should be of interest to everybody.

You can report me for anything you like, that is your prerogative!

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I did. And the post disappeared. I noted you had not availed yourself of the opportunity to demonstrate integrity by removing your unnecessarily long post and replace it with a reference to a relevant thread. I also noted that I do not cut and paste the text of every piece of research regarding the microbiome in my responses to posts - although they may well be relevant and helpful to a discussion of helping people deal with Parkinsons.

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We are all different. I want people to be aware that there is something they can all do to help deal with their Pd symptoms. It does not work with everybody but for those that it does could prove very useful to them.

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John - I want England to beat New Zealand at rugby in the next fixture, and Liverpool to win the Champions League and Premiership double this season, but what has that got to do with "First Pill may stop Parkinsons"? More pertinently, VERY BRIEFLY, as I have posted ELSEWHERE, I think management of the Microbiome might stop Parkinsons. We could discuss that on the appropriate thread. NOT HERE.

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Point taken. I am not expressing a wish when I offer the alternative to any 'treatment'. I am merely making people aware that there is a viable alternative to any 'treatment', whether it already exists or is currently being developed. Sorry to have caused all this controversy!

Please explain to me again, how I can easily refer others to my 'alternative' option.

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Great. Not looking for a bun fight. I see the too-lengthy post has gone. A redirect to your profile or a thread you create should do the job. Something like "let's hope this works, but it is very early stages, and in my 25 year experience all such previous hopeful announcements have failed to make it to market during human trials. This is why I promote my alternative solution. Please refer to my profile if you are not already familiar with this for more information ". Works for me. I can't speak for everyone.

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How do I go about finding your profile? I am 84 years old and struggle to keep up with this new technology.

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Sorry. sloppy language on my part. I intended to post a "suitable" response from you - which was why it was in quotes. I then meant "being invited to view your profile works for me"

I viewed your profile by clicking on your picture next to your post, and there was a fair bit there about who you are and what you believe works. I imagine if you click on the black circle with the faint ghost of a DATscan in you'll find mine - although I make no claim that you will be interested by it

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Hi WinnieThePoo, I am still in the dark as to who you are and what you do. You come over as a scientist or medical person of some kind.

I am a Pd patient, for whom the only qualification needed is to have Pd. I often find that Pd patients know more about Pd's affects on daily living than neurologists do. They tend to camoflage their message in a way that discourages patients from questioning it.

Maybe they don't like to be questioned.

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John. I am a PD patient - recently diagonosed, age 57. I am definitely a PD patient.

I have just nearly committed your sin of posting far too much about me on this thread. I have moved it to my profile

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My Pd does not tell anybody who I am, it only tells them that I have Pd. It does not tell them what other illnesses I have or what sort of a person I am and what I do to justify my existence. I have been open and up-front about all those aspects of my life. I have NOTHING TO HIDE!

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I was referring to the excessively long post which was irrelevant to this thread which is about a pill. This thread is not about you. And is not about me

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JP, Beyond your questionable 'talent' for fast-walking and fast-talking (with an emerging talent for cutting & pasting for self-promotional purposes), your background as a print shop operator hardly qualifies you as a credible critic of the entire pharmaceutical industry. Offering advice on crafting tales of science-fiction may be a more suitable niche for you(?).

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He has earned his right to bitch about the pharmaceutical industry because of his own personal experience as a longtime sufferer of their leading him on with dangling hope like a carrot on a stick. At least hes doing something about it and sharing useful information that has actually helped others. Give the man a break.

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So, JP's the 'victim' of an evil pharmaceutical industry and therefore his obsessive (and daft) claims of 'PD reversal' should be encouraged? Perhaps you can elaborate on your claim regarding his 'personal experience as a longtime sufferer of their leading him on with dangling hope like a carrot on a stick'(?). When evangelizing his wondrous fast-walking formula, he incessantly claims he has successfully 'reversed' his PD years ago. If true, how is he now deemed 'a sufferer'?

First, he has never offered any credible indication of having anything beyond his initial, self-admitted diagnosis of Essential Tremor (a non-parkinsonian condition) over 25 years ago. Conversely, the fact that his dubious 'reversal' claims have yet to be replicated by a single adherent to the mystical formula during the past 25 years (and over 15 years of non-stop hype since the debut of his farcical 'Reverse PD' book), shouts to more logical minds that his condition is something other than PD. What you view as 'useful information', I continue to view as insult to one's sensibility.

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That is just silly. Neil Armstrong landed on the moon. The CIA did not crash the planes into the twin towers. And Big Pharma is not deliberately withholding a remedy for my PD or anyone else's. They're trying real hard to find a solution. And regularly failing. Cos its tricky. But every failure adds a bit to the pool of knowledge and moves us all a bit closer to the result we all want. They have their limitations in terms of pure philanthropy - they only pursue (spend their money on) things they think can make them money. And beyond Pharma research, conventional science tends towards analysis segregation isolation and specialisation. I think PD in particular needs an integral synergistic holistic approach to research. But nobody is helped by promoting conspiracy theories.

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The fact is that it makes poor business sense to find a cure for something that brings in enormous revenues! This cannot be denied.

The fact that no cure has been found, for any of the chronic illnesses, tends to support the belief that the above is the reason! If you have knowledge of a cure for any chronic illness will you let us all know.

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Because I can't point you to a cure for a chronic illness, doesn't mean science is not looking for one, nor, more absurdly, that it is concealing one. It assuredly doesn't mean it is deliberately keeping it from you personally. Progress is being made regularly. Macula Degeneration and MS have recently benefited from stem cell breakthroughs. More people survive cancer than die from it as of a few years ago - a situation radically different from even 10 years ago. It is fair to say that Big Pharma will only spend its money looking for a cure if it has a prospect of getting that financial return back. That is very different from smothering and concealing cures to secure its profits. And a lot of research is carried out by not-for-profit organisations.

Regarding your "fact" you are presuming that the cure doesn't itself generate enormous revenues. Big Pharma wants to find the cure that takes over from all the remedies and make money out of replacing them. Rather than some questionable conspiracy theory about scientists finding the answer and hiding it out of mischief for profit, it is more likely that the problem may be a bit tricky to solve.

If a mad scientist had the cure for cancer, how much do you think Bill Gates would have paid him for it when he took it to him on a confidential "just to treat you" basis?

I find this attitude towards people working hard to help others a bit offensive, and a bit self-pitying, and wholly unconvincing.

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You appear to be a staunch supporter of the drug industry. I am not against the drug industry, but I am a realist.

If there has been a cure found for any chronic illness that does not kill the patients, then surely we would all know about it. The common cold comes to mind, for which 'they' have supposedly been searching for a cure since WW11.

On the flip side, when Ebola came onto the scene it was not more than two years before 'they' were able to stop the spread and prevent many patients from dying. Was that because it was a fatal illness?

Realism may be offensive, but as they say, "If the cap fits, wear it!"

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Daft. Smallpox, syphillis, polio - countless non-fatal diseases solved. Some are relatively easier than others. Science is trickier than you think

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My understanding of the word 'Cure' means that when you get an illness, the 'Cure' makes you better, not temporarily.

I think that the smallpox medications are inoculations to prevent you from getting that disease.

Does the Syphillis medication cure the patient? Isn't Syphillis terminal?

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I think you have a problem. Maybe I need to stop trying to respond constructively to someone with whom rational discussion seems pointless

Syphillis isn't necessarily fatal

The wholly satisfactory response to Ebola which you laud was a vaccine. To stop you getting it. Like for Polio

If you want to think you are important enough to be a victim of a deliberate Big Pharma conspiracy, then by all means enjoy yourself.

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We are discussing a cure for any chronic illness and you have given three examples that are not 'cures'. Vaccines are not cures, they prevent someone getting an illness.

A cure works on someone who already has an illness.

I am not the only 'victim' of Big Pharma's control of the way our illnesses are treated. We are all victims of it. None if us like it, but what choice do we have?

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Nobody has cured Ebola then

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Ebola is a terminal illness.

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John - please take a look at this excellent website, this should disabuse you of the notion that nobody is trying to find a cure or is sitting on one - pdtrialtracker.info . Thoughts?

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May I ask you:

Who controls the FDA?

Who specifies what is taught in Medical Schools?

Why do most trials fail?

Why do results of trials use the words, Can, Could, Maybe, or Possibly, when what we are looking for is Cures, Does, Will, or any other positive adjective.

Why are we expected to pay for medication that does not do what it says?

Why can't we return the medication to the pharmacist for a refund if it does not work?

Why can we not buy a small quantity of a drug to see if it does work?

Why can we expect a refund on all other products that don't work, or at least an undertaking from the manufacturer to make it work?

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John - you haven't answered my point. Bearing in mind that treatments for PD are more likely to stop or slow the progress of the disease rather than "cure" (like an antibiotic clearing an infection), do you still believe that nobody is working on such a therapy? Do you still believe that companies are sitting on such a therapy? If you haven't already, take a look at the link I sent first.

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I am not aware of any trial taking place that is testing a CURE. Can you point me to one that is please?

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Hi John - putting cure into capitals suggests you have a very high demand for a new therapy. Because of the biology of PD, returning our substantial nigra back to the state is was before disease progression started (usually many years before diagnosis) is very, very unlikely. That's why the focus is on therapies that can stop progression and start to reverse symptoms. There are some projects looking at replacing what's been lost (stem cells and gene therapy) but the scientists behind these are cautious enough to point out that this does not constitute a cure.

All of the projects listed here are looking to modify the course of disease progression - nebula.wsimg.com/50bca8dcf0... . So undoubtedly there is a lot of resource (people and money) going into this.

You made two points. The first, that nobody is looking for a cure because companies would lose money, doesn't stand up. The second, that a cure exists somewhere but is being withheld, again for financial reasons, doesn't make any sense whatsoever. Look at the list. If either of your allegations were true, it would be empty.

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Hi John - it's also worth watching this video, posted by iqbaliqbal a day or two ago - youtube.com/watch?time_cont...

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This situation illustrates part of what is wrong with the incentives for Big Pharma. The article says that the biggest hurdle was that the drug was “off patent” and that new variations of the molecule had to be developed.

Translated this means “because the drug is no longer patentable we are tweaking the molecule in order to secure a patent”.

The claim is made that the variations are more effective. But with all the incentives leading to the big bucks that can be made with a patentable molecule why should we believe the claim?

Big Pharma is not going to pursue molecules they cannot patent. That leaves the universities but their research is essentially an arm of Big Pharma so don’t look for help there.

The incentives in the research world need to change.

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Who invests money with no prospect of a return? Patents are the device by which inventors, including Pharma, can earn money from their investment in risky research. They are not charities. But they have made available every drug we have. If you want new therapies to be delivered, look to charities, look to paying more taxes, and look to ways for pharmaceutical companies to get a payback from their investment and risk taking. The alternative is just to wring your hands and whine about how unfair life is to you.

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I wasn’t complaining or wringing my hands. I was just pointing out the problem with existing incentives for Pharma research. I don’t expect big Pharma to develop a conscience but I do think there needs to be a way incent research where the payoff doesn’t have to be in the 100’s of millions of dollars.

We need a more rational system.

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OK. Point taken. I shall be grateful for a solution from any system

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Why so bitter. He, like all of us, are just trying to help each other.

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MOST are here to help each other. In this instance, however, you're confusing the malevolence of pretense for the benevolence of "help".

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perhaps you can tell me what pretense you are speaking about?

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Henry, "What pretense"?!? The ongoing pretense by a self-infatuated "entrepreneur" (who has never manifested anything more than essential tremor) that he has succeeded to do what no one else has managed to do in over 200 years ("Reverse Parkinson's Disease"), of course.

*When you manage to produce a SINGLE credible medical professional who supports your claims of having "reversed" a veritable case of Parkinson's, I will of course stand corrected (anxiously awaiting).

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You continually try to put other people off believing what I say by belittling me. There is a big difference between a 'Print shop operator' and an 'entrepreneur' who created a 'Printing Empire'. Your motives for doing that are very suspect.

Where would we be without the Henry Fords of this world?

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So, ‘Henry’, you now have an imaginary ‘empire’ to go along with that raging messiah complex???

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You are sick!

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It seems plain rude to hijack a thread about a drug innovation with a self-promotional post of the length of John peppers. This forum could evidently do with some moderation. It is frustrating that drug solutions have such a long lead time. Even fast-tracked will need a 3 year phase 3 so delivery in more than 5 years. But it seems John pepper is keen to give away free advice by driving people to a website where he can sell them something. If you want to be taken seriously, John pepper, publish a datscan, or otherwise objectively demonstrate that any one individual with PD changed it by speedwalking.

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While people are waiting five years for a possible treatment, they can start taking action now by learning how to do fast walking and in five years time they will possibly be a lot better and at least a lot fitter. What am I trying to sell them on my website? They can contact me and learn a great deal more there and directly from me, like the insert at the top of this string, which you object to. I don't charge for any information I send people. More people have received valuable help from me, and that article was just one of them.

What do you do to help others?

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wrong thread

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Quote , "The biggest hurdle, apart from funding, is that MCC950 came off a patent. This means the researchers have had to develop variations of the original drug for intellectual property reasons." To me means If theres no patent there aint gonna be no cure.

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you are right

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Wrong. It simply means that it's no longer under patent protection and that reverse-engineered analogs (generics) can now enter the market. Improvements or small changes in the formulation, however, could result in new protection for the new product and its developers. As is always the case, financial incentives ensure a rapid time frame. The recent 'off-patent' status serves only to intensify the race for its replacement (and participation in an upcoming trial can further shorten your wait).

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Yes. And the absurd result is that a tweaked molecule that is patentable may be preferred to a more effective off patent molecule. This is irrational.

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Michael j fox foundation remarks

michaeljfox.org/mobile/news...

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