This is very hard to handle, knowing that we have a 30 year old cure and its being ignored while we look for "pie in the sky" !
This is about a substance that is present in every human brain and plays an important neuroprotective role. It was available for years in Europe and was making its way to the USA, and we would have it years ago, if it was not for a health crisis called Mad Cow Disease.
It is the only substance that has gone through Phase 2 trials for years in the USA and shown to Stop and even reverse the stages of PD.
So since the scare of Mad Cow Disease that killed this miraculous substance, another source for it was found. Sheep instead of cows. And in sheep the method allows for 40 times the amount to be produced vs. the cow source.
So all we need now is a small amount of money to show to the FDA that sheep derived is same as cow derived. ALL the other work is done.
We would have a weapon against PD as close to a cure as possible, one needs to continually take it to stop PD progress.
SO the question is WHY nobody is financing this PROVEN MEDICINE for PD ?
Big Pharma is not interested, they like synthetic stuff, and this can not be synthesized at this point, only animal sourced. So that would be a perfect project for the MJ FOX foundation right ? After all they after a cure not "investment" like Big Pharma.
I wrote to them and never heard back !
I am not involved with it in any way, just very frustrated to see how the medical research community works.
HAS anyone heard this story ? And does anyone have a way to bring it to the attention of the research community ?
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The source is now OVINE (lamb) and the animals are 5 months old when sacrificed to derive the GM1. These type of diseases like Mad Cow never develop in young animals.
I THINK GOV'T MUST BE COMPELLED TO FUND THIS.... IF IT IS INDEED LEGIT.
JUST THINK OF ALL THE DOPAMINGENIC DISORDERS AROUND.
WITHOUT DOPAMINE....WE'RE JUST WIND-UP TOYS WITHOUT FREE WILL..... THE VERY DEFINITION OF HUMAN FREEDOM IS BEING CHALLENGED BY POSSIBLY ENVIRONMENT MISTAKES THAT GOVS ALLOWED FOR.
"The null hypothesis for Phase I was that at week 24, there is no difference between UPDRS motor scores in placebo vs. GM1-treated subjects."
"The null hypothesis for Phase II is that long-term use of GM1 does not affect the progression of PD symptoms and that there is no benefit to early start of GM1 use. "
All other reporting opportunities said, "no text entered"
TOO BAD MAD COW HAPPENED, NOW BIG PHARMA HAS A SILENCER GENE WHICH SILENCES REPEATED VERSIONS OF AN ERRENT GENE. SORT OF ELIMINATES FOCUS ON NON GENETIC FOLDING DISEASES, AND THEY LOST ALL RESPECT FOR NATURAL APPROACH. I CAN SEE THEIR POINT BUT THIS GM1 CANNOT BE DUPLICATED IN LAB.
THER'S THE LONG RUN AND THERE'S THE INTERIM....AND THE LONG RUN IT'S ALMOST MORE EXPENSIVE THAN SOMETHING FOR THE INTERIM......THE ECONOMIC FALLOUT FROM FARMING THIS STUFF COULD BALANCE THE BOOKS. TIME FOR BIG PHARMA TO SHARE.
It's funny you should say that! I know that very few people believe that fast walking causes the brain to produce something called GDNf, which repairs damaged brain cells and reverses many of the symptoms of Pd, but everybody, including MJFF ignores my emails.
We just have to get used to the fact that Pd is a CASH COW and nobody wants to take it away.
I am very interested in your story, but like you, I cannot use it, not that I need to as I now live normal life, without the need for any Pd medication. The fact that few people believe this i their problem, not mine.
You have done something impossible with your method and I admire that.
Sadly I have come to the realization that I will NOT exercise to save my life !
I have long history of severe depression since childhood, and now at 60, PD.
Some Doctors tell me that Depression and PD don't go together, its either one or the other, and I am not talking about depression after PD but a lifetime of depression as a risk factor for PD . But it seems now I got them BOTH.
I never thought depression can get so much worse but PD did that.
That is why I am desperately looking for a "chemistry solution"
GM1 glycoside causes increase in GDNF btw, In the case of GDNF they have an excuse, they blame it for causing dangerous side effects. GM1 has no side effects, but has "money issues". It can not be synthesized on top of stainless steel counter for pennies and be sold for 100K USD / year like Nilotinib (Tasigna).
GM1 is derived from sheep and seems Big Pharma is not interested in middle men. The estimate is ONE lamb per patient per year. I must assume my life is not worth that much !
AS for MJ FOX and his foundation, its a puzzle to me, I mean after all HE IS SUFFERING from PD personally FFS, its not like he is there for the money only.
Maybe, and I am guessing, he is comfortable where he is and a cure will cause him to lose the sympathy he is getting and the donations, OR he is getting the wrong advice about GM1 from his advisors, after all he is just an actor and they are not known for scientific abilities.
Few months ago I saw Fox on TV doing one of the functions I can't remember what it was. He looked like a Broken Man, slurring his words. Might have been at his off time I don't know. However my thinking was a disease has caught up with him.
PEPPER, I BELIEVE IN YOUR METHOD, BUT REALITIES PREEVENT ME FROM FAST WALKING. I CAN'T CATCH UP WITH THE DISHES! (LOW ENERGY, BUT I MOSTLY FEEL OVERWHELMED. I HAVE TO MAKE SOME LIFE CHANGES FIRST) I AM NOT IN A TEMPERATE ZONE, THE MOSQUITOES ARE OUT, THEY'RE HAVING A GOOD TIME IN THE TALL GRASS THAT USED TO BE A LAWN, BECAUSE OF THE RAIN WE'RE GETTING. (HONSTLY, I THINK WE'VE HAD ABOUT 4-5 SUNNY DAYS) SO MUCH FOR MY VITAMIN D!
WE HAVE HIGH SUICIDE RATE HERE, ESPECILLY UP NORTH,,, KIDS ARE MAKING SUICIDE PACT, I'M EXPERIENCING LAUGHING JAGS, I MUST BE HYSTERACLE WITH ALL THE SOCIAL STUFF GOING ON AROUND HERE.
Do you not have any shopping malls near you in which you can do some fast walking? Maybe there is an indoor track you can walk on? I appreciate that it can be difficult in the winter but I have people with Pd in Canada who are doing well.
I agree that walking is good for PD, but the closest mall or indoor track for me is 30-35 minutes away. I live in Indiana. Walking outside consistently in Indiana is not always the best. In your opinion, will walking on a treadmill give you the same results?
Walking on a treadmill is better than not walking at all. There are lots of arguments about this question. As we are dealing with a brain problem and as we know that you can watch a video while walking on the treadmill or even read a book, there isn't all that much brain-work required. But if you set the treadmill to climb 5 degrees you are at least doing something energetic. Whether the brain produces GDNF while walking on the treadtmill, who knows?
I would be very curious to see a DATSCAN, Dopamine Active Transporter Scan of your brain.
This can point if your method affects defective Substantia Nigra neurons OR you are activating other circuitry passing on the Substantia Nigra functions to them.
Ever had a DAT SCAN btw ?
ALSO, did you ever stop fast walking since your breakthrough years ago ? And how long after stopping you revert back to the familiar "PD scene" ?
I have never had a DAT Scan and don't know if I can get one here in SA. I have to pay for all my medical expenses myself and cannot afford to spend large sums of money on something that is purely for interest purposes.
If you are prepared to pay for a scan and there is somebody to do that scan here I would be happy to oblige.
I have had to stop the walking several times due to injuries and/or chest infections. The longest time was five and a half months, during which time I became very aware of my new clumsiness and speech and coordination problems. I have recently been unable to walk because of a bad dose of flu but hope to start the walking again next week.
So SA does not offer medical coverage for its senior citizens ! ? Sounds like we are in similar circumstances. I also need to pay out of pocket medical expenses, no insurance. That is why I selected to take the older and cheaper MAO B inhibitor Selegiline.
ALL these researchers you came in contact with, including Doitz (spelling?) never offered you to do a DATScan ? That would tell us a lot about your case John ! You are unique and I doubt there are many cases like you.
Is your PD the classic Idiopathic PD or is it some other less aggresive kind ?
As for the flu and colds and winter miseries, have you ever heard of SELENIUM ? Many of us are depleted in that mineral. I happened to have an immune function test at the time I was experimenting with Selenium and noticed a tremendous boost in immune cells ! So get your army to "Fast Walk" with it
It's nice talking to you. No, not only do we not have free medical aid we don't even have an old age pension for anybody who owns a house, regardless of the fact that you might not have any other income. So we have to save up, while we are still working and hopefully we have enough to live on when we retire.
When I started work, many years ago, our Rand was worth one British Pound or around 2 dollars. Since independence our Rand is now worth 7 US Cents. Guess what that has done to the value of my savings!
Dr Doidge did not do any testing on me he only examined my medical records and spoke to many people I have been able to help. An ordinary Ultrasound scan costs close to what I was earning before I retired. I retired before independence, but it has to relate to when I put the money away.
I have classic idiopathic Pd, even though some doctors, who have not examined me, have said that I do not have idiopathic Pd because I don't look as if I have Pd and because there is no cure for Pd then I could not have had Pd in the first place.
I will look into the selenium and see if it helps with the chest problems, which are all related to the Pd.
I recently, towards the beginning of this year, went to see the top neurologist in Cape Town to get his diagnosis of whether I do or don't have Pd.. He did his normal series of tests and he said that he has no doubt that I do still have Pd. He said that my Pd is not idiopathic Pd. What that means I do not know, because idiopathic means cause unknown. That would mean that we know the cause of my Pd, which of course we don't. You get my meaning.
I take MJF at face value- if sheep lead to a cure, then yes, if he is informed, he would advocate. It is complicated to get "to him" or his inner circle, through layers of insulation ...but if science behind the sheep is firm, wouldn't it have already circulated through his organization?
If there is firm, evidence-based clinical findings--then please, let's Repackage it & keep trying !
Last year, a group of pwp from around the world were sharing notes on a PD forum like this one and they wanted a certain compound which was not approved and had only been through a very small, uncontrolled study, but with dramatic results, so they pooled their money and had a compounding pharmacy make the stuff. Their cost was low, about $30/month. After the pharmacy made the stuff, it was sent to a lab which did a tandem mass spectrometry test to verify it was what they ordered on a molecular level. When that lab sent a certification to a third party holding the money (like PayPal,) the money was released and the compound was divided into batches based on how much each participant bought and mailed to them. The group kept expanding as more people wanted in and over about a one year period, they made four buys.
There are many "buy groups" (think; Dallas Buyers Club) for many illnesses that do this when they don't want to (can't) wait for the bureaucracy. Perhaps, the same could be done here.
In the North American Clinical Trial Registry, there were 21 registered projects related to ganglioside. Only one project addressing ganglioside for the clinical treatment of nervous system diseases has been finished. In that study (NCT00037830), Schneider et al. (2013) performed a randomized, controlled, delayed-start trial of GM1 for Parkinson's disease. Seventy-seven subjects with Parkinson's disease aged 39-85 years were randomly assigned to an early-start group (GM1 for 120 weeks) or a delayed-start group (placebo for 24 weeks followed by GM1 for 96 weeks). At 1 and 2 years after treatment, washout evaluations were conducted. Seventeen additional subjects who received the standard of care were followed for comparative information about disease progression. The primary outcome was the change from baseline in the Unified Parkinson's Disease Rating Scale motor scores. The results showed that, at 24 weeks, Unified Parkinson's Disease Rating Scale motor scores were lower in the early-start group than in the delayed-start group. At 72 and 120 weeks, a sustained improvement was found in the early-start group. Symptoms were evidently worsened in both groups during washout. GM1 use for 24 weeks was superior to placebo for improving motor symptoms, and extended GM1 use (for up to 120 weeks) resulted in a lower than expected rate of symptom progression. The data from this study suggest that GM1 may have symptomatic and potentially disease-modifying effects on Parkinson's disease. The mechanisms of action underlying the nerve protection and nerve repair effects of ganglioside remain poorly understood. The future studies should be carried out to investigate whether the neuroprotective mechanisms are associated with the structural and functional regulation of lipid rafts.
My posting this doesn't mean I think there is much there - it's just FYI. The language is vague, i.e., it doesn't quantify how much it "may" have slowed progression, nor does it specify in what % of participants. I'd cool it re thinking of a buy group unless someone can point to more robust data. I wish I didn't throw out the idea.
MORE COMPREHENSIVE..............BUT JUST PLAIN LANGUAGE, WHAT PERCENT PEOPLE BENEFITED,, IN ANY WAY AND WAS PROGRESSION SLOWED, STOPPED.... THE PERTINENT RESULTS NEVER MIND THE UNDERLYING LAB WASHOUTS.
GM1 can not be made in a lab in appreciable amounts. Only safe source atm is Sheep.
Since Big Pharma can not synthesize it they are not interested.
THAT IS where MJFOX and similar organizations come in.
It will take 800K to prove to the FDA that ovine GM1 is the same as Bovine GM1, that is coffee money to drug makers.
Only way we gonna have GM1 is to go through the regular drug procedure to approval, like it was done years ago for it, and revive it from a different and safe source.
At the end of the first six months of the study, the early-start group had significant improvement in UPDRS motor scores versus a significant worsening of scores in the delayed-start group. Over the next two years, early start subjects maintained much of the initial benefit of GM1 treatment, showed relatively minor symptom progression compared to patients using standard anti-Parkinson medications, and at the end of the study, their symptoms were still less severe than at the start of the study over two years earlier.
lets face it guys , pharma still dont have a clue about this disease, dont know how it starts , dont know where it starts , cant even predict its progression ...
but....if we're not being fooled....gm1 strongly suggests what the problem is. .and they witnessed cell acting like nerve in gut..... we're getting there.
Response from my neurologist to my question via mail about GM1
Dear sir,
I know that this drug is being investigated in a number of studies, and that there are some promising results, but we must wait for the further course of this investigation to make more definitive decisions.
It strikes me (on a positive note) , that there ARE multiple new avenues for treatment opening up ... off the top of my head ,we have that growth hormone thing , thats pumped into the brain via a 'port' in the patients skull ... seems promising... we have tha Alpha Synuclein 'virus' / antibody ... (this could halt cognitive damage ) ... and perhaps more exciting is the new wave of stem cell stuff (many scientists seem optimistic on this one ... also theres the NTCELL thing , that seems promising for stage III and above ... but I fail to see why you have singled out GM1 ? ....
2) WAS in circulation as an approved drug, now there is an ovine safe source
3) Endogenous molecule that's low in PD, and works for neuronal issues for many other neurological issues
4) Method Of Administration. NO holes in brain, was administered as a subcutaneous injection which I can give myself without pain, and can also be given as a renal spray, also self administered.
5) Peanuts for approval, compared to the others "Pie in the Sky" approaches you mentioned, although if big pharma gets a hold of it it, it will be more expensive than Nilotinib I am guessing. Novartis
So GM1's natural ovine source makes it unattractive for PD by big pharma but a solo Vet. Dr. Larry Holler with his sheep farm might get it approved easier for Huntigton disease than PD.
I linked a 3 min video and a longer 1 hour about it if you scroll back in these messages, when you link youtube here it opens up with a window instead of a URL that one can decide IF they want to see it. Wish there was a way to limit the posting to one line url instead of a huge window.
I was interested in your post and after reading all your references and your replies I have a suggestion why doesn't every member of Health unlocked and whoever else may be interested Email MJ Fox organisation and ask have they looked into this GMI cure and can they give us a report on findings I don't know how many of us are on Health unlocked but it would be a great many and may elicit a response particularly if we all send our emails on the same day !!!
Hi QNTT it's not so much anger but it's the frustration that you and all of us get with people who don't do what they say or entities that don't treat everyone on an equal basis.If it's a valid genuine enquiry about GMI and the research results that have come to light you would expect a response from the studies to be made available for all
It's hard to accept that a big organisation like MJFox would not willingly share info and test results and or have discussions with other professionals about their findings working together is what will crack the PD mystery cure
I agree with his lawyers. He needs to stop screwing around and move to New Zealand. It's not politically controlled by pharmaceuticals so they can more easily get permission to treat patients. NZ has 60 million sheep compared to the U.S. 6 million. It's a good vacation place and they speak English. It costs more to travel there than it would cost to get treated. Open treatment slots to bidding. Highest bidder wins, and funds get sunk into increasing the flock. Rich people go first, financing everyone else. Once NZ puts U.S. to shame, U.S. will have to allow it. I say NZ instead of Australia (100 million sheep) because NZ has the same population as Alabama, so the politics can be influenced quickly and easily by reason, as long as there is not a lot of political money going against you. But the political money in NZ is SHEEP. NZ sheep industry should be his investor, not the freaking poverty-stricken U.S. sheep industry. He should get 10 times more money from the NZ counterpart to the U.S. to set up shop in NZ, then the NZ sheep industry show him how to get any law he wants pushed through their legislature.
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