cureparkinsons.org.uk/news/...
The gut/brain axis and the link with the Vegas nerve is well established. The cure, FMT. The research and medical establishment want to make their profit. Then Big Pharma has to get their mega billions. So basically they will have to pharmaceuticalise and then patent poop. Meanwhile, we slowly suffer and wait for the cure for PD. The cure is here now in the healthy microbiome: God's probiotic.
No, a cure does not exist.
A cure cannot exist without FDA approval.
'Does big Pharma know of a cure, but don't want to submit it to the FDA?'
No, big Pharma cannot know they have a cure without going through human trials to prove it's a cure.
Science has known about the gut/brain connection for many years.
Whenever there is a real cure in existence anywhere in the world, we will know about it.
Cure??? Is this a joke?? What will be the profit of all "concerned" if there was a cure???
Huge. Huge profit. Which is why they keep looking for one. If a drug like BIIB054 works there is a market of 10 million people. Monthly infusion at maybe $200 a shot. You do the maths
And the reason there won't be a single pill to not just stop pd progression but also reverse all symptoms is due to the nature of the condition and not profit. If such a pill could be produced pricing would be like zolgensma
Is the Vegas nerve connected to compulsive gambling?
(Sorry, couldn't resist)
Hehe 😀
ha. cute
Hilarious! 😂
Definition of care from the Oxford Advanced Learner's Dictionary:
“cure somebody (of something) to make a person or an animal healthy again after an illness”
If I were a mouse I would be happy to have at least a dozen cures, hopefully they will stop treating mice.
PS: I also accept the condition of a healthy carrier.
So true, can they stop with all the mouse studies and tell us what helps humans! Free the mice! Lol 😂 🐭
It is even worse than usual in Parkinson's because the model that is typically used is whether a substance protects a mouse against an artificially induced form of parkinsonism, which is a far cry from whether it helps an animal recover from actual Parkinson's.
I am not even sure why we believe there is only one thing that causes the little buggers to misfold. If Parkinson's can be triggered by a dozen (and perhaps more) different things, and that it may actually be a conglomeration of illnesses, with permutations, then there may well be many different causes of misfolding -- and, if that's not bad enough, aren't there some who say there can be PWP without Lewy bodies?
I am coming to believe it unlikely that a single pharmaceutical can bring the whole, big, complex, multifaceted thing to a stop. We could end up with 10 different pharmaceuticals each 1 of which ameliorate one or a few symptoms.
The potential rewards are immeasurable billions in revenue so I find it hard to believe that there is a cure one question why would they hide it too ridiculous to comprehend
I am a cynic! I don't believe that a genuine cure will reach the marketplace because neither Parkinson's nor Alzheimer's diseases kill the patient and those patients are CASH COWS bringing in billions of dollars a year. Why would anybody, other than sufferers of those diseases want to change that situation?
I have been able to overcome most of my Pd symptoms and live a normal life since 2003, just by doing regular fast walking and managing my stress levels, but is anybody in the
medical profession interested in what I do? NO! Why would they want us to get better?
Please forgive my negativity.
Not forgiven John. Help us with the walking. People are listening. I'm in a gait trial now with the VA. I go there and walk on a treadmill 2/wk and they measure. Positivity helps.
Fast walking must start at YOUR LEVEL! In other words, if you can walk as fast as YOU CAN for as long as you can, and repeat that time every second day for two weeks; then add a maximum of five minutes onto that time for the next two weeks. at the end of every second week add a maximum of five minutes until you get up to one hour. Then always walk as fast as you can, trying to improve the distance you walk in that hour. Never exceed an hour!
How fast is fast? If you are able to talk to somebody, when you think you are walking fast, then you are not walking as fast as you are capable of doing.
If you cannot speak at all, then you are walking too fast. just ease of a bit from that speed and walk at the speed where you are able to say two or maximum three words.
Keep a record of all your walks and witness the improvement each month.
Listen for feet scraping the ground and check that the front foot always lands on the heel, with the toes in the air. You should always be pushing forward with the toes of the back foot as it leaves the ground.
Do you need to know anything else?
John, You forgot to emphasize arm swing and extending the length of your stride. The rest is great.
Sorry about that! I have so many emails to respond to every day that I tend to rush everything,
I have taken up John's fast-walking and my resting hand tremor (while standing and resting my arm) has nearly stopped!
Good to hear this! Keep it up. It's nice medication, which costs nothing. You would think it would be more popular!
Thanks John, for everything. I am fast-walking through a bit of gout but still at it. Typing is still the issue as is drinking from a glass!
Get back to us with an update in a year.
me?
Hi Seacoast. Does your hand shake when you hold the glass? If it does, then try either of these two suggestions
1. Hold the glass tightly, while bringing it to the mouth. If that does not work then:
2, Hold the glass from behind. In other words, bend your wrist towards you and pick the glass up from behind and keep your wrist in that position and bring the glass to your mouth,
Let me know which is the best for you.
I’d love to Skype it out with you again (we Skyped a couple months ago and have been emailing ). It does shake John.
Do you know my Skype address? It is johnpepper_8. Please email me first, your intention to Skype me.
I do. Forgive the clandestine messages but this is your friend in the Hampton - NH area you’ve been emailing with. :). Would love to Skype again.
Please email the time you want to Skype and I will be ready. Remember, we are 6 hours ahead of you.
emailed you John
I have responded to that email
If PD is such a cash cow why do we have a world wide shortage of sinemet? Isnt that where you think all their money is made.
Shortage of Sinemet is replaced by other meds. Who knows what's going on behind big pharma's closed doors!
What other meds Despe?
Stalevo, Rytary, etc. I am not familiar with all the brand names, but they are all antiparkisonian meds.
Hi Hikoi. If patients believe that the only thing they can do is to take medication, and more medication, I/m not surprised there is a shortage of medication. Do you think that the drug industry is losing money?
A novel reason for a sinemet shortage - patient over use!
Do I detect an acknowledgement of the over-prescription of Sinemet? Or are you suggesting patients take more than is prescribed?
If there was a cure for any disease that is known only to the pharmaceutical or medical industries, it would not be kept secret.that kind of information would be leaked probably immediately. There is no hidden cure for PD because the etiology is unknown. Connecting the gut and vagus nerve to PD is one working theory. There are a myriad of other theories being researched. I do not think there is a conspiracy. I am a nurse; my husband was a physician, an oncologist who had PD. He battled the “cancer cure” conspiracies throughout his medical career.
The etiology is unknown. You are right, what about cancer?? Is it known??
Despe I think of cancer as a multitude of diseases. Yes we know the eitiology and can actually cure or arrest the progress of some cancers. But the causes of lung cancer are not the same as causes of skin cancer. The subtypes of breast cancer have differing trajectories and differing treatment approaches. We are at the beginning of our understanding of PD we have come along way further with Cancers.
I believe in prevention unless there is a gene mutation, but even then you can do something about it. Life long healthy habits would most likely prevent several diseases, including cancer and neurodegenerative conditions.
I suspect you weren't really asking the "nobody loves me, global big pharma conspiracy to hide a cure" fan club to get their cheerleaders out. Tiny details, like big pharma is not one united global conspiracy, but over a dozen large competing international listed stock companies, any of whom would love to find the cure, and pocket billions, whilst damaging the revenues of their competitors, need not concern us.
Your question rather was
Has the cure been found in the microbiome?
Is big pharma trying to suppress it?
The answers are "No" and "No"
The microbiome (or Poo) is my big theme. There is an ever-accelerating amount of new research in this field and I think it will prove significant in the development of useful improvements in PD management. I am still monitoring the option of a faecal transplant for myself. There are ongoing clinical trials for faecal transplants and PD. But, EVEN if it halts disease progress it isn't going to regrow dead neurons (to keep it short)
Big conspiracy to suppress? Hardly - nobody has tried that with faecal transplants for C-diff. There is appropriate scope for some regulation regarding donor screening and other aspects (there has now been at least one death from the procedure I am aware of now).
I fully agree there is NO conspiracy to suppress a cure. I have worked in a research center. Medical researchers are for the most part not interested in money. They are interested in the disease they are researching— many times for personal reasons—family members etc—and the other reward is the Nobel prize for Medicine. Bubee
Who are the medical researchers' bosses?? They may have the sufferers best interest at heart, but I don't believe they have the final saying.
Where I was working was funded by the federal government-- these were people of integrity and dedication and zeroed in on finding a cure They spend their lives on the search. It was an eye opener working with them. Bubee
It depends on your definition of "cure". You could have a weak definition: works for a particular PD subtype slowing progression in some but not all areas; it hasn't been through a robust enough clinical trial to prove its efficacy. Or a strong definition: reverses progression, returning you to normal; all PwP; good clinical trial results.
I don't think that by the strong definition a cure has been found yet. There is no conspiracy.
I do think that by the weak definition a partial cure has been found, but since it hasn't gone through clinical trials it hasn't been recognized as such. The problem is that the hidden hand of the profit motive means that there is no incentive to trial therapies which are not patentable. Again there is no conspiracy, locking away cures. But, the goals of big-pharma are, at least in this area, incongruent with the needs of PwP. And big-pharma will lobby to maintain their position.
I fully agree with JohntPM,
-
I add only the fact that research / discovery is a field that has nothing to do with the exploitation of patents. The findings are true if they are proven true based on the results obtained, whether they are patentable or not is a legal issue.
The more years pass the more it turns out that many drugs have the account that the ratio of risks and benefits is turned upside down and cannot be obscured by the typical maneuvers.
Just look at the trend of legal expenses and compensation claims of companies in the health field that are increasing so many are the disputes.
It could be that in the future prevention is the only answer to neurodegeratinve diseases that seem to be related to genetic causes and triggered by environmental factors such as pollution and environmental poisoning.
And it wouldn't be a good thing for us.
Its called Vagus nerve
A good indicator for PD cure will be when MJ Fox is cured,
I can understand the frustration of waiting for a cure, but this is pure silliness. Do you honestly think a drug company is withholding a cure so they can make more money? Give me a break.
A cure means you will take certain amount of meds, you will be cured and then no more! If you have to take cure meds for life, then it's not a cure. At least, that's how I perceive "cure." Profits will stop with the purchase of one or two cure pill bottles.
Honestly. You think if it weren't for profit it would be possible to produce a one pill cure for pd. Easy science. Just profit motive preventing it.
1) i and I suspect most people on this forum who have the disease would cheerfully call a one pill a day, or one infusion a month cure a perfectly acceptable result.
2) as i pointed out in my previous post to you medical licensing is perfectly capable of pricing one shot cures at a level to make them profitable
3) what's your alternative? Just put up with the disease and blame the pharma's?
What if the "cure" were to eliminate pollutants and non-nutritious foods?
Unfortunately, TECHNOLOGY is killing people. I have stopped using commercial house cleaning supplies, no insecticides, pesticides, buying organic, and spend most of my morning cooking. No processed foods which I never liked or ate as they upset my stomach. All in all, we are trying even harder now to live as healthy as possible since my husband was diagnosed a year ago.
Culture and lifestyle are very important in maintaining good health. THERE ARE ALWAYS EXCEPTIONS TO THE RULES.
"Give me a break." It will be a long one! 
Radotinib
Here is an example of a good chance or a cure but nobody seems focused on it.
Breaking the “PD cure” into three clear parts helps to clarify what needs to be done
- Halting the damage progression (primarily neuronal),
- Halting the damage process(probably many types but an example would be inflammation),
- Restoring damaged regions to health (Best chance is probably stem cells)
Solutions to these sub-issues may overlap but for a full cure all three need to be addressed.
The key here however that if you can solve the first sub
issue (Halting damage progression) for all current PwP
(Person/People with Parkinson’s) then this would
potentially provide additional time for a full cure to be
developed for them.
One of the most promising approaches to halting
damage progression is the re-purposing of existing
drugs. Success in this area would speed access to
therapies that may halt progression over completely
new drug types.
Of these approaches, the inhibition of tyrosine kinase
seems to be the most prospective. The most well
researched of these is the tyrosine kinase inhibitor (TKI) Nilotinib which is a stage 2 inhibitor approved by the
FDA for chronic myeloid leukemia (CML).
There are certainly bullish statements for researchers investigating this approach
Here is an example of two such statements.
- [ ] “ Additionally, the significant reduction of oligomeric
alpha-synuclein, which is expected to increase in the
CSF of PD patients as the disease progresses, suggests
that Nilotinib may reduce misfolded alpha-synuclein
accumulation and have a long term disease modifying
effect.” (See Ref 2)
- [ ] “Nilotinib, a c-Abl inhibitor, has shown improved
motor and cognitive symptoms in PD patients. However,
issues concerning blood-brain barrier (BBB)
penetration, lack of selectivity and safety still remain. Radotinib HCl is a selective Bcr-Abl kinase inhibitor that
not only effectively access the brain, but also exhibits
greater pharmacokinetic properties and safety profiles
compared to Nilotinib and other c-Abl inhibitors.” (see
Ref 3)
The best of TKI’s so far seems to be Radotinib which was
recently developed by Korean company II Lang Pharm,
has successfully passed Phase 3 Trials and has been
approved by the Korean equivalent of the FDA( For
leukaemia).
Radotinib has many advantages over Nilotinib but the
main distinguishing feature for PwP is its relatively
benign safety profile. This is caused by two factors.
Firstly it is the least toxic of the group with no adverse
events recorded in the trials up to 1000mg/day. It’s high
level of penetration of the Blood Brain Barrier (BBB) (3.3
times Nilotinib) means that the dosage can be much
lower for the same result.
A typical dosage for PD would be about 15mg/60kg
body weight. This is far below the average level required
for CML of about 800mg/day and the safety tested level
of 1000mg/day .
It is also about a 10th of the cost of Niliotinib and
doesn’t require a Cardiologist during trials.
Currently there are no human trials on the cards for Radotinib but this compound may be our best shot at
present. References below for those who may want to
look deeper. Reference 6 is good to read as he covers
the material with depth and it is accessible for non
scientists. I was going to leave my contact details at the bottom, however this sites privacy tips don’t recommend it.
If you have any further questions or suggestions on how
to start and find a PD trial for Radotinib you can get in touch (in the first instance)by using this sites messaging or posting system
References
1. 2016 - Nilotinib Effects in Parkinson's disease and Dementia with Lewy bodies
2. 2018 - Nilotinib increases dopamine metabolism and reduces oligomeric: total alpha-synuclein ratio in Parkinson’s disease
3. 2018 - The c-Abl inhibitor, Radotinib HCl, is neuroprotective in a preclinical Parkinson's disease
mouse Model
4. 2017 - Phase III Clinical Trial (RERISE study) Results of
Efficacy and Safety of Radotinib Compared with Imatinib
5. 2018 - Determination of a radotinib dosage regimen based on dose-response relationships for CML
6. 2018 - Science of Parkinson’s Discussion of Radotinib Nilotinib
Radotinib Off Label Use - Current
1. Nilotinib in Parkinson's Disease (NILOPD)
2. Impact of Nilotinib on Safety, Tolerability, Pharmacokinetics and Biomarkers in Parkinson's Disease (PD Nilotinib)
Please allow me to try to make this allegation, hypothesis, conspiracy theory or whatever you chose to call it as clear as possible. First, not a single one of you who replied referenced the article that was linked in my post, which basically states that scientific evidence is pointing to the gut or human microbiome is where Parkinson's disease originates. So what is a potential cure or at least a potential therapy PD: FMT Fecal Flora Implant. This therapy was and is used to great success for curing IBS and C. Difficille infection of the gut. Thomas Borody. an Australian gastroenterologist who has pioneered this therapy, began to notice some of his patients who also had PD, saw their PD symptoms reversed. This success with FMT didnt go unnoticed. The procedure was gaining in use and acceptability because it was successful in treating IBS C. diff and PD. So why is FMT unavailable for treating PD.? BIG PHARMA. They control the FDA and decided to severely restrict access to this simple affordable and effective therapy. There is a war being waged right now over who owns the rights to control and patent the microorganisms of the human microbiome, potentially worth billions of dollars in powerful disease treating drugs. If you would do a little basic research and put two and two together, then I think it would be obvious to you that Big Pharma knows where the future of medicine is headed. Yes, and they want to own it. I'm done here.
Excellent points!
I don't necessarily think there is a conspiracy or an attempt to withhold information on a break-through cure for PD. However, I do believe we are all capable of greed and selfishness given the right set of circumstances. I'm thinking of a file I stumbled upon on the Internet sometime in 2012. (2012 is approximate. I thought I saved the file, but I just now searched for it and couldn't find it.) What I remember is that it was a Word document written by a graduate student in a medical facility at some university. In the document, the writer was wrestling with whither or not to tell their Parkinson's patients about the suspected benefit that the supplement Coq10 had on Parkinson's. By the end of the document, the writer had made the recommendation that they not tell their PD patients about Coq10 because, they said, many of their patients might start taking the supplement, and that would severely limit the researchers' supply of "clean" subjects on which to test their drug trials.
Most likely, that Word document was never meant to be accessible to the public via the Internet and was yanked down as soon as it was discovered. However, I will never forget reading it. The experience taught me to keep my eyes wide open and always research new information that comes my way. It taught me that I should not be paranoid, but neither should I put my complete trust in human authority.
Cure? conspiracy theories of Pharma? is it specific to PD?
isn't the case for all disease Asthma, Diabetes, COPD, Arthritis, MS, Autism and many more?
The reason for not able to cure all these diseases is its origin is not known.
To Cure, first of all, you should know what causes it?
else it is search For a needle in a haystack. there are million compounds and million gene loci with out luck, you would know how many studies needed to end up in a cure. A way any layperson (patient) would attempt.
First fallacy is expecting it to be genetics or chemistry.
chemistry and genetics has evolved over a billion years. it is robust to survive this many years. it may not be the cause. the in species difference in humans is way less (5 %)then intra species (20%) like orangutan there would be an appreciable difference in genetic disease between the species which is not the case. Genetics and chemistry might not have degraded in the last 50 years to such an extent to cause disease in the mass scale.
next fallacy is expecting cure based on a cure of animal model. The animal model generates the disease by a genetic defect or chemical defect which isnt the case for human. thus it is possible to generate Diabetes or PD in mouse in a month whereas in actual human it takes 40 years to develop. In the mouse model, both the genetic defect and chemical defect is known which isn't the case for human. There are thousand of drug works in animal model which is useless in humans.
In essence, the lack of cure is due to lack of science. the universities and research lab is the place to achieve a logical cure in the shortest possible time.
The pharma company fallacy it weans away university lab from fundamental science-based logical approach to random search by showering funding and other benefits. the pharma company hype anything as drugs and make money. now scientists has a liking for it ditching their logical approach. Now Patients, Pharma and Scientist all approach the cure as a random exercise. Literally No difference between any claims. any body can cure PD, Diabetes and so on.
The best example of how pharma work is the TB. Only one in 10 exposure causes actual TB. if scientist solved the puzzle they might have eliminated TB. pharma companies weaned away these scientists to develop random compounds which may work as an antibiotic
Patients also contribute this by attempting anything that is portrayed as a cure even it is not scientific.
For everybody the cure is just a pill away!!! even though the cause is not known.
A cure for RwPs (Rats with Parkinson's)
One of my best friends got Parkinson's ... this is my journey to find a cure for him...it is going well !
MJF said "biomarkers to treat it prophylactically to effectively have a cure" Is a cure for Parkinson’s disease hiding inside us?
Is a CURE for Parkinson's disease in the pipeline? Scientists crack the secret behind the enzyme thought to be responsible for the condition
