A response to 2Sunny regarding recent posts on trehalose and nicotinamide riboside

You quite rightly preface all your remarks by stating that you are not a doctor; but then you proceed in an attempt to convince people that they should experiment with two substances, the safety of which is not proven in the quantities in which they need to be taken.

The safety of our Friends and forum users is our priority, which we have to put first. We would be remiss in our duties if we did not highlight the dangers in consuming substances which are not yet approved as safe. Ataxia UK, as the patient group for people affected by ataxia, cannot allow this site to be used to advise or persuade people (explicitly or implicitly,) that they should take substances which may be dangerous. It is not sufficient to suggest that because they are freely available on the High Street or Amazon, they are automatically safe. They are only safe if they are taken at the recommended dose.

We recognise that there is lots of potential for treatments and cures in re-purposing natural substances and drugs that are already available. In April 2014 The Lancet published a paper from Prof Fechtenstein on the small trial he had done (funded by us) into the potential use of nicotinamide (B3) in the treatment of Friedreichs ataxia, which had positive results; we are now seeking funding for the larger trial that is required. Shortly after these results came out, 3 people with FA chose to take nicotinamide in large quantities and ended up in hospital with liver failure. Just because a substance shows promising results and is freely available does not mean that it isn’t dangerous.

Ataxia UK is not in receipt of funding from Bioblast (or any other pharmaceutical). In order to bring treatments and cures to market and make them accessible to all, we recognise that it will be necessary to work in partnership and collaboration with pharmaceuticals. However, we also recognise that the agendas and priorities of patients and pharmaceuticals are often VERY different. Ataxia UK has not, and will not, do anything to compromise our ability to speak with an independent voice on behalf of people affected by ataxia (who also form the leadership of the charity by being its Trustees).

I find the tone, and some of the content, of your responses to my previous post on this topic very offensive. You know nothing about me, or the committed work of Ataxia UK and its members over the last 50 years. You did not leave the ‘Living with Ataxia’ site voluntarily, you were banned by them for conducting yourself in a similar fashion to the way that you have here. Ataxia UK has never before restricted anyone's use of this site, I very much hope you will be the first and last.

18 Replies

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  • Well said🙂xB

  • Did you ban Joe? I'm not sure if that's fair. He was sharing his research with us and now we may not even be able to contact him of our free will.

  • Well we didn't appreciate being told to do our research, but that a spoonful of trelahose is in your tea is

    "Very dangerous" in patronising shouty capitals

    Something that has been the only thing offer any help to me - and I feel better for taking the trelahose (and a spoonful of hope) from him.

    The post you refer to gave us all a little bit of hope. Like I say I feel a lot better already. Thank you sunny .

    What do all of these charities actually do?

    Apart from, as above?

    And arrange expensive conferences to Italy, when the people that fund them think the money is actually going to help people like us. Now.

    Not in 10 years when you have finished lining each other's pockets with drug trials

    The state of us all - fighting for PIP and living in poverty because we can't work? It's all about money – so why don't you raise some for us and distribute it.

    What non sufferers fail to understand is the veryimportant element of quality of life and some some semblance of control, independence and autonomy

    Don't take it personally, we are just trying to be understood and support each other, and frankly don't have time to waste precious energy listening to you justify yourself.

    Blessings to all this day. And thank you to all of the intelligent, sensitive, cognitive and wise people Who take the time to post and genuinely help others. Like me.

    They don't understand, don't waste your breath and let's crack on

  • I think it's a shame if someone has been banned. I don't think Sunny's response was aimed at any individual personally, although I agree the tone was a bit off. Perhaps he could be forgiven as passions and emotions run high for all of us facing and living with this illness. A bit of understanding from both perspectives is needed.

    X

  • I agree

  • Agreed Hope99 we should be allowed to share what works for us - after all, isn't that what this kind of community is about? The minute we start banning people for being enthusiastic about their positive results is the minute I start to question what this page is really about and that makes for a sad day.

  • My thoughts too

  • I was once scolded for encouraging a certain drug. Maybe it was here or on the LWA site. Now I have learned to keep my mouth shut. I have no idea what anyone does anywhere or why a solution is so elusive. Research? What has it produced? N

  • Bearing these expressions from various members, would you please consider letting Joe (2Sunny) back into the group? Don't forget that he is still himself, someone who is affected by ataxia - precisely fitting the bill of what communities like this claim to support.

    Did you stop to think that the reason for his poor delivery was down to frustration? We all feel that way sometimes but are you going to carry on banning people for feeling as though they aren't being listened to?

    He was not blindly promoting drugs. He was backing everything up by carefully considered research and asking us to take what he was saying with a pinch of salt and to consult medical advice as he is not a doctor. What more could you have wanted? Are you so opposed to us trying to clutch at any hope that might be out there? To help ourselves and families? What research have you shared of late?

    Just consider - you were too hasty in removing him from the community and listen to us when we say that you should let him back in please.

  • READ THIS AND KEEP SCROLLING N

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    Artificial Sweetener a Potential Treatment for Parkinson's Disease

    Sagol School of Neuroscience researchers say mannitol could prevent aggregation of toxic proteins in the brain, in a project funded by the Parkinson's Disease Foundation and the Lord Alliance Family Trust.

    18 June 2013

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    Mannitol, a sugar alcohol produced by fungi, bacteria, and algae, is a common component of sugar-free gum and candy. The sweetener is also used in the medical field — it's approved by the FDA as a diuretic to flush out excess fluids and used during surgery as a substance that opens the blood/brain barrier to ease the passage of other drugs.

    Now Profs. Ehud Gazit and Daniel Segal of Tel Aviv University's Department of Molecular Microbiology and Biotechnology and the Sagol School of Neuroscience, along with their colleague Dr. Ronit Shaltiel-Karyo and PhD candidate Moran Frenkel-Pinter, have found that mannitol also prevents clumps of the protein α-synuclein from forming in the brain — a process that is characteristic of Parkinson's disease.

    These results, published in the Journal of Biological Chemistry and presented at the Drosophila Conference in Washington, DC in April, suggest that this artificial sweetener could be a novel therapy for the treatment of Parkinson's and other neurodegenerative diseases. The research was funded by a grant from the Parkinson's Disease Foundation and supported in part by the Lord Alliance Family Trust.

    Seeing a significant difference

    After identifying the structural characteristics that facilitate the development of clumps of α-synuclein, the researchers began to hunt for a compound that could inhibit the proteins' ability to bind together. In the lab, they found that mannitol was among the most effective agents in preventing aggregation of the protein in test tubes. The benefit of this substance is that it is already approved for use in a variety of clinical interventions, Prof. Segal says.

    Next, to test the capabilities of mannitol in the living brain, the researchers turned to transgenic fruit flies engineered to carry the human gene for α-synuclein. To study fly movement, they used a test called the "climbing assay," in which the ability of flies to climb the walls of a test tube indicates their locomotive capability. In the initial experimental period, 72 percent of normal flies were able to climb up the test tube, compared to only 38 percent of the genetically-altered flies.

    The researchers then added mannitol to the food of the genetically-altered flies for a period of 27 days and repeated the experiment. This time, 70 percent of the mutated flies could climb up the test tube. In addition, the researchers observed a 70 percent reduction in aggregates of α-synuclein in mutated flies that had been fed mannitol, compared to those that had not.

    These findings were confirmed by a second study which measured the impact of mannitol on mice engineered to produce human α-synuclein, developed by Dr. Eliezer Masliah of the University of San Diego. After four months, the researchers found that the mice injected with mannitol also showed a dramatic reduction of α-synuclein in the brain.

    Delivering therapeutic compounds to the brain

    The researchers now plan to re-examine the structure of the mannitol compound and introduce modifications to optimize its effectiveness. Further experiments on animal models, including behavioral testing, whose disease development mimics more closely the development of Parkinson's in humans is needed, Prof. Segal says.

    For the time being, mannitol may be used in combination with other medications that have been developed to treat Parkinson's but which have proven ineffective in breaking through the blood/brain barrier, says Prof. Segal. These medications may be able to "piggy-back" on mannitol's ability to open this barrier into the brain.

    Although the results look promising, it is still not advisable for Parkinson's patients to begin ingesting mannitol in large quantities, Prof. Segal cautions. More testing must be done to determine dosages that would be both effective and safe.

    As originally reported by AFTAU

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  • I best get my tuppence worth in before I get banned as well....!

    Is anyone listening? Do you hear that we are asking you to reinstate Joe?

    If you read all have his posts in detail, you would say that he presented enough research, (which he did on his family's behalf and then went to the effort of telling us )– because it thought it may help.

    His motivation was to help, because his family was helped. Going from not walking to taking a few steps is a big difference for us,

    Let's keep it real people, Brussels sprouts are toxic in large quantities to humans?! There was no evidence presented and none available on the Internet about Niagen being potentially toxic – apart from, like everything else; in very large quantities.

    Trelahose is a type of glucose sugar, so you can't overdose on that either – unless you are stupid.

    My friend regularly overdoses and diet Coke? Why because she drinks too much of it

    We are all sick enough to be very careful about what we ingest – and with respect, we are all looking for information about things that will alleviate our symptoms and don't need babysitting, or treated like we are cognitively impaired and can't make informed decisions for ourselves.

    Joes family demonstrated a marked improvement – which is why he informed us all. To help. How is this thread helping exactly ?

    I suspect that Joe will take offence and take himself off to a different site, where he is allowed to speak freely and present his evidence and personal experience freely.

    I hope that this doesn't mean that everyone else will be nervous about posting information about things that help them.

    I take a squirt of pure vitamin E oil in the morning and feel better for it. The research supports this in addition. And for the avoidance of doubt, it can be toxic in large doses.

    I used to be a lawyer and have considered both sides of the coin - in conclusion, Joe should be invited to come back and we should all just calm down and crack on and carry on supporting each other, while the powers that be monitor the content to ensure that we are not been given dangerous or in accurate information.

    I won't hold my breath for a magnanimous response, but here's hoping and thank you, if I get banned

  • I hope they see sense and do not ban anyone!

    I love hearing all ideas.

  • Here, here. I felt embarrassed when I read the posts yesterday and can only commend your entirely justified response Sue. Empty vessels make the most sound my primary school teacher used to say - this is a perfect example.

    Kind Regards, Derek

  • I'm not sure whether you are insinuating that I, or Sue was an empty vessel?!

    Either way ironically, you demonstrate the very point you make.

  • I understand fully what Sue is saying but I like this forum because I thought you could give your opinion on anything. We are mostly adult lay people with a horrible and cruel disease in common - looking for ways to help and support each other. We can decide for ourselves but surely it is good to have the latest research pointed out so you can look at it objectively and decide what we want to do with our own bodies - for example I have decided to give Trehalose a go and avoid nicotinamide riboside until proven more. The way I see it is I am getting significantly worse, and more depressed, so I have nothing to lose and at the end of the day it is my body that it is happening to. Part of this is actually a placebo effect. I was on a real high for a few days after reading Joe’s post - even the thought of trying something new, however effective in itself, gave me a noticeable lift in my mood and health. The Niagen website is very interesting though and I am very grateful for having it pointed out by Joe. Surely it is good to have a variety of opinions but I understand that Sue needs to tell us the official opinion too. Surely it should our decision and nobody is forcing anyone to try something against their will.

    I do not want to get into the politics of the situation with banning and I understand that you cannot support what Joe told us but I do think it is important to have as many opinions on subjects as possible and at the end of the day he and his family are sufferers of this disease too so surely we should welcome him even if you do not agree with his view.s At the same time, I do not think it is fair to criticise people at Ataxia UK who are very dedicated in supporting sufferers and the search for treatments. Understandably, emotions probably ran a bit high there.

    Having ataxia and its added testing complications in your family and watching close members die and suffer is horrible. You quickly learn that everyone has a unique way of dealing with the illness. There are many routes you can take but it is up to the individual to decide what is right for them. Although Joe is not a doctor I will be forever grateful to him for telling us his way.

  • Thanks Litty, I agree entirely, you've expressed my feelings about this far better than I did!

    X

  • Thanks I really hope all are forgiven and we can move on together x

  • Sue.....I am new to this group and agree with everything you said in your post, albeit four months old.

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