This post was first published 3 years ago now! I have checked it for political correctness (as the world has gone mad in this short time), and decided to leave it largely as is! Enjoy this digitally remastered diatribe!
Well, you all know by now that my titles are never what they seem; and this one is no different. In fact, I had labouriously prepared another lively post this week, but you, my loyal readers, chose this tricky one in my earlier poll!
See page for author [Public domain], via Wikimedia Commons
Please remember throughout this post that my musings are just my opinion, and should not be taken otherwise. Like they say, “something to stew over“. My only intention is to inform and educate.
Snake oil. It is an old expression that originally referred to fraudulent health products or unproven medicine. Today it is associated with any product with questionable or unproven quality or benefit.
You may have gathered by now that I am quite an analytical person, and not rash to making crazy statements (aside from my full belief in the great Arsenal Football Club. For goodness sake buy a new striker, Arsene Wenger!) – 2018 Update – things are looking good now!
Where do we stand with MND/ALS regarding cure or therapy. We have one drug, Riluzole, and I take it. Here it is, two of these a day.
It is the ONLY proven treatment (although only very marginally slowing the disease). And that is it, end of story. I will write some more thoughts about this drug in a future post (read my research section readers). However, those of you with MND who are not taking this drug, I would encourage you to discuss this with your neurologist. Of course, if it causes you issues, do not take it. Despite its marginal value, it does work. That is a fact, proved in four major studies.
The drug was released onto the market over 25 years ago!!
This sounds like no progress has been made, but it has, and I am hopeful that a viable treatment is now closer than ever before. However, it won’t happen without continued funding and donations. Please keep running those marathons, baking cakes and other sponsored events. Every cent and penny counts. It is complex and the key areas of the precise disease model are rapidly being solidified taking us toward the ultimate goal of a truly effective treatment. From my reading of current research, it is clear to me that we are on the right track now. I will touch on the key areas in future posts (have a look at those research posts already now published guys!).
“For goodness sake Lee, what about the Snake oil and Pig urine!??!”
Ok, taking each in turn.
The Snake oil.
I remember my consultant explicitly tell me that there was no diet or food supplement that can help. Yes, quite brutal, but he is strictly correct currently. However,…. (there is always a “however” in your musings, Lee!) …. with the lack of any real effective treatment for us, it is not surprising that we look elsewhere for a solution. So much so, there are literally hundreds of potions, protocols, diets, and private clinic treatments that are discussed on the Internet and in the real world.
Because of this, one leading researcher, Richard Bedlack, helped set-up the site ALSUntangled.
This Project was launched to look at these “alternative treatments“. It is a collaborative site, with readers voting on the next hot topic to look at. Slowly, in the 9 years since its inception many reports have been published. These are not based on new trials or testing, but analysis of literature, anecdotal comments, existing trials, and any other sources in the time available.
Take a look at the ALSUntangled completed reports. They are detailed, and all of them, without fail, have concluded at this time, there is NO evidential proof of any effectiveness. There are about 50 published reviews and over 100 more being voted on. Just take a look at the open reviews to see the “whackyness” of our world!
I believe it to be an important site as it is open, and really helps to inform sufferers, practitioners and the general public.
“So what is your point, Lee?”
I am beginning to think I don’t have a point, but I do! Quite a few of the proposals appear to be potentially Snake Oil of varying quality. Buyer beware!
“Lee, so you haven’t tried anything!?”
I admit to taking a few vitamins and potions. This is one of them:
Magnesium fluid, or as I call it, the “Devil’s Juice”. Magnesium is a natural muscle relaxant, so I take it every morning (wincing as I do). I ask you, why on earth does magnesium dissolved in honey and other sweet things taste like drinking an electric shock! But it does. There is definitely a market for a product that doesn’t taste like badger sweat but with all the power of magnesium.
“Lee, there is..”
WHAT IS THAT?!!!
Yes, it’s dark chocolate and it is full of magnesium. I eat stacks of that as well. I need no excuse.
I also down a couple of tabs (tabs – lingo for tablets – get down with da crew man) of B12 and Vit D3 occasionally.
Here I am after collecting my stash from Huggy Bear (AKA Holland and Barrett – note the initials COINCIDENCE or what??). Make sure you have the right change though in the shop. Margaret gave me a right earful for presenting her with a £50 note!! She takes no prisoners, health food store or what!
“You’ve not seen me, right?”
Now to me, this seems just like a fair approach, as it is relatively cheap, and within certain limits, harmless. In reality, I am focusing on good nutrition, and keeping a good balanced normal diet.
Of course, if you are a millionaire, you may travel the globe searching for a solution. If I was a millionaire, I would seek out the best research projects and give them loads of money. So if you are a millionaire, give me a call (actually email me) and we can discuss how to spend your money!
When you start to look at the dietary supplements industry, there are an awful lot of claims made. In my view, most are without evidence, some are at best suspect, and at worst dangerous. I will keep coming back to Scientific approach in my blog. It exists to prove effectiveness, and strict case/controls are required. The removal of bias is vital.
“Lee ok, the pig urine???”
This is my way of saying, be careful and wary when looking at alternative, unproven, approaches. You might as well try “Pig urine” instead of some of the substances mentioned!
“And the buy one get one free?”
Well who can resist those offers!!!?? I buy my Magnesium from a well-known UK pharmacy (drug store), who offer it 3 for 2!!
In my view, the way ahead for therapy will almost certainly come in a cocktail of drugs, Riluzole plus a number of new drugs.
I leave you with my only other treatment, Quinine (a muscle relaxant), in the form of tonic water. There is no gin in this I promise you! This is at a Golf club, where our dogs found a nice sand pit to play in!
My next post will be the Celine Dion post!! Until next time avid readers.
Another great post Lee. Have you heard the talk about coconut oil? It has to be organic apparently. I tried it for a few months and then had a cholesterol check – it had gone up a lot. I think the ratio of good to bad was OK, but it was enough to stop me from taking it.
It’s funny, but I have developed a taste for dark chocolate since my diagnosis – I did not now about the magnesium.
I am on Pregablin, which is for neuropathic pain…..I find that it relaxes my muscles, but it relaxes my mind a lot as well. I do not drive when on it….it enables me to do things, but masks the effect and I suffer afterwards with strained muscles.
I will be in touch soon to try and arrange a photo shoot for 26 Miles 4 MND with you.
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