Buyer Beware!

B

A few years ago I came up with the term of mushroom food to reflect SH1 from Bulls to say that what was written was probably not correct.

This morning someone posted a web site which states:

COMPLETELY OVERCOMING AND GETTING RID OF MS IS POSSIBLE NOW

They aim to sell you mushroom extract and other things….a mix of loads of differnt herbs including maca root. Is this some weird thing from the McCartney range:-)

They ask you to pay nearly $1,000. They say the package can be got through Amazon,

“A permanent solution, no more lesions and spots and scans, natural..vegan”

“Done! You are now free of MS”…No! You are now free of $1,000

Buyer beware……You have to ask where is the evidence and read it. A few testimonials is not evidence!

“Success rate is over 90%, the rest 10% is with patients who do not take the recommended daily dosage and do not follow the instructions. So for patients taking the supplements as instructed, success rate is 100%”.

I am not giving you the link in case you have a shopping addiction, if you want to donate $1000 to us you can!

In the UK, I would be sending the link to the Office of Fair Trading..If there is such a thing in the States the Claims should be investigated……Luckily for our Spainish Readers apparently they won’t send to Spain.

P.S. We all take supplements. Sid will say mine is Real Ale, ProfG and his vitamin D for example, I spent £1.99 buying some from the supermarket last week (Vitamin D or Real Ale?) and I have some multi-vitamins on the shelf. I’m sure some of you rattle with the number of things you are taking. Do it with you eyes open and do not expect miracles….If you do you will be disapointed and ripped off.

Hopefully this is vague enough, so I dont get sued.

Whilst we are on the issue of snake oil…..here is a review of the current state of play with microbiome studies:-), it is open access so you can have a read and maybe you can see it (research) is different from simply making the result up?

Blais LL, Montgomery TL, Amiel E, Deming PB, Krementsov DN. Probiotic and commensal gut microbial therapies in multiple sclerosis and its animal models: a comprehensive review. Gut Microbes. 2021 Jan-Dec;13(1):1943289. doi: 10.1080/19490976.2021.1943289. PMID: 34264791. “a number of other therapies were hindered by limited evidence of replicable findings and other criteria, which need to be addressed by future studies in order to harness gut microbial therapies to ultimately provide cheaper, safer, and more durable treatments for MS”

PPS….By the time these studies are complete, maybe cladribine and fingolimod will be long out of patent , they will be cheaper than a pot of garlic granules, a bit of honey and some multi-vitamins. Do we need lots of little studies that give hope but prove nothing or more definative studies that put the answer to bed one way or the other.

Are we ready for those studies?

General Disclaimer: Please note that the opinions expressed here are those of the author and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

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MouseDoctor

30 comments

  • We the scammers believe that such herbal products will allow for the chakra network to restore balance of the individual by opening their third eye through intensive natural G5 waves production within the 7 chakra points. Remember that taking too much of this might result in the growth of a third arm so please be careful. Please note I have received an expert 2 hour online degree on understanding these natural products.

    Sincerely, the scammers

  • Haha, i remember seeing one of these sites when I was diagnosed. Knowing i will never follow their instructions 😉 i still wanted to purchase. Guess I really was that desperate at the time. This post made my day hahaha.

  • The Liability is with the Company Selling this Outrageous and Irresponsible Claim.
    Is Amazon Complicit?
    Is this like a Fecal Transplant?
    Snake oil?
    Yes, I take Vitamins, including D , biotin.
    Started using Delta 8 and Delta 10 low THC. Plus Terpenes.
    I use Apollo Neuroscience device and Oura ring.
    I also dutifully follow my Neurologist and Primary Care Doctors advice.
    I take my old school tried and true Glatopa every morning.
    Cover all your bases.

  • Thanks for the heads up MD as this one is distinctly in the quack doctor zone!

    Gawd but it is bloody depressing coz it feels as if all that remains consistent is studies showing inconsistent or unreliable results, thereby breeding more studies – year on year on year.

    In the meantime year on year on year PwMS wait or not wanting to risk waiting YES: rattle with supplements and add exercising and using dietary methods such as IF in the hopes they are off-setting, mitigating and slowing up disease progression!

  • “If there is such a thing in the States the Claims should be investigated”

    Hahahahahahahahahaha!!!! Giggle snork. Whew.

    While we might have some governmental entity(s) to investigate such claims, the FDA doesn’t regulate supplements (or seafood or cosmetics). So things are murky to say the least. Our reality in the states, is more like (and this should be heard in the most syrupy-sweet American southern drawl) “Y’all be careful out there!”

  • Well from what I could read you could report this site to the Federal Trade Commission.

    The official website :

    https://www.ftc.gov

    This is the section to report a fraud from the Federal Trade Commission website :

    https://reportfraud.ftc.gov/#/

    The Federal Trade Commission (FTC) is an independent agency of the United States government whose principal mission is the enforcement of civil (non-criminal) U.S. antitrust law and the promotion of consumer protection. The FTC shares jurisdiction over federal civil antitrust enforcement in the United States with the Antitrust Division of the U.S. Department of Justice. It is headquartered in the Federal Trade Commission Building in Washington, DC.

    • I just went to the site, and the English is terrible. So there’s the first indicator that it’s not originating in the US or UK. I love that it says all its products are made in “an FDA registered facility”. (eyeroll) THEN I did a bit more scrolling and came up with this in teeny tiny print at the very bottom:
      “Processing occurs within the United Arab Emirates.
      These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, prevent, or cure any disease”.

      Looks like they have their bases covered in the strict and legal sense. Shutting this down would be very hard and honestly, a waste of time. A bit of a whack-a-mole activity, I suspect.

      This one really does sound like it’s a case of “Y’all be careful out there.”

  • A particular friend said I could be cured from my MS by taking ayahuasca in South America, said she knew someone who had done the same 🥴😂
    After a swift telling off from my partner she apologised to me

  • I can understand how in the absence of conventional ‘care’ and ‘support’ someone might feel desperate enough to want to try it. I am thankful that you would take the time to report it if you could.

  • Thanks MD! I posted the original link and was horrified by the blatant lies. Giving people false hope and then charging extortionist amount of money. Do you think a weekly slot of the latest snake oil and shooting it down on this blog will be a good idea?

    • Yes it would be good to know, but as I am on the naughty list with regards the legals I have to be careful what I say. I did forward the link to the neuros

      I could call it MDs weekly dump:-) where I can discuss ideas that are Number twos:-)

  • The only supplements I use are vD and D-mannose.

    I do think you have a poor attitude towards microbiome research though, tbh.

    • The microbiome research is way over-hyped and so often confuses correlation with causation. it’s also a goldmine for the snake oil merchants.

    • You are right of course…I will have my paws rapped…..I foresaw the fecal transplant scam as soon as I heard of microbiome and have kept the joke going because of it, but clearly my colleagues are into it big time.

      Will it be the cure….looking at the data so far I have to say it is abit of a Shania….What?…..
      Yep its a blog term meaning….. “That don’t impressa me much”, so I doubt it….but happy to be proved wrong.

      • Maybe / probably not a “cure”, but then neither is Cladribine, Alemtuzumab or any DMT unless used early enough.

        I think, with the greatest respect, your view of microbiome stuff is possibly a little entrenched. I am sure that gut health is responsible for a lot more than we realise and I find diet crucial in managing my PPMS, but a poo transplant? Over my stone cold, dead body!

        • I mean, yes, you may be able to get a modest disease-modifying effect from improving your gut health, just like you would from improving any other aspect of your general health. But should you try to treat MS with diet and probiotics? No.

          • “All for it all I say is not to expect miracles…until I am disproved”

            Yes that’s fine. But for someone like me, with my presentation of MS, I wouldn’t be expecting miracles from any current DMT. Neither would any neuro I’ve seen. And when the side effects are taken into account, for me they’re all definitely Shanias.

  • Yeah at first I didn’t understand where the sound was coming from, but when I looked up I finally got it; vultures flying circles above my head. Ooh yeah they are praying on you. If there is any justice the will get what they deserve.

    Came across a sup that is really crazy:

    Interleukin 1 (IL-1): 9CH, Interleukin 2 (IL-2): 27CH, Interleukin 4 (IL-4): 4CH, Interleukin 6 (IL-6): 17CH, Interleukin 10 (IL-10): 4CH, Interleukin 12 (IL-12): 27CH, Interleukin 13 (IL-13): 17CH, Fribro. Cresc. Fact. basic (bFGF): 4CH, Ciliar. Neuro. Troph. Fact. (CNTF): 4CH, Epiderm. Cresc. Fact. (EGF): 4CH, Erythropoïetin (EPO): 3CH, Glial Derived Neurotrophic Factor (GDNF): 4CH, Inerferon Beta 1-a (IFN- β-1a): 3CH, Interferon Gamma (IFN-γ): 27CH, Insulin. Cresc. Fact 1 (IGF-1): 4CH, Macrophage Inflammatory Protein 1 Alpha (MIP-1α): 27CH, Nerv. Cresc. Fact. (NGF): 4CH, Neurotrophin 3 ( NT3): 4CH, Plateled Derived Endothelial. Cell. Cresc. Factor (PDECGF): 4CH, Rantes (Rantes): 27CH, Transform. Cresc. Fact. Beta (TGF-β): 4CH, Tumor Necrosis Factor Alpha (TNF-α): 17CH, Acid. Nucleic. Specif. SNA®-HLA I-01: 18CH, Acid. Nucleic. Specif. SNA®-HLA II-01: 18CH, Acid. Nucleic. Specif. SNA®-SEPa-01: 18CH, Acid. Nucleic. Specif. SNA®-SEPb-01: 18CH, Acid. Nucleic. Specif. SNA®-SEPc-01: 10-18CH, Excip. Lactos. Saccharos. Pro Caps. gel. una.

    It will cost you a dollar for every word on the bottle. This one isn,t curing autisme but it will help with all the neurodeg. diseases out there.

      • Lots of people paying for dubious and expensive fecal transplants at private clinics. It wouldn’t be a problem if many of them didn’t also refuse to take the stuff that’s actually been proven to work in phase three trials because of the “medicines are toxic” narrative. Very sad how many people are hoodwinked and given false hope by these naturopathic approaches.

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