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NHS & MNDA Failure

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  • NHS & MNDA Failure

    Our members are actively buying unapproved treatments on the Internet and who can blame them when the NHS and the MNDA consistently look the other way.

    It is time for the NHS and MNDA to get off the fence and support the best treatment currently available.

    There are hardly any things approved for MND, so, i'm not sure if they are looking the other way, or just unaware
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


      Hi Graham,

      I contacted our Research Team about this and this is their response

      Before a drug is made generally available to patients it needs to undergo a series of tests known as clinical trials. This is to make sure that the drug is safe to give to people, and more specifically to those with MND that the drug has been designed for. We are cautious about offering advice on therapeutic benefits of unregulated medicines as their effectiveness has not been proved through clinical trials, and the science behind them is sometimes not well understood. We are not medical professions and we have to ensure that any information we provide should not be construed as such. We report findings where a strong evidence base is available, ideally from Phase 3 randomised controlled trials, but the level of evidence for unregulated treatments invariably falls far short of an acceptable standard to support the excessive claims that are sometimes made. We would encourage anyone with MND who is considering an unproven treatment to discuss all the implications with their neurologist before making a decision.

      For many years we have provided some funding to support the ‘ALS Untangled’ network of neurologists across the world who give their time freely to provide expert consensus on off label or alternative treatments, giving people the opportunity to make an informed choice as to whether or not to try a particular treatment. Reviews are published in a research journal dedicated to ALS/MND and are freely available to people with MND.

      For more information, please visit our webpage on unapproved treatmentsand we also have aresearch information sheet on accessing unapproved treatments.

      Best Wishes

      MND Connect Adviser
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]


        Like anything else you pays your money and take your choice. 😉x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        • Yes, Evelyn, Matt. The fact is that we are on our Todd. Not even an indication of what may help. Of course I would be more proactive if I had any say but I don't and status quo. Gotta keep asking / prodding.

          Back to the care app.


            They pushed a dodgy vaccine for covid through so stuff needing to be safe before we get it isn’t true. People have died because of that vaccine.
            The fact is anything is better than nothing and if you ask us MND suffers if we care if it’s safe I’m sure the answer would be no for most.