AttackMS – it’s happening

A

Delays, delays, it’s terrible. But we had to include a few changes to the protocol, and that impacts on the database, participant information sheet, randomisation system, and most departments work with specific timelines, which draws out the process…

Anyway, we’re not complaining, we’re moving on, so I’ve been speaking today to some smart colleagues at the Royal Free Hospital, and my gut feeling is they truly like the concept of AttackMS and would be happy to refer people with a first episode of demyelination to one of the study sites. Please spread the message & slides widely! As a bonus, they contain some bits on ChariotMS and StarMS (aHSCT in MS) – all of these studies are open for recruitment now (ChariotMS, StarMS) or very soon, i.e. later this month (AttackMS).

RFH_talk_20220902_KS_4_circulation

CoI: Provided in the slides. I am the chief investigator of both AttackMS and ChariotMS.

The opinions expressed here are those of the author and nobody else.

@KlausSchmierer

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8 comments

  • I’m crying.
    So happy this is happening.
    It’s far too late for me. But if it prevents others from having to go through what I went through, before finally getting referred to The Royal London MS team – you guys are all heroes – then it’s worth it.
    That referral was 3 years after my GP told me, “well you have MS now, you’ll just have to get on with your life”. He refused to refer me because I had gone private to get my initial MRIs. I went private for the initial MRIs because, according to my GP, I’m a hypochondriac so he refused to refer me to a neurologist. I will never forgive him and one day I will have my revenge. But I digress.

    The fact that you are now doing this – all of this – is just so life-affirming and reassuring. Please keep it up!

    • Thank you for your warm comments, Simon, I really appreciate it and the pain you have gone through. Let’s hope the trial helps changing the approach to “unexplained symptoms”; too many of them turn out to be due to MS, recognised years later as such, not too late for intervention, but quality lost nonetheless.

  • Will there be any movement in the Chariot MS requirements? My EDSS would be 5.5-6 so slightly below the 6.5 required but given that I have never taken a DMT (long story re struck off Neuro) I feel that a trial like this may be my only chance of getting access to one. Any info would be greatly appreciated.

    • No change in eligibility criteria expected, we’ve been fighting tooth an nail for years to finally get a study funded focussing on people relying on wheelchairs. You may be eligible for SIZOMUS? Get a referral to Dr Gnanapavan!

  • Fantastic news! My first treatment prior to hsct was tysabri after over a year of steroids and i wish wish wish i could of gone on it at first event ! I think this study will change lives! Im so happy for those who will be able to prosper from this

    • Trials are always expensive….however with regard to CRO for some elements they are cheaper than academic studies because the universities are fleecing the funders, it is all based on cost recovery if you have to pay for time of professors senior consultants who will delegate stuff to their juniors to do compared to a robot you can see it is more expensive

  • I had a very severe MS attack as my first attack. Many symptoms at once and they kept on coming during and after a severe ear infection. Anyway Oct 2022 will be ten years since my first attack

    It was so severe I thought it could have been a stroke. So yes, I would say treat some MS attacks like you would as a stroke.

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