A call to arms, your upper limbs

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ChariotMS is gaining traction, however not yet quite to the degree we would have liked. As you may remember, our trial milestones had to be revised, and our immediate target was to enrol 60 people with advanced MS (pwAMS) by the end of June, and we called this our “60:6 challenge”. At the time we took the decisions, it looked like a realistic plan. However, setting up trial sites for ChariotMS, and then getting them to actually screen and enrol pwAMS, remains a slower coach (or dare I say chariot) process than anticipated.

And whilst there are some local reasons for this, COVID-19 is the leading cause underpinning virtually all of the delays. Staff shortages due to positive SARS-CoV2 tests and COVID-19 diseases? Check! MRI capacity massively restricted due to COVID-19 backlogs? Check! R&D offices scrambling for staff, struggling with internal regrouping and shifting focus away from COVID-19 studies? Check! And so it goes on…

The somewhat reassuring, yet unhelpful, truth is we’re not alone in this – it’s a Global problem. A few days ago I attended the annual meeting of the American Academy of Neurology in Seattle, the first of its kind F2F in the so-called “post-pandemic” era, where an entire presidential plenary session was dedicated to the fall out of C19 on neuroscience research. Now, one of the tangible changes to the better was there were panels consisting entirely of female clinicians & scientists without gender or other issues of inclusivity being the focus of the discussion (mind you people do take note when there’s no man on the platform at all!).

Profs Orly Avitzur, Nina Schor, Merit Cudkowicz & Brenda Banwell enjoying a mansplaining-free panel

Following through their presentations, the story being told rang strikingly familiar – here are some snaps I took of Prof Cudkowicz’ presentation:

AAN_COVID-19_panel

Don’t get me wrong, I’m truly impressed by the dedication of the ChariotMS PIs and their teams, some going to ridiculous lengths doing things they wouldn’t normally have to do getting a clinical trial up and running. But in the current situation, that’s what it takes and I’m grateful to them.

One element we can all help with is making ChariotMS as accessible as possible to pwAMS putting themselves forward for trial eligibility. This is why I’m posting an up to date list of current trial sites across the country below, including sites that are about to be activated. If you or somebody you know has MS and uses a wheelchair most of the time, they may be eligible to participate. Get in touch with your GP or neurologist for a referral to your nearest trial site; in some places you may even have a choice between several sites. For example, there is a cluster including Birmingham, Leeds, Liverpool, Manchester and Nottingham, and since we’re not talking football here, everybody is on their best behaviour whichever team you support (I trust you noted I put names in alphabetic order to avoid any suspicions).

We’re blessed by the generous support of ChariotMS through its funders, i.e. the NHIR-EME, MS Societies UK & US, Barts Charity and Merck Serono Ltd UK. All recognize the urgent need for this trial and to achieve its milestones, so please get in touch with your nearest site through your GP/consultant/MS teams. Here they are:

Sites-1

If you’d like to ask any questions, please pop them in the comments below.

We can also connect at various upcoming events, one of which is an Instagram chat TODAY from 1:30 pm. Here’s the link: https://www.instagram.com/mssocietyuk/

I will also do a ZOOM seminar supported by the MS Society on 19 April and speak at an event hosted by the MS Trust on 27 April, i.e. during MS Awareness week (#LetsTalkMS) – I’ll circulate further details here and via Twitter.

Disclaimer: The opinions expressed here are those of the author and nobody else. I am the chief investigator of ChariotMS.

ChariotMS is funded by the National Institute for Health Research (NIHR) [Efficacy and Mechanism Evaluation programme (17/145/09)]. The views expressed are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care. ChariotMS is further generously supported by the MS Society UK, the US National MS Society, Merck Healthcare and Barts Charity.

@klausschmierer

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18 comments

    • Lumbar puncture (LP) only needed if required for confirming the diagnosis, hence unlikely in pwAMS. An LP as such is not part of the ChariotMS protocol.

      • Thanks. Also what happens if the 60 PwAMS recruitment number isn’t met? Can the trial still go ahead?

        I’ve registered to be screened in May at Luton🤞🤞(six months after coming off a STAT2 trial). Hoping to join the Insta chat today, if not definitely the Zoom call later in month 😀.

        • Fingers crossed five funders will feel sufficiently mindful that neither of them wants to pull the plug! Joke aside, I’m enthused by the activity that’s happening right now, and whilst we’re slightly behind our milestones, I think we’ll soon be rolling like an avalanche😉

    • Look at PD, AD, other neurodegenerative conditions – the MS field has produced substantial breakthroughs. Not sure your comment on discussing parental issues or burn out was meant to be critical; I trust it wasn’t a little misogynist jab. The AAN’s annual meeting is a mix of academic and professional development, including what you could call “soft topics”, but yes neurologists do have families, somebody needs to look after the kiddos, and the approach has become more balanced, so why not discuss that openly. I didn’t go dancing, but well done to those who did, enjoy yourselves, network, and come up with a new idea & drive to bring, for example, AttackMS to the table.

      • Believe me it’s tougher bringing up kids as a single mother with MS doing a part time job in Walmarts. I don’t know any poor neurologists (male or female).

        The point I’m making about AAN is that thousands of neuros and researchers descended on Seattle but I didn’t see one major reported breakthrough about MS eg effective treatment for progressive MS. I don’t share your view about the progress made in the field of MS. Someone diagnosed with PPMS today isn’t much better off than someone diagnosed 20 years ago. Fingers crossed that ECTRIMS 2022 will bring some good news for people with MS.

        I wish you luck with AttackMS.

        • Don’t know whether you’re describing your own situation there, but I appreciate life can be tough in jobs much less enjoyable than neurology, particularly if not paid well. Burn-out and work/life balance are issues across salary scales though, so I accept that a medical meeting addresses and applies them to their own profession. Conferences have long bought into the concept they need a big bang breakthrough as an advertising stunt, but the reality is that most progress – particularly to the level of clinical implementation – is incremental, rather than a big step change. Attending a conference is about meeting people and learning about their work (in that order), kicking around ideas and generating new ones. This works best in an environment that facilitates interaction and, within reason, allows colleagues to enjoy themselves. Progress in the management of progressive MS is not the same as improving the lives of people who have been living with progressive MS for years. It also depends on what you define as progress. In ChariotMS we decided “halting” further progression should be success. Do you agree? Since if you’re looking for “recovery” in people who have had progressive MS for several decades, you need to address some ground truths about MS at that stage, for example the destruction of ~60% long motor tracts and ~90% of synapses in the spinal cord:
          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8028682/pdf/BPA-28-334.pdf
          https://onlinelibrary.wiley.com/doi/epdf/10.1002/ana.25835

          • I have asked questions about this for at least ten years now to my neurologist (and several researchers), and I haven’t gotten any good answers. I really just want to understand where I’m at physiologically. The only answers I ever get are, “MS is unpredictable” and “we just don’t know.” I really just want to find out how to tell when the damage is permanent—I think 60% of tracts and 90% of synapses is pretty permanent. I have also asked before if there are ways to test the damage and/or image the damage, and just got a lot of non-answers and couldn’t say(s). Can damage be seen (other than forensically) and/or tested? I am speaking to the prior people when I say I don’t think it’s unreasonable to want to know where one stands in the continuum of disability. I actually will be starting cladribine in the next week or so, and I would join the Chariot trial but I’m in the US and also have been off all DMTs for 27 months because of Covid vaccines and mix-ups, and I have progressed too much in the meantime and am now bed bound. If I were to guess (not good in the scientific arena), I would think that I have a fair amount of permanent (read as: unfixable) CNS damage. But there are times I can do much more than I previously could not related to pseudoexacerbations. I hope that cladribine is at least somewhat successful at stopping progression in PPMS and SPMS… that would make me very happy, as there aren’t too many more numbers left for me on the Kurtzke scale.

  • It would be nice if there was a proposed site at Oxford. Birmingham would be my nearest site and yet my neurology team in Swindon is a sub branch of the Oxford team.
    What is involved in the pre-trial assessment?
    I use a wheelchair and my upper limb function has deteriorated terribly during the pandemic / being removed from treatment with Tysabri. I still work at my computer, but have to use voice dictation software.

    • “What is involved in the pre-trial assessment? I use a wheelchair and my upper limb function has deteriorated terribly during the pandemic / being removed from treatment with Tysabri. I still work at my computer, but have to use voice dictation software.”

      You sound like a potentially eligible participant! Are you able to do anything with at least one hand?

      • Can I ask why you would not just put him back on Tysabri (or a Tysabri biosimilar) instead of risking his brain and spinal cord by enrolling him in a trial where he would potentially be given placebo…?

        • Pending the circumstances, I would certainly consider resuming DMT. Tysabri seems to have been stopped during the pandemic for reasons we don’t know. Whenever trial eligibility is being considered, alternative DMT options will be ruled out first. For pwMS with progressive disease and no MRI activity at EDSS 6.5 or above there is currently no approved DMT in the UK. Since uses of voice dictation and wheel chair are being mentioned I suspect EDSS may be at that level, but obviously needs assessment.

  • Any idea if/when Southampton might become a centre? For the MS community on the Isle of Wight, I suspect it would be their only possibility.

    • There is a lot of positive activity & energy between east London and Southampton atm, I’d expect them to open for ChariotMS within less than 2 months.

  • I made contact with the Liverpool site using the details you provided in an earlier Post but nobody there knew anything about it?

    • Prof Carolyn Young and Dr Ian Pomeroy are the PI and Sub-PI in Liverpool. I’ll let them know you tried in vain. If you’re being referred by your neurologist you can expect a response.

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