We need your thoughts

The MS Society in the UK is committed to finding treatments for progressive MS, and have ambitious plans to make that happen as quickly as possible.

They have been asking the question

Which existing drugs could help in progressive MS?

Can you help?

They want a new clinical trials platform to be fast, efficient and flexible. That means being able to change dosage or the number of participants as trials progress 

To make this happen, they’ve brought together over 40 experts in MS – researchers, clinicians and people living with MS – to form an Expert Consortium on Progression in MS clinical trials.
Please join the initiative! The consortium want to hear from everybody, especially people living with MS. 
If you (pwMS, a researcher or a neuro, from anywhere) can suggest a drug that may have the potential to slow progression please 
email research@mssociety.org.uk by 30 July 2018.
It needs to be a treatment that’s already licensed for another condition, and they’d like as much information about it as you can give. The consortium will analyse available information on each drug to identify the most promising. We expect these to be the first drugs tested when the platform is ready.

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  • lol. we have gone from neuros can't do anything without class 1 gold scientifically backed evidence to "If you (pwMS, a researcher or a neuro, from anywhere) can suggest a drug that may have the potential to slow progression please…"

    dear me.

    please don't tell me this is progress.

    • We don't care where good ideas come from, we're quite egalitarian in that respect, then we can move to eventually getting class 1 evidence. We have lots of scientific evidence for a number of potential neuroprotectants but the impetus to try these in trials has been too slow so far and pharma is yet to step up, probably due to their bad experiences with Alzheimer's. As we all know, neuroprotectants are the missing piece in the MS treatment arsenal so in my opinion initiatives like this are useful.
      Hopefully we can get a few better candidates than those being studied in the MS-SMART trial.
      It is progress, though nowhere near as quick as any of us would like.

  • What do away know…but this seems aimed at pwMS or non researchers, as MS researchers would surely not give away research ideas.

    • This would be to take drugs into clinical trial, which MS experimental researchers are not capable of. Though ultimately, if successful and as is so often the case, our clinical colleagues reap the glory but those of us who've been in the game a long time are quite sanguine about that 😉
      That said, for many MS researchers, anything that increases the speed of progress is to be welcomed.

    • "as MS researchers would surely not give away research ideas."

      Some do.

      To test this model we suggest that further studies are necessary to determine: (i) the cause of CD8+ EM/EMRA T-cell deficiency in MS, whether it genetically determined, as we have previously hypothesized and related to decreased type I IFN production; (ii) whether CD8+ T-cell deficiency precedes the onset of MS and is present in healthy first-degree relatives of people with MS, as in the healthy relatives of people with Sjögren’s syndrome (iii) whether sunlight deprivation and vitamin D deficiency aggravate the CD8+ T-cell deficiency, as previously postulated;10 (iv) how and why the EBV-specific CD4+ T-cell response declines during the course of MS; (v) whether oral shedding of EBV is increased during clinical attacks; (vi) whether the frequency of EBV-infected memory B cells in the blood is increased in MS, as in rheumatoid arthritis75 and systemic lupus erythematosus;76 (vii) whether EBV-infected B cells and plasma cells in the CNS in MS are autoreactive, as are EBV-infected plasma cells in the target organs of rheumatoid arthritis and Sjögren’s syndrome and (viii) finally and most importantly, whether therapies aimed at controlling EBV infection, such as EBV-specific T-cell therapy, prevent and cure MS.


  • Turmeric. Cures all and makes tasty curries. Plus there's 5000 years anecdotal evidence and 1 billion can't be wrong!

  • You want ideas? Hmmmm let’s see
    Why not to study LSD then? Shown to promote IGF and other neurotrophic factors
    Or may be methadone, which is weak kappa-opioid agonist (kappa-opioid agonists has been shown to promote remyelination, remember?), against buprenorphine, which is potent antagonist there. Detailed registers containing people on opioid substitution therapy must have plenty of people with MS, I believe (or not? That’s would be interesting too)

  • At least why not to study effect of potent opioid analgesics on QoL of PwMS? It’s rather unfair that terminally ill patients on hospice care are eligible for them and we are not, don’t you think so? Progressive MS is terminal illness (well, any kind of MS, lets be honest), so why not? Fentanyl is great candidate (or carfentanyl maybe? The stronger is better, remember). You spend decades researching cannabinoids on rodents, so why not to look at thing that really supposed to work then

  • Deep brain stimulation is not a drug but its a relatively known treatment that I would like to see its effects on PMS…

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