Google Hangout on the way Want do you want us to report on


Cytomegalovirus primary infection in a patient with multiple sclerosis treated with alemtuzumab. Aguirre C, Meca-Lallana V, Sánchez P, Vivancos J.M ult Scler Relat Disord. 2019;5:270-271.

This comes as no relevation to anyone. One person I know who had alemtuzumab described themselves as “fungus mungus” because of the infections that can occur when you have no T or B cells.

Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Once infected, your body retains the virus for life. Most people don’t know they have CMV because it rarely causes problems in healthy people.But if you’re have a weakened immune system, CMV is cause for concern.

CMV spreads from person to person through body fluids, such as blood, saliva, urine, semen and breast milk. There’s no cure for the virus. However, medications can help treat newborns and people with weak immune systems.

In this case report the virus was controlled naturally as “spontaneous recovery associated with rapid lymphocyte reconstitution”.

This shows why we need more specific therapies than a general sledgehammer

Is this coming. The late breaking news at ECTRIMS 2019 suggests it is

A. Lutterotti et al. Establish tolerance in MS with myelin-peptide coupled red blood cells – the phase Ib ETIMSredtrial,

The scientific programme with abstracts arrives this week (Click here). What are you interested in?

NGD & ProfB will be doing their live Google hangout again this year, so get you orders in about what to look for and what you want to hear about.

The Hangout is scheduled from 12.00-13.00 local time in Stockholm of Friday 13th September. Hope that isn’t an omen.

NGD has no doubt got a posh-frock sorted (By the way her water isn’t aquavit…Only joking NDG:-). ProfB will be off to Ikea to get a swedish flag and then maybe he’ll pop down to Asda for a new shirt.

As for the the phase Ib ETIMSred trial…. it will be safe, the T cell response to myelin peptide X will drop….but it won’t work properly . There’s the prediction….. I’ll have to wait and see. I can’t wait but why two reasons (a) Is the myelin peptide a myelin peptide (b) they won’t deplete before they do the tolerance. Will I eat my hat?

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  • What do you want us to report on?

    Something positive for a change. A neuroprotective therapy that shows real promise. A re-myelination therapy that may actually work. An anti-ebv therapy that is effective.

    My worse MS side effect is the one where I get hopeful about these big MS meetings and the completed deflated when nothing is reported that will actually benefit those with MS. I know it’s nice for MS research teams in to visit a new country, sample the local food, attend the gala dinner and dance, but give a thought to this with the disease – without us you wouldn’t have these mini-breaks.

    I know you will say it’s such hard work and Prof G has 250 meetings, but if it was that bad you would t go.

    Angry of Tunbridge Wells

  • Why do you hate Alemtuzumab so much? This was a case involving one patient who recovered. What about my case – 14 years relapse free, still working, vitiligo as a side effect (better than increasing disability).

    Are the Barts team showcasing any of their work? I hope none of your EAE rubbish gets any time in the spotlight.

  • Maybe this is old hat but I’m interested in “Exercise therapy in MS: a disease-modifying role?” and whether there are any useful takeways for PwMS. Since my diagnosis in February I have begun doing 3 30-minute cycling sessions per week at 85% max heart rate, plus 1 30 minute weights session once a week, plus I make sure to get my 10,000 steps per day (in addition to Rituxan). I want to know if this is the right stuff and enough of it. When I asked my first neuro about exercise she laughed and said “Just stay active” but I’m hopeful for more specific advice.

    • You’re a newbie so you don’t know any better..exercise is of no use..none..
      and for that matter neither is Rituxan/Rituximab. Just look st this poor guy who was put on it…the red arrows are Ritux/infusions and the black circles are new spinal lesions…nice job Ritux way to EDSS 7.0 patient was using wheelchair…
      Alot of good Ritux did him..Had it for 31 years myself and only therapy that ever helped me
      w/improvements was hsct..all others did nothing for me..absolutely nothing.
      During the 27 years I was rrms..I was basically untreated…only taking BetaSeron
      for 5-10 years or so.

      “Onset of secondary progressive MS after long‐term rituximab therapy – a case report”

      Some people turn progressive after only 3-5 years. Longest here was a man who went 50 years…My self went 27 years which is good as..average is about 15-20 years.

      “plus I make sure to get my 10,000 steps per day (in addition to Rituxan). I want to know if this is the right stuff and enough of it.”
      This is a “prescription for disaster” and likely you will be in a wheelchair and using urinary catheters in 10-20 years if you follow it..Forget all about exercise therapy if you want to walk.

      • Thanks Fi! I follow the Activemsers forums where Dave Bexfield posts a lot of new research on MS & exercise, but I’m always hoping for more! To Anonymous 1:31AM: cool story bro

  • The first topic

    Hot Topic 1: Is MS becoming a milder disease, and, if so,

    Trend for decreasing MS disability with increasing calendar year

    Slower MS disability progression than previously reported

    Increasing incidence of RRMS, decreasing incidence of PPMS, changing
    gender ratio and decreasing mortality

    • I’m also interested in this and am selfishly hopeful it bodes well for me. Though I was OLD (45) at diagnosis (I believe onset to have been at age 43) which I know isn’t supposed to be an awesome sign but I think I’m a young 45 if that helps 🙂

  • 08:30 – 09:00
    Are B cells all that matters?
    D. Baker (London, UK)

    Good question

    I think i know your answer?


    PS: of course b cell are what you need to know 🙂

  • Picking up on Heather comment on exercise and the info Luis has previously provided on this site about intermittent fasting and Lipoic Acid, I’d really like to know about anything that informs and/or positively reinforces what we can do for ouselves – as to how best to live with MS and off-set some of its impact.

  • CSF neurofilament heavy chain release (NfH) is important in Secondary
    Progressive MS (SPMS) – results from the MS-SMART trial
    S. Gnanapavan (London, UK)


  • I’d like to know about potential drugs in the pipeline. For example I heard bits and bobs about ublituximab and temelimab that sound promising but I’d like to hear your take on these things.

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