Unrelated Blogger Comments July

If you want to say something unrelated to the the Threads. 
This is the place for you. 



ProfG does not want us to engage with the trolls, which we have done from time to time and a lot of you don’t care for.

In this respect it may help us to post comments quicker if you do not comment under “Anonymous“. Some have said we should ban this, others have said they want the anonymity.

You can indeed be Anonymous…but this is the name the trolls hide behind. These comments need to be read before launching. So it takes more of our time.

However, you can still remain anonymous, but when you get the 
pull down menu, why go to Anonymous? Why not go to name?

Select a name…..it could be anything……Brexiteer17,500,000, Bremainer 16,000,000; Sparkplug, AngryMSer but this does not link to you. Also you can have more than one name depending on your mood!

 You will still have to prove you are not a robot.

Then it goes to moderation for posting and then we will either put in spam or post.

However, if you post under a pseudonym e.g. Grand Master Flash Doris Day, etc. you will eventually become recognised if you post frequently using this name and then importantly we will recognise that you are not a troll and release your post or answer a question quicker. You still remain anonymous and it helps us. 

“Angry from Tunbridge Wells” is still anonymous who know they may live in Orlando, USA and he/she does not always say good things about us.

Many of you are now using a name/pseudonym and we thank you for that. 

But make MD2 happy and stop his grumpyness and think of using a name:-).

However, beware. You will get a persona because you may say things that will build up a picture, this may be a fictitious picture remember is MD2 really a mouse?

About the author



  • http://journals.plos.org/plospathogens/article?id=10.1371%2Fjournal.ppat.1005701
    Although quite technical, this paper addresses the eradication of latent herpesviruses inside the nucleus of the cell. Anti-viral drugs are effective against the lytic virus but do nothing to eradicate the latent viral DNA. Here CRISPR/cas9 (in the news as the new, hot gene editing system) effectively eliminates the latent DNA. Since latent EBV has been implicated in MS pathogenesis, particularly in B cells, this may lead to a new therapeutic strategy.

    • I've been reading about the CRISPR Cas9 technique and it promises to have applicability to virtually all diseases, even very interesting…

  • Has there or is there any attempts thus far to dampen or inhibit the complement system or microglia in progressive MS? While T and B-cells play a major role in RRMS, they must play a minor role because of the lack of success of most DMDs in progressive MS? Ocrezulimab does have some success against progressive MS but is still an underwhelming 23% decrease in progression vs. placebo, whereas all of the other DMDs have failed. It just seems that pursuing new ideas in progressive MS would be more fruitful instead of recycling the same old DMDs that work on B and T-cells.

  • I would like to know is there anything I can do that could help my delicate bladder (other than bladder medication, drinking enough water and pelvic floor exercises)? It seems to improve for a few months then goes bad again.

    So far it seems sugar, caffeine and acidic foods including toms, oranges, limes, lemons and grapefruit can exacerbate bladder symptoms. Also cranberry juice due to it's acidic ph. Some medications too.

    • Just my suggestion from personal experience – avoid salty foods and make sure you don't go anywhere near anything with cinnamon in it.

    • Sterntaucher, why do you suggest avoiding cinnamon? Although nowhere near conclusive, there was at least one study that showed promise of Ceylon cinnamon in mitigating EAE.

    • Only my experience – all types of cinnamon give me interstitial cystis from hell. So much so, that I regard it as poisonous. But looking on the internet, I'm not the only one to have this sensitivity.

    • Thanks for replies. I am hesitant about using catheters and medications like Betmiga due to the common UTI side effect risks but will keep these as a back up plan.
      My continence nurse gave me a leaflet on bladder training which seems useful, I will also get on with more pelvic floor exercises.

  • I have been diagnosed with RRMS and wanted to go on tecfidera, but I have been rejected for the drug by my local authority as I do not meet the nice criteria to be eligible for it. I feel the need to do something and am keen to do the high dose vitamin D protocol but realise it needs to be medically monitored. Is there any way I can do this – my GP and neuro are really unsure. I am following the George Jellink diet approach and do feel benefits from it.

    • Moyna,

      Fight for the drug that you want, but in the meantime you should take what they are willing prescribe. The numbers point to any DMT being better than none. Do not take no DMT if you do not get the tecfidera. Fight the good fight.

    • I would of thought you could be prescribed a DMT for CIS (an injectable) at least, then if you do have a relapse or new lesions on MRI you could possibly move to Tecfidera.
      Some are injections once a week or three times a week. MS Trust Decision Aid is helpful.

  • I have been searching, but I'm not finding an answers: The presentation of symptoms of MS labelled "PPMS" tends to be associated with (more) spinal lesions and less relapse activity – as far as I understand (and seem to have experienced). Is it pure chance that those of us with "PPMS" have a preponderance of spinal lesions? Is the lower level of relapse activity cause or effect of this?

  • Speaking of gamification, in the US a game was released last week that uses augmented reality to force players out into their neighborhoods to capture characters and gather resources. It's amazing how willing sedentary people have become in the past week to get outside and walk. One young person I know is reporting signs of mild depression lifting because the game is causing her to get more exercise! It's not available in Europe yet, but it's a big deal here. So, I think Dr G is absolutely on the right track that you can gamify more healthful behaviors. We're seeing it in a big way this weekend. (Not naming the game because you'll think I'm advertising. But when it hits the UK, you'll know–it's all over US social media right now,)

    I wonder if you can gamify getting neuros to prescribe early effective treatments…

  • If a DMT lowers resistance to minor viral infections, and minor viral infections can – in theory – worsen progression, could taking a DMT possibly make MS worse for some people? In someone with a low level of relapse activity but established progression?

    • I wondered about this too with bladder drugs such as mirabegron (Betmiga) as common side effects include UTI's – between 1 in 10 and 1 in 100 people.

    • I wondered about this too. Before I took DMF my MS worsend about FOUR days before I had any symptoms of a viral infection. Now that I'm taking DMF its ONE day before I have symptoms of a viral infection. A big advantage but maybe I get more viral infections because of DMF so maybe not such big advantage afterall.

  • Genuine question: what's happened to MS research? A couple of years ago MD2 got a telling off for spilling the beans about some neuroprotecive agent. Then we had the Charlotte project which crashed and burned. The anti-lingo trial seems to have been another dud. I know that there is the MS Smart trial, but this appears to have gone quiet. When will it report? I know there is ocrelizumab in the pipeline in the next couple of years, but the PPMS results are pretty underwhelming. Is there anything else to be looking out for?

    • Look it seems that not much happened, but with the arrival of Cladribine and Ocrelizumabe the fact as licensed for the treatment of MS may change the situation.
      Perhaps science is closer to truly understand the disease, biomarker and who knows the causes for the development of MS. Remyelination is another target that continues to be pursued…

  • This study appears to show that people with APS1/ APECED, despite an autoimmune disorder that conferred susceptibility to other autoimmune diseases, don't develop diseases such as MS, Lupus, or Type 1 Diabetes.

    http: //www.ncbi .nlm.nih.gov / pubmed / 27426947

  • It seems some MSers get the DMT they want, others are being refused. It would be good to know how to get the best from the NHS. I mean this in a way that works with medical professionals.
    There are problems with many of my NHS referrals and I have to chase them all the time, making sure the referral has been done, has it been received and I'm on the waiting list. Is the information correct on the referral letter. Departments not talking to each other.
    Sometimes it feels like I'm having to babysit my relationship with the NHS and it's like having a part time job.
    If only I knew all this before I became unwell with MS.

  • I agree, I seem to be in a continual fight with the NHS. Had to go privately to London to see a neuro to get the RRMS diagnosis. He advised me to go on tecidifera. Went back to NHS neuro in my home town who says that I am not eligible for any DMD at all according to the NICE guideline. Basically I had TM in 2008 and was left with foot drop. Had 2 small relapses since in 2013 and 2016 so not enough to qualify. GP says there is no point seeing another neuro as all requests for a DMD go through the same management team who follow nice strictly.

    They are not of the view that "Time is brain " in all parts of the UK – especially were I come from !

  • I came on this via the DMSG (German MS society) and thought it was really good – Song4MS by Marie Wilson. Something positive and spirited:

    • I just read this study. Just I think the Mother Nature certainly didn't expect to create a super strong immune system have the effect of autoimmunity…

    • For the first time, we have evidence that people who are more susceptible to disorders of this kind are that way because their immune system is better equipped to combat dangerous infections, enabling them to live longer.

      I have always said MS susceptibility genes are perfectly normal genes and have said they are their to fight infection so no rocket science there

    • The August post was done 1 August, but it wasn't linked into the button until today.

      Yes I did see this paper and I thought bonkers….using a lymphocyte depleter to get rid of a virus infection….Oops thats ProfG's idea to get rid of EBV, however there has been a death on alemtuzumab from oneone with subclinical JC virus infection at the time of alemtuzumab.

    • Oops. Well, I have trouble using the search feature here. Thanks.

      It seems insane to me, but I suppose if you've suppressed the virus to undetectable levels the only thing left is to hunt down the reservoir HIV in the white blood cells/BBB. The HIV-MS coincidental evidence is very interesting to me. Anywho, thanks!



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