Friday, 2 February 2018

Request a blog post from Barts-MS

Reader, sometimes we tell you want we want to tell you. Sometimes we tell you what we're working on or what we've read about. Now, we'd like YOU to tell us what you want to read.

Comment below with a burning question, or a topic you wish to be covered, or an aspect of MS that you'd like us to explain. We'll find someone in the team to write that post for you over the coming weeks.

What do you want to know about MS?

56 comments:

  1. Given the disparity of MS incidence due to gender, what role do hormones play in contracting the disease, and how do hormonal changes over time influence how MS manifests?

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    1. Yes I second this! I really would like to hear how estrogen influences MS and I saw some research also about vit D interacting with estrogen. Why do women get autoimmune diseases more than men but then why do they also have on average a less aggressive disease course (or is the latter common wisdom even true??)

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  2. What are the primary endpoints you typically use for a clinical trial in MS patients? Are there biomarkers that you can use to look for effcacy? And how closely do those endpoints and biomarkers align with patients' quality of life?

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  3. Diet & exercise as disease modifiers - so called biohacking including obesity, fasting, smoking, caffiene, vitamin d etc.

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    1. I agree FB In light of yesterday's earth-shattering post on the age-related efficacy of DMTs and Prof G repeated focus on comorbidities, diet and exercise - clear and detailed guidance and advice now please!

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  4. The best switch-strategy from highly effective maintenance therapies to highly effective induction ones. (How can we reduce switch related rebound, and ensure the safety (high JC+ from Tysabri) or ensure the maximal effect of induction (fingo-alem).

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    1. I would also like to know how to approach making a case for a more aggressive early treatment rather than a slowly escalating treatment. I personally would rather front-load my risk and take an immune reconstitution therapy. I am 35 years old, but have been relatively stable for 7 years but with a slow, barely clinical decline. I certainly notice it even if my neurologist doesn't think it is serious. I am worried about the age effect on DMT efficacy which you covered earlier this week, and about sub clinical atrophy. I personally would prefer to take something hard early. Also I want to live in a developing country for a year or two (currently in the UK) without regard to needing expensive DMTs. But I worry that the NICE guidelines make this impossible.

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    2. Oh and I should have mentioned that despite being relatively stable, I have a high lesion load of ~25 lesions. Anyway, I definitely second the best switching strategy and also any comments on how to go about non-traditional DMT escalation.

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    3. Hi Anon,
      I sent this to one of our neurologists to see whether it could be a post. I've included her response below to let you know what she thought:
      That one is really tricky because he/she is asking for clinical advice, which we should not respond to.
      Best advice is to be referred to a neurologist who would discuss the personal risks in private.

      We treat according to NICE guidelines, when there is evidence for MS inflammatory activity. We offer induction treatment early, because alemtuzumab is licensed as 1st line.

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    4. Thanks Rebecca for asking. I more am curious not for specific advice to me, maybe I should have left out my personal details, but just the pros/cons of treating more aggressively versus slowly escalating when also considering age, lesion load, and disease activity. It seems obvious to escalate if you are doing poorly. But is there reason to try to hit hard earlier when you are younger? Only for active MS or for less active MS? Or are the risks too high? What are the risks? I guess that sort of nuanced discussion of pros and cons which then can be brought to a neurologist for further discussion with your particular case is what I was after. Like what are the schools of thought on this. Are neurologists all in lock step or is there a diversity of opinion?

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  5. I like Fat Bob’s question- is it worth trying an anti-inflammatory diet? Also, given that I’m 60, does it make any sense to continue with one of the DMDs? Or is pretty ineffective at this point?

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  6. I'd love to know more about the CSF flow and MS.
    Dr Damadian in the article "The possible role of cranio-cervical trauma and abnormal CSF hydrodynamics in the genesis of multiple sclerosis" showed that pwMS have low CSF flow. He even shows that injuries in the neck can cause MS.

    Dr Rosa in the article "The Craniocervical Junction: Observations regarding the Relationship between Misalignment, Obstruction of Cerebrospinal Fluid Flow, Cerebellar Tonsillar Ectopia, and Image-Guided Correction" is healing MS patients by aligning their Atlas bone. Apparently he has had a huge success!

    This builds up on the CCSVI theory, but probably the veins are strangled by the Atlas bone and that's why many people don't benefit from the venoplasty...

    If this is real and backed by science, this is huge! It's the end of MS as a autoimmune disease...

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    1. Shame the CCSVI theory is not backed by science,

      MS may not be a primary autoimmune disease but you will need more evidence to change dogma.

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  7. On latest evidence, are pwMS advised to aim for and maintain very high levels of Vitimin D or not?

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    1. We believe people should be vitamin replete to maintain bone health

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  8. Is MS contagious? What is the prevalence of MS (and IM) among nuns and priests? Prostitutes? In LGBT community? Are we close to a cure?

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  9. Any research carried out regarding the effect of the menopause on MS, and taking HRT?

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  10. In the past, this blog has made a compelling case for an induction approach to MS (most notably with alemtuzumab). I would like to know more about the different factors that neurologists at the clinic might consider in selecting a maintenance drug after two cycles of alemtuzumab, including prognostic factors and the different pros/cons of different maintenance drugs.

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  11. I would like to see some stuff on "pseudo-relapses" and sudden "step-downs" in functioning caused by major illnesses and/or traumas. I suffered a rare and nearly fatal health crisis which involved massive surgery, induced coma for days, and several months in hospital and rehab. The hospital neuro did warn me that a "pseudo-relapse" was possible, or that a sudden "step-down" in function could happen, but only time would tell what was going to happen. There would be reasonable numbers of PwMS who have similar problems (e.g. health crisis, serious injury, etc etc) but there seems to be very little information around on this and how to cope with it - there's possibly some in the very serious subscription only type journals, but as a "normal" person access to these is not available.

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  12. Two teenagers developed MS shortly after taking the HPV vaccine.

    Here in Brazil we have had some reported cases of girls who took the HPV vaccine and who, as it turned out, developed Guillain Barre Syndrome.

    https://www.neurologyadvisor.com/actrims-2018/pediatric-multiple-sclerosis-hpv-vaccine-gardasil/article/741559/

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    1. These reports are repeated and probably are well grounded. In Japan there is a lot of discussion about Gardasil and the thing smells like scandal.

      What other conclusions can we draw from this for MS? At least it seems that MS is not a primarily neurological disease but an immune mediated one (some old theories need to die).

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  13. I have read that fasting (in a controlled manner) has potential benefits for the immune system. What is your view? Is there any research?

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    1. The following link might be of interest:
      http://multiple-sclerosis-research.blogspot.com/2016/06/more-on-fasting-diets.html

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    2. I think there is very interesting biology around fasting and possibly ketosis that needs to be looked into. We are on the case.

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    3. I would like to see a guest post by Dr Terry Wahls on that subject.

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  14. Could you do something on he use of repetitive transcranial magnetic stimulation (rTMS) for the treatment of MS? I came across the following paper on PubMed and I have the idea that doctors in the US are doing lots of work on this, on many symptoms other than spasticity. Is spasticity the only MS symptom caused by reduced corticospinal tract excitability and increased H reflex amplitude?

    The use of repetitive transcranial magnetic stimulation (rTMS) for the treatment of spasticity.

    Mori F1, Koch G, Foti C, Bernardi G, Centonze D.
    Author information
    Abstract
    Spasticity is a common disorder in patients with injury of the brain and spinal cord, especially in patients affected by multiple sclerosis (MS). In MS, spasticity is a major cause of long-term disability, it significantly impacts daily activities and quality of life and is only partially influenced by traditional spasmolytic drugs. Transcranial magnetic stimulation (TMS) is a noninvasive tool that can be used to modulate cortical excitability of the leg motor area, inducing remote effects on the excitability of the spinal circuits. The H reflex is a reliable electrophysiologic measure of the stretch reflex, and has been used in previous studies to test the effects of rTMS of the motor cortex on spinal circuitry. Based on these premises, originating from physiological studies in normal subjects, some studies have demonstrated that rTMS of the leg motor cortex can be beneficial in the management of spasticity by enhancing corticospinal tract excitability and reducing H reflex amplitude.

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  15. I am interested in how the effectiveness of a new treatment in a clinical trial is measured by the reduction in relapse rate between a control group and the test group. We all know that MS is an unpredictable disease that behaves differently from person to person. One person with MS might have 6 relapses in a year and the next person with MS might have one relapse in 6 years. Realizing this, how can scientists say that a tested drug reduces the relapse rate of a test group X% over a control group? Seems a little like creative statistics for the benefit of Big Pharma to me.

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    1. So you are saying that the larger the sample, the less variable and unpredictable MS becomes?

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    2. The largere the size the more variability is accounted for and becomes more reliable

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    3. Stavros is right. The "objectivity" of pharma-restricted, clinical trial results based on ill-defined phenomena like relapses of a disease of unknown etiology is like the two-headed monster living in the forests of the Aegean islands: non existent. Especially when the relapse rates measured are << 1, which means that most people of the tested group never relapsed. This is the case in most modern drugs.

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    4. In modern tirals most people with active disease are treated and not put in a trial so the demographics are no different

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    5. Theoritically, but in practice it seems that they often choose more benign cases to optimise the final results. This is not my personal opinion, this was a discussion from an MS conference.

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  16. What is happening with the VSN16R trial? Results have been expected "soon" for a long time!

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    1. As said a number of times look to the financial pages first, until it is reported there we can not say anything

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    2. So, are you aware of anything expected to be reported in the financial pages soon?

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    3. It's up to the financial people I can't say anything either way.

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  17. a blog post about DMT's in progressive disease would be interesting. Which DMT's can show significant effects on hand function like natalizumab?
    If we propose that every functional system like hand function and walking evolve to progression indipendently, shouldnt we treat also the progressive patients with high EDSS (>6) but still in control of hand function aggressively?

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  18. Anything on immune regulation.

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  19. A post on what MS researchers don't know. Every year there are 1000s of MS papers published and tens of MS conferences / seminars take place. The general consensus is that the field has come on leaps and bounds. But what are the key areas where understanding / knowledge is still incomplete or non-existent. What is preventing the real breakthroughs in areas such as prevention, stopping progression and repair.

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    1. There is no consitent view of what occurs in MS.

      Dogma and a "lemming mentality" stifles creatinve thinking and the ability to be the child who says the emporeror is not wearing any cloths.

      Could we get an "ulcer moment" (Some one said the cause was infective and the dogma said no, the scientitsts infected themselves and got an ulcer QED". It will take time just like the flat earth view persisteted.

      At the moment you have an entrenched CD4 T cell autoimmunity view and the referees of paper straying from this view seem to "s**t thier pants" and their knee jerk response is reject, reject, reject.

      I can give you exampples for some of the top journals.

      Rather than say I dont agree because of this reason and that reason based on sensible logic. You get babble.

      "You dont prove this"....is not a good arguement. Popperian science is that you try and disprove your idea you dont prove your idea because you can't as ther may always be a what if. No one has proved, I'm proved that MS is a CD4 T cell autoimmune disease (yeah there is circumstantial evidence but there is evidence against too) and indeed the pathology could argue against this view.

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  20. You have covered exercise very extensively on this blog. How about diet? There are several diet plans that are advertised for ms. What does Barts recommend?

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    1. I am working on the diet series. The problem is when you get into diets you realise that there is so much information out there that is wrong. I am in the process of reading books on the subject and have many still to go. I am currently reading the Lore of Nutrition which is a real eye-opener.

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    2. The following is a list of some of he books that I will using to form my opinions:

      The Diet Myth: The Real Science Behind What We Eat
      by Professor Tim Spector

      The Case Against Sugar
      by Gary Taubes

      Good Calories, Bad Calories: Fats, Carbs, and the Controversial Science of Diet and Health
      by Gary Taubes

      The Big Fat Surprise: why butter, meat, and cheese belong in a healthy diet
      by Nina Teicholz

      Lore of Nutrition: Challenging conventional dietary beliefs
      by Tim Noakes

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    3. What about the Swank diet for MS?

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    4. Low FODMAP Diet, for IBS?

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    5. Prof G - if you are looking into the role of sugar then a "diet" movie well worth watching is "That Sugar film". It's based on real science, is readily available on the internet, and provides a real eye-opener into what are perceived by many people to be healthy foods. It has a couple of hilariously funny sections as excellent comic relief in the subject matter, and gets a serious message across in a way which is accessible to Joe/Josephine Public.

      Also - if you can find a way to watch it - "The Men Who Made Us Fat" is a 3 part documentary by Jacques Peretti - it delves into a lot of the history and vested interests at play over the years in the formation of government advice on diet. The series is available on DVD but I sure can't afford it - however if you search YouTube for it there are quite a few short excerpts available to watch.
      (https://www.films.com/id/32398/The_Men_Who_Made_Us_Fat)

      The following article summarises some of what is in Jacques Perotti's series - and you don't have to pay! https://www.nytimes.com/2016/09/13/well/eat/how-the-sugar-industry-shifted-blame-to-fat.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=second-column-region&region=top-news&WT.nav=top-news&_r=1

      And whether one subscribes to the dietary approach promoted therein or not, the first part of Denise Minger's "Death by Food Pyramid" offers some further insights into how we've ended up where we are in relation to conventional dietary advice - offering considerably more detail than the New York Times article does.

      No - I am NOT a conspiracy theorist - all of this stuff is well documented.

      As far as some of the dietary approaches to MS are concerned - PwMS need to watch out for those which are almost pseudo religions - once someone has been "converted" other followers will do their utmost to keep you "within the fold", and will blame any MS related issues on you not following the diet 150%. I once saw a forum post from one poor "victim" who truly believed that they had given themselves a relapse because they ate a single meal of steak and chips and had strayed off their piscaterian path. While extreme, this is not an isolated instance - the forums are full of people who believe they have made their MS worse by straying off whatever diet it is they are following. Sadly, an understanding of cause and effect is rather lacking across the board with many of these people - some equally believe that a relapse will be caused if their Vit D falls below 150 n/mol - and this is supported by the "designer" of the approach - who as a highly qualified medical practitioner should know better. Beware of the psychological blackmail involved - especially with one which is working hard to increase its profile and which grew out of the Swank diet.

      Some elements of these approaches, especially about eating more plant based foods and avoiding overly processed foods are really sound dietary advice, but if PwMS are going to follow any of the specific dietary/lifestyle approaches they need to look further than just some smart looking websites and delve a bit deeper to see how the research has been cherry-picked by most proponents of these approaches.

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    6. Anon 1:09am back again
      As an example of my exhortations above to look further into where some of the "expert advice" is coming from, what I have quoted below is just ONE example - they abound everywhere you look - so it is no wonder that people just find a pretty looking website and don't bother looking further or deeper.

      Forks Over Knives is a site much beloved by those following vegetarian/vegan or piscatorian dietary approaches to MS. Here is just one example of how things get presented. In an article headed "7 ways Milk and Dairy Products are Making You Sick", and under a sub-heading of "Higher Risk of Type 1 Diabetes and Multiple Sclerosis", a qualified medical practitioner has written "In multiple sclerosis (MS), the immune system attacks the insulating sheath of our own nervous system, resulting in a variety of difficult-to-treat and unpredictable neurologic problems. As with type 1 diabetes, numerous studies have reported that cow’s milk consumption may be a significant risk factor for developing MS.[31] [32] [33]".

      To check on the sources being cited, one has to scroll to the end of the article and then click on a link (which is in very small font) to display the sources being cited. When you look at sources numbered 31, 32, and 33 you find that they are studies dating back to 1992, 1974, and 1976 respectively, to wit:
      1992 - Correlation Between Milk and Dairy Product Consumption and Multiple Sclerosis Prevalence: A Worldwide Study
      1974 - Diet and the Geographical Distribution of Multiple Sclerosis
      1976 - The Distribution of Multiple Sclerosis in Relation to the Dairy Industry and Milk Consumption

      Now that means that even the most recent of these studies is 25 years old, and even as "recently" as 1992, issues around Vit D and MS were still not much more than a twinkle in some scientists' eyes, so these studies will not have taken into account possible implications of geographic locations closer to the poles, while diets including significant amounts of dairy products were generally more prevalent in those latitudes. However, the supposed "link" between dairy and MS is taken as gospel by some, based on a theory of "molecular mimicry" causing MS if you consume diary products.

      What gets me so riled up about all of this is that ANYONE with a serious health condition is vulnerable to this type of manipulation by barrow-pushers. It saddens me to read forum posts where people wholeheartedly commit to some of these approaches to the extent that they will write that "I gave myself MS because of my Western Diet and now it's up to me to fix it". The rather poor standard of many "Western Diets" is a contributor to many things, but it's wrong when people are being misled so badly as to cause and effect.

      And for anyone who wants to read the whole article about how dairy products are making them ill, you can find it here
      https://www.forksoverknives.com/7-ways-milk-and-dairy-products-are-making-you-sick/#gs.fqJQ6IE

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  21. What are the possibilities for slowing the progress of the disease us with the diagnosis of G37, mild pleocytosis and OBS negative CSF, ANA nucleoplasmic homogeneous positive, without any other symptoms or findings suggestive of systemic connective tissue disease, and with over 10 lesions on the brain and spinal cord. How many people are in such a situation? Whether the prognosis is better or worse than the classic ms?

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  22. Case studies of pwMS who have experienced all their lesions on MRI disappear. I know MRI might not show all the lesions.

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  23. Strange and unusual experiences in MS.

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  24. Two ideas for posts

    (1.) Cytokines and other biomarkers - Because so many posts argue that MS is one disease and not two (RRMS and PPMS) I am interested in studies showing differences the cytokine profiles of RRMS and PPMS patients. More generally, what is the state of more advanced biomarker studies. When will any be used clinically?

    (2.) Big data studies and progression - either guest posts or critical reviews of these studies. Everyone wants to know what's in store for them and their families. What is this new research showing? https://www.biogen.com/en_us/research-pipeline/biogenscience/rhodes_mining-big-data-in-ms.html https://bwhclinicalandresearchnews.org/2016/01/07/joining-forces-to-conquer-ms/

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  25. I would like a post on antigen-specific immunotherapy. MD did one back in 2014 but that was about mice. Things seem to be moving on and apitope have just announced positive results in their phase IIa trial. What do the Bart's team think of this?

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