Monday, 12 December 2011

Chicago - International task force on vD and MS prevention

I am attending a vitamin D task force in Chicago sponsored by the National Multiple Sclerosis Society (NMSS); a truly amazing organisation (but that is another story).

The aim of the meeting is to design a vitamin D primary prevention trial. I believe this is possible. However, we will only make this a reality if we get public health officials on board across the world. 

Vitamin D deficiency is not only a problem for MS, but impacts on several other diseases as well. We need the support of the people with these diseases. We need a broad lobby!

It is my impression that MS'ers don't 'warm to' or 'engage' in research that focuses on prevention strategies. Why? Is it because you don't like the idea that your disease may be preventable? Or are you like all other humans and are mainly focused on the here and now? 

Your world view may be different if you have brothers and sisters or children who are at high risk of developing MS. Would you not want to prevent them going through what you have been? The bad news on receiving the diagnosis? The uncertainty about the future? The realisation that MS is a life-long disease? The realisation that MS is disabling? The side-effects and risks of DMTs? The financial worries that come with chronic disease? Etc? 

Prevention is all about taking responsibility and making a difference. If we have knowledge and are reasonably certain that our knowledge could change behaviour and make a difference to the world then we are morally obliged to act on this knowledge. 

This meeting is about us realising this moral obligation and taking responsibility. So join the lobby and help us Prevent MS!

Other posts on  this blog you may find of interest:

03 May 2011
Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention. How safe are high dose Vitamin D3 (vD3) supplements? In this study on over 3600 study participants ~25% of ...

15 Aug 2011
So we are going to need your help on taking basic prevention strategies forward! I am particularly concerned with the trend in young girls with regard to smoking (see previous posts). Any suggestions would be much ...

19 Apr 2011
There is a pressing need to investigate the role of vitamin D and EBV and how they might interact to influence MS risk to identify potential prevention strategies. "At last some integrated thinking to try and link risk ...

04 Jul 2011
Preventing the disease is vital. But we mustn't forget those who already have the disease. Tuesday, July 05 ... No our research is not only focused on prevention. We are involved in a large number of clinical trials including the ...

08 Aug 2011
Personally, I would have preferred to see prevention get a larger sahre of the vote. It is very reassuring that nobody voted for CCSVI. It is clear that CCSVI'ers are less vocal than the non-CCSVI'ers when it comes to votes." ...

09 Jul 2011
I think we need a national vitamin D prevention study to convince public health officials to take up the baton." Epub ahead of print: Grant WB. An estimate of the global reduction in mortality rates through doubling vitamin D ...

23 Sep 2011
Vitamin D Supplement Doses and Serum 25-Hydroxyvitamin D in the Range Associated with Cancer Prevention. How safe are high dose Vitamin D3 (vD3) supplements? In this study on over 3600 study participants ~25% of . ...


21 comments:

  1. Prevention of MS is a great idea and must be perused.

    For those of us living with MS, there is no indication that upping vit-D quotas will be of much benefit for us. Our disease is in full bloom and there is little or no going back. You are right in saying life-long means life-long.

    My concerns are more focussed on how I can get better. I guess you can say I am only concerned about myself right now because I'm still young and have no kids. Prevention is not on my radar. Trying to get hold of regenerative therapies most certainly is a priority for me.

    My worry is that the scientific community working in MS is more occupied with preventing MS and not engaging enough with how to deal with the disease in those who have it, especially in progressive forms of MS. I think that even you will agree that not enough progress has been achieved in the latter field.

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  2. Re: "My worry is that the scientific community working in MS is more occupied with preventing MS and not engaging enough with how to deal with the disease in those who have it, especially in progressive forms of MS. I think that even you will agree that not enough progress has been achieved in the latter field."

    I agree, but it is getting the balance right. Not too many eggs in the same basket. Progressive MS and reversing disability may be the hardest nut to crack, but we are working on it.

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  3. Prof G,

    To be honest, I found your comments more than mildly annoying. The idea that those of us with the disease have little interest in research focused on prevention is absurd. I'm ensuring that my children are Vit D replete.

    My own view is that it's not the role of MS patients to lobby for such research. The researchers (paid experts) should be generating compelling evidence of the need for Vit D supplementation and the cost savings for future health budgets). Patients in wheelchairs waving flags will add little. Unfortunately, as with most things MS, this sort of research will take decades to complete. Those with MS need to be proactive and ensure that their loved ones are Vit D replete now.

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  4. Re: "I found your comments more than mildly annoying."

    Apologies about the generalisation; I have base my comments on the survey results and comments posted on this blog in the past:

    http://multiple-sclerosis-research.blogspot.com/2011/08/survey-results-on-ms-research-money.html

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  5. Prof G, I would like to know what your team’s top 5 research priorities are for 2012? This is not meant to be a mocking question, but more as means of understanding your research aims.

    I feel it’s important for us MS’ers to know what the people behind this blog are working on and where we fit in that vision. Some people will be better served than others but at least it will give some context.

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  6. Prof G,

    I'd like to be ahead of the game, so grateful for any suggestions on what my children should be given. Currently giving them 4000 of D3. Is this enough?

    PS we are interested in all aspects of research. But, if your brain is on fire, your priority is to put the fire out now! Your comments reflect the fact that you don't have MS.

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  7. The National Multiple Sclerosis Society is a huge organisation. The Americans obviously have more resources than the UK arm of the charity, but all this goes to show just how big the fight against MS is and how many folk across the world are actively working to make sense of this disease.

    Therein is the biggest discrepancy: So much money, man-hours and coming together has been going on in MS research yet the disease, or at least fundamental aspects of it, remain largely untreatable.

    Dr. Timothy Coetzee et al have a vision for MS research that is unlike anything I've come across in MS investigation. I'm a huge supporter of the 'FastForward' programme but remain disappointed by how little it has delivered in real terms.

    In 1945, when Sylvia Lawry started the NMSS, she wanted to see the disease cured within her lifetime. It’s been a decade since her death, and although there are some ad-hoc treatments for MS, the disease very much remains a mystery.

    Vitamin D is not at the forefront of my mind. I am sure most of your readers wish they had spent more time in the sun, but scientists cannot categorically confirm that MS is a wholesale result of vit D deficiency. Furthermore, the preventable causes of MS rightfully belong in the academic domain. Those who live with the disease want to make their own disease trajectory hopeful. That’s a totally understandable viewpoint and I do not see why MS’ers need to be crusaders for vit D when it can no longer benefit the course of their disease.

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  8. A sibling's MS risk is scarily high and the thought of a 2nd family member developing MS really worries me so I am very concerned about prevention. But when a survey asks us to click on a single research area then Curing MS is the obvious choice. It doesn't mean I'm not interested in Prevention, Repair, etc

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  9. Re: "But, if your brain is on fire, your priority is to put the fire out now! Your comments reflect the fact that you don't have MS."

    I agree; but we do look after and treat a large number of MS'ers. I reminded of what the disease can do everyday of my life. Which is why my whole family is on daily vD supplements.

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  10. Re: "I'd like to be ahead of the game, so grateful for any suggestions on what my children should be given. Currently giving them 4000 of D3. Is this enough?"

    My current recommendations are as follows:

    < 2 years of age = 600U per day.
    2-10 years = 2,000U per day.
    >10 years = 5,000U per day.

    These recommendations are based on vD experts' advice, particularly those who started the vitamin D council.

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  11. I am absolutely definitely a supporter of preventative measures, 200% , plus I am in favour of finding a cure for those MSers now, also 200% - therein lies the problem, as to my mind that adds up to 400%...

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  12. Have you watched the TED talk about the paleo diet and mitochondria, and the affect on the brain? If so, what are your thoughts?

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  13. Re 'join the lobby and help us Prevent MS'- What can we do other than tell friends & family about Vit D and smoking?

    Even that doesn't work very well. Children still at home can be given Vit D every day. Children already living elsewhere may forget to take it and could be smoking away. Others don't really listen. I try to tell people why Vit D is important and after that the typical reaction is "Nothing like a balanced diet. Then nobody would need any supplements"

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  14. The MSRC website had an article on9/12/11 that a rare gene has been shown to link vit D and MS; also it had an article on 29/11/11- Vit D- hope or hype?- from US doctors stating no supplements nec., just a healthy diet- how are the public to reaise the importance of Vit d if some of the medical community publish articles like this? Saying that, the Daily Mail had 3 separate articles today on the importance of Vit D.

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  15. Re: "Nothing like a balanced diet. Then nobody would need any supplements"

    This is why we need to educate the public; vD is not really a vitamin and a balanced diet won't give you enough vD to raise your levels sufficiently.

    We are discussing this at the moment in Chicago.

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  16. ProfG, what d'you mean by 'vD is nt really a vitamin'?

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  17. "I feel it’s important for us MS’ers to know what the people behind this blog are working on and where we fit in that vision".

    If you have a look at publications it can give you a feel for some of the things we are doing. We have yet to publish some of the stuff we started 8 years ago.

    Our vision is translational neuroscience but this takes years.

    For us to translate our ideas from the bench to the pharmacist we need you the MSers. Sometimes it is a passive role and sometimes it is an active role and there are roles yet to come

    For example the information you gave in the survey has been invaluable in helping us plan to take research forward.

    Our priorities may change but it fits in the idea of translational neuroscience and this goes with our personal interests, those interests of the people we work with around the globe and what the research climate is (e.g. we may not be here next year with job cuts in the unviersity imminent and some of the medical charities killing off/starving UK researchers)

    You can't do every thing and somethings you cannot get funded to do.

    Does that stop us doing it..not always but we have to be inventive to do this.

    Up to to about 2000 prof B was a hard core neuroimmunologist but since that time we are interested in aspects of symptom control and progressive MS. We have started to investigate repair, because we are very good at dealing with the immune arm

    Prof G has other visions about cause and prevention and treatments,etc,etc, etc

    Prof G-the other one--yes there is more than one-has another focus of viruses and MS

    DoctorRuth Prevention

    Prof M-stem cells

    DoctorVD-VD

    DoctorM the innate immune system

    DoctorM&M-Immune system

    DoctorLove Pathogenic proteins

    MouseDoctorIII finding drugs to treat MS (If you have a mouse in the house you can be sure there is more than one of them)

    etc. etc. etc. Some of the above have yet to post on blog but they might, some may not even read it.

    Just as we speak alot of differnt languages in Team G. There are many interests.

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  18. Is there anyone campaigning on this in England? I would love to campaign on this, but don't know who to join up with. None of the MS charities seem to be doing much on this issue.

    Any advice appreciated.

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  19. @Jo: Have you looked into the Shine on MS Campaign? I know that they are in need of help: http://shineonms.com/getinvolved

    Alan and Ryan Mclaughlin are the founders of this campaign. You can contact them directly on the Shine on MS site.

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  20. Re: "vD Campaign."

    There are a lot of disparate groups who are campaigning on this. At some stage someone needs to bring them under one umbrella with a coordinated campaign. Any volunteers?

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  21. Thanks both. I'll get in touch with Shine on Scotland and see who else is campaigning on it. It would be useful to understand why the MS charities aren't tackling this and I think I will just ask them directly.

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