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Just had a phone call from the Head of MS Research

She asked me to identify one area of research the M.S. Society should focus on in 2015.

I told her she should analyse very regular blood samples taken from pwms both when they’re in a bad patch AND, importantly, when in a good patch, looking for abnormalities.

had she asked you, what area would you like researching?

Hi

For me it’s a toss up between a couple of things. Firstly, I’d like to see some good research into diet. Partly this is to see if there are things that would help all of us. But the main thing I’m interested in is why do some people find certain things really help, such as cutting out gluten or dairy, but then for others it makes no difference - is there a way of knowing who benefit most from the different diets out there?

The other thing I’m interested in is how much influence our emotions, thoughts or personality types have on disease progression. I sometimes wonder if there’s a psychosomatic element to my MS. This could be a bit controversial, as it would be easy for people to blame themselves for getting MS and think it’s their fault, which I don’t think is true. But I know, for example, that many people say they had a very stressful experience before diagnosis, so it would be interesting to see if there are any common themes or traits.

Dan

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Hi All,

back on my hobby horse again.
Why hasn’t the obvious question of a link between MS and vitamin D3 been answered once and for all?
It’s the elephant in the room. How about testing vitamin D3 level of all newly diagnosed sufferers in the UK, i.e. not yet taking D3 supplement?
Straightforward, simple, cheap, important.
If this was a murder, D3 would be a Prime Suspect. Admittedly not the only one.

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I an with Dave 999 - I think Vit D3 deficiency could be a real contender, and well worth some serious research.

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Yes I agree with this Dan. Also that stress can make us vulnerable to infections which in itself can trigger a relapse. Not getting enough sleep can make up vulnerable to infections too (not just pwMS).

Me too. I have wondered if it is not so much a lack of vitamin D, more an inability of the body to process and/or store it in some people that might be significant.

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The link between glandular fever and ms.

I’m pretty sure it’s already been the subject of serious research.

Enough for my neuro to say he is sure vitamin D (or, more accurately, deficiency of it) is implicated.

Neuros aren’t known for going round saying they’re sure unless there’s a pretty convincing file of evidence. I don’t think he means he has a hunch.

Tina

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I’d like to see research into why some of us tolerate the heat better than the cold and vica versa,and why the humidity level affects some of us.This is research which the drug companies will never do.They may have influence within Governments and sell their drugs to all kinds of health organisations,but they can’t control the weather.Air conditioning companies may be interested though.

Wb

it seems all lines of research end up in-conclusive.

Are we really any further on than we were 20 years ago?

Does any one monitor the efficiency or otherwise of the researchers?

The Chancellor of the Exchequer knows how much the UK drug companies make,and the PCTs know what they spend on ‘MS drugs’.Efficiency and profit are different things,but they hinge on what neurologists prescribe.

Wb

any research to fight the illness,and not trying to modify it,dmt dont really fight the illness just the symptoms,i agree that a lot of people,get great benefit from dmt,but time to fight the illness

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l agree with the test for Vitd3 levels - and why some of us do not absorb it. After years of taking a high dose l am no further up the scale. So its obvious l do not absorb it efficiently - l know it needs fat to help it.

l have started to use a spray that you squirt directly on the tongue. This means it is going straight into the blood and not being passed through the digestive system. [BetterYou DLUX one daily spray is 3,000 ius.]

Research has shown that almost 90% of our vitd3 supplement is not utilised when taking it in capsule/tablet form. Look at the latest Pathways mag.

Also, the same with Vit B12 - another essential vit that us with MS need at a high dose. The symptoms of vit b12 deficiency can be mistaken for MS. Google ‘Could it be B12 - An Epidemic of Misdiagnosis’.

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Research on injecting people with tiny and then increasing doses of their own myelin, to try and desensitise the immune system and stop it attacking myelin. The work done on this so far suggests it could be a cure but it’s another area the drug companies are unlikely to fund.

Hello Treek,further to your request for glandular fever and links with MS, I remember posts years ago about the people who had mumps, chicken pox and glandular fever…I’m one of them,and if memory serves(MEGALOL) there were a few others.

Wb

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Shingles was another link - l had vertigo and shingles before diagnosis. Had shingles twice since. l know- that is greedy!

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