Latest MS research – what I learned at ECTRIMS, part 2

xcel

Wow, what a full on 3 days for the brain! So inspiring to see a sea of research posters, a vast menu of presentations , and 8000 engaged delegates filling up on the latest research.

Bone marrow transplantation ( HSCT/stem cell) – is it a viable treatment for active relapsing remitting MS – debateimg_3970

Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial –  R.I. Spain (Portland, United States) lipoic-acid

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

Comparison of Beta Interferons, Fingolimon, Alemtuzemab (Lemtrada) and Natalizumab ( Tysabri)

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it. 

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D vit D.jpg

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that  people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

A: Axonal ( nerve) depolarisation ( can’t send messages)

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

A: Currently unclear , CNS specific ( ie we don’t know, but it’s just the central nervous system.)

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:  

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all  mine. If you spot one, please let me know!

That’s all for now, til the next time!

miranda

 

 

 

 

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MS Frontiers intro and OMS newsletter

I was proud to present this poster at the MS Frontiers conference – Fantastic findings re Flax seed oil – 49% less relapses in people with MS that took it, research by http://www.overcomingms.org just been accepted for publication.. Will post more info asap.

Also coming up – and important to know about if you have RRMS -Campath/alemtuzimab/lemtrada trials

and – interesting stuff from MS Frontiers conference

MS Nurse Miranda Olding presenting our poster at the MS Frontiers Conference

It has been a busy few weeks for Miranda Olding, MS Specialist Nurse, based at the MS Therapy Centre in Bedford. She was recently nominated by her patients for an award of ‘My MS Super Nurse, a competition run by the MS Trust. Click here to hear how Miranda describes her work with the MS Community.

With her holistic approach to patient care, she is a keen advocate of the OMS Recovery program and has represented us on a number of occasions, most recent of which was the MS Frontiers Conference at the Sofitel, Heathrow where she presented a poster on the current research work being undertaken by Professor Jelinek’s team at St. Vincent’s in Melbourne.

Photo: MS Specialist Nurse Miranda Olding presenting our research work in London

Recovering from Multiple Sclerosis: turning evidence into reality

Everyone knows about AMEX day by now, surely? Presented by Professor Jelinek and Dr Craig Hassed this day-long event will lay before you the recovery program and outline the evidence base that led Professor Jelinek to developing the program. The price includes all refreshments, a wonderful lunch and a copy of the book Overcoming Multiple Sclerosis: an evidence based guide to recovery to take home with you. The newly built AMEX Stadium, home of Brighton and Hove Albion Football Club is a wonderful venue with superb facilities. Ticket sales have been strong, and bookings have come in from as far afield as central Europe, but at the time of writing there are still some places left. Don’t leave it until the last minute. This event will not be repeated until the end of 2014 at the earliest. Tickets are obtainable from here

New OMS app for smartphones released!

The new OMS app for smartphones has been released. Download free from the App Store!

Our trusty team has been working away behind the scenes to bring you OMS on your smartphone.

Go to the App Store in iTunes or Google play if you have an android phone and use the keywords ‘overcoming multiple sclerosis’ and you will find the new OMS app, which you can download for free!

From podcasts at your fingertips, to recipes, and even a place to send your photos of the surprised expression of your neurologist when he sees how well you are doing! All there on the new OMS app….

MS Trust annual conference 2012

MS Trust conference – part 1.

In November I attended the MS Trust’s annual conference for healthcare professionals working in the field of MS.

I really enjoyed this year’s conference, and will summarise what I learned below.

The first speaker was Gavin Giovanonni, top MS researcher at Royal London Hospital. This is a pic from his blog, which you can follow at http://multiple-sclerosis-research.blogspot.co.uk/ http://multiple-sclerosis-research.blogspot.co.uk/. It includes ‘the mouse doctor’ (?) who is co-blogger.

vcm_s_kf_repr_150x126

to this talk resonated with everything I have been thinking for the last few years. You could sum it up as MS – which is more important – inflammation or degeneration? This argument has been recently explored in the article

‘Will the real MS please stand up?’ by Peter K. Stys, Gerald W. Zamponi, Jan van Minnen & Jeroen J. G. Geurts  – here’s a link to the full text article http://mssociety.ca/chapters/calgary/pdf/2012_Stys_507.pdf.

This article  weighs heavily on the side of looking at the importance of degeneration, so doesn’t really discuss the benefits of early aggressive treatment of inflammation.

Giovannonni’s blog calls this article ‘myopic ramblings’ ; it’s a dog-eat-dog world out there in academia, but Peter Stys has received funding from the MS Society of Canada to research progressive MS, which has got to be good news.

To illustrate what this discussion is about,  I’ve done a rough diagram based on one by Professors Coles & Compston Lancet. 2002;359:1221-1231

inflammation or degeneration

Basically, the tall skyscrapers represent inflammation –  relapses or new symptoms. They are the part of MS that pretty much all the research and medications for MS have always been aimed at; that’s why research trials always only want to recruit people with relapsing –remitting MS.

But the disappointment over the last few years has been realising that although the  disease modifying MS drugs can show a reduction in relapses, they have not been able to prove a reduction in the progression of MS.

The progressive element of MS is represented by the green block, and represents damage to and loss of axons, the long part of the neurons, or nerve cells.

The argument that Giovannonni presented, which is being mirrored by various thinkers around the world at present, is that perhaps research/pharmaceuticals have been focussing on the wrong part of MS. Perhaps the periods of inflammation in MS are the body’s reaction to a degenerative process that is going on.

As in this article, Giovanonni described his team’s interest in HERVs ( human entero-retrograde viruses – virus which are within the genes) and other virus which we can contract later in life; in particular, the Epstein Barr virus which causes glandular fever, and is part of the Herpes virus family. They want to see whether by suppressing these viruses, the driving force of the degenerative process might be taken out, and they have just received funding to do the preliminary research with anti-virals, which is great news.

It made me think again about looking into powerful natural anit-virals, and I’m going to speak to all the people who tried using some last spring to hear about  experiences and see how they’ve been doing since.

Another big factor in his research is Vitamin D; for a long time he has been an advocate of high dose vitamin D3 supplementation. I’ve got previous posts about this so won’t go into the pro side of vitamin D, BUT…

vitamin D

The subject got pretty confusing later when Professor Carolyn Young, Consultant Neurologist and Honorary Professor of Neurology

Walton Centre for Neurology & Neurosurgery, Liverpool led an 

Update on Vitamin D.

The professor warned us that this would be a challenging session, and it was. This is really important, as high dose vitamin D has become a mainstay of treatment for anyone who’s had their ear to the ground in the last few years, and neurologists have started to also take it seriously and recommend it.

She introduced us to all the formative research on vitamin D and MS; the Nurse’s study, which is scientifically important and excellent due to the enormous size of the sample –  92,253 women followed from 1980 to 2000) and Nurses’ Health Study II (NHS II; 95,310 women followed from 1991 to 2001. This study showed that having higher vitamin D blood levels, and taking supplements containing vitamin D had a strong effect of protecting a person from developing MS.

The US army study; likewise, great numbers and scope of years, showing 7 million army recruits from 1992-2004 and compared the vitamin D levels with their risk of developing MS.18 They found 257 new cases of MS in the group. There was a significant decrease in risk with increasing vitamin D levels among white, but not black or Hispanic people, who had lower vitamin D levels than whites. Levels of around 100nmol/L or more seemed to be protective, with almost a two thirds reduction in risk for those with these higher levels.

A good factsheet summarising research on vitamin D and MS is on the MS Trust website at http://www.mstrust.org.uk/downloads/vitamind.pdf

She then gave feedback on 4 or 5 more recent studies, where vitamin D supplementation ( mostly D3 but one study used D2) was given at various doses, over various timescales, none of which showed any influence on annual relapse rate, or level of disability at all.

We then went on to discuss what to make of this?

One point was that an association is not necessarily a cause

For example, low levels of vitamin D in the blood are associated with relapses in MS – but maybe they do not go towards causing it – maybe the low level of vitamin D is caused by the relapse or inflammation?

One point was that it may not be possible to extract the active ingredient – whatever that is – from the foods in order to make an effective supplement, and that sometimes other helpful substances in foods are responsible for the absorption of a nutrient.

I asked whether there was a difference between getting your vitamin D from the action of sunlight on the skin and a supplement? I didn’t get the full answer I was looking for, but Prof Young did make the point that there are other actions that the sun has on the immune system and inflammation that are generally beneficial.

People wanted to know what we should advise ‘while the scientists work it out’. Prof Young’s advice was that she felt that 1000IU should be the top recommendation a healthcare professional makes to a person with MS, and that it chould be checked that the person doesn’t have any kidney problems, as if they do, high dose vit D could cause kidney stones.

I’m going to ask Giovannonni on his blog/twitter/whatever what his response to this is, and also check what George Jelinek has been making of it.

I think if I have any thoughts on this so far, they are that perhaps people with MS need to try to get a s much Vit D as possible from foods and from the action of sunlight on the skin. In this country that only works between April and October, and when the sun is high in the sky.

It makes me wonder about sunbeds, I haven’t gone right into this, but just asking around, apparently you can get vitamin d from using a sunbed, but it has to put out UVB rays.

( and obviously, use sensibly, don’t get burned or overdo it)

I think I’m probably going to carry on recommending 5000IU, due to all the other research I’ve seen, but will be keeping my ear to the ground.

I’ve got more from the conference and will post as soon as I get time to write it up!

We also had a great time at the gala dinner fancy dress night, so In the meantime, this is for the Bedfordshire people – if you ever wondered whether your MS nurses were arch rivals or accomplices in crime, here’s something to confuse you further….!

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haha

it’s not my normal look…

but I did enjoy being Marylin for the night!