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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Stem cell and Unicorn poop!

 

Dear all,  1) STEM CELL FOR MS

stem cell

I thought the Panorama piece about stem cell transplantation (AHSCT, ASCT or HSCT) for MS was well done and respectful to people with MS. You can watch it here: http://www.bbc.co.uk/programmes/b06ss17g ,

and there is very good following information on the MS Trust website at https://www.mstrust.org.uk/a-z/stem-cell-therapy#availability

I’m summarising the main points from that here:

As with most treatments for MS, it is only effective for people with either relapsing remitting, or early progressive MS, for whom inflammation is a feature – ie relapses, or active lesions on MRI scan. It’s an aggressive treatment & has significant risks, including risk of death – now reduced to 1-2 per 100 people treated, due to infection.

In the UK, it’s only been offered as treatment on the NHS so far to a very few people, with very aggressive forms of MS, who have continued to relapse on disease modifying therapies, and in general early in the disease course, before the onset of any permanent disability (although rare exceptions in recent disability within last year)

There is one clinical trial currently recruiting in the UK currently; details here:

https://clinicaltrials.gov/ct2/show/NCT00273364,

There are stem cell treatments going on commercially, which some people have travelled abroad for. Costs are between £30,000 and £85,000. Some clinics may accept people for whom the benefits would not be considered by UK clinicians to balance with the risks, and an important set of questions to ask yourself and the clinics, if you were to consider this, is on the MS Trust site.

Stem cell therapy has the potential to bring significant benefits to some people with MS. It cannot be seen as a cure, as in trials, for some people, progression has continued after around 2 years. Good progress is being made through clinical trials & the outcomes of treatment are improving as more is learned. However, as research is still at an early stage, stem cell therapy is not widely practiced and the results of treatment for a particular person cannot be predicted. The risks should be very carefully considered, including the possibility of treatment-related death,  and weighed up against potential benefits.

 

 

2) UNICORN POOP!

 

Click below to watch

And now, from one of my favourite topics, poo, to another – more poo!This very funny video has a great product to sell – the ‘Squatty Potty’, which gets you in the correct natural position to effectively ‘have your bowels open’, eliminating the U bend kink that puts everything under strain when you sit on a western style toilet. But it’s worth watching just for the handsome prince eating unicorn poop icecream.

All the best! – Miranda

 

 

 

 

 

 

 

 

 

 

 

 

 

Functional medicine to heal auto-immune diseases

It’s another ‘lazy’ blog, re-blogging a great piece called ‘How to stop attacking yourself. 9 steps to heal automimmune disease’ by Dr. Mark Hyman. Brings together a lot of familiar themes; the gut, leaky gut and how to heal it, food intolerances, and calming inflammation.

http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/#close

When he talks about infectious agents, I agree, but I tend to use SOS-Advance as it blitzes most things without destroying your natural gut flora.

I hope that soon I’ll get a chance to write something fresh – I’ve been photographing my cooking, so expect a recipe section soon!

All the best

Miranda

MS, Auto immune disease and gut health research

I know I keep going on about guts, healthy, leaky, gut bacteria, diet, etc etc, but I just keep bumping into research that seems to show just how important it is in auto-immune disease. Here’s the latest thing I found:

http://www.med.lu.se/english/news_archive/040908_ms

So. Anyone remember Judy Blume? “I must, I must, I must, I must increase my bust”?!

Change that to “I must I must I must, I must look after my guts!”

Nourish the gut wall, as described in the 2 previous posts, identify any food intolerances that have been caused by previous/existing gut wall problems and avoid, add anti-inflammatory flax seed oil & vitamin D, and keep building up the health of the intestines and digestion with great dietary fibre, less sugar, probiotics and prebiotics.

Just found out that through MS-UK, people with MS can get a massive discount on food intolerance testing. Email info@ms-uk.org to find out about this. 🙂

Gut health and probiotics for MS

Bacteria and Digestion

I quite often get asked about bloating. But did you know that you don’t have to have digestive symptoms to be suffering from ‘dysbiosis’ or wrong bacteria in the gut? It might be easy to think of this as something that’s just a minor inconvenience. However – gut problems are not just miserable & uncomfortable, they can also possibly play a role in  auto-immune diseases like MS. In fact  Hippocrates, the ‘Father of modern medicine’ is quoted as saying that ‘all disease begins in the gut’.

If the health of the gut breaks down, undigested food molecules can pass into the bloodstream. This is known as ‘leaky gut’. These undigested food molecules can be interpreted by the body as ‘bad guys’, and activate an immune reaction, causing a food intolerance. According to the theory of ‘molecular mimicry’, the confused immune system can then mistake other molecules, of the body’s own tissues, which are similar to these undigested food molecules, to also be ‘bad guys’ or pathogens, and launch an immune response to its own tissues, setting up an auto-immune disease.

So let’s take a look at this one aspect of gut health; bacteria,  & how it affects us. The gut is basically a long tube, that travels from the mouth to the anus, with many shapes & sizes along the way, to accommodate the different stages of digestion! I’ve discussed constipation, diet and stool health, and the link between auto-immune disease and food intolerances before in this blog , but today I’m thinking about the tiny beings who live with us, lovingly help to keep us healthy but also depend on us too for their existence  – Bacteria! bacteria

From the 1600s, and the invention of the first microscope, we have known about the existence of our internal bacteria, but up until quite recently, the focus for medicine has been more about the ‘war on germs’, and the eradication of infectious disease. We now understand that our gut is home to approximately 100 trillion micro-organisms. Did you know that: Bacterial cells outnumber our human cells to the extent that you could say that we are actually only 10% human, and 90% bacterial? Or that three pounds of your body weight is bacteria?

75% of our immune system is comprised of intestinal bacteria –  and it also helps to regulate metabolism, digestion and the absorption of nutrients from food. The health of our gut depends on this intestinal ‘flora’ being in balance, and gut health is critical to overall health, with poor gut health implicated in a wide range of diseases including diabetes, obesity, rheumatoid arthritis and other auto-immune diseases, autism spectrum disorder and even depression. So what can disrupt the healthy bacteria in the gut?  Top of the list is

  • Antibiotics – life saving but also seriously disrupt the ‘biome’

Amongst others,

  • Steroids and other medications like birth control and non- steroidal anti-inflammatories
  • Diets high in refined carbohydrates, sugar and processed foods
  • Diets low in ‘fermentable fibres’ – food for the good bacteria
  • Chronic stress          &          Chronic infections

What can we do to help repopulate the gut with healthy bacteria? And what to do if suffering from ‘digestive discomfort!’?

  • Eat plenty of fermentable fibers (sweet potato, Jerusalem artichoke, yams, dandelion greens, leeks, onion, garlic, or bananas) or take a pro-biotic ( good bacteria) capsule that includes Pre-biotics ( food for the good bacteria)
  • Eat fermented foods like kefir, live yogurt,( be aware these 2 are dairy based), kombucha, sauerkraut, kim chi, – traditionally most societies do, but we’ve forgotten to!
  • and/or take a high-quality, MULTI-STRAIN PRO-BIOTIC ( good bacteria) capsule daily – Bio-Kult is a good one, many others too
  • Keep your diet as close to whole foods as possible
  • Learn how to manage stress healthily

Taking regular probiotics  helps to re-establish the strength of our gut and digestion, reducing the incidence of food intolerances, and allowing the body to free up more of its energy for healing painful conditions. It  has also been found to help prevent recurrent infections like urine infections, and increase our ability to fight off the bad bacteria. The cheapest dairy-free way to get good bacteria into your diet is by making your own sauerkraut – It’s super easy to make – just get a head of organic cabbage, chop it up, punch it in a bowl, sprinkle salt on it, let it sit for half an hour, then put it in jars with a bit of salt water and let it sit on your kichen top for a week. There’s loads of instructions on the internet, but that’s about the size of it. Then use it like pickle.  Til next time :)