MS research roundup July 2012

Another research roundup, and so soon! But there's just been so much interesting research to tell you about.

We already know that someone's risk of getting MS is linked to where they were brought up: very roughly, the further away from the equator, the higher the risk. Another known risk factor is having antibodies to Epstein-Barr virus (EBV): people with MS are far more likely to have EBV antibodies in their blood than people without.

British researchers investigated the distribution of EBV infection, and found it was the same as for MS: infection was more common further away from the equator. We still have a lot to learn about what causes MS, but this could be a piece in the puzzle.

I've often written before about Vitamin D. Its importance is showing up over and over again in any number of different conditions, including MS. Now an Australian study is under way, to see whether taking Vitamin D can prevent MS. The trial will test 3 dosage levels of Vitamin D against placebo in people who've had a first attack of MS-like symptoms, and will run till 2016. It'll be interesting to see the results.

All of us with MS are different: each of us has different symptoms and a different disease course. We can look at averages, though. American researchers studied over 1000 people with MS. They found that RRMS does not inevitably develop into SPMS, and the onset of progression is more dependent on age than on how long the person has had MS.

As neurons are damaged by MS, cell metabolism is disrupted and there is a buildup of sodium. British and French researchers found that sodium buildup measured by MRI could indicate the degree of MS progression. In those with more advanced disease, sodium buildup in the motor cortex is correlated with greater levels of disability.

This is early-stage research, but could become really useful in monitoring disease progression. With advanced disease, sodium was raised even in apparently normal white matter. 

A group of researchers in Germany have discovered an antibody found in the blood of about half of people with MS that is not found in people without the condition. The antibody's implications aren't fully understood as yet, but in rodents it binds to and damages brain cells known to be important for neurological function.

In time this may lead to a blood test for MS and/or a treatment preventing the antibody from binding to brain cells.

Researchers in America have used monoclonal antibodies to stimulate myelin repair in mice with a condition similar to MS. Similar work had been done before, but using far larger molecules than in this research.

They found the molecules were effective, and quick and cheap to synthesise. They were also stable and unlikely to cause an immune response. Much more work needs to be done, but this could in time be a suitable candidate for human trials.

The nerve damage in MS is caused by T-cells, part of the immune system. American researchers are about to start clinical trials using an extract of sea anemone venom, which they've found is a highly selective suppressant of T-cell activity. They hope it should prevent further damage to the nerves.

It's already known that fingolimod (Gilenya / Novartis) reduces relapse rates and disease progression. Swiss researchers have now shown that it's also associated with a reduction in the number of lesions, and slowing of the rate of brain volume loss. Not everyone is able to have fingolimod, but for those who can, this is just another benefit of another hugely useful treatment.

Modafinil (Provigil) is approved to treat excessive daytime sleepiness in narcolepsy and some similar conditions. It is also used for fatigue and sleepiness in MS. In a small trial, people taking modafinil had no significant change in disability level over 3 years, while those not on modafinil did have significant changes.

A much larger study is needed, and particularly comparisons made between taking modafinil with different disease modifiers. This is a really interesting result though,with a lot of potential.

Taiwanese researchers carried out a meta-analysis of studies on the effect of cranberry juice on UTIs. The results confirmed that cranberries do protect against UTIs. The effect was particularly strong in women with recurrent UTIs. There were,however, concerns about the amount of sugar in cranberry juice.

Finally, some excellent news: Canadian researchers have found that people with MS are less likely to get cancer than the general population, particularly bowel cancer. The risk level varied for different types of cancer.

Further studies are needed to find out why people with MS have these different levels of cancer: it may be because both MS and cancer involve the immune system. Still, good news is good news!

Back to the institutions?

I suppose we're getting used to living with austerity. Rising unemployment. Prices going up while incomes don't. Half the shops in the High Street boarded up.

We could argue from now till Christmas about the government's economic policy and its priorities in spending. The fact is, as things stand, there isn't enough money to go round. And that seems to be impacting particularly on disabled people.

I've written before about the many problems with the benefits system for people who are disabled or have long-term illnesses. One thing that's remained sacrosanct, though, is our right to live independently in the community (obviously with appropriate support) - rights that are now enshrined in law.

That's why it's disturbing to see that Worcestershire Council plans to bring in a "maximum expenditure policy", imposing a cap on the cost of social care packages. People with significant care needs are likely to be forced into care homes.

The campaigning disability group We Are Spartacus's new report, Past Caring, analyses the council's proposals. As well as criticising the council’s current consultation exercise, the report shows the proposed policy:

• Will mean disabled people get less support
• Will mean a deterioration in care standards and quality of life
• Could lead to disabled people forced into residential care, even if they don’t want to
• Could force disabled people to rely on charity for the help and support they need
• Goes against the recommendations of the Government’s flagship white paper on social care reform
• Could be open to a legal challenge

There's no question that local authorities currently face huge challenges. But forcing disabled people to leave their homes, costing far more money in the long run, is not the answer.

We're having to get used to a lot of new things. They say you can get used to anything. But not this. Never this.

The Medical Ethics Association, the Telegraph, and the LCP

The Daily Telegraph recently carried an emotive, distressing story. Six doctors had written to the paper suggesting that the Liverpool Care Pathway (LCP), a structured system of care ensuring that people in their final days or hours of life are in as little distress as possible, was being applied inappropriately to reduce strain on hospital resources.

The aim of the LCP is to unite members of the multi-professional team concerning continuing medical treatment, discontinuing treatment, and comfort measures in the last days and hours of life. All non-essential treatments and medications are stopped. Treatments may be started for symptoms such as pain, nausea, or breathing problems.

In some cases, for instance if pain can't be controlled, terminal sedation may be used. As patients receiving this type of deep sedation are typically in their last few hours of life, artificial hydration and nutrition are not given: the patient wouldn't be eating or drinking significant amounts anyway, and fluids may make distressing symptoms like respiratory secretions and pulmonary congestion worse. Palliative sedation therapy doesn't hasten death: it just makes it less uncomfortable.

There were several things in this article I...took issue with, shall we say. I'll list them below.

• It describes the LCP as a "controversial scheme". Quite the contrary: reviews have shown it to be effective and viewed positively by patients' relatives.One study found it reduced the extent to which doctors used medications which could shorten the patient's life. It is national policy in the UK, and now being introduced in other parts of the world.
• Predictably, the article makes an issue of the withdrawal of artificial hydration and feeding. As I said above though, someone in their last few hours of life wouldn't be eating or drinking anyway, and hydration could actually make symptoms worse.
• The six doctors concerned are "experts in elderly care". That doesn't make them experts in palliative care, a quite separate speciality.
• The doctors claim there is no “scientific way of diagnosing imminent death.” Well no. Not to the second. But doctors and (particularly) nurses generally have a pretty good idea of who's on the way out. If a patient's condition improves, they're taken off the Pathway and start the appropriate treatments again.
• The six doctors wrote their letter in conjunction with the Medical Ethics Alliance, a Christian organisation founded to promote pro-life policies. I don't know if they're all members, but presumably they're sympathetic to its views. The MEA believes that terminal sedation and the withholding of artificial hydration and nutrition is euthanasia. I think I've shown above why this is not the case.

If, as the doctors suggest, informed consent is not always being sought for going onto the LCP, then that's wrong and needs to be sorted out. But it's no excuse for scaremongering like this from the Medical Ethics Alliance and the Daily Telegraph. The LCP is good, compassionate, and evidence-based. It'll be a damn shame if people are too frightened to use it.

Tightrope #spoonie

Are you healthy? Pretty much? Imagine you're standing, there, wherever you are just now - living room, office, street - and someone runs over and gives you a shove. Of course, you're shocked. Sure, your arm might hurt a bit where they pushed you. But basically, you're OK. Your feet are firmly planted on solid ground.

But it's different for me, and other spoonies like me: people with dreadful, crippling fatigue caused by a long term illness such as MS, CFS/ME, lupus, cancer etc. You have to imagine we're standing on a tightrope, already a little wobbly. The result is that when we get that unexpected shove, we start wobbling furiously, and quite possibly fall off.

This, of course, was an analogy. The tightrope is our fragile health. The smallest thing - a few hours' shopping, or a sniffle that you'd shrug off - can send us crashing to the ground and put us in bed for a week.

And while we're walking our eternal tightrope, so much of our concentration is taken up with juggling: how much energy do I need to save to go out tomorrow? Is this just a bad day or am I getting a bug? I hope I can sleep tonight! How long can I put off the washing up, to save energy?

If you have a spoonie in your life...please don't push them?