News for the Multiple Sclerosis Community

Tysabri has been back on the market for 2 years now. A whopping 17,800 people are taking it in the US, with 13,400 more world-wide. No new cases of confirmed PML have been seen, but only 6,600 people have been on Tysabri for more than 18 months.

So far, so good!

No country has figured out a healthcare system that works for everyone (or even most people). The US system is seriously broken and detractors are usually proponents of some form of national health system.

Here's a story from the UK about the poor treatment you get from NHS when you have MS and the failure of a five year effort to fix that.

Here's a health plan that works: get really rich and be able to afford the best doctors and hospitals. Now we just need a plan to get really rich.

Oh wait, that's only good news for shareholders. Guess we shouldn't get our good news from financial reporters.

Anyway, enjoy the snazzy new higher prices on Avonex, Tysabri, Rebif, etc.

More than half of Americans would rather die than live with a severe disability, according to a survey.

In the online poll commissioned by Disaboom, a Web site and social network for people affected by disabilities, 52 percent of the 1,000 "nationally represented" adults chose death over losing the ability to live an independent life.

Genetic researchers in Syracuse, NY have identified gene variants that may affect severity of MS. They were trying to confirm previous findings that linked genes in the CCL cluster on chromosome 17 with a higher risk of MS, but those results couldn't be replicated. However, when they analyzed the data for severity, they found variants in the CCL8 gene that were more frequent in subjects with "severe" MS compared with subjects with "mild" MS. CCL genes play a role in the immune response, so these results suggest that factors that influence immune responses may also influence the severity of MS.

This study is of particular interest to us at Accelerated Cure Project because the samples used included DNA samples from our sample and data repository. In fact, this is the first published journal article that mentions our repository as a source of samples. We expect there will be many more!

Scientists discovered that watermelon has an effect similar to well-known drug Viagra. The positive effect is attributed to an ingredient citrulline found in watermelons.

I wonder if watermelon sales will sky-rocket now?

Changes in the brain can result in changes to personality -- for instance this is often seen in traumatic brain injury -- but this effect has not been studied much in MS. Scientists in Buffalo, NY looked into whether loss of brain tissue in the cerebral cortex could have any connection with personality characteristics.

They performed MRIs on and administered personality tests to 44 MS subjects and analyzed the results, controlling for factors such as cognitive function, depression, and T2 lesion volume. They found that greater cortical atrophy was associated with lower Extroversion and Conscientiousness scores. Moreover, subjects with greater cortical atrophy tended to score themselves higher on Openness and Conscientiousness than others scored them. These results suggest that loss of cortical tissue can affect personality, although the authors acknowledge that their findings need to be confirmed by analyzing changes in personality and cortical volume over time.

Some of this article is a bit difficult to follow, and money is probably a major motivator behind ProNeuron’s accusations that Teva has sabotaged clinical trials. But ProNeuron claims it has evidence that lower doses of COP-1, the active ingredient in Copaxone, may be effective for some neurodegenerative diseases, and it suggests that this might have implications for MS users of Copaxone. ProNeuron claims that Teva has not pursued this because they want to reap the benefits of having patients inject Copaxone daily.

Between currents studies of double dose Copaxone and this article, it sounds like the story about the most effective dosage for Copaxone is far from over. It would be worth tracking this law suite to see if the claims are indeed true.

A form of therapy that's shown success in rehabilitating stroke victims may also be effective in helping people with MS regain function, according to a pilot study. People who suffer from weakness/partial paralysis in one arm often transfer more of their daily living tasks to the other arm. Unfortunately, this can lead to less and less use ("learned non-use") of the affected arm even though it's not totally disabled. The aim of constraint-induced movement therapy (CI therapy) is to restrict the use of the less affected arm in clinical therapy sessions and in daily life while using the affected arm more.

This form of therapy had shown efficacy in clinical trials for other conditions but had not yet been studied in MS, so a research team decided to try it out in five people with progressive MS. These subjects were 50-60 years old and had EDSS scores of 6-7. Each underwent 30 hours of physical therapy targeted on use of the affected limb, and wore a padded mitt on the less-affected hand for 90% of waking hours on training days. Assessments taken after the training period ended and four weeks after that showed overall improvements on all clinical measures including fatigue.

The authors make the point that people with MS are often not referred for rehabilitation, perhaps because the progressive nature of the disease implies a poorer prognosis. However, this study suggests that people with MS may make good candidates for rehab after all. The other lesson for people with MS who are losing strength in a limb is not to stop using it but instead try using it more and see what happens.

These data suggest that civilian exposure to war stress is associated with increased risk for MS relapse. These findings provide insight to stress-related risk factors associated with relapses of MS.

It's always interesting to see how those studying stress in MS find situations that cause stress and use them to look at MS. In this case, it was the 2006 war between Hezbollah and Israel.

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