First this month, I have to apologise for the complete lack of posts since the last roundup. I've been a bit MSified - and in the less bad bits, I've been attempting to do some "real work". I have told myself off severely, and promise I will blog more this month. Honest.
My poorliness in July also meant that I wasn't keeping my usual eagle eye on what research results were being reported. Sorry and all for the low number of results I discuss in this post.
So on to the research...and more evidence for a link between MS and current vitamin D levels. British researchers compared average vitamin D levels among people in Scotland with MS, and their admission to hospital for things like relapses and infections. They found that the two factors were linked: hospital admissions were highest in spring (April-June) when vitamin D levels were lowest.
This suggests that vitamin D levels are associated with whatever it is that causes people with MS to be admitted to hospital. We already know that vitamin D affects the immune system: being deficient can increase the risk of infections and probably relapses.
Australian researchers have found that past infection with Epstein-Barr virus (EBV), the virus which causes glandular fever (mononucleosis) can combine with genetic variations to increase the risk of developing MS by up to 20 times. There was no evidence that a current infection with EBV could bring on MS.
Not research, but a discussion...a group of researchers held a session on cognitive (thinking) dysfunction in MS, and the problems of developing longitudinal tests and standardising data for the effects of MS on the mind. The researchers gave the contrasting example of Alzheimer's disease: the cognitive decline caused by that disease is faster and more certain than in MS, where cognitive decline affects about 6% of patients each year.
As far back as 2002, researchers published a consensus paper agreeing a battery of tests to be used to measure cognitive decline in people with MS. According to this discussion, it is time to update the consensus to 2011 standards.
Disappointingly for those of us who have followed its progress, the UK National Institute for Health and Clinical Excellence (NICE) has issued a draft recommendation that Gilenya (fingolimod) should not be prescribed on the NHS. This is because NICE feel that it has not been trialled against the correct drugs: it has been compared with a placebo and with Avonex, while NICE argue that it should be compared with other beta interferons as well as Avonex, and with Tysabri.
Gilenya is licensed for adults with highly active relapsing-remitting MS, who have had either one relapse in a year despite being treated with beta interferons, or two disabling relapses regardless of their treatment. The evidence Novartis submitted to NICE mainly dealt with a subset of the first of these two groups.
People with MS, healthcare professionals and others are invited to comment on this decision. However, it really sounds to me like the ball is in Novartis's court, to submit further trial evidence.
One interesting study that reported recently was carried out by an international group of researchers. They found that health-related quality of life, depression, fatigue and thinking all improved when people took Gilenya. However again the comparison was with a placebo, not with an existing treatment.
Finally for this month, exciting news of an upcoming major stem cell trial. British researchers plan to collect participants' own stem cells from their bone marrow, grow them in the laboratory, then reinject them into their blood. The cells will then make their way to the brain where it is hoped they will repair the damage done by MS.
The research is part-funded by the MS Society, which is concerned by the availability of unproven stem cell treatments. At present, there are no proven stem cell treatments, but many people with MS have been attracted to overseas stem cell clinics offering expensive "cures".
So, that's it for this month. See you in September!
Great blog as allways
ReplyDeleteGreat Margo, thanks. How do I give my comments to big wigs about fingolimod?
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