The LA Times put out a great little piece on how to talk to someone struggling with crisis.
You can read this bit of awesomeness from Susan Silk and Barry Goldman here.
I cannot begin to tell you how much this article speaks to me. When I seek support about losing my vision when I get migraines, please don't take the commiseration angle and tell me about your own headaches in an attempt to normalize my MS. This isn't about you and that approach belittles my state of being. I assure you, when you're looking for support, I'll try my best to make you feel supported and heard. I may not be able to help, but I will try my best to employ this theory when others look to me for empathy. Crisis is not a competition. We all own our little bits of darkness. I'm not looking for you to make things better. Just listen.
Tuesday, 9 April 2013
There have been two studies on Tecfidera, known as DEFINE and CONFIRM. In these studies, Tecfidera reduced MS relapse rates by ~50% (over placebo), and reduced the progression of disability by ~30%. [Sidebar: I so hate the word "progression" when used in this way]. If you're keeping score at home, the "Big Four" MS drugs (Copaxone, Rebif, Avonex, and Betaseron) all reduce relapse rates by around 35%. A fifth common drug, Tysabri, cuts relapse rates by ~65%.
That was the extent of my counting in Spanish, btw. Multilingual I am not!
Tuesday, 2 April 2013
I came across a link purporting that there have been 30,000 unnecessary surgeries and millions and millions of diverted funding only to find CCSVI treatment doesn't work. Again.
While I agree that much of the media conflates the concept of this as causation, come on. Studies that use 19 people? Studies that don't use Doppler? If you're trying to disprove the entire idea that blood flow has something to do with MS, at least do it with studies using, oh, I don't know, more than 20 people!
In my admittedly ridiculously non-medical opinion, the results from all the studies since 2009 put CCSVI in the same light as many other factors associated with MS - geography, potential genetic markers, vitamin D levels, exposure to metals, exposure to viruses. Mind you, we see varying degrees of the same "factors" in healthy controls, but for some reason they're higher in pwMS.
Do I flat out believe that CCSVI is the mainspring of MS? No. I'd love to believe we've found a cause, but I personally think it's multifactorial because, well, we are incredibly complex critters! But the research since 2009 has not shown one way or the other that abnormal blood flow does or does not have a hand in disease emergence or progression. To me, that's worth investigating.
This area of research is heavily linked to products like the new, highly touted BG-12 and is the target of the Wahls diet. It's why Biogen compared their BG-12 (now named Tecfidera) results with Protandim in a study - yes the product endorsed by the ever-young Donny Osmond. Protandim won, by the way, but I'm not here to cast doubt on Tecfidera, I truly believe it can have a huge impact in how "we" approach MS treatments. Abnormal venous blood flow is a plausible explanation for poor endothelial health [shown in McQuaid's The effects of blood-brain barrier disruption on glial cell function in multiple sclerosis, 2nd Neuroscience Ireland Conference. 37: 329-331 and even as far back as the 1990 study on the breakdown of the blood brain barrier by Kermode].
Wahls might call it "minding your mitochondria" and many of those leading the CCSVI charge might speculate about blood flow and its effect on endothelial health, but it's all one and the same, isn't it? People with MS have higher levels of oxidative stress. You fight oxidative stress by quenching free radicals. On the Wahls diet you get an abundance of free radicals to battle oxidative stress. The diet also rules out things that hurt your endothelium by eradicating one's consumption of processed foods. This idea is also why there is ongoing research into treating MS by addressing infections like chlamydia pneumonia - acute bacterial infections become chronic with weakened endothelial health.
By Biogen's own admission, BG-12's mechanism isn't totally clear (nor is the complete mechanism of many MS drugs, take Avonex, for example), but at the very least, it has anti-oxidant properties that block some of the molecules that are known to inhibit mitochondrial function (that in turn exhausts cell energy and can eventually lead to nerve damage).
CCSVI research is no different. No, wait, it is. It's totally different in that media pushed it too far in the beginning by using ridiculous claims. Cure! Causation! While the effects of CCSVI on endothelial function are completely conjectural, enough researchers have confidence that there may be a link between abnormal blood flow caused by CCSVI and endothelial stress.
Does that mean the outrageous claims of cure and causation are justified? No. They're shameful. But it does suggest that blood flow is a very valid area of research in MS. I'd rather my funding go to this type of research than merely pushing all of my coins into the purses of pharmaceutical companies.
(no idea what's up with this formatting)