A big thank you goes out to all who have sent well wishes to me since I got sick a couple of weeks ago. Happy to report that I'm on the mend, and feeling a bit better every day. So, I'm climbing back onto the "Bits and Pieces" saddle, with another post featuring various items of interest that have piqued my curiosity, amused me, or left me infuriated. I hope they get a rise out of you, too...
- A recent Newsweek article (click here) explores the reasons why, despite billions of dollars being spent on medical research, very few new drugs actually come to market, and why the ones that do don't cure anything. In a nutshell, the article outlines the Byzantine process into which our medical research model has evolved, and the many ways that process has become completely dysfunctional. We throw plenty of money at basic research, such as the discovery of new proteins, compounds, and molecules that show promise for the treatment of disease, but the gap between these basic discoveries and their development into real-world applications has become a growing chasm, so much so that it's been named the "Valley of Death" by the medical research community.
Among the diseases mentioned in the article, for which basic research has yielded promising leads that have seen no follow-up, are metastatic cancers, genetic illnesses, Huntington's disease, and osteoporosis. A molecule has even been discovered shows promise in increasing blood flow through impaired blood vessels (ring any CCSVI bells for anyone?), but all of these discoveries have been left to wither on the vine, for a variety of reasons. It seems that researchers are drawn to the sexy arena of making new discoveries, but not to the more mundane work of shepherding those discoveries through the various testing phases needed to turn them into workable drugs. Funding goes primarily to initial academic research, with precious few resources available to take the discoveries made by that research to fruition. Licensing and patenting hurdles abound, keeping many discoveries from becoming financially viable enough to arouse the interest of the pharmaceutical companies, whose cash is desperately needed to take a newly found compound or molecule across the "Valley of Death".
There are some organizations dedicated to addressing these problems, such as the Myelin Repair Foundation (click here) and Where Are the Cures? (click here), but the problem is so widespread and endemic that it will take a major overhaul in the most basic ways we conduct medical research to turn the situation around. It's time for a revolution, but as I wrote in my piece about the Medical Industrial Complex (click here), the targets seem to be everywhere and nowhere. Here's a video produced by Where Are the Cures? that nicely sums up this massive and enraging problem ...
- There's a fascinating theory as to why so-called autoimmune diseases such as MS, lupus, and Crohn's disease are on the rise, called the "Hygiene Hypothesis" (click here). This hypothesis states that the super hygienic ways of first world countries has eradicated the parasites that were mankind's constant companion throughout evolution, and that this lack of parasites is the cause of many of the diseases that seem to have their roots in an immune system gone haywire.
According to this disease model, the human immune system evolved in the presence of various parasitic organisms, and these organisms produced substances that modulated the immune system to protect themselves from attack. Since most of the citizens of developed nations grow up parasite free, they also grow up without the immunomodulating substances that these parasites secrete, thereby giving their immune systems free reign to attack the body's own cells. Though at first glance this hypothesis may seem far-fetched, the geographic distribution of autoimmune diseases seems to bear it out; less developed countries, where parasites are still rampant in the human population, exhibit far less autoimmune disease than do more developed nations with their much higher standards of personal hygiene and public sanitation.
The answer to this dilemma? Well, to put it bluntly, the reintroduction of parasites into human beings, namely intestinal nasties such as hookworms (part of a family of intestinal parasites called helminths). As is illustrated by a recent article in the UK's Guardian newspaper (click here), researchers have been infecting autoimmune disease sufferers (and, in some cases, themselves) with hookworms in an attempt to alleviate their illnesses, often to surprisingly good effect (click here).
So, anybody up for a nice parasite cocktail? Hell, if it would stop the progression of my disease, I'd bathe in the stuff. As an MS friend of mine once said, I'd climb up the ass of a fat man if I thought it would help my MS...
- In my last post about my sudden fever and resultant hospital stay, I mentioned that my normal body temperature since I was diagnosed with MS is much lower than it was before the disease reared its ugly head. Last night, I took my temperature, and found it to be 96.5°. Many readers have commented that they, too, have normal body temperatures much lower than the traditional 98.6°. Over the years, this subject has come up numerous times on various Internet MS forums, and the general consensus always seems to be that the vast majority of MS patients do have body temperatures well below normal. Yet I've never come across a single scrap of research investigating why this might be, and when I've asked various MS physicians about it, they've had no suitable answer to the question. It seems to me that this phenomenon might be quite significant, and at the very least deserves some attention from MS researchers. Certainly, there might be a connection between low body temperatures and heat sensitivity, and investigations into this subject would be time much better spent than yet more research aimed at finding new and more expensive ways to suppress our immune systems. The fact that the majority of MS patients have low body temperatures seems like something that should have raised the curiosity of MS docs a long time ago. Just another one of those MS things that make you go hmmmm.
- Since I've touched upon the maddening lack of any disease cures during the last 50 years, I thought I'd leave you with this classic bit of comedic truth, provided by the brilliant Chris Rock...
My MS specialist neurologist at John Hopkins will not refill my Amantadine prescription, I need to go see him. Uh so he can see - I still have PPMS, nothing he can do, yeah us MS people get fatigued, Amantadine takes you from dead to 1/2 dead, pay your co-pay, we'll ask your insurance company for some more, thank you, NEXT. In the meantime. since my prescription expired, what shall I do about my fatigue? Doctor, DOCTOR!?ReplyDelete
Thanks for the comedy...always a nice touch!ReplyDelete
Glad to hear you are on the mend!
First of all, glad to hear you're feeling a bit better, Marc. Keep on the recovery mode...ReplyDelete
I too have a low body temp...around 97...good point about heat sensitivity & lower body temp...I'm going to bring this up with my neuro, but I'm sure it's not a high priority with the medical profession.
As for why it takes so long to get meds approved, I can see why after attending lectures about the drugs for MS coming down the pipeline...many have been trashed after very serious side effects, like death, for instance; but still...if we as patients signed waivers to procure meds, we should have the right!!
Your new posts are always a high point.ReplyDelete
There are so many lifestyle differences between developed and undeveloped nations, and never mind the questionable accuracy of reporting for some areas. It would be a good idea to look at the hygiene angle once a lot other stuff got ruled out. Interesting that for all that there is less (reported) autoimmune in undeveloped nations, the populations still have comparatively low lifespans. I'm blaming the parasites :)
That temperature thing in MS is interesting and I wonder why it hasn't been explored. It almost seems like the search for an MS cure has been on tunnel vision. A drug for this symptom, a drug for that symptom. Has no-one been exploring the whole package?
Thank you for the blog. Your videos are great! What kind of wheelchair do you use? Where can I find pictures of you and your setup?ReplyDelete
The temp thing is something we have noticed too. My "normal" is about 97.4 and just a little elevation (fighting an UTI with Cipro right now) is quite incapacitating.
Oh, the lack of curb cuts is a hardship, for sure!
There are 2 people in my household that kicked the take a pill mentality (Non MS). On the MS front LDN has worked great energy wise. We will be taking a closer look at acupuncture and specific points that effect the blood flow.ReplyDelete
Our family certainly don't believe there is any motivation to use research money wisely. We have confirmed CCSVI (funnily enough has MS also). We don't know when or if we can get angioplasty, let alone a repear job if it closes up again.
Drug cure? It will never happen. Not because the disease is incurable but because it's just a bad marketing strategy, for the same reasons TV's & Washing Machines are made to break after 5 years, there's just no need to go out and purchase another one if they still work.
TV's and washing machines will never be made as good as they were years ago, strong makes went bust because there was no rush back for more.
It's a disturbing thought.
Hi WC ~~~ReplyDelete
you have so much in this post I will take a few practice runs, but first;
this hookworm treatment has been creeping into my nightmares, and that is saying a lot since I have a vast supply of terror-scenarios upon which to draw!
I am still getting mileage out of your
Why me Post:
And "thanks" (fake sarcasom voice)
for bringing up the term helminths again.
When I was in elementary school we would often disect "platy-helminths,"
including dividing their tails into one FORKED tail (they lived this way just fine), and then do the same with the HEADS.
This was not such a happy ending, the two heads seemed to pull the body apart as SOON AS they got enough to eat.
eeeee EW, and like I said, "thanks"
for that reminder!
(and no, I don't believe this science teacher was locked up
for his worm torture
any more than
he was for his creepy Santa Claus portrayal with the girls on his lap wa-a-a-ay too long!)
ONCE AGAIN YOU HIT THE NAIL ON TEH HEAD. AS MY WIFES GRANDMOTHER ALWAYS SAID "I WOULD EAT SHIT IF I THOUGHT IT WOULD HELP ME!" THAT SAID I AM STEPPING OUT OF MY BUBBLE AND GOING TO FIND ONE IN THE BACKYARD WITH HEAVY PARASITE ACTIVITY AND A LITTLE OREGANO...WISH ME LUCKReplyDelete
I loved the Chris Rock video, even though I think the whole conspiracy theory is a bit overblown. Would all medical researchers in the world buy into delaying a cure? It seems over reaching. You would think if that were the case, there would be at least one source of wealth somewhere that would fund some great ideas. I think though that funding ideas should have some time of hierarchy. 50% of funding goes to theories involving cures. 50% for theories that involve symptom relief. There's probably more, but you get the drift.ReplyDelete
type of hierarchy (I hate typos in my writing.)ReplyDelete
HAHA Love Chris Rock and his viewsReplyDelete
Wow, I would give anything to have a low temperature. I started having chronic fevers once I got diagnosed with MS. And you know how crappy fevers make you feel, esp. with MS. The doctors could find nothing wrong except the diagnosis known as "fever of unknown origin." When I went on Tysabri the fevers went away (well mostly, sometimes they come back). It makes me wonder if I have a lesion on a part of my brain that regulates temperature.ReplyDelete
Thanks for the continuing blog.
OMG! I had heard about MS and heat ovecourse, but I didn't know about the low temp thing. I've always been at 36.0 degrees, as long as I can remember!ReplyDelete