Misc

CCSVI coverage in the Wall Street Journal and AP/New York Times

hollie — Fri, 26 Mar 2010 19:25:15 -0400

So far, the mainstream US media has not given much attention to CCSVI research in MS, which is kind of amazing considering how heavily some other MS findings have been hyped. However, that may be changing. Two major US media outlets both released articles this week about CCSVI (chronic cerebrospinal venous insufficiency). Yesterday, the Wall Street Journal reported on the halting of the experimental vein stenting procedure being performed by Dr. Michael Dake at Stanford University. Dr. Dake had planned to try the procedure on 40 people with MS, but the death of one patient and the need for emergency surgery in another led hospital officials to close down the program. Dr. Dake's stance was that he was performing the type of preliminary work required to justify formalized research. The dean of the medical school said that the topic should be pursued further, and asked Stanford doctors to collaborate on studying the prevalence of vascular blockages in MS.

And earlier this week, the Associated Press released an article which can be found on the New York Times' web site. This article reviews the current set of research activities into CCSVI and discusses how these activities have come about through the enormous level of demand from people with MS. For example, the article states that over 13,000 people applied for the University of Buffalo's imaging study -- and 1,000 applied for a 30-person angioplasty trial. Also described is a small angioplasty trial taking place at Georgetown University Hospital.

New data from CCSVI studies will be presented at the upcoming American Academy of Neurology meeting in April. Perhaps the media coverage will pick up even more steam following those results.

[Thanks to MSNews reader Seth Matheson for the pointer!]

Pilots need cooling too

hollie — Wed, 19 Aug 2009 12:56:18 -0400

People with MS who have problems with the heat often benefit from special clothing or gear designed to keep them cool. Apparently pilots flying in un-airconditioned planes have similar needs. Here's one source for cooling gear for aviators. If you've been trying to find the right cooling solution but none of the MS-marketed products meet your needs, it might help to look at products marketed for other uses. (Thanks to reader Rob S. for this tip!)

While we're on the topic of cooling, the MS Association of American provides free cooling gear to people who are diagnosed with MS and who meet their income requirements. The MSAA also provides many other forms of help, such as free mobility equipment, telephone helplines, assistance with paying for diagnostic MRIs, and educational materials. Check our their site if you're not familiar with all that they do.

A good explanation of why you shouldn't believe anything you read about science in the press

art — Tue, 19 May 2009 11:09:22 -0400

Here's a funny comic that nails why you shouldn't believe anything you read about scientific results in the press without going back to the original source to see what it really said.

Biobanks make Time Magazine's "10 Ideas Changing the World Right Now"

art — Thu, 14 May 2009 13:04:51 -0400

Time Magazine has realized what Accelerated Cure Project has known for quite some time - biobanks are the future.

If you would like to be a part of this great trend, become a participant in our MS (and related demyelinating diseases) repository by starting here.

New nucleotide could revolutionize epigenetics

art — Mon, 27 Apr 2009 09:32:58 -0400

One of the premises for the foundation of the Accelerated Cure Project repository is that there are many things we don't know about yet, and that we should have as many biological samples stored to look at those things in the future when we learn about them.

This announcement that indicates a fundamental new discovery in genetics that could relate to development of a variety of disorders shows that we aren't quite as on top of our understanding of biology as the general press would lead us to believe.

MS is third leading cause of paralysis in the US

art — Mon, 27 Apr 2009 09:26:56 -0400

This report funded by the Christopher and Dana Reeve Foundation to put a number on the population that suffers from movement-limiting disorders. MS ranks third after stroke and spinal cord injury as reason for paralysis or partial paralysis in the US.

Human Natural Autoantibodies That Stimulate Remyelination In Animals

art — Tue, 21 Apr 2009 11:47:58 -0400

This isn't an MS study, but the results are relevant to MS. This neuroprotection work found that certain human monoclonal autoantibodies stimulated remyelination in animal models.

Google Health not ready for prime-time

art — Tue, 21 Apr 2009 09:54:29 -0400

Google Health apparently provides a service where you can upload your medical records and they'll do all sorts of analysis on it for you, while "maintaining" it for access by any doctor you authorize.

Seems that you can get some surprises by being an early adopter of this service. The person in this article was alerted to a host of problems he didn't know he had. And didn't actually have.

Since I'm a patient at the same hospital, I think I'll wait before venturing forth into Google Health territory.

Believing in Treatments That Don’t Work

art — Mon, 06 Apr 2009 15:50:09 -0400

This story isn't about MS, but it shines a light on one of the many sorry aspects of how "medicine" works today - how ideology trumps evidence. Read it if you want to educate yourself on how to be properly skeptical, or if you just want to be a little more depressed.

Cats give hope for CNS repair

art — Mon, 06 Apr 2009 15:44:15 -0400

A study that was using irradiated food on pregnant cats found that they lost much of the myelin in their brains and got an MS-like illness.

Taking them off the diet caused them to acquire some amount of remyelination and to regain function - giving hope that repair strategies might be workable in MS in humans.

Now I urge you to ignore the horrendous reporting on this article where the MS doc they spoke with was allowed to dismiss irradiated food as posing no threat to humans and as "species specific" even though he has no idea what caused the demyelination and had no involvement in the study.

Rather than dismiss it, wouldn't you expect an MS doc to say "Hey, that's interesting, let's see what that's all about."? Well, I do.