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TWiV 110 Letters

Jay writes:

Looks like the polio outbreak in the Congo is pretty bad.

http://www.google.com/hostednews/afp/article/ALeqM5jpSHvrTg3sqCZs9hPXwYsuwAjXNA?docId=CNG.29d0fd00722f6f7964062dad40b4f107.ca1

http://www.unicef.org/media/media_56792.html

Over 120 deaths and 280 AFP cases so far.

Looks like this variant is related to the Type 1 circulating in Angola, which was originally derived from India (most likely from migrant workers).

Interestingly the average age is between 15 and 29 years old which is outside the usual AFP surveillance guidelines of <15 years of age. This is probably due to the vaccination gaps in the past when this age group were less likely to have been exposed to either wild or vaccine virus.

Pretty depressing really.

Cheers,

Jay

Senior Medical Scientist

Poliovirus Reference Laboratory

North Melbourne, Australia

www.vidrl.org.au

Jaakko writes:

Hello dear TWIV hosts.

Few weeks ago I made a search in iTunes for XMRV and found your pod cast. I listened to one episode on that topic and I really liked it. So I decided to listen some more and before I knew it, I was hooked. I really like how you can keep the conversation so natural and casual, still being very educational and interesting. Now I've finally reached the last episode and have to get used to getting just one TWIV in a week =)

Here are two articles about a possible connection between the swine flu vaccine and narcolepsia in Finnish and Sweedish children. They are google translated so it's a bit rough read, especially the Finnish one ;)

first article

second article

Basically, what they say, is that there has been a rise in narcolepsy cases in children between 12 and 16 years during last spring. The vaccine linked to this possible connection is called Pandemrix. From what I can tell, the connection is made only via the close timing between the vaccination and the children getting the disease. Also, in the articles the doctors emphasize that they don't still know if there is any connection between the two. Nevertheless, Finnish health officials are now considering if they should stop giving Pandemrix to children.

I would also like to suggest a tip of the week. It's called Khan Academy and is basically an on-line school for everyone. It's totally free, and consist of over 1600 videos covering math, physics, chemistry, some biology and economics and even a little bit of history. The guy making these videos is called Salman Khan and his education style if very accessible. And that's not all, the site also has a browser based math application, which covers math from first grade to most of the high school stuff. You can find KA at khanacademy.org or at youtube.

Lastly I just wanted to thank you guys for doing this every week. Having CFS, listening to stuff is some times all I can do. So finding your pod cast, and after that, some other very interesting pod casts, has brought so much interesting content in to my life.

Jaakko, from Finland.

P.S. Here's a virus joke I came up with... A virus goes in to a bar and orders a drink. The bar tender takes a good glance at him and asks; are you sure you're old enough? To which the Virus replies, are you joking? I'm so old that you could even call me retro! ---laugh/cry here---

Tim writes:

Alan/Vince:

I am a fan of the podcast "This Week in Virology". I really love how Vince does the podcast.

I am a chronic fatigue/fibromyalgia/whatever patient. Been that way for over 15 years. Not much fun, to say the least. Why do some science research? Check out the suicide rate among the fibromyalgia/chronic fatigue patients…

My past history is as an exploration geologist for metals and minerals, River geomorphology, and a host of other areas, including teaching. Then I had a 10 year or so career as a electrical engineer in industry of designing and manufacturing ASIC microchips. That's career ended when I developed my symptoms.

I like science. I like stories. (I also like art). I also think one of the more important problems in our society today is that the common person is not educated in science and the more science education we can give people, the better they can understand our complex society and its trials and tribulations. So my heroes are people like Vince, Ginger Campbell, Lorimer Mosely, ……

I have two suggestions. #1: (this is for Alan) please listen to in the recent TWIV podcast with Dr. Singh. Contrast her and Vince's responses to the listeners e-mail versus t your responses. then toss me an e-mail back or give me a phone call with your thoughts.

I really do not think that either of you are well educated on the history of chronic fatigue syndrome and the government research agencies. It's an unbelievable story. The following is by no means a complete history -- it's just some tidbits that you can use to partially educate yourself or use to dig further into the story.

////////////////////////////////////////////////

Let's start with the beginnings of the CDC/CFS controversy. Here Is a Link to a 1996 ABC "PRIMETIME" episode on the CFS/ME saga:

http://www.vimeo.com/13048135

Then there's the history of the United States federal agencies research on CFS/me, let’s start you off with a very short summary, and assume you can do your further research. (Hillary Johnson is THE source for info on this subject):

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2&_r=2&emc=eta1

The CDC and CFS research it is a fascinating story. Hillary the book and website are both entitled, Osler’s Web. Here's a short list of news reports from the late 90s when the CDC finally had to admit that it was diverging and misappropriating funds that were earmarked for chronic fatigue syndrome:

http://groups.google.com/group/sci.med.diseases.lyme/msg/159a4396e6bf0853

if you dig into it, you will find all sorts of twists and turns in the saga of federal government research monies and chronic fatigue, and the truly sad thing is that it hasn't changed, or at least hasn't changed until very recently ….

http://behindthesurface.blogspot.com/2008/11/cdc-research-funding-scandal-20.html

I also suggest that you check out Dr. Judy Mikovits, of the WPI, statements concerning her desire to share samples, information, etc. with other researchers. From what I can tell, most of the other researchers looking for XMRV, with some exceptions like Dr. Singh, ignored Dr.. Mikovits. And I'm sure you remember from your TWIV interview with Dr. Singh, she said, “XMRV is very hard to find”…. I'm paraphrasing there - you understand what I'm getting at.

Not enough? How about this statement from Dr. Vernon, a respected former CDC virologist:

http://www.cfids.org/xmrv/070110study.asp

How bout outside the USA? It may be worse in the United Kingdom, where the “it is all in their head” and "they just need to gradually build up their endurance via exercise" predominates (this is pretty important to people in the United Kingdom because the government insurance will only cover certain procedures with chronic fatigue patients…) :

http://www.investinme.org//Article-358%20The%20MRC%20and%20Secret%20Files%20on%20ME.htm

in addition, let me warn you -- everyone associated with CFS/ME, the patients, the researchers, the clinicians, etc. all absolutely HATE the term, "Chronic Fatigue Syndrome". They have tried and tried and tried to eliminate the term, but in the United States the term still lingers. In some other areas of the world it is referred to as Myalgic Encephalitis. The only way that the name can change is via the press, scientific and otherwise. So if you guys keep using the term, "Chronic Fatigue Syndrome", and then everybody else will. Actually, to me - it's not a big deal. But it sure is for everybody else that is involved in this messy physical ailment.

Finally, I will leave you with this quote from Dr. Nancy Kilmas. Dr. Klimas is (was? – I think she just changed jobs…) a director of the Department of Immunology of the University of Miami School of Medicine and Director of Research for Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center.

…..But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it…..

thank you for taking the time to read this. As I said, I'm a fan. I'll still stay a fan. I've learned so much for your podcast!! The world needs more like it. Educating the public about science is just so important! Sometimes educating the science about the public, is necessary also amounts what I was hoping to do with this letter/email.

Regards,

Tim

Fort Collins, CO

PS> please excuse the potentially garbled nature of this document. Part of my symptoms, besides unrelenting fatigue and feeling like I have the flu all the time, is that I have basically no ability to hand write more type. Handwriting -- a couple sentences cause excruciating pain. The type and use the computer -- I use voice dictation. I've used voice dictation for over 15 years -- and I can tell you one thing -- got better but it still sucks. Either that or I just mumbled too much. Thanks again for your time and patience in getting through this document.

Jon writes:

I'm taking Vincent's call for a group drawing - so here is my "Alan Dove" =). This was drawn on a 21" wacom cintiq which is somewhat more accurate than the iPad =).

Ok now a word about beards - they are a pain to draw - so please give Rich my regards as the least facial-haired PHd on the show =). Seeing I am going to redraw Vincent and sketch Dick I'm looking forward to draw Rich (well, as he appears on the "about" page of the blog =) ).

(View it at http://www.twiv.tv/about)

 

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