Dr. Hyde on XMRV

[Sing]

Cort's Metaphors

Cort, I really like your metaphorical language, like a "crap shoot"--how seeking treatment "is always a crap shoot with a lot of money on the table." And also, about Hyde, how he'd been "positioned to lead the field" but somehow lost his focus. (Not an exact quote) Isn't that what is happening now? It's become a horse race!

Extending your metaphors, how about this: Now we are on the sidelines, critiquing the runners, betting, cheering, anxious or excited--and this time we will be collecting some winnings.

Associating on, when I hear the metaphor of a horse race, I think of Laura Hillenbrand and Seabiscuit, of her being immobilized in a tiny apartment while dreaming repeatedly at night of being an Olympic athlete. I think of VERY SLOW and VERY FAST. Of her painstaking book which took years to write about a little race horse who slept all the time and refused to run, but who wound up the fastest race horse in history.

I wonder how Laura Hillenbrand is feeling about the XMRV news?

Cecelia

 

[gracenote]

Laura Hillenbrand

The New Yorker has an interview with Laura Hillenbrand from October 15.

The C.F.S. community is all abuzz. Ive never seen people this excited. And it is for good reason. As for myself, I am guardedly optimistic. Ive been around this block before. The findings are very preliminary and they do need to be replicated.

You can read the full interview here:

http://www.newyorker.com/online/blogs/backissues/2009/10/back-issues-laura-hillenbrand.html

 

[leelaplay]

The New Yorker has an interview with Laura Hillenbrand from October 15.

Hi gracenote. Good find thanks.

I added the link and info to the xmrv media links - no discussion so that it won't get lost.

islandfinn

 

[Sing]

Hillenbrand Oct 15

Thank you, Gracenote, for the link to Hillenbrand's interview, and thanks to Islandfinn for adding it to our library of links!

Wow, what a moving interview in The New Yorker, and the subject of her new book an Olympic runner who suffers an extraordinary ordeal--I think she is a brilliant woman who is managing heroically with a devastating degree of illness.

Cecelia

 

[Dx Revision Watch]

I just read at WPI Facebook that de Meir Leir is soon crossing Belgium and Sweden for 4 days of lectures on XMRV. I don't think he would need four lectures to say "this paper will wind up in the trash can" without any coherent argument, so it seems his remarks will be more interesting than some peoples'!

That's a wrap, almost, no? Who is left who hasn't sounded off or made some remarks at CFSAC? I can think of a couple from the bacterial side of things but I think they will stay quiet for now.

From: http://www.facebook.com/pages/Whittemore-Peterson-Institute


Byron Hyde: Missed Diagnoses
Meirleir: End of an Era of Medical Negation

Gteborg 10th November: Professional's Day
Gteborg 11th November: Public meeting http://www.rme.nu/node/85

Malm 12th November: Public Meeting http://www.skane.se/templates/Page.aspx?id=266536

and

The lectures of Byron Hyde and Kenny de Meirleir in Gteborg on Professionals Day, Nov. 10, will be videotaped and put on the internet. A DVD will also be available for purchase at Riksfreningen ME Gteborg (email: goteborg@rme.nu).
http://www.rme.nu/lokala-foreningar/rme-goteborg

--------------

The PDF of the November Hyde Gteborg presentation that Cort posted the extract from (Page 7 and 8), at the start of this thread, is here: http://www.nightingale.ca/documents/GoteborgConference.pdf

Suzy

 

[Wayne]

Hysterical ???

Hi Mike,

Funny, I didn't mean it to be funny!

Hi Weldman,

That's why it was so funny!!!! -- Thanks, I needed a good laugh!!

Wayne

ETA -- I'm simply amazed that some of you are able to contribute what you do. -- Thanks!

 

[Hysterical Woman]

Suzy - Link?

From: http://www.facebook.com/pages/Whittemore-Peterson-Institute




Suzy

Hi Suzy,

Couldn't get the above facebook link to work. Could you repost if possible?

Thanks!

Maxine

 

[Marylib]

For Maxine

I am not good at links, but if you are on facebook, just search for Whittemore Peterson Institute and you can "friend" it and see the posts.

 

[Hysterical Woman]

WPI Facebook Post

I am not good at links, but if you are on facebook, just search for Whittemore Peterson Institute and you can "friend" it and see the posts.

Hi Marylib,

Thanks for responding. I am a friend alread of the WPI, but I couldn't find this post of the site. Found quite a large number, but couldn't find that one, that's why I asked for the link. Maybe I am doing something wrong. Will try again later.

Thanks,

Maxine

 

[_Kim_]

Hi Marylib,

Thanks for responding. I am a friend alread of the WPI, but I couldn't find this post of the site. Found quite a large number, but couldn't find that one, that's why I asked for the link. Maybe I am doing something wrong. Will try again later.

Thanks,

Maxine

Hi Maxine,

Go to the WPI Facebook Wall and scroll down to the announcement made by Helle Rasmussen yesterday 11:47pm. She's got a bright pink flower (azalea maybe) as her avatar.

 

[Hysterical Woman]

Got it - thank you!

Maxine

 

[Dx Revision Watch]

Sorry folks for incorrect link. The WPI Facebook Wall should have been given as:

http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671?v=wall

Helle Rasmussen (Pink azalea avatar) has several posts on the Wall but had posted on Mon at 3:36pm about the availability of videos and DVDs for the Gteborg and Malm, Sweden, conferences - so you'll need to go back several pages of the Wall, now, to find that posting.

No position statement/response on the WPI XMRV findings has been issued yet by the chair of the 25% ME Group who recently announced that Byron Hyde has taken on the role of Patron and Medical Advisor to this UK group.

Suzy

 

[Sing]

English translation?

I find an article on XMRV in Swedish. Clicking on the English button at the top of the page, I don't get an English translation of this article but rather general information on The Swedish Institute for Infectious Diseases. It is certainly an impressive place. But if anyone knows how to get an English translation for the XMRV article, please let us know.

Thanks!

 

[_Kim_]

Google to the rescue

I find an article on XMRV in Swedish. Clicking on the English button at the top of the page, I don't get an English translation of this article but rather general information on The Swedish Institute for Infectious Diseases. It is certainly an impressive place. But if anyone knows how to get an English translation for the XMRV article, please let us know.

Thanks!

Hi Cecilia,

This week, I've been reading XMRV news in other languages. All I do is copy the URL into Google Translator, select the languages and it does a pretty good job of providing an English translation.

Hope this helps,
Kim

 

[Sing]

Thank you, Kim! Knew there had to be a tool but had no idea where to look. I want to copy that part of your message to go on the Resource Thread in case others also don't know they can do this.

Cecelia

 

[Kati]

I have read Dr Hyde's Sweeden dociument- and her eis what I think

He did indeed put a lot of emphasis on the financial aspect of health care, research and test copyright. He also said in the last 3 year there were 3 discoveries that were for sure the cause of ME. Personally I think he took a step back and looked at the whole picture.

I don't think he discredits Dr Mikovits or Peterson, I think he is just being careful about the discovery. As for the chance this study was contaminated, well I don't know the ins and outs of the testing happening in labs, I'd rather think WPI were careful and besides the testings were repeatedi n other labs.

That said I find his statistics most interesting. A high percentage of his patients have high contact with people in their occupation: teachers and health care workers. A lot of diseases were missed by their family doctors (diabetes, MI, brain abnormality, thyroid dysfunctions, rheumatologic conditions, etc) It shows the extreme importance to be tested till tere is nothing else to be tested. It also shows the importance of a doctor that listens to what you have to say, and spends time with you.

 

[Michael Dessin]

Dr Hyde on XMRV and more at the Sweden ME conference

http://www.nightingale.ca/documents/GoteborgConference.pdf

 

[Sing]

Thank you, Mike. I appreciate Dr. Hyde's clarity and extensive knowledge. I wish I had a good doctor like him, to direct my testing. The cost and complications of going there as an US citizen with insurance only in VT seem too difficult. And even with his direction, a lot is still unknown and unfixable, so I haven't pursued this avenue.

Maybe XMRV research will turn out to be a key and a way to get help.

Cecelia

 

[Michael Dessin]

Hyde

Weldman! Your sooo funny...you make me laugh!! Thanks!
You have great points to a lot of conversation as well.

One thing I do know, it freaks me out when Hyde discusses ME.

His definition and the way he describes it, is exactly what I've been through.

I have also sustained a large amount of damage to my ganglia and spinal cord, areas Hyde mentions are most effected by this illness.

I actually just got those areas treated today.

Politics aside...Hyde knows this disease extremely well.

Mike