XMRV Conference Recap, by Mindy Kitei

[Mindy Kitei]

Highlights from the conference.

Mindy Kitei
CFS Central
http://www.cfscentral.com

 

[julius]

Thanks. Just the stuff I wanted to hear about.

Just a note, in the section on Eric Klein, you mention another human RV, HTML, but I think you meant HTLV.

 

[pictureofhealth]

God, surreal moment. I was just starting to avidly read Mindy's new blog when an image of a toothy, smiling TV presenter/(?producer) Esther Rantzen from the UK glided into view as part of an 'accident helpline' advertisement on the site.
For all those who don't know, Esther Rantzen's daughter, who was wheel chair bound with ME, apparently recovered after doing the Lightning Process in the UK! Having called for more research into ME for years, Esther Rantzen now apparently is v much in favour of the LP technique as THE treatment for ME.
Talk about a contrast of issues on an identical topic on the same web page! Shocker.
Right - now back to Mindy's feedback!

 

[pictureofhealth]

Thank you v much for this detailed post Mindy.

I hope Dr Maureen Hanson will publish. How interesting to look at ME/CFS patients on the basis of how many upright hours a day they have. I wonder if this means sitting up, one way or another, or standing and walking around - as might be required at work, for eg.

Even though I can now spend many more hours sitting in a chair than 5 years ago, (I was much more supine then), it is still v uncomfortable to do so, I cannot stand for any extended period and am still far from well enough to being able to work. Walking around is almost impossible without painful consequences - even though technically it would count as upright.

I would be interested to see this positive study when published.

 

[julius]

I hope Dr Maureen Hanson will publish. How interesting to look at ME/CFS patients on the basis of how many upright hours a day they have. I wonder if this means sitting up, one way or another, or standing and walking around - as might be required at work, for eg.

Plus they looked at three groups; sick, healthy and recovered. That should be an interesting result.

 

[Lesley]

I believe the results Dr. Hanson reported were preliminary results, so they may not be published. She has a bigger study funded by the NIH that is discussed on this thread: http://www.forums.aboutmecfs.org/showthread.php?5977-The-Hanson-(Bell-)-XMRV-Study&highlight=hanson+xmrv

I also recall Dr. Bell stating recently that his patients who said they were recovered were actually not functioning at 100%, but I can't find it now. Notice that the recovered patients have a somewhat lower activity level than the controls.

 

[illsince1977]

Thank you for this excellent coverage, Mindy. We haven't gotten it from anyone else.

I look forward to the poster coverage.

I posted a comment on your site, but in case you want to add another casualty to your stats, I've been sick for 33 years and am currently (and have been on and off since the beginning) bedbound.

You absolutely rocked in the Q&A!!! Go Mindy!!! :victory:

 

[Esther12]

I have to admit, I wanted more gossip!

Thanks for the write up though Mindy. Nice to hear Kerr was still helping with Mikovits (see - I just want the soap opera stuff). Sounds like it's all still rather confused.

Does anyone know why the 'British situation' was referenced at the start of the Q&A? Had there been much discussion of CFS politics, rather than just virology? Whatever happens with XMRV, it would be great to get some bright researchers looking at the way CFS has been treated so far, and hopefully wanting to lend a hand to improve things.

 

[urbantravels]

Thanks so much for the recap, Mindy.

It seemed pretty clear to me, from context, that there had been discussion before the cameras were switched on for the Q&A about what subjects would or would not be "off limits" for the Q&A. Several people said "well, I know this is getting into policy but..." which indicated to me that policy/politics were supposed to be off limits. There may well have been a knock-down/drag-out at some earlier point between perhaps...some British researchers and some American researchers??

 

[jenbooks]

Thank you so much, Mindy.

 

[*GG*]

What is up this:

"Dr. Brigitte Huber of Tufts University focused on contamination as the cause of XMRV positive samples. Veteran CFS physician Dr. Susan Levine supplied the 111 patients, all of whom met the Fukuda CFS definition; 25 percent were severely disabled. Only one of the 111 patients—less than 1 percent—proved positive.


Last fall, Huber collected new blood: three CFS samples and 36 healthy controls. Using nested gag PCR, two out of the three CFS patients and 17 of the 36 controls were positive. Twelve samples were negative. Mouse DNA probes detected mouse DNA in those 17 positive samples from CFS patients, and Huber called the correlation “shocking.” Her conclusion was that a common lab reagent is contaminated with mouse DNA. Most of her samples contained several MLVs. Her lecture drew criticism from several members of the audience. One outspoken critic shouted to Huber that heparin tubes were a “nightmare. Why are you still using it?” The heparin naysayers used EDTA tubes instead."

Not sure if I have heard of this study?! Isn't she from the same school as Dr. John Coffin?

"Her conclusion was that a common lab reagent is contaminated with mouse DNA." Are all of the reagents supplied by medical/research firms? Or are some of them from in-house? I am not familiar with these techniques, but perhaps their DI water was contaminated? Perhaps she has rodents in her lab? She should call a pest control company, or have Tufts University call!

If all the supplies are from Companies, she is not speaking very well of the Companies?! I know that Lab Materials are very expensive! So I would think that you rarely get a bad product, and on that kind of scale! Were they from different Lot #s? Sounds like sloppy science to me!!

I mean I would not let out how poorly your Healthy Controls came out just about as positive as ME/CFIDS/CFS patients!

If I understand this. So she had 17 of the 36 controls test positive? This would mean that about half (50%) of her "healthy" controls/general population has this Virus! Something doesn't add up here!

Or the General Population should be very afraid!!

 

[anciendaze]

... Her conclusion was that a common lab reagent is contaminated with mouse DNA. Most of her samples contained several MLVs. Her lecture drew criticism from several members of the audience. One outspoken critic shouted to Huber that heparin tubes were a nightmare. Why are you still using it? The heparin naysayers used EDTA tubes instead."

Not sure if I have heard of this study?! Isn't she from the same school as Dr. John Coffin?...

Yes, she is from Tufts. Dr. Coffin divides his time between Tufts and the NIH.

The problem is mentioned in Dr. Cheney's notes on the conference. Heparin is used to coat surfaces of test tubes to prevent coagulation from causing important elements of blood to bind to surfaces, where they would be unavailable for analysis. EDTA is an alternative anticoagulent which may cause problems if you are looking for ions. As far as I know, ions are not important in tests for XMRV.

Heparin is typically derived from tissues of animals slaughtered for meat. At present, most pharmaceutical heparin comes from China, and there appears to be a contamination problem. If you are using heparin, you need to check for contamination before you use it in research where this will matter. There have been repeated issues with other contamination in heparin from China in the past. If the contamination includes MLV, we could be looking at a significant source of continuing infection, because heparin is widely used in hospitals, and tests for this virus may not have been done in the past.

Test tubes with heparin, "green tops", were in use way back in research on CFS/ME. Elaine DeFreitas was using them in her work at Wistar. She was, however, very particular about the suppliers of her reagents, and ran special assays to distinguish results due to contamination.

If the results correlate with the source of the sample, and not the source of the heparin, you should not assume all positive samples are due to contamination. You should repeat the work. Huber's work shows a correlation with patients, though the evidence of contamination makes conclusions suspect. I'm hoping she has not been so badly burned by this episode that she will leave the field.

 

[SOC]

I hope Dr Maureen Hanson will publish. How interesting to look at ME/CFS patients on the basis of how many upright hours a day they have. I wonder if this means sitting up, one way or another, or standing and walking around - as might be required at work, for eg.

Even though I can now spend many more hours sitting in a chair than 5 years ago, (I was much more supine then), it is still v uncomfortable to do so, I cannot stand for any extended period and am still far from well enough to being able to work. Walking around is almost impossible without painful consequences - even though technically it would count as upright.

I would be interested to see this positive study when published.

This "upright" thing reminds me of Dr Lerner's scale. I wonder if its some kind of standard or semi-standard measure of disability.

What I figured out after becoming Dr Lerner's patient is that "in a chair" means in an upright chair such as working at a desk or a computer. Reclined in a recliner or on a couch does not count as "in a chair". My mind translated it as "upright", so I was interested to hear Dr Hanson makes that distinction.

I was out of bed perhaps 12-14 hours a day the first 6 months of this year, but there was no way I was capable of sitting in an upright chair and working. I had 2-3 hours "upright" which was made up of 1-2 hours of tutoring, getting dressed, minimal walking around the house, and sitting at the table for dinner. If I tutored 2 hours one day, I couldn't easily sit at the dinner table for dinner the same day. Well, I could, but I felt too tired to eat, couldn't carry on a coherent conversation, and felt lousy when I was done. The rest of the time I was reclined in a recliner where I listened to books, crocheted, surfed the net, and watched TV. Boring as h***, but that was all I could handle without getting worse and/or being miserable.