Time for the Big Talk, II. Expectations and consequences.

fresh_eyes

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Second, I think they need to be working on the change coming in the DSM... as I understand it, CFS is about to be changed to Mental Illness in the U.S. Is that right?
It's complicated, Teej, but I think it's safe to say that there's some possibility in that direction. You (and everybody) can read an excellent, clear explanation by Dr Yes, now in the first post of the DSM/WHO thread.
 

Ronan

Senior Member
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I tried sending a Private Message to hvs yesterday. I checked my sent PM folder but its empty so i was wondering if the PM's are working after the Forum upgrade? Anyone else having problems with them? I was suggesting that hvs might be interested in writing an article on this topic for my site as i think journalists will probably come across it when Googling XAND or XMRV so it might help to educating them on the real situation going on.
 

starryeyes

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It's complicated, Teej, but I think it's safe to say that there's some possibility in that direction. You (and everybody) can read an excellent, clear explanation by Dr Yes, now in the first post of the DSM/WHO thread.
That's great. :) I've been trying to follow it and it is really complicated. I bet they make it complicated on purpose huh?

Good idea Ronan and yeah, I lost a PM.
 
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Robin

Guest
I tried sending a Private Message to hvs yesterday. I checked my sent PM folder but its empty so i was wondering if the PM's are working after the Forum upgrade? Anyone else having problems with them? I was suggesting that hvs might be interested in writing an article on this topic for my site as i think journalists will probably come across it when Googling XAND or XMRV so it might help to educating them on the real situation going on.
Hi Ronan,

With this version of VBulliten, you have to check a little box to tell it to save your sent PMs.

I went to the Notification page and clicked on send new message then I scrolled down.

Under the body of the private message, you'll see a bunch of checkboxes. Make sure you check the on the one that specifies you to save the message in the sent items folder.



There might be a setting somewhere for this but that's beyond me. If you bring this up in the "Nuts And Bolts" forum, Kim and Cort can help you further. If you have any more technical questions that's the best place to post them.

Hope that helps!
 

Samuel

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I would not underestimate Annette Whittemore. She is not interested only in her daughter. She is interested in Neuroimmune Disease. This includes fibromyalgia, possibly autism -- the list goes on. She has my utmost respect, whether I myself turn out to have XAND or not.
This disease is not an ordinary cause. Few people who are personally affected are going to just help themselves. I think that most people who are reading this will agree that they, personally, will advocate for others (for example).

To me, Annette Whittemore has done everything right so far.
 

jspotila

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Jennie Jspotila --until midnight tonight still the Chair of the Board of the CAA -- may I suggest one last task? (I'm sorry - I know you are not well.) Might you consider doing whatever it takes to get an immediate board resolution to act on HVS's suggestions? There isn't much time. At least one replication study, Dr. Lloyd's Dubbo study, is due to report in January, according to Cort's "XMRV buzz."
Both the Association's Board and staff recognize the importance of a press strategy on XMRV replication studies. Some resources were reallocated to help with communications strategy in the short term. I agree that communications with the general public about XMRV replication studies, as well as communications with the CFS community, are very important and we are doing our best to get it right.
 
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mvwu

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Both the Association's Board and staff recognize the importance of a press strategy on XMRV replication studies. Some resources were reallocated to help with communications strategy in the short term. I agree that communications with the general public about XMRV replication studies, as well as communications with the CFS community, are very important and we are doing our best to get it right.
Thank you, Jennie. I'm glad the CAA is on this, and hope that the organization will use the guidelines proposed by hvs in putting together their response.
 

hvs

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...And away we go.
BBC headline proclaims recent claims for retrovirus behind CFS is false.
1. Lazy reporter fails to find out exactly who Wessley et al studied (i.e., it was probably the bogus Oxford Criteria population)
2. Lazy reporter fails to describe how Imperial College/Wessley findings were peer-reviewed; or, more, likely fails to inform reader that they have not returned from peer review at all
3. Story implies that 0% tested positive for xmrv which makes study itself suspect.
=
Doesn't matter: a big institution like BBC has now implicitly put stamp on xmrv is bogus story.

Time to swing into action, CAA. Write the BBC demanding answers for 1-3. Take preemptive action by contacting Denise Grady and others in the press. Take preemptive action by posting response on the front page of the CAA website questioning Imperial College/Wessley's subject population, questioning fi they used the same techniques as the WPI, questioning the peer review process, etc. etc. By explaining what's wrong with the Imperial College study and the BBC story, you can educate the press in advance of the CDC's inevitable failure to replicate.

Too many un-answered stories reporting [bogus] failed attempts to replicate and it won't matter when legitimate replication attempts come in based legitimate CFS populations: the public and the medical community will only remember these headlines.
 

hvs

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CAA: unless I'm reading the study wrong, it looks like there were no healthy controls! Were they even capable of finding xmrv at all?? It looks like a psychiatrist was in charge of defining the patients studied! And it looks like people with EBV or other herpes-family infections were excluded--what if xmrv needs these to operate!?
 
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mvwu

Guest
CAA, you are up to bat. Time for your home run.

It is time for your press release, CAA. (May I add -- if your response is wishy-washy it could do us more harm than good.)

This is a quickly pulled together study which can't be called a replication because the subjects studied, unlike the WPI subjects, did not meet the Canadian Consensus Criteria. There are also plenty of other reasons, duly noted in the thread "The Fight is On," why the conclusions drawn by the authors are questionable.

Go for it! Make us proud.
 
K

_Kim_

Guest
XMRV Negative Results Emphasize Need for Robust Replication Study
by Suzanne D. Vernon, PhD

A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from researchers at the Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention from the media and scientific community. The new report, published Jan. 6, 2010, in the open access online journal PLoS ONE, failed to detect XMRV in CFS, but should not be considered a valid attempt to replicate the findings described by Lombardi et al., in the Oct. 8, 2009 Science article.

The PLoS ONE paper by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely and Anthony Cleare is titled, Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. The investigators tested peripheral blood DNA from 186 routine clinic attendees who met 1994 (Fukuda) CFS case definition criteria and were well-characterized from participation in prior neuroendocrine and cognitive behavioral therapy studies. These 186 CFS patients were reported to be unwell for a median of four years with high levels of fatigue and disability.

This team of researchers used a special type of DNA xeroxing called nested polymerase chain reaction (PCR) reaction to amplify specific segments of the XMRV proviral DNA from the genomic DNA obtained from these 186 CFS subjects. In essence, they were looking to see if XMRV genetic material had integrated into human genetic material, which is a key characteristic of retroviral infection. The experiment included positive, negative and contamination controls, but did not test any samples taken from healthy subjects. The samples were coded so that the origin of the DNA was not known to the person conducting the PCR assays. XMRV was not detected in any of the 186 samples.

Can this study be considered comparable to the results published by Lombardi et al., in Science? In short, no. Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends. Here are some of the ways the PLoS ONE and Science methods differ:

  • The blood was collected from CFS patients in different types of blood collection tubes.
  • The genomic DNA was extracted and purified using different techniques.
  • The amount of genomic DNA included in the amplification assay was different.
  • Different primer sequences were used that amplified different regions of the XMRV proviral DNA.
  • The conditions of the PCR amplification assay were different from the numbers of cycles, to the type of polymerase used.
Should these differences affect an investigators ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not.
It very well could be true that XMRV is not present in the U.K. as Erlwein, et al. suggest in their discussion, but it is also possible that the technique used in the PLoS ONE paper was suboptimal due to the different methods employed, when compared to the original experiments conducted by Lombardi, et al.

The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K.
 
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mvwu

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Thank you, Dr. Vernon. A speedy, firm response was called for and speedy and firm is what you gave us.
 
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anne

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lock and load

Now THAT is more like it! Good for them for getting in the arena. Keep it up.
 

Dr. Yes

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From Dr. Vernon's statement...
"Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends."
Actually even that was not made entirely clear in their paper, as has been pointed out in the "Fight is On" thread; it may be that they were only using Fukuda selectively, for its psychiatric exclusions... This is a MAJOR question that the CAA and others have to confront Wessely with.

If it turns out that the UK group excluded patients on the basis of physical findings then - right there - they have lost this particular battle.
 

hvs

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If it turns out that the UK group excluded patients on the basis of physical findings then - right there - they have lost this particular battle.
I'm having a hard time giving the Wessely et al paper any other way, Dr. Yes. The audacity is almost too shocking to believe.
 

hvs

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Way to go, Dr. Vernon, Ms. McCleary and other CAA staff and members. Dr. Vernon's letter was a good rapid response. I hope that you all are chatting the ears off any and all members of the press tonight highlighting, as Dr. Vernon stated, why the Wessely et al paper just doesn't stack up.
Please do highlight the inappropriateness of their subject pool. It appears that those with ailments like herpes-family virus infections were excluded. It is definitely the case that the individual in charge of assessing their subjects, S. Wessely, is deeply distrusted by this community.
 
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anne

Guest
I think XMRV provides a perfect opportunity to begin talking about cohorts. Obviously it will be essential in these studies, but the fact of all the "science" coming from the UK and now the CDC on "CFS" people who aren't actually...you know...sick...is something we need to plant in doctors' minds. And we need to frame the issue for the next five SUPERAWESOME HASTILY DONE WE LOOKED FOR XMRV SO YOU DON'T HAVE TO studies.