hypothyroidism

As for the CROI papers – I usually prefer to discuss peer-reviewed
articles because you never hear about the faults in presentations. But
I'll have a look at them.

My apologies to everyone for not being as responsive as usual lately
in the discussions – teaching this semester is taking a big chunk out
of my time.

The Nijmegen group in the Netherlands, who carried out this latest XMRV-CFS study, are part of the Wessely School network.

Members of the Wessely School network include:

In the US: Bill Reeves of the CDC.
In the UK: Simon Wessely, Michael Sharpe, Anthony Cleare, Peter White, Anthony David.
In Australia: Lloyd, Hickie, etc.
In the Netherlands: the clinicians of the Nijmegen group.

Mighty suspicious that the two follow up studies, in the UK and in the Netherlands, were both performed under Wessely School network influence.

Notes on People:

Simon Wessely often works for UNUM (a large disability insurer, and an very suspect company that has actually given a “Hungry Vulture Award” to its “deserving employees”).
Peter White (a psychiatrist) is one of the Chief Medical Officers for Swiss Re.
Michael Sharpe, Simon Wessely and Anthony Cleare have also worked for Swiss Re.

Simon Wessely and Anthony David are trying to overturn the WHO formal classification of ME as a neurological disorder and to re-designate ME as a psychiatric condition.

Simon Wessely is a Corporate Officer of PRISMA. PRISMA is being paid many millions of pounds to supply “rehabilitation” programs (such as CBT and GET) to the UK's National Health Service for use on “CFS” patients.

Notes on Organizations:

The majority of CFS advocacy groups are not involved in legitimate or useful advocacy. This includes: in the US: The CFIDS Association of America; in the UK: Action for ME and the ME Association; in Australia: ME/Chronic Fatigue Syndrome Society of Victoria. Most of these groups have sold out to the highest bidder. These groups benefit, either in terms of funding, influence or in other ways, by following government policy, and by their association with corporate vested interests. These groups are not helping ANYONE, except themselves.

Sources:

http://www.hfme.org/whobenefitsfromcfs.htm
http://www.meactionuk.org.uk/Notes_o…ssue_in_…

Great blog!

http://scienceblogs.com/erv/2010/02/when_good_a…

I agree with several of your key points.

“After this, you don't know what to believe. “

“There's a lot of political and monetary shuffling going on behind the scenes here and abroad. It's a sick game of chess – and we're the pawns.”

Dr. R begins the Virology 101 series by stating that it's driven by ego. Everyone wants to be the first.

“As far as U.S. practitioners are concerned, Fukada-CFS is a wastebasket Dx, grounds for turning away some very sick people.”

There are a very few Infectious Disease docs that appreciate a subset of CFS as a probable immune disorder characterized by frequent and numerous co-infections. They are rare.

See the latest exchange between LA Jason and W Reeves (who on 2/14/10, was moved out of his position as Director of CFS efforts at the CDC): 'Evaluating the CDC's Empirical CFS Case Definition' – http://dps.sagepub.com/cgi/content/short/20/2/93

Shortly after Reeves' departure (2/18/10), the CDC created an XMRV page and posted a link to that page at the top of the latest findings column on the CDC's CFS page. Kind of makes you wonder what the CDC has been finding with its division of retrovirology's work on XMRV. I understand that those results may be due out soon.

Funny that Dr. Vernon would call out WPI for not sharing. The study she designed with Dr. Reeves went to Duke U., which didn't share theirs with anyone either. BTW, no one in Duke Infectious Disease will see anyone diagnosed with “CFS,” much like Emory. As far as U.S. practitioners are concerned, Fukada-CFS is a wastebasket Dx, grounds for turning away some very sick people.

Sadly, contrary to Dr. Vernon's point, what high-fallutin' agency any of these guys hail from is irrelevant (especially in the government). There's a lot of political and monetary shuffling going on behind the scenes here and abroad. It's a sick game of chess – and we're the pawns.

Even if Klimas and Peterson helped write the Canadian ME/CFS Consensus criteria, it's the best one to rule in by neuroimmune findings and rule out other psychiatric disorders to select patients. WPI can share their primers with everyone. As long as others are using B.S. definitions, this will be tit-for-tat. Ideally, yes, we should be sharing samples. I wouldn't share any with Wessley's U.K. group without a 24-hour watch by U.S. troops; the psychosomatic folks have too much at stake to do good science, which is becoming a rarity all-around anyway.

“Until methods are standardized and the scientific community is provided information about the specific characteristics of the CFS subjects (and controls) who tested positive in the Science paper, be prepared to read more negative studies. Hopefully the Science investigators will make this information available before interest in XMRV being associated with CFS fades and becomes yet another foiled attempt at solving CFS. Achieving scientific consensus on the role of XMRV in CFS certainly warrants more research and greater collaboration, as do so many other important discoveries being made.”

In a very short time, Dr. Vernon, formerly of the CDC, has made significant strides towards creating a unique collaborative and coordianted effort across a range of scientist to more fully illuminate processes underlying CFS. See her “Association Research Program Update” from 2/18/10 at: http://www.cfids.org/webinar/series2010.asp

I have not always been a fan of the CFIDS Assoc. but Dr. Vernon has been a significant factor in turning me into a supporter.

I am a 'CFS' patient being seen by one of the top CFS/Infectious Disease docs in the country who is presently working with Dr. Goff to investigate these questions. I have found that Virology Blog is by far the most thorough and balanced source of virology info on the web (I know in some corners that's setting the bar pretty low but this is good stuff – right now I am working my way through Virology 101). I'm learning a lot and there is a lot to learn, especially for those of us coming to this from a patient's perspective (without a strong background in virology).

I'm really looking forward to next week's TWiV conversation with Dr. Goff.

Hang in there.

Your reference to findings by the Japanese have not been published nor has the WPI, the Cleveland Clinic or the NCI published any further findings specific to XMRV in CFS.

When such findings are published in a scientific journal I'm sure they will be noted here and elsewhere.

I recommend reading all the posts on this blog regarding XMRV. There is much to be learned.

http://www.retroconference.org/2010/data/files/…

All the XMRV stuff is Friday. Dr. Goff's plenary talk 'Mouse to Man' is first thing. He starts with a really clear description of what he has learned about XMRV over the last 35 years. He also talks about some clear differences in detection using different receptors as well and provides a list of possible reasons for the discordant findings and his take on each at the present.

Also found at: http://app2.capitalreach.com/esp1204/servlet/tc…

Later (at 9:30) there are a few additional presentations on XMRV. One that I found interesting was Dr. Hackett from Abbott (last speaker in this session -it takes a while to load the video and slides but is well worth it).

He talks about the macaque study and makes a few interesting points and raises a few questions.

Dr. Hackett presents data that raises questions about the prevalence of XMRV in the population – perhaps less than 0.1%. If that holds up it would be hugely good news for the blood supply.

He ends with a discussion of the challenges in detecting antibodies in XMRV and the need for amplification possibly due to issue such as viral life cycle, length of time between infection and disease, and possible impacts of XMRV itself on the ability of the immune system to mount a response.

Also found at: http://app2.capitalreach.com/esp1204/servlet/tc…

I'm really please to see that Dr. Goff so involved in getting at what is going on with XMRV. Clearly there is a lot to learn about this bug in humans.

This post was mentioned on Twitter by profvrr: XMRV not detected in Dutch chronic fatigue patients http://bit.ly/bWOF4B at virology blog…

+ 1

Also, John (above) is correct, use of the Oxford criteria has seriously confounded and hampered efforts to pin this thing down, much to the detriment of patients.

1. The statement that the samples from the Science paper came from the outbreak of CFS which occured in Incline Village in the mid-eighties is inaccurate. Dr. Mikovits has been quoted saying something to the effect of when the WPI started looking for virus, XMRV was found in the 'sickest of the sick', ie a cohort of patients that Dr. Peterson has been following for several decades and is either entirely comprised of or includes a significant number of those who became ill in the outbreak and many of whom have went on to develop gamma clonal T-cell rearrangements and b-cell lymphomas(1). Longitudinal samples taken from this group comprises Dr. Peterson's 'personal stash', and according to Dr. Mikovits it was in samples from these patients that the WPI researchers figured they had the best chance of finding something if indeed anything was to be found, and in fact it was in these samples that XMRV first started popping up.

However this was just a first initial study. When WPI researchers started the Science study, they took randomly selected samples from a different, larger sample cohort which is comprised of patients of Dr. Peterson's colleagues around the country.(2)

2. The 'Oxford criteria'. The study authors don't 'rule out' what has been one of the most critical factors in CFS research for the past several decades, they simply disregard it in a single sentence. The Oxford criteria has been the bane of CFS research since it's inception in 1991. It is only- not mainly, not mostly, but only used by psychiatrists and psychologists in the UK and the Netherlands who view CFS to be a primary psychiatric and/or behavorial disorder. Prevalence rates for 'CFS' using the Oxford criteria are in the neighborhood of 2.6% in the UK, with two seperate studies on prevalence rates in the US using the 1994 CDC or 'Fukuda' criteria found .24% and .42%, respectively(3). It doesn't take a mathemagician to see that the discrepancy between the two is between 6x-10x, which itself doesn't take a brainiac to see that something is very discordant between the two. However when you take out those with co-morbid psychiatric disorders from the Oxford prevalence rates, they drop down to .5%, which is very similar to the rates found using the Fukuda criteria. Basically the Oxford criteria have been a several decades long excuse for the above mentioned psychiatrists and psychologists to include patients with psychogenic fatigue states such as anxiety disorders, PTSD, depression, etc. in their studies which they purport to be on CFS, with other CFS researchers taking great care to exclude those with the above mentioned conditions from CFS studies.

3. As noted in the WPI's last press release(4), none of the XMRV negative studies have done what WPI considers to be a critically important step- culturing the samples. In that press release WPI notes that when they did not culture samples it was necessary to look at 4 different longitudinal samples taken from the same patient in order to find a sample that had enough virus to detect using PCR.

1. http://www.scivee.tv/node/7030

2. http://www.wpinstitute.org/research/research_bi…

3. http://www.iacfsme.org/IssueswithCDCEmpiricalCa…

4. http://www.wpinstitute.org/news/news_current.html