July 1, 2010


ME + me :  XMRV blues - part 2


I am still not well at all etc. as before and it is early afternoon as I am writing this, and it is also heating up here in Amsterdam, with tropical temperatures promised tomorrow.

But there is some XMRV news, that reached me by special correspondence (from the English giantess, rumoured to be 6 feet 5 and very smart nevertheless):

The negative CDC study has been published, albeit it in a provisional form and a provisional PDF and even a provisional abstract. Here is a link, and the abstract follows below:

The link is to the Retrovirology journal, where you can find both - at least now and presumably today - the provisional pdf and the provisional abstract, which follows:

Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States

William M Switzer, Hongwei Jia, Oliver Hohn, HaoQiang Zheng, Shaohua Tang, Anupama Shankar, Norbert Bannert, Graham Simmons, R Michael Hendry, Virginia R Falkenberg, William C Reeves and Walid Heneine

Retrovirology 2010, 7:57doi:10.1186/1742-4690-7-57
Published:      1 July 2010
Abstract (provisional)


XMRV, a xenotropic murine leukemia virus (MuLV)-related virus, was recently identified by PCR testing in 67% of persons with chronic fatigue syndrome (CFS) and in 3.7% of healthy persons from the United States. To investigate the association of XMRV with CFS we tested blood specimens from 51 persons with CFS and 56 healthy persons from the US for evidence of XMRV infection by using serologic and molecular assays. Blinded PCR and serologic testing were performed at the US Centers for Disease Control and Prevention (CDC) and at two additional laboratories.

Archived blood specimens were tested from persons with CFS defined by the revised 1994 CDC case definition and matched healthy controls from Wichita, Kansas and metropolitan, urban, and rural Georgia populations. Serologic testing at CDC utilized a Western blot (WB) assay that showed excellent sensitivity to MuLV and XMRV polyclonal or monoclonal antibodies, and no reactivity on sera from 121 US blood donors or 26 HTLV-and HIV-infected sera. Plasma from 51 CFS cases and plasma from 53 controls were all WB negative. Additional blinded screening of the 51 cases and 53 controls at the Robert Koch Institute using an ELISA employing recombinant Gag and Env XMRV proteins identified weak seroreactivity in one CFS case and a healthy control, which was not confirmed by immunofluorescence. PCR testing at CDC employed a gag and a pol nested PCR assay with a detection threshold of 10 copies in 1 ug of human DNA. DNA specimens from 50 CFS patients and 56 controls and 41 US blood donors were all PCR-negative. Blinded testing by a second nested gag PCR assay at the Blood Systems Research Institute was also negative for DNA specimens from the 50 CFS cases and 56 controls.

We did not find any evidence of infection with XMRV in our U.S. study population of CFS patients or healthy controls by using multiple molecular and serologic assays. These data do not support an association of XMRV with CFS.

It's good that it has been published now, at least provisionally, for it is not good that the progress of science is hemmed by or dependent on government approval and it is good to see evidence and argument.

From the abstract, it seems quite clear it is - to speak both fairly and honestly - the same old CDC-rot. For consider:

Once more the usual problems with CDC, KCL and Radboud pseudo-science abound:

co-author: "William C Reeves"

Dr. Reeves has consistently tried to rubbish real scientific research into ME/CFS;
was involved in major corruption in and around the CDC in relation with ME/CFS; was recently reassigned to another CDC-function, but still is involved with ME/CFS; and has quite a few quite personal axes to grind, as his head is quite clearly on the block of major class actions by patients with ME if the XMRV-connection to ME/CFS is confirmed.

cohort and method: "Archived blood specimens were tested from persons with CFS defined by the revised 1994 CDC case definition"

As it happens, and as Dr. Reeves very well knows, that is a lousy, useless and warped
definition, which virtually guarantees that most patients investigated did not have ME/CFS, but some form of fatigue that does not satisfy the Canadian Criterions for ME/CFS, that are sensible and scientific, and found below in a link, and here in a non-technical very clear explanation of that set of criterions: Canadian Criterions Overview

biochemistry: "using multiple molecular and serologic assays."

Golly. The real points are, of course: (1) where they the same techniques as the WPI and/or the FDA/HIH studies used and (2) was the group of patients investigated a group of patients with ME/CFS according to the Canadian Criterions

The CDC-"scientists" - I think is a fair use of scare-quotes - did  learn a teeny weeny little bit about proper scientific reporting, God knows from my scathing review of Wessely & McClure here: ME: On the postmodern falsifications in Wessely & McClures BMJ-editorial for they write at the end of their abstract in conclusion

- "These data do not support an association of XMRV with CFS."

which is true or "true" as far as it goes - but then it doesn't go far, as there are - at least - the above problems, that are very serious, and make it likely that this is once more fraudulent pseudo-science rather than real science, for the reasons given.

So this is not at all convincing to me, and looks very much like politicking and trying to fault the association of XMRV with ME.

Am I disappointed? Not at all, for this seems to be just more of the usual rot - which in this case very probably will not succeed in killing research into XMRV, for as I explained in Nederlog yesterday, as I see it the presence or absence of a cause for or correlation with ME/CFS in XMRV is not the real problem for the US government:  For them the problem is mostly:

Do we have the risk to pass on a new dangerous retrovirus with standard blood transfusions, wholly apart from ME/CFS.

For the point is that there is a new human retrovirus viz XMRV; that retrovirus does seem to be at least mildly contagious; that retrovirus does seem to be transmitted (also) by blood transfusions; that retrovirus is associated, both in fact and in principle, with quite a number of dangerous diseases; and therefore there is a real XMRV-problem for the US-government:

Are the current blood transfusions safe; are they infected, and if so to what extent; how dangerous is this for the US-population (everyone may end up in hospital and need a blood transfusion); and what to do about this.

One problem here that I see is that very much of health-policy in the US is in fact concluded behind the scenes by senators and representatives who are mostly bought and at least worked by 10 lobbyists per elected people's representative - but then again that may work out well, for the given reason:

Big pharma in the US WILL be very interested if there is major money available for safe-guarding blood transfusions, and such money should be made available, real soon also, if XMRV does get or has gotten into the normal supplies of blood for transfusions: Neither the US government nor health bureaucrats can afford to be responsible for allowing blood transfusions to be infected with a known human retrovirus and its many dangers, both known and unknown.

P.S. This is where it stands at 16.00 in the afternoon after a slight editing (removed some typos and the notes to yesterday's Nederlog; added some bold, red and breaks) of the version of 5 hours ago. There is considerably more on the internet, but the above seems to me to be quite sensible - and indeed now is the time for responsible politicians and civil servants to take steps that the above XMRV-problem gets dissolved fast and for good journalists to remind them of the relevant facts and risks.

There may be more later; there may be not, and if not, the following gives the reason:

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all, and it seems a heath-wave is coming, which is the type of weather I can't handle well. I don't know yet, but if there is no Nederlog, now you know the reason.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)
9. SleepyDust (patient) M.E. / Chronic Fatigue Syndrome (video)
10. Laurel (patient) Laurel's October 2009 CFS/CFSAC Testimony (video)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. SleepyDust explains what life with ME/CFS is like for patients
10. Laurel explains what life with severe ME/CFS is like for patients

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

Maarten Maartensz

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