Whittemore Peterson Institute Releases Official Statement on UK Study

The Whittemore Peterson Institute has released an official statement regarding the recent UK XMRV study.  The position of the institute is that it basically discredits the validity of the study in whole, stating it does not even qualify as a replication study.  The Whittemore Peterson Institute states that they are actively collaborating with other research groups around the world, and as well Judy Mikovits stated in a New Zealand Herald article that blood their group tested from the UK showed very similar percentages of XMRV infection in London patients as in their published study!  Much like when Robert Gallo and Luc Montaigner discovered the HIV virus, other groups initially disputed their findings because they did not use the exact same methodology in their replication studies!

UK Study a Sheer Disappointment - Credibility of Replication Study Questionable

It has come to my attention, and I have read the research article "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome" in the publication PLOS one.  I have studied the facts behind the research, which I find rather unremarkable at first glance.  However it has come to my attention from Dr. Suzanne Vernon's analysis that different primers were used, collection methods varied from the Whittemore-Peterson study, different methods were used to purify genomic DNA and amounts differed, and PCR amplification methods were different.  The fact that a different polymerase was used could skew the results altogether, fouling the results - the golden rule in replication studies is copy exactly!!!  What I did find remarkable however, is who is behind the research - noting the psychiatric connection: Institute of Psychiatry, King's College London - and none other than Simon Wessely - Britain's own version of Dr. Reeves - which pours some cold water on the credibility of this study - statements issued by Wessely stating his opinion before the experiment was done, and the speed in which it was done indicates it was not a good quality study.  Before any conclusions can be reached, I would like to see the results of the ongoing study by Dr. Kerr, which in my opinion should bear a significant amount of credibility, as should the Swedish study by Dr. Jonas Blomberg.

I would hope that the Whittemore Peterson Institute will retest the samples in this study, and establish whether or not experiment protocol was followed - meanwhile it's a waiting game for results of other studies.  Hopefully ME/CFS patients will not be forced to hear that neuropsychiatric psychobabble much longer - and the only way the truth behind ME/CFS will be known is through generously funded, high-quality studies.

News on Important New Studies Underway

Since the initial findings of the link between XMRV and ME/CFS became public in October, a flurry of new research has ensued.  The study at the top of the list is currently underway at Uppsala University to try and replicate the findings of the Whitemore Peterson Institute in Swedish patients.  The study is very well organized, however it's findings could be a mixed blessing: XMRV findings may be different in European cohorts, meaning that other closely related retroviruses might be discovered if new studies are pursued.  Dr. Jonas Blomberg's real-time PCR assay might just be what is required to find these viruses.

Another study is currently underway to determine the atomic structure of XMRV protease at one center.  This study was initiated after a link was made to XMRV in certain prostate cancer cell lines.  Crystals of the protein have been grown, however this is only a first step: heavy metal derivatives must be produced, and crystals must be found that will diffract to a sufficient resolution to obtain useful data for drug development - a process that is still months away.

Another study is currently getting underway at Cornell University that will seek to determine retroviral diversity in ME/CFS patients, and try and correlate the findings with functional status in CFS patients.  The project is being done in collaboration with the Whitemore-Peterson Institute and the Columbia University Center for Infection and Immunity.

Another study is getting underway at Instituto de Biologia Molecular en Medicina y Terapia Genica, Universidad de Guadalajara to determine if infecting peripheral monocyte cell lines in culture with XMRV alters the 2-5A synthethase/RNASE L pathway, and the resulting differential cytokine expression.  I don't understand spanish, so it would be appreciated if someone who does could dig up more information for me!

Fellow Britons Unite For The Truth!

It has come to my attention as of late that our government holds a file in the National Archives at Kew, which contains MRC documentation on ME since 1988.  The file was to be kept from the public eye until 2023, however this has been extended until 2071!  Normally, such measures are only enacted on matters of defence, national security, and in matters that are considered very confidential.  But what on earth would the medical research council want to keep from public view???  It comes from the same time as the UK's own version of Dr. Reeves - Simon Wessely began to propagandize ME as a psychiatric illness.  It would seem rather absurd to even cite patient confidentiality, as a black marker would make short work of maintaining patient confidentiality.

However, fellow Britons, you have options.  In THIS document, there is a LINK to request a review of the record under the Freedom of Information act, which requires the filling out of only a few fields.  If the National Archives does not provide a satisfactory response, then contact the parliamentary and health services ombudsman:

The Parliamentary and Health Service Ombudsman
Millbank Tower
Millbank
London, SW1P 4QP
Telephone: +44 (0) 84 5015 4033
Fax: +44 (0) 20 7217 4000
Email: phso.enquiries@ombudsman.org.uk

You may also want to contact:

Secretary of State for Justice and Lord Chancellor
Selborne House
54-60 Victoria Street
London SW1E 6WQ

Also, if the requested information is refused, an application may be made to the Information Commissioner, who has the power to order such disclosure, and if unsuccessful, the applicant may appeal the decision to an appeal tribunal - in many cases which have been successful the information has been provided with some redactions to protect confidentiality: The appeal tribunal consists of experienced barristers or solicitors which must provide a fair and independent review.  It is your right, and I strongly recommend that you exercise these rights!

Male CFS Patients May Have Option

In recent studies, it has been shown that DHT (dihydrotestosterone) increases XMRV replication rate threefold.  This is not surprising, considering that a number of prostate drugs target this very hormone.  Testosterone is metabolized to DHT, which is more powerful - but it is also implicated in pattern baldness, prostate problems, and excess body hair.  Some drugs such as Casodex and Flutamide will block DHT at its receptor, however they will result in impaired fertility, loss of libido, and feminization effects, as testosterone is necessary to mitigate the effects of estrogen.

On the other hand, blocking the conversion of Testosterone to DHT should result in a significant drop in viral replication rate.  There are 2 very safe drugs that I can think of that can attain this effect: Avodart (dutasteride), and Proscar (available as Propecia in a lower dosage form).  A threefold drop in viral replication rate could have a significant effect on symptoms of ME/CFS - It is my opinion that at a certain threshold, the immune system is capable of keeping XMRV in check, hence why XMRV is found in a small number of healthy controls.  I would like to see a clinical trial enrolling male patients to test this hypothesis.  The effects of these drugs have negligible effects on male fertility - treatment will only produce mild reductions in sperm count averaging 6%.  Serum testosterone increased considerably, which is necessary for muscle protein synthesis, regulating the hypothalamus-pituitary axis, and increasing mental and physical energy - all things ME/CFS, Fibromyalgia, and Gulf War Syndrome patients could stand to benefit from.

CDC Damage Control: ME/CFS Research Group Relieved of Duties

In a stunning move, responsibility for XMRV research has been taken away from the ME/CFS working group within the CDC, and re-assigned to the division of HIV/AIDS prevention.  This group will be in charge of replicating findings of the Whittemore-Peterson Institute, rather than the group under the control of Dr. Reeves.  The move is highly significant: it appears that the CDC is now acknowledging the serious nature of XMRV.

The CDC will be part of an interagency working group on XMRV, led by Dr. Jerry Holmberg.  A three-part study will be initiated:

1. The first part will consist of standardizing and validating laboratory methods and reagents for XMRV testing.  This stage will use samples provided by samples collected by Dr. Judy Mikovitz.  The intention is to create an FDA approved test.
2. The second part will test a much larger sample than the initial study, trying to determine the prevalence of XMRV in the general population, and the blood supply.
3. The third part will consist of how XMRV is transmitted, how it causes disease, and how it affects various subgroups of the population.

The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode.  The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise.  In my opinion, this turn of events should lead to balanced, common sense research.

Apricitabine May Be Effective Against XMRV

Apricitabine, an NRTI structurally related to lamivudine, may provide activity against XMRV Reverse transcriptase.  XMRV, like the drug resistant strain of HIV-1 contains the M184V substitution, explaining why it is succeptible to AZT and not 3TC (lamivudine).  The FDA has granted fast-track approval to the drug, meaning it should be available some time next year.  It appears to be extremely well tolerated, and was not associated with abnormal blood lipids, liver or kidney toxicity, or bone marrow suppression.