Another retrovirus discovered at University of Alberta - Same controversy as XMRV

In the last year, there has been no shortage of controversy regarding the association of CFS with XMRV and related retroviruses.  For several years, Dr. Andrew Mason at the University of Alberta has been studying the association between Primary Biliary Sclerosis, and a Betaretrovirus bearing a close resemblance to Murine Mammary Tumor virus.  Much like the CFS studies, the research has been plagued by negative studies.  Like the study at Whittemore Peterson Institute, the virus was visualized using electron microscopy.  Like in CFS, negative studies have hampered the progress of research.

Taking on the negative studies

The negative studies - they've sufficed at discrediting good research over the last year - several researchers are finding it difficult to get their XMRV studies published.  Rather it seems who you are matters - the CDC, the Wessley group in Britain.  The time has come to put politics aside, and put the issue to rest for good.  There is a rule in science that in order for a confirmation study to be valid, it means copy exactly!!!

In order to do that, it would mean taking a modest amount of samples, using different methods in the same laboratory.  So if we have replica A using the method described by Mikovits et. al, B using the CDC method, C using the Wessely study, and only the first method shows positivity, then contamination can be ruled out.

Testimony From a patient

A patient which I will only identify by the name of Ms. X, has provided me with her account of living with CFS, and how as a desperate measure she finally found a doctor that would prescribe her antiretrovirals.  Ms. X is 36 years old, and has been living with CFS since age 24.  She was once a very active person - having completed the Boston Marathon one year before coming down with CFS.  It all started with flu like symptoms she states, but she never fully recover until...  By age 25, she would endure malaise on a daily basis - seeing specialist after specialist - two rheumatologists, a sleep specialist, cardiologist.  By age 28, she would struggle to work part-time.  At age 31, she was admitted to a psychiatric hospital after becoming suicidal as a result of doctors giving her the runaround.  It was at this time that she was diagnosed with CFS - and she began graded exercise therapy, which left her even more fatigued.

At the time the Mikovits et. al study came out, she had been unemployed for 3 years.  At this time, she began to travel around the country looking for a doctor that would prescribe her antiretrovirals - most doctors were extremely relucatant, until she found one in San Francisco that treated HIV patients early in the epidemic.  She was given a two drug combination - Isentress (Raltegravir), and Viread (Tenofovir).  Initially, she felt worse (Fever, chills, cough), and almost stopped taking the drugs, but after 21 days began a rapid and sustained improvement.  After 3 months, she no longer experienced any musculoskeletal pain, nor any post-exertional malaise, she would return to work full time by 4 months - and currently is capable of exercising 1 hour per day.  For her, the monthly cost of the combo treatment comes to a staggering $1500 a month - something she could not afford on her own, nor would any HMO or drug plan want anything to do with it - luckily for help from her family.

EBV and XMRV - a new disease model

An unpublished Spanish study reveals what could possibly unlock the mysteries of CFS.  EBV is a common herpesvirus that almost 95% of the population carries by adulthood according to the CDC, however it seldom produces disease.  In a percentage of the population it causes infectious mononucleosis, but afterwards remains dormant in immune system cells.  It brings the question - Could EBV or another herpesvirus be the key that unlocks the door for XMRV - quite possibly.  Once XMRV enters a cell, it could quite conceivably create an immune dysfunction that allows EBV to reactivate at a low level, fuelling a vicious cycle - through EBV producing a gene that downregulates APOBEC3, somewhat like the HIV vif protein does.

A new slant on XMRV

Looking at XMRV, and seeing the mention of low copy numbers, how could such a virus cause such nasty disturbances in the immune system.  As a scientist,  I have to take an analytical point of view - a protein called APOBEC3 has been shown to strongly inhibit retroviral replication.  APOBEC3 is however only expressed in certain cells - testicular germ cells most mature blood cells in particular.  However it is only expressed in low numbers, or not at all in peripheral tissues.  That probably explains why it is found in such low copy numbers in blood cells and seminal plasma.  However, that does not mean one should engage in unprotected sex with someone with Fibromyalgia or CFS, even though XMRV is present in low copy numbers, ***IT IS STILL INFECTIOUS***.  Tonsilar tissues have been shown to be particularly prone to infection by XMRV.

Rather than simply giving up, it means we have to look elsewhere.  By elsewhere means brain, nervous system, lymphatic tissues, bone marrow, tonsils, prostate, spleen, muscle.  However, it would not be practical or ethical to biopsy brain or nervous tissue - which leaves the two best choices - bone marrow biopsy which can be done in a doctor's office, and muscle biopsy (in particular from tender points of fibromyalgia patients).  Both can be done with a needle, with only slight discomfort.

I've returned

After a long hiatus, I'm back.  The last year has been rather uneventful for me - I've had opportunities to pursue research, but unfortunately with the turn of events, I found that I could not undertake research that was against my beliefs.  Science is fraught with politics, and they say the best scientists are those that are independent thinkers - Albert Einstein's theory of relativity was laughed at at first...  Same situation is happening with Judy Mikovits.  But meanwhile, I've taken on consulting work for a couple of biotech companies on contract.  But I am as passionate as ever about CFS and XMRV.

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.