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- Previously there were two main groups of retroviruses known to infect humans – HIV, causing AIDS; and human T-cell leukemia virus (HTLV – various types). AIDS can be associated with frank neuropathies and pain. HTLV infections “is endemic in the Caribbean, Japan, South America, and parts of Africa” ref here. Disease may be asymptomatic with” fewer than 5% of those infected develop related disease” (ref here ). Bronchitis and bladder infections are more common, however. (ref here)
- What is most interesting however is that the previously known Retrovirus HTLV – I is associated with a 37% Fibromyalgia rate ( vs 12.9% of “controls”):
Higher prevalence of fibromyalgia in patients infected with human T cell lymphotropic virus type I.
Boris A Cruz, Bernadete Catalan-Soares, and Fernando Proietti
The Journal of Rheumatology November 1, 2006 vol. 33 no. 11 2300-2303
- Now a third Retrovirus has been found highly associated with Chronic fatigue, Fibromyalgia, and atypical MS
- October 8, 2009 – Whittemore Peterson Institute in Nevada publish undisputable evidence of Xenotropic Murine Leukaemia Virus (XMLV) infection in Chronic fatigue, and furthering their research have found it in over 95% of Fibromyalgia and atypical MS as well
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost, Kathryn S. Hagen,1 Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman, Judy A. Mikovits;
Science Oct 8, 2009; p1-4 abstract here
Although initially they were able to tissue culture grow the virus in 65% cases, improving their technique with antibody tests, they ascertained over 95% of cases of Chronic fatigue, Fibromyalgia, and atypical MS were infected. Only 3.7% of the normal population grew it. They reported these findings at their web site Here
Addendum: British study unable to find XMLV in their population:
PLoS One. 2010 Jan 6;5(1):e8519.
Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.
Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A.
However, the Whittemore Peterson Institute contend that it would not be possible to isolate the virus using the dumbed down techniques used in the British study:
http://www.wpinstitute.org/news/news_current.html – read “February 18, 2010: WPI is aware of the recent UK study that was unable to detect the presence of XMRV in any CFS patient samples” rebuttal
They also wonder about the geographical isolative idea when Japanese have found it in 1.7% of health donors.
- Xenotropic Murine Leukaemia Virus (XMLV) has been known to cause chronic infection in humans before – they can be seen in 23% of aggressive prostate cancers (vs. 6% of cases with Benign Prostatic Hypertrophy)
XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors
Robert Schlaberga,1, Daniel J. Choeb, Kristy R. Browna, Harshwardhan M. Thakerb, and Ila R. Singha,b,2
PNAS Early Edition September 8, 2009 free online here
- Virus particle imaged in prostate cancer tissue.]
However, a German study found NO Increase of XMLV or “Xenotropic Murine Leukemia Virus-Related Virus (XMRV)” .
Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients
Retrovirology 2009, 6:92 October 16, 2009
Oliver Hohn, 2*Hans Krause, 1Pia Barbarotto, 1Lars Niederstadt, 1,3Nadine Beimforde
4Joachim Denner, 2Kurt Miller, 1Reinhard Kurth and Norbert Bannert free full here
Having said that, a previous california study found virus in 40% of certain prostate cancers:
PLoS Pathog. 2006 Mar;2(3):e25. Epub 2006 Mar 31.
Identification of a novel Gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant. Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL abstract free article
Makes it more clear why it has taken so long to find the association – testing techniques mean everything…or infections are geographical. Having said that, it has been now concluded that 25% of cancers might be virally related:
The USA prostate cancer link was seen in cases with a genetic defect of RNASE – an enzyme that will digest the genetic material of RNA viruses so they are destroyed:
Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant. PLoS Pathog 2(3): e25. free article here
This defect was found to exist in chronic fatigue cases as well because the cell inadvertantly digests it – leaving cleaved material that is felt to be a valid maker of chronic fatigue.
Expert Opinion on Therapeutic Targets
March 2008, Vol. 12, No. 3, Pages 281-289; Intracellular immune dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: state of the art and therapeutic implications
Jo Nijs PhD & Marc Frémont PhD abstract here
” From the scientific literature it is concluded that proteolytic cleavage of the native RNase L enzyme is characteristic of the dysregulation of intracellular immunity in people with ME/CFS, but the origin of the dysregulation is speculative. There is increasing evidence for immune cell apoptosis and upregulation of various aspects of the 2′-5′ oligoadenylate (2-5A) synthetase/RNase L pathway in ME/CFS.”
The Utah group went after the HMLV in chronic fatigue because of this shared immune deficit with certain prostate cancers.
Now it also appears this virus is connected to Autism as well in “significant numbers” and although autism involves genetic defects, the condition might as well be triggered by immune activating events like the MMR vaccine given at 18 months – something suspected for some time. I have one patient who was never the same after a hepatitis B injection and one wonders if people with Chronic fatigue/ fibromyalgia / autism have to be very careful with that vaccine..
Hear about this possible link here at YouTube
Read View at Canadian Autism Foundation here
- This virus also related to certain Lymphoma cases
- This is a Retrovirus – not same family as HIV, but the same class.
- It lives in B and T cell lymphocytes white blood cells. It is quickly activated by elevated cortisol levels seen in stress. Inflammatory cytokine events like colds, certain vaccine and so on activate it by making more “food” – ie. more lymphocytes for them to live in.
- although called murine, was originally seen in rodents
- Not only is it activated by high cortisol, it is testosterone activated – a finding making me re-think giving androgens to patient with widespread pain and low testosterone – even though they seem to benefit… Another issue is that of DHEA hormone supplement – it does help mood in those with low levels, but it also can increase testosterone and in one case of advanced prostate cancer quickened his demise.
- The prevalence of Fibromyalgia is 1.36 % (as per here) and 3.7% of the “normal” population are infected. For chronic fatigue, the prevalence is 0.22% (men and women averaged) –source here- .Has been suggested rates of chronic fatigue could be 5-10 times that rate. However, this earlier figure gives and infection rate of 5.3% – about 1/20.
- With 5.3% population infected and only 1.58% sick, this means 70% of people are NOT sick with it.
What Determines who is sick?
One study looked at people who were high risk:
Arthritis & Rheumatism; Volume 56, Issue 1, Pages 360-371, 2007; Moderation of psychosocial risk factors through dysfunction of the hypothalamic-pituitary-adrenal stress axis in the onset of chronic widespread musculoskeletal pain : Findings of a population-based prospective cohort study J. McBeth et al abstract here free article here
before ill risks were:
– illness behaviours -went to doctor more (in another study they could have called that a health behaviour – go figure)
– missed more work because sick
– various body complaints like irritable bowel etc.
– body awareness – very aware of changes to body, getting bumped etc.
Over 18 months, those that developed widespread pain much more likely to have:
– higher evidence of depression risk – a abnormal cortisone suppression test seen in people vulnerable to chemical depression
– evidence of a highly stressed cortisone system – high AM and PM cortisols – Here goes the viral activation by cortisone part
those with both those abnormalities were 8 times more likely to develop widespread pain
They mention how much they think it is genetic, but do mention how early life traumatic experiences might create a rev’ed up cortisone HPA axis. Obviously a time of high stress and depressing times could generate this picture as well. I have my own view:
Factors then would include:
– anxiety and depressive risk
– genetics tendencies re above
– life experiences generating above
– highly stressed life – about half of FM sufferers can remember an incident were it overcame them – a car accident, ill health, divorce, death of a loved one and so on.
Their view is a little different – adapted from such ( I put up down on cortisol):
OK but what can make that better? – restorative (refreshed in AM)sleep
Restorative sleep predicts the resolution of chronic widespread pain: results from the EPIFUND study
K. A. Davies,1 G. J. Macfarlane,2 B. I. Nicholl,1 C. Dickens,3 R. Morriss,4 D. Ray,5 and J. McBeth1
Rheumatology (Oxford). 2008 December; 47(12): 1809–1813. abstract free full article
- 679 cases of Chronic Widespread Pain Followed 15 months;
- 300 (44%) no longer widespread (majority still some regional) – hey, you can get some better!
Who got better?
Those that were initially:
less psychological distress
Afterwards, those who had better restorative sleep were much more likely to recover – trick is how does one get that deep sleep that stimulates your growth hormone surges at night that aids repair… that’s the ticket; sodium oxybate might but it is a date rape drug, highly regulated, and costs about $500/month to use.
Ok, Lets look at the infection angle – what can help that?
Much of it involves good clean living:
- adequate sleep
- Obese subjects are more prone to infections:
Eur J Clin Nutr. 2002 Aug;56 Suppl 3:S42-5. Obesity and immunocompetence. Lamas O, Marti A, Martínez JA. free article here
Obese subjects are 2.5 times more prone to fatal prostate cancer
American Journal of Epidemiology Vol. 120, No. 2: 244-250
DIET, OBESITY, AND RISK OF FATAL PROSTATE CANCER
DAVID A. SNOWDON2, RONALD L. PHILLIPS and WARREN CHOI abstract here
- optimism -love to live
- be calm – take yoga, meditation, take time to listen to sounds of the ocean tapes, take Tai Chi – all of these has been found to make a difference.
- Get any depression treated – a whole blog note in itself
- don’t drink much alcohol
- Take vitamins (men should avoid iron containing vitamins; smokers avoid B carotene)
- Don’t smoke – smokers are more likely to get abnormal paps from another virus – the wart virus that causes cervical cancer
- Drink green tea – one found the contents of 12 cups/ day had anticancer properties but that might be a bit much…
- Exercise boost immunity – see prostate cancer regimen below
Live a careful life if you have a history of pain or depression in the family – go to work before the AM rush if you drive so less likely to get hit for instance. Save your money – living from visa bill to visa bill is a high stress.
One study of prostate cancer (also a possible XMLV infection) found certain measures made rapid and significant gene regulation changes (upregulating good genes and downregulating bad ones):
Proc Natl Acad Sci U S A. 2008 Jun 17;105(24):8369-74. Epub 2008 Jun 16. Changes in prostate gene expression in men undergoing an intensive nutrition and lifestyle intervention. Ornish D, Magbanua MJ, Weidner G, Weinberg V, Kemp C, Green C, Mattie MD, Marlin R, Simko J, Shinohara K, Haqq CM, Carroll PR. abstract full free article
- 30 participants with early prostate cancer refusing any active intervention
- mediterranean diet – low meat, low fat, high vegetable and fruit intake
“The predicted relative risk of fatal prostate cancer was 3.6 for those who heavily consumed all four animal products. ” IN:
American Journal of Epidemiology Vol. 120, No. 2: 244-250
DIET, OBESITY, AND RISK OF FATAL PROSTATE CANCER
DAVID A. SNOWDON2, RONALD L. PHILLIPS and WARREN CHOI abstract here
- “stress management 60 min per day (gentle yoga-based stretching, breathing, meditation, imagery, and progressive relaxation)”
- moderate aerobic exercise (walking 30 min per day for 6 days per week)
- “The diet was supplemented with soy(1daily serving of tofu plus 58 g of a fortified soy protein powdered beverage), fish oil (3 g daily), vitamin E(100 units daily), selenium (200 mg daily), and vitamin C (2 g daily).
They were able to upregulate 48 gene including some cancer fighting ones, and downregulate 453 genes, some cancer causing ones – obviously a major boost to the immune system.
How about herbal measures?
These are my suggestions:
- Omega 3 – shown recently to help prostate cancer, also has antidepressant and anti-anger properties
Clin Cancer Res. 2009 Apr 1;15(7):2559-66. Epub 2009 Mar 24. Dietary omega-3 fatty acids, cyclooxygenase-2 genetic variation, and aggressive prostate cancer risk. Fradet V, Cheng I, Casey G, Witte JS abstract here
“Increasing intake of LC n-3 was strongly associated with a decreased risk of aggressive prostate cancer (P(trend)”
I suggest 3-6 extra strength EPA 400 DHA 200 (I get mine from cosco but I’m sure others are good too)
- Vitamin C – Known to decrease chances of colds going into the chest – minimum would be 500 mg twice daily
- Zinc – known to help fight off wart virus infections Br J Dermatol. 2002 Mar;146(3):423-31. Oral zinc sulphate in the treatment of recalcitrant viral warts: randomized placebo-controlled clinical trial. Al-Gurairi FT, Al-Waiz M, Sharquie KE. abstract
For safe Zinc supplementation, it is recommended one stay less than 35 mg elemental zinc = 154 mg zinc sulphate or 260 mg zinc gluconate.
Zinc sulphate (Orazinc, Zincate) comes in 110 (and 220 mg) – stick to the 110 mg which is a safe 25 mg elemental
- Vitamin D – High Vitamin D levels are protective against colon and breast cancer. Vitamin D has been shown help prevent and treat pancreatic cancer:
World J Gastroenterol. 2009 Jul 21;15(27):3349-54. Vitamin D for the prevention and treatment of pancreatic cancer. Chiang KC, Chen TC. abstract free article
Low Vitamin D associated with lowered immunity to Tuberculosis (TB) and influenza. The recommended 400 iu is inadequate to raise blood levels of Vit D. I would suggest 2,000 units/day. An interesting example is that of Multiple Sclerosis in which low levels of Vitamin D in adolescence doubles the risk of MS later
- Folic acid – low folic acid associated with poor control of cervical wart virus infection and more abnormal paps. There is recent evidence that the folic acid added to flour in Canada is insufficient. Taking 0.5 mg/ day of Folic acid might have anti-depressant properties as well.
- Selenium – improves immune response:
Journal of Leukocyte Biology 45:215-220 (1989); Selenium and the Immune Response: 2. Enhancement of Murine Cytotoxic T-Lymphocyte and Natural Killer Cell Cytotoxicity In Vivo; Howard T. Petrie et al. Have had little experience there, but the prostate cancer study above recommended 200 mg/day..
- Flavinoids mentioned that included tea, chocolate etc. not sure just what yet…
What about drugs? – Utah group made it clear those drugs tailor made for HIV may not be effective here. However they did suggest “AIDS drugs as well anti-inflammatory drugs and cancer-fighting treatments could be tested as potential treatments”
Addendum – out of ten anti-AIDS drugs, AZT was the only one found effective against XMRV :
Virology. 2009 Dec 1. [Epub ahead of print]
Xenotropic murine leukemia virus-related virus is susceptible to AZT.
Sakuma R, Sakuma T, Ohmine S, Silverman RH, Ikeda Y
a discussion of this can be found here:
AIDS Drug AZT Inhibits XMRV
by Vincent Racaniello link here
That is not completely true, there is an antiviral drug that was found useful in some chronic fatigue but NOT effective in pure HIV/AIDS (so how useful could it be in another retrovirus?)
J Clin Virol. 2006 Dec;37 Suppl 1:S33-8.
Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue.
Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, Montoya JG.abstract here
- It looks like these cases had herpesvirus type 6 or Monovirus as well, so either they were distinct or had both. – They treated a group with high antibody titers to either virus
- 9 responded; 3 did not. The responders went from having 12% of their energy to having 86% within 2-3 month of treatment. These results were swept under the carpet and forgotten. I have one chronic fatigue patient I sent to an infectious disease expert because we wanted to try the drug;(had antibody titers) the patient was summarily brushed off.
- Dose: “Valganciclovir (VGCV) was prescribed as 900 mg twice per day for three weeks followed by 900 mg every day to complete a total of 6 months on the drug.”
- “CBC’s were followed twice per week for three weeks, followed by once per week for three weeks, and once per month thereafter until VGCV was discontinued.”
- “patients were instructed to report any new symptoms and on each medical visit they were explicitly asked whether they had experienced fever, chills, unusual bleeding or bruising, infection, unhealed sores or white plaques in mouth, headache, seizures or gastrointestinal symptoms.”
- pregnant and sexually active cases were avoided
- responders average age 35.4; nonresponders, 43
- “Of the 9 responders, 9 (100%) experienced the onset of their chronic fatigue syndrome as a “flu-like” illness and 4 (45%) developed lymphadenopathy [sore swollen lymph nodes often in neck]”
- The infection did not go away without a fight: “All of the nine responders experienced an initial worsening of their already severe symptoms. This worsening occurred between weeks 2 and 4, and was severe enough to make several patients stay in bed for several weeks. In one patient where the WBC differential data was collected, this worsening period coincided with a 25% drop in WBC count and an 80% drop in monocytes. The three non-responders did not experience this worsening in their symptoms.”
- Valganciclovir is marketed as Valcyte. It is a scary drug in the monogram, the side effects included diarrhea 41%, pyrexia (fever) 31%, nausea 30%, and most importantly neutropenia (low infection fighting white blood cells). Anemia in 23% and nausea in 10%. However, these cases with either AIDS victims or transplant infections – people who were already in serious trouble. The above Stanford study did not get this except one low monocyte count.
- Valcyte comes in a 450 mg tablet costing $23.00, plus dispensing fee, a tablet. It is NOT on the drug plan except for eye infection and transplant cases. This means a 6 month treatment course would cost about two thousand dollars – $2,000 (better scrap any holidays and quit smoking…)
- This study had preselected those with high EBV IgG and HHV6 IgG antibody titers – good luck getting our provincial lab to even do them (hint to doctors – I wonder if they might do them if you say they were followup antibody levels from prior tests :) )
Two co-conspirators to chronic fatigue would then be HH6 (a herpesvirus often acquired by the age of two) and Mononucleosis (around 80% immune in childhood). Getting mono in adolescence is fraught with problems as is associated with an up to 6 times risk of getting Multiple Sclerosis later if a certain genetic type.
What about transmission?
- Sexual transmission suspected in the prostate form of the disease – factors found in human semen enhance XMRV infection of cells in the lab.
Is a retrovirus implicated in familial prostate cancer? Brower V. J Natl Cancer Inst. 2009 May 20;101(10):700-1. Epub 2009 May 12. (no abstract)
- Murine Leukemia Virus-Related Proviral Sequence in Mice found to reside in oviducts and uterus of mice
BIOLOGY OF REPRODUCTION 47, 665-675 (1992) Expression of an Endogenous Murine Leukemia Virus-Related Proviral Sequence Is Androgen Regulated and Primarily Restricted to the Epididymis/Vas Deferens and Oviduct/Uterus GAIL A. Cornwall et al. abstract here
- Women are presently being tests for occurrence of XMRV in relation to prostate ca partners (Utah)
There is the Question of Whether Husbands of Fibromyaglia Victims Should Be Prostate Cancer Screened at an earlier age…
What about Pregnancy?
One article addressed pregnancy in chronic fatigue:
Chronic Fatigue Syndrome: Implications for Women and their Health Care Providers During the Childbearing Years; Peggy Rosati Allen
Journal of Midwifery & Women’s Health 53(4), July/August 2008, 289-301
Some interesting facts
- first trimester spontaneous miscarriage was 4 times higher in chronic fatigue
- condition during pregnancy – 41% no change, 30% improved, 29% worse
- rather severe first trimester nausea and vomiting
- exhaustion during labor is real – go for an epidural; might need forceps.
- postpartum 50% worse, 30% no change, and 20% reported improved
- Those that did well oft relapse at 3 to 6 months post-delivery, “oftentimes severe”.
With those sort of odds, one will need that government sponsored year off to recover…
What about Delivery?
“Cesarean delivery is recommended for an HIV positive mother… when she has not taken any anti-HIV medications” –
For XMLV, you will have to decide yourself though it is a retrovirus too…
People with chronic fatigue and fibromyalgia have been greatly under-rated for years:
The fatigue – An interesting testimony from someone who treats both HIV (AIDS) and chronic fatigue “I have treated more than 2500 AIDS and CFS patients over the past 12 years and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!”
The Pain – Wall and Melzack in their original book, used the McGill Pain Questionnaire to determine severity of pain. Fibromyalgia was way near the top:
The challenge of pain By Ronald Melzack, Patrick D. Wall; Edition: 2 – 1988
Addendum – Given the negative results of a prostate cancer study in Germany, I’ve been waiting for confirmation. One study is currently being done in Sweden:
Independent confirmation of the relationship between XMRV and ME/CFS in Sweden
Testing can be done through VIPDx labs
Am interested in treatment options from people not trying to sell stuff…
Boy I hate it when somone uses poor technique to discredit someone’s work.. Guess will have to wait and see…