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Adrienne Dellwo

Is a Retrovirus in Our DNA Responsible for Chronic Fatigue Syndrome & Multiple Sclerosis?

By June 24, 2008

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New research points to an ancient retrovirus as a possible partial cause of chronic fatigue syndrome (CFS or ME/CFS) and multiple sclerosis (MS).

This retrovirus is called HERV-K18, and it's part of the human genetic makeup. Researchers say it activates when you have a "smoldering infection" of the Epstein-Barr virus (EBV) and HHV-6 (which both have long been believed to have an important connection to ME/CFS.)

The study uncovered that people whose ME/CFS or MS was triggered by infection mononucleosis (EBV) were at higher risk for HERV-K18 activation. That activation starts a chain reaction that leads to a strong T-cell response that's believed to deplete your immune system over time. Researchers say HHV-6 can activate HERV-K18 as well, as can immune activation.

It's not surprising that science is discovering links between ME/CFS and MS.

  • More than 75% of MS patients meet the criteria for ME/CFS.
  • Fatigue is often the most disabling symptom of ME.
  • The conditions share characteristics including:
    • Gray matter atrophy
    • Impaired cerebral glucose metabolism
    • Autonomic nervous system activity
    • Altered patterns of brain activity

The study suggests that this retrovirus could be behind some of the shared symptoms of the two conditions. The lead researcher - Brigitte Huber, PhD of the Tufts University School of Medicine - now has a National Institutes of Health grant to study this further.

To me, this is an exciting study because it helps explain why a common virus, that has very little effect on most people can have such a severe impact on others. It's also seems like something that could lead to better diagnostic tests and treatments. I'm keeping my fingers crossed for this one.

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June 27, 2008 at 4:02 pm
(1) VaBreeze says:

Adrienne…this is very interesting and I had previously read material of the same thoughts. Since CFS and Fibro. run hand in hand (per se.) would it be feasible to extend this idea to those with fibromyalgia too?

June 27, 2008 at 5:48 pm
(2) Adrienne - Your Guide to FMS/CFS says:

It’s hard to say. While there does seem to be some immune-system involvement in fibromyalgia, it doesn’t cause the same constant immune-system activity as ME/CFS. On the other hand, the symptoms shared by ME/CFS and MS seem consistent with fibro as well. This could turn out either way.

June 27, 2008 at 5:59 pm
(3) Bill Dodson says:

I am glad to see new theories advanced. I worry that there will be “much-ado” about this and it will turn out like the “Enterovirus” (sp?) that was reported all in the national media as having been found in samples of stomach biopsies of people with CFS. However, after all of the initial attention and national publicity Nothing was ever followed up on it by anybody, not the National CFIDS Assosciation, not the CDC, not anybody. I just hope folks don’t get their hopes up (AGAIN) just have dashed.

June 27, 2008 at 9:04 pm
(4) Jamie says:

The whole T-Cell line has caught my eye. Since 1990 I have had false positive HIV tests which were followed very closely by the military while I was in. Two years ago when I had a new one done it was negative for the first time in all these years. I felt great the six months before it was done… last year was different I had more problems and another positive test followed by a more extensive test that was negative…. makes me wonder

June 27, 2008 at 10:21 pm
(5) Doni says:

WOW!-this supports my Hypothesis of 2 yrs work & personal research from this former, lowly Sciences-major, namely me.

I have MS and CFS/FB. Worst symptom is unending FATIGUE. I am disabled, but en-abled with time to study.

My Mom suffered horribly with recurring HHV-6…every decade she went thru an “Outbreak”…huge open blisters down her entire digestive track. Foods only from a blender in 2 year periods…dreadful to watch as she struggled to cook family meals for us.

1960-1970′s medical minds, perplexed in Europe and the US, treated her with massive steroids, causing 100 lb. weight-gains, severe depression, …awful side effects.

Tho never diagnosed, prior to her death, I have come to believe that my Mom had MS and CFS/FM, with all the clssic, major symptoms. However, the medical community focused chiefly on her depression, prescribing box-loads of at-that-time popular & strong MAOIs and TCAs–(I called them her “-ILs”–ToferNn-IL, MerarIL, etc.), further debilitating her quality of life and her joy.

Most of my memories of her consist of great mother-daughter talks with myself and my little sister–lying in her favorite spot, her comfy Bed, where she was forced to spend 18 hours each & every day.

Of 3 daughters, I believe that I inherited her HHV-6 syndrome. (Not ever verified as my “team” is not as solid as I would like. Too passive, on which I intend to rectify–when I have an energy-spell! LOL! ) HHV-6, I intuitively know, plays a role. And my younger sister battles endless Shingles outbreaks–HV-3 (HV varicella zoster) which also causes chicken pox. Again, those blasted Herpes viruses plaguing my family for subsequent generations. And her child, at 19, was found to suffer another auto-immune disease, Crohn’s.

I am gratified by this study and I intend to contact lead researcher, Brigitte Huber, PhD of the Tufts University School of Medicine, offering myself for any studies.

Blessings to all of you, who live with or are support to, CFS/FM & MS folks! And to you too, Adrienne, for this marvelous About.com site & your work.

Doni Biggs

June 28, 2008 at 6:41 pm
(6) Nancy says:

I find this information fascinating because it proves what I believe happened to me. In 1974, I had Mono which caused splenic swelling and ITP. They thought I had acute leukemia because I all my lymphocytes were abnormal and I had no symptoms of Mono. The Mono spot test was done as an afterthought because I refused a bone marrow biopsy. When they found out it was Mono, they just observed me and in a few weeks my platelet count returned to normal and so did my white cells. But, six months later I started with the chronic fatigue and pain that was later diagnosed as Fibromyalgia. I’ve always believed it was caused by the Mono. I’m saving this article to prove to people that I’m not as insane as I sound when I claim that my Fibro was caused by my Mono. Maybe someday, research will prove me to be absolutely correct. Too bad, this knowledge doesn’t make it any easier to deal with the pain.

August 12, 2008 at 10:50 pm
(7) chuck atkinson says:

Hope this leads to a treatment!! After 14 years I’m ready to feel better! I used to run 4-5 miles a day but now don’t do much anything physical without profound fatigue[which exists to start with!]
The worse part I think is the lack of emotional validation, people don’t understand.

January 26, 2009 at 2:32 am
(8) Chang Ray says:

Hi~Adrienne,Jamie ,Doni and Nancy~ even all people here~

i have same problem~but even bader,i was infected has been 13 months,so many problem happen to my body

and i pass this virus to many people by sudor or talking~

people around me all red eyes~easy get cold etc

my cd4=400 cd8=1000,lymphadenectasis,fever,skin rush,diarrhoea,Oral fungal infection,
Congestive throat, eyes bloodshot, myalgia, muscle spasm etc.

i never have sex with anyone

13 months ago ,a strange women come and kiss me,i stop her,second day ,i begin my nightmare

anyone have same problem like me ?

are we infected by same virus?

pray God,please give me any infomation

Adrienne~ could u help me to contact Nancy and chuck atkinson?

January 27, 2009 at 9:07 am
(9) Chang Ray says:


could u help me ask some question to them ?

my girl friend be infected too~ i want kill myself

February 1, 2009 at 9:37 am

I have had a business partner from CA. who died from FMS & ME. We used to have a site that answered all types of medical questions. He died 2 yrs. ago, so the site is no more. But he had an MD out there that was studying this type of retro-virus and the connection w/FMS, ME (the correct name is Myalgic Encephalomyopathy). But you’ll not find any MD to agree w/you on the real true name of this disease. Anyway, i had hep A & Mono at age 17, now have EBV, and suffer all it’s consequences daily etc. There is a definitive cause between the retro-virus theory, and all our symptoms suffered. Medical doctors need to wake up and give credence to their patients who suffer in pain, each day, being told “you need to see a psychiatrist, it’s all in your head!” That’s total BS !!! And I have been a Psych RN for 30 years, and disabled because of this disease. i was diagnosed in 1986 @ Lahey Clinic-Burlington, Mass. There is also a familal gene that is passed on from mother to female child!! Perhaps one day soon, we will have meds thatwork, but for now I’ve tried LYRICA, NEURONTIN, EFFEXOR, PROZAC, RITALIN, ALL ALL MUSCLE RELAXERS made on the market. Soma is about the best one in combo with darvocet. But you reach a toleance of relief after years of taking these meds. And that is where i am now stuck !! I now have to have FACET INJECTIONS in my neck & spine, of cortisone & lidocaine. It helps for awhile. And the next step is to hae a burning of my nerve endings in my neck, to allay the nerve pathways from pain. this has worked in the past for me. Other than these procedures, massage & acupuncture helps. Plus some herbal combinations as well. Good health to all of you that suffer with this mysterious disease complex. YOU ARE NOT CRAZY !!! :-) yOU CAN WRITE TO ME AT: EZMARELDA999@AOL.COM,
You can write to me at my email, if i can be of anymore help to you. God Bless, Antonette

March 22, 2009 at 4:15 pm
(11) Bunni says:

I hope this finding helps MS patients. I have MS and ME/CFS/FMS also. I had injury to neck in 1991 and then my health went downhill. By mid 1993 I was disabled. I was dx with ME/CFS in 1994 with just about all the symptoms marked off. I wasn’t dx with MS until 2006. As Doni mentioned fatigue is never ending. No matter what I tried natural or prescription, it doesn’t go away.

I don’t know of anyone in family with history of any virus though. I know there is a lot of cancer on father side. My sister died almost 4 years ago from lung cancer. She also had diabetes and seizures. My mother side is hyperthyroidism. It is possible MS is somewhere in family history but it was benign.

When I first got sick I got infections one right after the other. I even had thrush. But I don’t remember if the doctors mentioned me having any virus. All they told me it was either stress, all in my head or I was depressed. It is in the head – the brain.

God bless you all, Bunni

January 14, 2013 at 2:01 pm
(12) Kathe says:

I have had CFS/ME since 1986 but of course no doctor ever gave that diagnosis any attention at all and even scoffed at it – as everyone already knows.

It’s only been since 2009 that it has begun to really expand in research and NIH attention. It does give hope, but it is a fragile hope since there has been nothing but disappointment so far.
Still, the medical world is on the edge of a new paradigm shift so once again I am hopeful. Especially in virology, new imaging and testing techniques are beginning to flourish. Hopefully the new wave will wash away the old medical mindset and the old pharmacology model of greed over good.

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