Monday, April 25, 2011


I received two dozen letters from patients with more than one family member diagnosed with ME/CFS.  Most were mother and daughter, a few were mother and son, father and daughter/son, and husband and wife.

The most compelling case for an infectious ME/CFS etiology may be the family of Keith Baker, better known as bakercape on the forums. 

Now 41, Baker was 16 when he suddenly became  ill. At the time, Baker was a high-school track star and Junior Olympic metal winner in Waterville, Maine. As he testified to the Chronic Fatigue Syndrome Advisory Committee, “I was running a race and suddenly I could not put one foot in front of the other. I stopped in the middle of my race and knew something was terribly wrong with me.”

Baker was diagnosed with mono the next day and came down with chicken pox a week later. Next, his 12-year-old brother got chicken pox and mother became ill with shingles (a reactivation of the chicken pox virus) and Bell's palsy. 

When his adult sister came to visit, she too got sick.  And when Baker and his brother visited their father—his parents were divorced—his father became ill as well.  In a matter of months, everyone in the family was sick with ME/CFS.

Today Baker still has ME/CFS, as do the rest of his family. Baker hasn’t been able to run since he first became ill.  His wife is healthy, but their two children have high-functioning autism, and the elder child also has seizures. Of all the family members, Baker’s brother is the most severely affected with ME/CFS.

Genetics can’t explain this entire family coming down with ME/CFS, because Keith Baker’s parents clearly don’t share the same genetics, and neither does Baker: He’s adopted. 

Interestingly, years after becoming ill, Baker met his birth family, and no one was ill with ME/CFS.

So what happened?  Was there a common infectious agent that made the Baker family sick?  That would explain the illness that afflicted Keith Baker and his brother and mother, and perhaps his sister as well.  But Keith Baker’s father doesn’t fit neatly into that scenario as he wasn’t living in the house.  The fact that the father got sick after his sons visited indicates the illness may be contagious as well.  

No one in the family has been tested for XMRV, but they plan on getting tested this summer. 

This family’s ME/CFS history is anecdotal yes, but anecdotes shouldn’t be dismissed, especially after nearly three decades of hearing similar stories.  Over the years, there have been compelling sagas of couples or family members becoming ill with a flu, and one goes on to develop ME/CFS, while the others recover.  Sometimes the lucky family members who recover come down with ME/CFS years later, however.

I’ve also heard of couples who come down with a flu and one develops ME/CFS, while the other develops another illness, including Parkinson’s, multiple sclerosis and diabetes.

Clearly, after three decades, it’s beyond time that the CDC and the NIH study these families and establish the cause. 


  1. Mindy, I came down with ME/CFS and my husband then came down with sarcoidosis, a supposed autoimmune disorder. Have you heard of any other sarcoidosis links? Thanks.

  2. Where does Keith live (or where was he living when he and his family got sick)?

  3. "Clearly, after three decades, it’s beyond time that the CDC and the NIH study these families and establish the cause." Absolutely!!!
    I know it's not a CDC nor an NIH study, but at least a couple of doctors are trying to do something about this. Check out their family study here:

  4. Nice presentation Mindy. Thanks!

  5. Mindi, I am XMRV+ and was diagnosed with fibromyalgia 16 years ago. My father has late stage Parkinson's and his wife has MS. I had a brother that passed from leukemia and another brother with Graves disease. My mother had breast cancer and is showing signs of fibromyalgia. My sister was diagnosed with fibromyalgia last week. Only one brother does not have an illness in my immediate family.

  6. Thank you, Keith, for telling about your family. I hope someone will investigate to see what has caused three generations to suffer so much. And thank you, Mindy, for posting this.

    Patricia Carter

  7. Tragically, because of inaction by the NIH and CDC almost everything we know is anecdotal.

  8. Anonymous, Keith Baker was living in Waterville, Maine, when he and his family became ill.

  9. That's exactly how CFS got started.


    Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
    by Hillary Johnson

    Page 28

    1985 / Invitation to an Epidemic

    "Until April, Paul Cheney and Dan Peterson had tried to believe they were dealing with sporadic, random cases of the malady described in the Annals*.
    The teacher cluster shattered their fragile equanimity
    "It all broke down--began to break down--when the epidemic began to be evident in May," Cheney said, "Because Jones and Straus never talked about an epidemic".

    Osler's Web. Page 21:
    *National Institutes of Health Annals. Jan 1985.
    "Persisting Illness and Fatigue in Adult with Evidence of Epstein Barr Virus Infection" -Stephen Straus
    ""Evidence for Active Epstein Barr Virus Infection in Patients With Persistent Unexplained Illnesses" -Dr James Jones

  10. Both my brother and I have ME/CFS. I've had mono and also presented with sarcoidosis. My mother has had Bells Palsy. My brother and father have both had Reiters syndrome. Also my brother and I have been diagnosed with chronic Lyme disease.

    Keith Baker's story is sad and chilling. Notice has to be taken of anecdotal evidence as this is all we seem to have!

  11. How does one get diagnosed with ME/CFS? My Dr. told me there are no codes for it. You are either diagnosed with ME or with CFS.


    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome

    Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality.
    The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine


    Although CFS was the term given by the 1988 Holmes committee to a "typical ME epidemic", the simple fact of the matter is that so many people tried to make the loose CFS definition into being "the disease" that CFS came to be considered nothing more that this vague description, (which appeared to be the desired goal of the majority of the CFS definitions authors)

    "ME/CFS" is necessary to clear up any confusion, and to remind people where "CFS" came from.
    Precisely what illness the syndrome was originally based on.

  13. Very tragic, my heart goes out to Keith and his family, but when looking at the bigger picture, CFS or whatever you want to call it, doesn't seem to be very 'infectious' at all. If it were, and the situation in Keith's family were representative, tens of millions, if not more, would be disabled.

  14. Perhaps millions WILL be... in a matter of time.

    Consider this.
    What if there were an "enabler"?
    Some kind of co-factor that occasionally threw the door WIDE OPEN for "Whatever-it-is" that causes CFS?

    What if that peculiar "conditional enabler" could only be found if one looked VERY closely at the environmental circumstances where
    "Whatever-causes-CFS" didn't play by the rules?

    A circumstance where the only thing that clusters of illness seemed to have in common besides having been together.... was where they had been when they were together.

    Locations where "Whatever causes CFS" spectacularly transcended its customary behavior, sometimes acting almost as if it had been set completely free of normal constraints.

    Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
    Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
    Chester AC, Levine PH.
    Georgetown University Medical Center, Washington, D.C.

    Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.

    PMID: 8148452 [PubMed - indexed for MEDLINE]

  15. The illness in Incline Village was ME. CFS is not the same as ME and ME should not be called CFS.

    There is no such illness as ME/CFS, just another made up construct to confuse and obfuscate the real illness.

    No one with ME should be diagnosed with CFS in any form, even as the absurd combination or hybrid terms.

  16. As presented at the Invest in ME
    Extracts from
    A New and Simple Definition of Myalgic Encephalomyelitis
    and a
    New Simple Definition of Chronic Fatigue Syndrome
    London Conference of May 12, 2006
    by Dr. Byron Hyde MD
    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome
    Which is available from the Nightingale Foundation at

    • In the Lake Tahoe epidemic as in the previous epidemics described, the type of Central Nervous System involvement was obviously of a more diffuse nature and the type of peripheral involvement that caused so many troubling symptoms in all these epidemics was consistent with a very low grade vasculitis (See Mercy San Juan Hospital Epidemic) or in many cases a classical radiculopathy (spinal nerve root involvement) or even a very low grade Guillam Barre Syndrome as was described by Alberto Marinacci when he examined the Las Angeles County Hospital patients. (See Dr Marinacci's book Applied Electromyography. Lea & Febiger, 1968: Chapter 9).
    However, I should note that the mere mention of Guillam Barre Syndrome drives many neurologists crazy. They say that GB Syndrome is a severe disease that if not treated effectively may kill or leave the patient permanently disabled. However, all real diseases have a wide variety of penetration from so mild that they may be missed to, in some diseases, having potentially mortal consequences.

    If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
    Yet retain these above Lake Tahoe features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness.

  17. Erik: #1 - We do not consider the Lake Tahoe epidemic alone, # 2, CFS does not retain the primarily definitional determinates of ME.
    So, if the Lake Tahoe illness has the primary determinants of ME, it was ME and should be called ME, not CFS.

    Given that CFS does not and is a different definition, then CFS is not the same as ME. ME/CFS thus makes no sense as it implies that they are the same when they are not. ME/CFS is just another made up, bogus construct that is being sold as a brand, much the same as CFS.

  18. Dr Hyde specifically identifies the illness that was under consideration by the Holmes committee, and to which the CFS definition was developed.
    It was the,
    "1984 Lake Tahoe Raggedy Anne Illness that had appeared sporadically and in clusters in many areas of the United States and Canada"

    If the syndrome had been named "Yuppie Flu" and the sole criteria was "Fatigue", it still wouldn't change the illness one bit...
    and amazingly enough, when it was called that, it didn't!

    A Brief History of Myalgic Encephalomyelitis and an Irreverent
    History of Chronic Fatigue Syndrome
    As presented at the London Conference of May 12, 2006 by Byron Hyde

    If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
    The Lake Tahoe Epidemic represented an illness
    a. With an acute onset.
    b. With an incubation period of 4-7 days,
    c. Occurring in both students and adults,
    d. Involving the central nervous system in a diffuse, non focal
    e. The onset of a Raynaud’s disease along with a peripheral coldness,
    blanching and pain syndrome of fingers, hands and feet or
    postural hypotension or instability. A non-tramatic, acute onset
    of these
    two syndromes is consistent with an injury or a significant
    diffuse change
    in the autonomic physiology of the subcortical brain.
    f. Rapidly developing flaccid muscle weakness with minimal effort or
    activity, (The Lake Tahoe epidemic was initially called Raggedy
    Syndrome due to this finding.)
    There is a consistent similarity of the
    Lake Tahoe epidemic patients to all of the previous epidemics
    mentioned in this short history and the many others that are
    documented in our textbook. The Clinical and Scientific Basis of
    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
    Yet retain these above Lake Tahoe Features in mind when we come to
    the first CDC definition that was largely based upon this very same
    Lake Tahoe epidemic ilness.
    1987: The first CDC definitional meeting
    I have mentioned the April 1987, First International Symposium on
    Immunology and Pathogenesis of Persistent Virus Infections held in
    Atlanta Georgia hosted by the CDC and Dr Carlos Lopez. At the
    termination of this meeting to discuss the creation of a definition
    for this 1984 Lake Tahoe Raggedy Anne Illness that had appeared
    sporadically and in clusters in many areas of the United States and

  19. I can see where one might employ the rationalization that if the Holmes committee created the CFS definition on "hearsay" rumor, and mere descriptions alone, there would be a "disconnect" that allows the concept of "CFS" to be only whatever was in their minds.
    It's application to the Tahoe illness, just a bad mistake.

    But the Holmes committee knew about all the evidence described in Osler's Web, publically identified the Raggedy Anne Disease as "Similar to the Royal Free Disease, that the British call ME", and took signs and symptoms right out of our medical charts for use in the new definition.
    The Holmes committee knew EXACTLY what they were calling "CFS".
    And there was one more piece of evidence they took from us which serves as a TANGIBLE LINK between our specific disease and this new syndrome:
    They took our blood!
    That gives us MORE right to say what CFS IS,
    than they do to say what CFS isn't.

    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome
    Which is available from the Nightingale Foundation at

    The Lake Tahoe Epidemic
    The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls’ basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.
    Dr Paul Cheney and Dr Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called the Centre for Disease Control (CDC) in Atlanta for back up.
    First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
    Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr Gary Holmes gave out his new paper, “A cluster of patients with a chronic mononucleosis-like syndrome,” that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
    The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done.

  20. Hey, I saw his CFSAC testimonial on YouTube .. I think it was him. He caught the disease first, then other household members got it after him. Then he said he didn't think it was purely genetic, because he was adopted -- the household members that got sick were not blood-related to him.

    This reminds me of a friend diagnosed with ME/CFS. His roommate, another friend of mine, ended up a couple of years later with a psychotic break (I think). He ended up going through electroshock treatment. He's really a mild mannered decent fellow from the UK. Anyways, last I heard, he completed his degree and got married. I don't know if this was transmission, because his father later told me he himself was dealing with pathological lying.

    I've also heard of a roommate dying, a person who got depression when there was zero history of it in family, and people who develop chemical sensitivities.

  21. People are not diagnosed with ME/CFS. There is no ICD code. That is what some call it. There is really no such thing as ME/CFS. We are being duped again by another made up creation.

  22. It’s not only far beyond time to establish the cause, but also to stop the CGT and GET for us M.E./CFS patients. It’s also far beyond about time (sorry if this isn’t grammatically well-formulated) to take this disease after all these years finally serious. I only want to say to doctors, scientists … : waste no more time and money, but do something about it… that’s the least you can do to make up for all those lost (and stolen) years.

  23. Jill, "When you say that... smile!"

    Canadian Consensus Guidelines

    Myalgic Encephalomyelitis/
    Chronic Fatigue Syndrome:
    Clinical Working Case Definition,
    Diagnostic and Treatment Protocols
    Bruce M. Carruthers, MD, CM, FRCP(C)
    Anil Kumar Jain, BSc, MD
    Kenny L. De Meirleir, MD, PhD
    Daniel L. Peterson, MD
    Nancy G. Klimas, MD
    A. Martin Lerner, MD, PC, MACP
    Alison C. Bested, MD, FRCP(C)
    Pierre Flor-Henry, MB, ChB, MD, Acad DPM, FRC, CSPQ
    Pradip Joshi, BM, MD, FRCP(C)
    A. C. Peter Powles, MRACP, FRACP, FRCP(C), ABSM
    Jeffrey A. Sherkey, MD, CCFP(C)
    Marjorie I. van de Sande, BEd, Grad Dip Ed
    ABSTRACT. Recent years have brought growing recognition of the
    need for clinical criteria for myalgic encephalomyelitis (ME), which is
    also called chronic fatigue syndrome (CFS). An Expert Subcommittee of
    Health Canada established the Terms of Reference, and selected an Expert
    Medical Consensus Panel representing treating physicians, teaching
    faculty and researchers. A Consensus Workshop was held on March 30
    to April 1, 2001 to culminate the review process and establish consensus
    for a clinical working case definition, diagnostic protocols and treatment
    protocols. We present a systematic clinical working case definition

    Throughout this paper, myalgic encephalomyelitis. and chronic fatigue syndrome. are used interchangeably and this illness is referred to as ME/CFS.

  24. Erik, The CCC merged them and created something they called ME/CFS. It contains features of both. But it is not an actual illness.

    CDC lists them as separate and recognizes the distinction.

    If CFS excludes ME, then any dx of ME/CFS makes no sense. So it is not at all about dumb drs or journalists who just don't get it. Who would.

  25. Who would "get it"?
    Anyone who understands the following words.

    If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
    Yet retain these above Lake Tahoe features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness.

    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome
    Which is available from the Nightingale Foundation at
    -Byron Hyde M.D.

  26. I believe my family got sick possibly from sharing food or picking up dirty kleenex that fell out of the trash. We all have very heavy mucus and need tissue with us at all times. I think the WPI needs to check nasal secretions, lung secretions, and saliva for XMRV. Possibly, like some herpes viruses, XMRV only is present in these fluids when it sheds from the lungs and the sinuses. Thus, it would not always be present.

  27. Thank you for your story Mindy, and thank you Keith for letting us be a part of your experience.

    If this family had negative Lyme tests, and/or didn't get one, might I ask them to re-consider getting another? Specifically the western blots and on the east coast bartonella and Rickettsia?

    I was bed/house bound for 6 years, and horribly ill for another 11, until I retested for Lyme and was positive for it and Bartonella. I am also XMRV positive. I have been on anti-biotics for 5 months, and my condition has improved.

    And if the spirochetal bacteria can penetrate teh placenta between mother and child, some believe it's not too far off to say that yes, it is transmitted via bodily fluids.

    Dr. Judy Mikovit's said about one of her XMRV studies that of the CFS patients tested, that 40% also had Lyme. It's my passion to reach those 40% and help them re-consider getting re-tested at a reputable lab. What can it hurt to test again?

    Thank you again Mindy, and God Bless Keith and his family.

  28. Looks like the vaccination for Swine Flu has been causing narcolepsy in people in multiple countries, including the UK. Narcolepsy is an excessive sleeping sickness, not unlike some of our sleeping patterns.

    I guess this is why the UK withheld their shots. I wonder if it's infectious, too.

  29. We are a couple for 15 years now.
    6 years ago i get sick,a week later my wife get sick,both M.E/CFS,there was never a docter who looks for patterns,bizar isn't it!!
    i am 24/7 in bed,and my wife 15/7
    Whe hope that there is comming a cure soon,before its to late! We getting sicker and sicker......

  30. Kate. My family and I have had several Lyme tests. I have had at least a dozen and I had Western Blot twice. All our Lyme tests have been negative always.
    Out of desperation my mother had my sister, brother and I treated for Lyme without a positive test after reading about Lyme. We had intramuscular shots of several antibiotics and rounds of orals. It did not help any of us at all. :(
    I agree it's always good to consider Lyme when you have an ME diagnosis and make sure to rule it out. I have friends with Lyme and they are very ill in a similiar manner to ME patients.
    Keith Baker

  31. 1) FDA accepted Borrelia Burgdoferi (Lyme) are limited to one naturally occuring tick strain, based on a non patient isolate, from one American state 30 years ago. The problem is, there are now more Borrelia variants proven to be pathogenic that the CDC/IDSA won't act upon. This creates false negative Lyme tests..GLOBALLY.

    2) Chronic Lyme leading to the ME like, 'neuroborreliosis' state, the bacteria is rarely found in blood, but in tissue and CSF fluid requiring an invasive Lumbar Puncture procedure. As a result, tests patients have are usually blood tests. Again, false negative possibility occurs and patients remain with a psyche or mystery fatigue based misdiagnosis.

    3) Late stage Lyme is known to cause encephalopathy and chronic meningitis. Untreated in some, Borrelia can also lead to: MS, Parkinsons,ALS. Worryingly, the more severe Lyme is, the less likely patients are to have antibodies to Borrelia in their blood.

    4) Lyme is very similar to its co infections. CFS patients testing negative for Borrelia (Lyme), could instead be infected with Borrelia, Babesia, Riketsia but don't test for these, or have CNS infection, again, not showing up in blood.

    The conclusion, is negative Lyme tests are not necessarily negative.


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