Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients

Discussion in 'Latest ME/CFS Research' started by JaimeS, Aug 20, 2016.

  1. JaimeS

    JaimeS Senior Member

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    It doesn't look as though this older study has been posted here before. I was interested because #MEAction's survey results indicate that 28% of respondents also had family members with ME or CFS.

    However, we did not stipulate that they be blood relatives. This study appears to support that about 1 of 5 PWME also have a blood relative with ME or CFS.

    Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients

    Abstract
    The prevalence of CFS (Chronic Fatigue Syndrome) and chronic fatigue were investigated in family members of CFS patients using a questionnaire-based study. Significant differences were seen between the prevalence of CFS in all groups of family members relative to the published community prevalence of 0.422% (spouses/partners: 3.2%, p < 0.001; offspring: 5.1%, p < .001; parents and siblings: 1.1%, p < 0.02; second and third degree blood relatives 0.8%, p < 0.02). The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS. © 2006 by The Haworth Press, Inc. All rights reserved.

    On research gate:

    https://www.researchgate.net/public...ronic_Fatigue_Within_Families_of_CFS_Patients
     
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  2. BruceInOz

    BruceInOz Senior Member

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    Interesting that amongst the offspring of CFS patients that have CFS the ratio of females to males is not as high as usual. Does this just reflect the study not having a large enough sample? (only 7 daughters and 5 sons with CFS).
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    My memory's not great but I vaguely recall a study done (by L Jason?) on prevalence in children and the stats on that were more equal in the beginning with fewer girls recovering? Too late in the day for me to look it up (if I could even find it) Maybe someone else remembers the study.
     
  4. JaimeS

    JaimeS Senior Member

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    If it's that low, that could certainly be why!
     
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  5. BruceInOz

    BruceInOz Senior Member

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    All their numbers are are not that great from a statistical significance point of view. Total of all first degree relatives with CFS is only 20. Is suggestive of an effect but needs more numbers. Also, are they sure their general population estimates used the same criteria for diagnosing CFS?

    Edit: At the time I posted this I was confusing the percentages given in Table 2 (which are percentages of total family members) with the percentage of CFS patients that have such relatives. The former are very small percentages not greatly more than population estimates. The latter are more significant. Sorry.:)
     
    Last edited: Aug 20, 2016
  6. JaimeS

    JaimeS Senior Member

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    Then the #MEAction survey is more powerful. Around 1200 responses for that question, which means over 300 respondents replied that they had relatives with ME or CFS.

    J
     
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  7. Groggy Doggy

    Groggy Doggy Senior Member

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    A good friend got ME, she lived across the street. Her home smelled like mold. I would visit daily to help her out. She moved away, and then about one year later I got ME.
     
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  8. Cog71

    Cog71

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    My nephew is 20 and has had CFS his entire life. He doesn't know what it's like to live normally. When he was little and he didn't want to come to the beach or to the movies we thought he was just weird and lazy. He would lie on the bed and beg to be left alone in the house while the rest of the family went out somewhere.

    Now I completely understand.
     
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  9. JaimeS

    JaimeS Senior Member

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    Ah, the pathogen/genetics debate.

    I really don't see why it couldn't be both. You need a pathogenic insult as well as a genetic predisposition, maybe.

    I mean, maybe not! But certainly one doesn't exclude the other. :)

    -J
     
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  10. Groggy Doggy

    Groggy Doggy Senior Member

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    I think its a combo. The invading pathogen triggers some kind of malfunction(s). Because I am genetically predisposed, I can not adapt to the changes, so I stay in a stuck mode. The pathogen may leave my body (and no longer be detected), but my cells are still misfiring and miscommunicating. If i look at my early labs, I can see the mold/fugus numbers are sky high. Later, when retested the mold/fungus numbers are completely normal. I just put this all together yesterday (semi-figured it out).

    On a computer, if our system was running slow or frozen, we would simply reboot (or power off/on). But we don't have a way to reboot our bodies electrical system (that I know of).
     
    Last edited: Aug 22, 2016
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  11. Valentijn

    Valentijn Senior Member

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    Possibly a more likely scenario would be that there's a defect in a gene which controls the immune response to specific types of bacteria, viruses, or fungi. This is already known to happen with various common infections, if people have certain fairly rare mutations on the relevant genes.

    Instead of triggering the full immune reaction to the infection when it first pops up, the predisposed person is more likely to acquire the infection. Eventually other parts of the immune system often deal with it, though sometimes the failure to respond normally to the infection can be fatal. A milder consequence can be chronic or recurring infections.

    With this type of situation, people are pretty healthy until they encounter that one infection which they aren't equipped to handle. Every other infection causes no real problems, and most healthy people have no real problems with that infection. It's a combination of the wrong genetic defect and the wrong infection coming together. If this was the case for ME, it could explain why most people do fine after they recover from acute infections like EBV, Q-fever, etc, but others end up with ME.

    Perhaps the infection is gone eventually, but it's also possible that it did some significant damage to the immune system (perhaps triggering an autoimmunity) before the infection was contained. I don't really buy the "stuck" immune system theory ... if it were really the case, I think we'd get unstuck much more often. Our bodies are pretty well designed to get ill and recover from it, after all, and we've done it many times before.
     
  12. M Paine

    M Paine Senior Member

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    While we're talking genetics, my identical twin brother (now deceased) also had CFS. We both had undiagnosed mild cases, each of us triggered major crashes after taking up running to try and improve our health.
     
  13. unto

    unto Senior Member

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    I think that this study could easily be wrong, because people
    hardly they are willing to tell things that can harm their reputation and that of their family .....
    To say that family there are more cases of ME, might suggest an infectious cause, considering the epidemic of the disease;
    sometimes I read (can not remember) of patients, even for trivial diseases, which are reluctant to admit to having that illness .....

    I ask opinion to the prof. Jonathan Edwards
    thank you
     
  14. JaimeS

    JaimeS Senior Member

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    That's certainly true. My sister only told me that she'd been diagnosed with ME/CFS when I told her I'd been. She'd been diagnosed years before I was.

    It's possible the number from the #MEAction survey is low.
     
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  15. Hip

    Hip Senior Member

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    There was some disucssion on these data by Dr Rosemary Underhill here.

    The fact that genetically unrelated spouses have a significantly higher rate of ME/CFS seems to indicate that infectious pathogens like enteroviruses and/or environmental factors play a major role in ME/CFS.
     
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  16. Hip

    Hip Senior Member

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    I would speculate that you may have been exposed to her virus via normal social contact, and the immunomodulatory effects of the mold may have allowed that virus to trigger ME/CFS in you.
     
  17. Groggy Doggy

    Groggy Doggy Senior Member

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    Thanks for your feedback. It's definitely a mystery with so many unknowns.
     
  18. justy

    justy Donate Advocate Demonstrate

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    We have three generations of M.E in my family. My mother, me, a maternal cousin and my daughter, who like me has since been diagnosed with Lyme disease.

    The twist is that I was adopted and didn't grow up with my birth mother. I didn't even know she had ME until after I had been diagnosed for years. I have never met the maternal cousin with M.E. My husband has been showing signs of mild chronic ill health for a few years - sinus issues, headaches, fatigue, nausea and insomnia. No cause has yet been found. When I met hime he was the healthiest person I had ever met.
     
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  19. Hip

    Hip Senior Member

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    The late Dr John Richardson, a GP in the Newcastle area, UK, had a strong interest in the way enterovirus infection and ME/CFS would run in families.

    For over 40 years, he would observe how once an enterovirus infected one member of a family, it would spread to other members, and to other families, and to the next generation. This is detailed in his book.

    Richardson, working with Professor James Mowbray, was the first to show the presence of enterovirus infection in the brain tissues of a ME/CFS patient who caught coxsackievirus B, and then committed suicide.
     
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