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Men, what do you think

Discussion in 'XMRV Research and Replication Studies' started by usedtobeperkytina, Jan 29, 2010.

  1. kurt

    kurt Senior Member

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    Interesting thread. I have a large family that might give some insights about CFS gender issues. I got sick first, and yes, went through the years of male denial, re-framed the illness several times to be certain I did NOT have ME/CFS/CFIDS. But eventually about five years ago it became undeniable. I was totally disabled finally, and this was not 'burn-out', not 'Lyme Disease' and certainly not just 'Candidiasis'. Thinking back I really do have some of those conditions, but they are not the major problem, I could probably have treated any of those successfully, what made this CFS was the dopey mitochondria, the inability to exercise and the continual immune activation.

    OK, so here is the data for us, I have a large family, six children, three boys and three girls. And here is how this has played out over the last 14 years that I have been sick. I was first, had both sudden and gradual onsets, and partly recovered once and went back to work full-time, back to my regular over-scheduled career (probably 60 hrs/week avg). Of course that did not last. About year 4 I really crashed and the recovery was finished and I got worse than ever. At that time my oldest daughter began the slide into CFS, at one point she became sicker than I was, she did not leave the house for several years (a little improved now, but still totally disabled). Then my wife started to have some CF, but never CFS. She still has some PEM problems and has to rest after being out and about all day, and sleeps an extra 4 hours many days, but still can do physical work, no apparent mitochondria problems. It is a partial CFS case perhaps. She has a lot of mood issues that started around the time I had my relapse in year four and those have never stopped.

    My second daughter is healthier like my wife, a little CF after a lot of exertion but no loss of endurance, still runs half marathons, she is a very busy college student now. The third daugher is pre-CFS, a teenager, we are watching her. Maybe we can prevent CFS in her, we have trained her to listen to her energy level, and get extra rest when she needs it. So far things are alright but she does take a long time to heal from colds, etc.

    Now the three sons, basically no CFS, no CF, they are high-energy. The oldest is a college student who likes to climb mountains. The second son (secondary school) occasionally gets tired and listless but he just goes to bed and a few extra hours of sleep works. One son seems to have lower than normal energy when he is sick, but he really does not have any CF/CFS symtpoms. The boys run circles around us.

    So how does this fit the theories? The male gets CFS first, then one of three daughers gets severe CFS, another daugher is pre-CFS and being watched carefully, another daughter and the wife have some CF but no signs of real CFS, and three sons with no CFS or CF.

    I have wondered if this male/female thing is real, it appears to me that in my family at least the females are more vulnerable. Maybe I had some type of neurological injury or gene mutations that the others do not have that created a susceptibility in myself. One things that is odd is to see the different immune responses between the males and females in my family. When the males get sick they just seem to get through it faster. The females all seem to take longer to recover from anything. I am somewhere inbetween the two groups.

    So, for us the final score, in a family with 4 males and 4 females, and shared genetics:

    CFS:
    1 Male
    3 Females (one with CFS, 2 with CF or pre-CFS)

    HEALTHY:
    3 Males
    1 Female
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Kurt, I know you aren't leaning toward XMRV as much as the rest of us. But if progesterone were a factor, then the boys may not get enough spikes to push the viral load beyond what the immune system can handle. And the more insults to the immune system, the more likely you will hit that pivotal point. And the last one can be a big event or a small one.

    But it may be your sons just haven't hit that point yet. And since progesterone is a factor, the women hit that point earlier, generally speaking.

    Tina
  3. liverock

    liverock Senior Member

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    People who are large high fat dairy eaters will have higher levels of progesterone, both male and female.

    It seems these higher Pg levels are due to modern dairy farming practices.

    Cows now are permanantly pregnant and have higher Pg levels than they used to before present day factory farming procedures were used.

    Assuming that Pg raises XMRV levels, this could account for the large numbers of children going down with CFS as they usually consume a lot of dairy.

    http://www.docguide.com/news/content.nsf/news/852571020057CCF6852573B1007803AD
  4. ukxmrv

    ukxmrv Senior Member

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    Kurt,

    I'm really sorry to hear about your family. Makes me very sad to think of children with this disease or at risk of this disease.

    Can you think back to your parents and your wife's parents? Are there any clues from your siblings or your wife's siblings to determine where this could come from.

    As you became ill after you married, could your wife have been the carrier, but your triggered first, then she triggered?

    Is there any difference in the distribution of the girls/boys in your family that correspond to times when you were sick?

    I'm finding strange things in my own family on the maternal line. A cousin with ME (boy) and another cousin's wife with ME after their marriage. Both spouses are well.

    From my own siblings one full CFS (girl), 1 close to CFS (boy), my Mother has now come down with CFS after a major operation. Nephew close to CFS but his mother (my sister) is fine. I'm going to have to go back and doublecheck all of this and see if I can work it all out.

    I'm XMRV + BTW
  5. dannybex

    dannybex Senior Member

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    Also something to consider...

    Hi Kurt,

    I'm sure you've probably looked into this already, but just in case...something else perhaps to consider is hidden mold issues, or other pesticide or chemical exposures.

    And speaking of chemicals...

    I have this weird theory, perhaps too broad-brushed and/or naive, but that may possibly be another piece of the puzzle as to why in general women have a higher rate of CFS than men: They use more cosmetics, perfumes, most of which contain toxic chemicals, etc.. -- in general -- than men.

    Many of the chemicals in cosmetics have estrogenic-like properties, affect thyroid function, impair liver function, not to mention the many other ways they are toxic.

    Now I'm sure many women on this forum and elsewhere who are chronically ill don't wear makeup, perfume, etc., but again, in general, I just wonder if the hundreds of chemicals used in so many products that are used on a daily basis, covering the skin, the face, etc.,may have placed an extra burden on the body, the immune system, the liver, the hpa axis...which just might explain (in some cases) the higher rate.

    A few links to articles...

    http://www.safecosmetics.org/article.php?id=601

    This alone is alarming: "Most personal care products that contain phthalates don't list them on the label. In field research, the Campaign for Safe Cosmetics found phthalates listed as an ingredient only in nail polish (i). Yet our 2002 report, "Not Too Pretty," described phthalates in nearly three-fourths of tested products, even though none of the 72 products had phthalates listed on the labels (ii)."

    http://www.safecosmetics.org/article.php?id=290

    http://ecochildsplay.com/2008/09/25...ics-chemicals-alter-hormones-disrupt-puberty/

    Anyway, just my two cents...something to consider. Men certainly use deodorants, cologne, after-shave,...

    ???

    Dan
  6. kurt

    kurt Senior Member

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    Thanks for the comments (and sympathy is always appreciated :)

    Tina, you are right, I am not as enamored with XMRV as many others here. For one thing, we only have one study so far showing positives. And no causal model studies yet to prove it is not a passenger. For another, there are numerous problems with thatScience study, some of them pretty serious (I have many more details now, way too much to post here). And WPI has pretty much acknowledged that PCR testing for XMRV does not work reliably, so they are relying on a cross-reactive MuLV antibody for nearly all of their findings now. Yet they and others are trying to use XMRV to build up support for ME/CFS (and of course for WPI). This is a bit risky.

    Anyway, while you are right in theory, there are other viruses that would flare with progesterone,probably including EBV and other herpes, for instance. We have no way to differentiate that at this time.

    Good point, but we use only raw milk from hormone-free cows, and the two of us with severe CFS drink almost no milk at all.

    I have tried to come up with those types of clues, my daughter and I are the only PWC in my extended family. However, my wife has several cousins who have battled CFS, one was severe and was a Cheney patient at one time, but ironically she is the only one recovered (not from Cheney's treatments, she used some unusual treatments and also essential oils and super antioxidants).

    The daughter with CFS is our oldest, she was a teen when I had the famous 'flu-like illness'.

    I do think there is genetic involvement, maybe a group of genes, and those who inherit specific subsets are more vulnerable. Sort of like cystic fibrosis.

    My mother is in her 70s now and she has always had some lingering fatigue problems when she was depressed or had a virus of some type. But she does not have CFS. However one of her aunts died of Addison's disease, a long time ago. But that's all, again, that supports the idea of some genetic set of contributing factors.


    Yes, I moved from the east coast to the desert in the west to escape mold, it is a big factor for my CFS, but does not seem to bother the other family members as much. And none of us use chemicals, my wife has MCS. But some chemical injury at some time could have occurred. I got sick in San Antonio, Texas, I was working at a military research lab. (we were behavioral scientists, no chemicals). But there were a lot of pesticides used there, even bat poisons at some of the buildings on the military base where I worked. But that would not explain the family.

    There is obviously some infection at play, but it does not appear to be vertical, not an STD (my family is very traditional), there is really NO logical transmission vector for XMRV in my family.

    And there is obviously some genetic factor.

    Right now if I were to make my best guess at what causes CFS, based on all the evidence I have (including many studies read), it would be a common cellular injury of some type that we all have, that can be caused by various combinations of bad genes, toxins and bad bugs, and is very hard to reverse. Candidate genes are methylation, immune, detox, and stress response. Candidate toxins are metals, mold toxins, and superantigens (sAG) from endogenous retroviruses (such as HERV K18). Candidate bad bugs would be the herpes family (they are the Adams Family of virology, uncle Fester is HHV6).

    Keep thinking!
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Kurt, we've had the discussion on what you say is problems with the study. And its good you bring them up, whether others agree with your conclusions or not, it's out there to be analyzed. Nothing wrong with questioning, testing, etc. And your points help all of us to do that.

    Why hasn't someone done an in depth study on family illnesses of ME / CFS patients? OH, that's right, no funding because we all know it is psychological.

    But my family has a story to tell. It's got to be in the genes or a virus.

    Tina
  8. Sing

    Sing Senior Member

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    I wonder if Dr. Byron Hyde has gathered this information, since he does such in depth assessments? Also the other docs, like Peterson and Cheney? Some of you probably know about this. Should I start a new thread, asking forum members as awhole? I mean, even if a big study has never been done, still some of these thorough doctors must have gathered some telling data by now--

    What do you think?

    Sing
  9. muffin

    muffin Senior Member

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    Kurt: I too am very sorry that you and your family have to live with this disease. It is so not fair for a Dad and Mom with six kids to be sick. I am the first of six kids and I live in fear that my siblings and young niece and nephew will get what I have. All but one of my siblings have a connective tissue disorder and people like Dr. Peter Rowe at Johns Hopkins believe that there is a correlation between connective tissue (hyper mobility) and FM. My father had FM and we believe he aslo had CFIDS but kept mum about his pain,etc.

    It enrages me that children are damaged by CFIDS and people like Reeves. It also infuriates me that men are damaged by the stupid stigma that CFIDS is a women's disease when clearly IT IS NOT. There are just too many men out there who are sick and not getting the correct diagnosis and treatment. So what do you men do? You lie and self-medicate. Not fair to men. Soon I do expect far better diagnostics and reporting and then we will see that men are probably equally affected by CFIDS as women. And then that stigma will go away and men will get the treatment they deserve.

    Again, as the first of six kids, I am very sorry this has happened to you and your family. That's really all I wanted to say.
  10. ukxmrv

    ukxmrv Senior Member

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    Rosemary Underhill is someone with an interest in CFS in families. She published this paper

    Underhill RA, O’Gorman R. Prevalence of Chronic Fatigue Syndrome within families of CFS patients. J CFS 2006; 13(1):3-13.

    PREVALENCE OF CHRONIC FATIGUE SYNDROME AND CHRONIC FATIGUE WITHIN FAMILIES OF CFS PATIENTS.

    Rosemary Underhill, MB BS. MRCOG, FRCSE.
    Ruth O’Gorman, BA, M Sc.

    Family members with CFS n/total % Family members with CFS mean (95% CI) p-value †
    Spouses/partners 6 /186 3.2 (0.7 to 5.8) < 0.001
    Offspring 12/235 5.1 (2.3 to 7.9) < 0.001
    Parents & siblings 8/730 1.1 (0.34 to 1.84) < 0.02
    All 1st degree relatives 20/965 2.1(1.2 to 3.0) < 0.001
    2nd & 3rd degree relatives 24/3216 0.8 (0.45 to 1.05) < 0.02
    All blood relatives 44/4181 1.1 (0.75 to 1.3) < 0.001
  11. minimus

    minimus

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    I am a male CFIDS patient. In New York, the only "treatment" any traditional doctor has ever offered me was prescription antidepressants. When I have mentioned chronic fatigue syndrome to them, most of these doctors have stated to me that they don't believe CFS exists. I don't even mention CFS when I go to the doctor now. I have to fly to North Carolina once a year to see Paul Cheney to be taken seriously and to receive any real treatment.

    At the same time, since becoming ill I have been burdened by the expectation that I should be working because I have a family with a child. My parents and my wife's parents have both said that I need to work to support my family. The only sympathy my wife's parents ever offered was to my wife for having a husband with lousy health.

    My therapist years ago advised me against pursuing disability because in his experience most married men with children who become disabled feel a tremendous loss of self-worth and tend to become far more depressed than women who become disabled.

    I have managed to keep working full-time thanks to Paul Cheney and by pursuing a lifestyle in which all of my energy goes toward making sure I can get to work five days a week. That means I do nothing else -- when I am at home, I am usually in bed. I usually don't leave my apartment at all during weeknight evenings or on weekends.

    I know a lot of married women who do not work (my wife included). My wife's only concrete responsibility is to fix my daughter a lunch for school. If she has insomnia, she takes a nap the next day. If she is depressed or otherwise not feeling well, we order take out for dinner. She often comments that my life would be a lot easier if we switched places. I agree.

    Bottom line is that in my mind, the biggest determinant of a CFS patients sense of self-worth, identity, and quality of life is not one's gender. What matters is the severity of symptoms and whether one has the ability to adjust one's lifestyle to deal with those symptoms while maintaining some semblance of self-worth. If my New York doctors suddenly started taking CFS seriously, it would not change my life one iota unless they had some treatment that would improve my quality of life.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    minimus, thank you for sharing. I see you did not address the idea of progesterone.

    Tina
  13. Koan

    Koan Be the change.

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    Hi Minimus,

    Thanks very much for your perspective. I agree 100% with your assessment.

    But something else you wrote made me think.

    I just want to say that many of the families in my circle of acquaintance consist of women who go out to work and stay home dads. This has worked out very well for everyone I know. I'm talking about healthy people. Once the children reached school age, one dad returned to work but is just less career oriented than his wife and he will always make less money and work fewer hours, another father continued to stay home and "keep house" while pursuing his interest in music and a third father returned to school and will not be a wage earner for many years. All of these families are doing well. My own eldest stepson will be staying home with his baby daughter while mom teaches at a Uni.

    I don't think a man's sense of self worth, or a woman's, need come from their ability, or interest in, the traditional roles. These things only have as much power as we give them. Should you and your wife ever decide, or be forced by circumstance, to swap roles you might both find it surprisingly liberating.

    I am very sorry that you receive so little understanding and support from your parents and in-laws. I think I would find that a very bitter pill in your situation. It sounds as though you are making a heroic effort on behalf of your family. It is a great pity they can't see that. Whether they see it or not, it is the truth.

    tc,
    koan
  14. Hope123

    Hope123 Senior Member

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    I read a few follow-up studies where in the discussion section, they talked about how the men, over time, did not fill full Fukuda criteria for CFS despite still being relatively disabled. So another thought would be that men manifest CFS slightly differently and so are not being diagnosed with CFS despite still having severe fatigue and other symptoms.

    Also, a bit off-topic but on the subject of families:

    Clin Immunol Immunopathol. 1998 Jul;88(1):96-104.

    Dysfunction of natural killer activity in a family with chronic fatigue syndrome.
    Levine PH, Whiteside TL, Friberg D, Bryant J, Colclough G, Herberman RB.

    National Cancer Institute, Bethesda, Maryland, 20892, USA.

    A family was identified with 5 of 6 siblings and 3 other immediate family members who had developed chronic fatigue syndrome (CFS) as adults. All 8 met criteria for the CFS case definition as recommended by the Centers for Disease Control and Prevention. Sixty-eight blood samples were obtained over a period of 2 years from 20 family members (8 affected, 12 unaffected) and 8 normal controls. All blood samples were tested for NK activity in 4-h 51Cr-release assays and for the number of circulating CD3-CD56(+) and CD3-CD16(+) by flow cytometry. NK activity of the affected immediate family members (cases, n = 8) was significantly lower (P = 0.006, two-sided) than that of the concurrently tested normal controls. The results for unaffected family members were intermediate between these two groups, and the pairwise comparison of unaffected family members to either cases or controls showed no statistically significant difference (P = 0.29, two-sided). No differences were seen between the groups in the absolute number of CD3-CD56(+) or CD3-CD16(+) lymphocytes in the peripheral blood. Familial CFS was associated with persistently low NK activity, which was documented in 6/8 cases and in 4/12 unaffected family members. In the family with 5 of 6 siblings who had documented CFS, 2 of their offspring had pediatric malignancies. Low NK activity in this family may be a result of a genetically determined immunologic abnormality predisposing to CFS and cancer.

    PMID: 9683556 [PubMed - indexed for MEDLINE]
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Men

    I don't know enough about progesterone to comment on it's role.

    ME/CFIDS is similar to auto-immune disease and has some auto-immune components (eg anti thyroid antibodies). All autoimmune disease strike women at higher rates than men (eg Lupus- 90% women). I would guess this is why it appears to strike more women.

    I would rather be a man with ME than a woman. In some respects it is worse- men are expected to push through fatigue and produce. Men's self worth generally is more tied up in this because of social norms and, i think probably, biology.

    I personally don't think that i have gotten any better treatment medically as a man, i have the typical horror stories.

    For me, the main thing is being able to have kids. A man has a bit longer to have kids than a woman. I am 37 w no kids, but am hopeful of getting better in the future and having children.

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