Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Poll: Viral vs. Non-Viral Onset and Contagious Relationship

Discussion in 'General ME/CFS Discussion' started by md55, Nov 15, 2015.

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Was your me/cfs onset viral/non-viral and if a close genetic/non-genetic family member have me/cfs?

  1. I am female. My onset was viral. I have a genetic famly member with me/cfs or symptoms

    11 vote(s)
    17.2%
  2. I am female. My onset was viral. I DON'T have a genetic famly member with me/cfs or symptoms

    15 vote(s)
    23.4%
  3. I am female. My onset was viral. I have a NON-genetic famly member with me/cfs or symptoms

    4 vote(s)
    6.3%
  4. I am female. My onset was viral. I DON'T have a NON-genetic famly member with me/cfs or symptoms

    11 vote(s)
    17.2%
  5. I am female. My onset was NON-viral. I have a genetic famly member with me/cfs or symptoms

    4 vote(s)
    6.3%
  6. I am female. My onset was NON-viral. I DON'T have a genetic famly member with me/cfs or symptoms

    4 vote(s)
    6.3%
  7. I am female. My onset was NON-viral. I have a NON-genetic famly member with me/cfs or symptoms

    1 vote(s)
    1.6%
  8. I am female. My onset was NONviral. I DON'T have a NON-genetic famly member with me/cfs or symptoms

    1 vote(s)
    1.6%
  9. I am male. My onset was viral. I have a genetic famly member with me/cfs or symptoms

    4 vote(s)
    6.3%
  10. I am male. My onset was viral. I DON'T have a genetic famly member with me/cfs or symptoms

    11 vote(s)
    17.2%
  11. I am male. My onset was viral. I have a NON-genetic famly member with me/cfs or symptoms

    1 vote(s)
    1.6%
  12. I am male. My onset was viral. I DON'T have a NON-genetic famly member with me/cfs or symptoms

    3 vote(s)
    4.7%
  13. I am male. My onset was NON-viral. I have a genetic famly member with me/cfs or symptoms

    3 vote(s)
    4.7%
  14. I am male. My onset was NON-viral. I DON'T have a genetic famly member with me/cfs or symptoms

    6 vote(s)
    9.4%
  15. I am male. My onset was NON-viral. I have a NON-genetic famly member with me/cfs or symptoms

    0 vote(s)
    0.0%
  16. I am male. My onset was NON-viral. I DON'T have a NON-genetic famly member with me/cfs or symptoms

    2 vote(s)
    3.1%
  17. Other. Please explain in thread.

    1 vote(s)
    1.6%
Multiple votes are allowed.
  1. md55

    md55

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    Hello everyone, recently I've been reading a lot of new/old threads on whether me/cfs is contagious or not. From what I can gather, this is up for debate as no one knows the exact answer. With that said, I am curious as to what the statistics are like for members that had a viral onset (i.e. acute) vs. non-viral onset (e.g. those listed by Senior Member HIP, http://forums.phoenixrising.me/index.php?threads/non-viral-cfs.32793/#post-506409) and how that plays a role in whether close genetic family members (e.g. parents and children) and close non-genetic family members (e.g. spouse, significant other or partner with an intimate relationship) also developed me/cfs or symptoms similar to it.

    This poll by no means is meant to find a conclusion, it's just for personal curiosity. Hopefully this poll can also supplement the information found in threads like the ones linked below.
    NOTE: Please make 1 OR 2 selections as it applies to you. If you choose "OTHER", it would be appreciated if you can answer the three questions indicated below in a posting within the thread.

    http://forums.phoenixrising.me/inde...y-member-me-cfs-prevalence-poll-take-ii.5693/
    http://forums.phoenixrising.me/index.php?threads/is-cfs-contagious-how-can-it-be-transmitted.41205

    For all those that voted, maybe also give some detail in your post on the following:
    1) Gender
    2) Summary of onset (e.g. viral vs. non viral vs. other)
    3) Summary of close family members genetic/non-genetic that have developed me/cfs or similar symptoms
     
    Last edited: Nov 15, 2015
  2. msf

    msf Senior Member

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    I am a male. My onset was bacterial. I had a genetic family member with ME symptoms.
     
  3. SOC

    SOC

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    I had a very sudden onset flu-like illness that I look at as the onset of my ME. My daughter had the same viral illness within 10 days, so it looks like she caught that virus from me. OTOH, quite a few other people were exposed to both of us at that same time and none of them developed ME.

    I'm not convinced that a specific pathogen caused our ME. I'm not even sure I wasn't having ME-like problems before this very sudden onset flu-like illness, but this particular pathogen was the straw the broke the camel's back. I'm more suspicious of a genetic weakness that when added to whatever virus hit us eleven years ago resulted in a chronic illness for any of a number of possible reasons -- immune disruption from a particularly problematic virus, diminished ability to clear viruses, something autoimmune, who knows?

    I am fairly confident that the form of ME that exists in at least 3 of my family members is largely pathogen-mediated. That is to say, many of the symptoms are caused by poorly controlled infections and can be improved by treating those pathogens. Are they the cause of ME? Probably not. Do they cause some of the worst symptoms? Probably. Am I worried about infecting other people with ME? No. After eleven years, no one exposed to any of my family members with ME has developed ME (except me and my daughter). If there are pathogens involved, they are either so common that people are frequently exposed and are able to control them, or they're not easy to transmit.
     
    A.B. and Hutan like this.
  4. md55

    md55

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    100 plus views already, this is great. Thank to those who have responded. If everyone participates in the poll, it would be greatly appreciated. Poll responses remain private.
     
  5. Mary

    Mary Senior Member

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    Southern California
    @md55 - I don't know if mine was viral onset or not. Looking back, I believe I had a low-grade EBV infection for quite awhile, never diagnosed at the time. However, I had very slow onset CFS/ME, gradually declining over a 13-year period. So I don't know how to answer your poll, otherwise I would. I don't have any relatives with CFS/ME.

    eta: I just voted "other" in the poll. Again, I don't know the cause, viral or otherwise. I suspect that long-term severe stress (since childhood) did a number on my immune system and made me perhaps susceptible to something. I am female, as you can tell by my name of course, and have no relatives, genetic or otherwise, who have CFS/ME.

    I think it would be good to ask if any non-genetic relatives have CFS/ME because that could raise the question of transmission. However, FWIW, my now ex-husband does not have CFS/ME.
     
    Last edited: Nov 16, 2015
    EsmeDolce likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    @md55 I am not sure how to answer your poll as I had believed my onset was viral due to having severe mono/EBV ten months before getting ME/CFS. However, I was completely recovered for those ten months and now believe the actual onset was mold/mycotoxin but my immune system was already weakened by EBV and other prior hits. No one else in my family (genetic or non-genetic) has ME/CFS or any type of chronic illness.

    How would I respond?
     
  7. jess100

    jess100 Senior Member

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    I have answered (female, viral, and non genetic family member with symptoms) However, it's possible the Babesia caused the EBV virus to re-emerge. I find it hard to believe I suddenly got EBV at my age. It's much more likely I was exposed to it as a teen-and it was dormant until the Babesia, Anaplasmosis, etc.
    So it's possible it's actually bacterial-not viral.
     
  8. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    My answer is also not straight forward. I had an illness, that did not appear to have been contagious, but was severe, flu-like. It followed a week of birthday celebrations, w/ high alcohol, fat, sugar, stress. No one else got ill. My acupuncturist postulated that my combination of herbal and lipid supplements assaulted my already overloaded liver, leading to the vomiting and ensuing illness. (I've had this affect since, it's a reasonable explanation). I suspect that there was virus released in this episode I don't remember ever being so sick.

    I then felt *chronically fatigued* for 3.5 years, until sun stroke + severe stress flattened me, from which I've never recovered.

    I have 1st degree relative on each side w/ MS. Not ME/CFS, but maybe, since ME is sometimes called MS Lite.

    @md55 ETA: I've selected #1 in poll, due to the MS. If you feel this is inaccurate, let me know, I'll change it.
     
    Last edited: Nov 16, 2015
  9. md55

    md55

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    Thanks for your input Mary, Gingergrrl, Jess100 and ahmo. Despite my efforts, it's difficult to come up with a poll to cover an illness that has so many potential factors contributing to it. I was hoping the options I've provided would cover the majority of those with me/cfs. I've added a last resort option "Other" for those in similar situations to yours so that they can chime in within the thread by answering the 3 questions (gender, onsest type and whether family members are experiencing symptoms). Maybe you can edit your posts to have the 3 questions answered if you haven't done so already. Thank you for your contribution.
     
    Last edited: Nov 15, 2015
    ahmo likes this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    @md55 Thanks and I voted in poll as female, viral and no genetic family members with ME/CFS. However I also have no non-genetic family members with ME/CFS either (like my husband) but couldn't figure out if I can vote twice?

    ETA: I just figured it out and changed my vote that I have no family members (genetic or non-genetic) who have ME/CFS i.e. no one has caught it from me. However, I now believe the final trigger in my case beyond viral re-activation was mold/mycotoxin if I am giving a full, complete answer.
     
  11. Snookum96

    Snookum96 Senior Member

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    Ontario, Canada
    I voted female, non viral with no ill family members.

    Lately I've been wondering if I've been misdiagnosed though. My symptoms seem so random and my memory sucks. I'm overwhelmed just trying to figure out what my symptoms are at this point.

    Would be interesting to see if those with non-viral onset were gradual onset or sudden onset. Mine was gradual and mild at first until a physical trauma caused sudden increase in number and intensity of symptoms.
     
  12. ukxmrv

    ukxmrv Senior Member

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    London
    I've got both genetic and non-genetic family members with ME so chose both options.
     
  13. stridor

    stridor Senior Member

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    Powassan, Ontario
    My onset was triggered by removal of amalgam fillings which pushed my mercury loading up. I also had a couple of infections (HHV-6 and mycoplasma) set up residence but my sense is that this happened after. I have siblings on the CFS/FM continuum.
     
  14. sorin

    sorin Senior Member

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    I think would be interesting to have a poll that will ask also "Did you have risky sexual behavior?" - that would give a hint about the possibility that CFS is a STD.
     
    herpesbaby and picante like this.
  15. Martial

    Martial Senior Member

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    Ventura, CA
    With how rare ME is, it always surprises me to hear when multiple people in the same genetic/non genetic family also are diagnosed. To the OP and Poll Question. I believe I heard previously that beyond a possible acute infection stage, the spread of ME is not really heard of. Perhaps if there was an entero virus, or sexually transmitted lyme disease as theory this would be possible?
     
  16. Denise

    Denise Senior Member

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    It would be interesting but I am not sure how it would explain why children develop ME before they have engaged (or had a chance to engage) in sexual behaviour.
     
    CantThink likes this.
  17. Mij

    Mij Senior Member

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    I had a sudden viral onset but I'm unsure whether it was the actual virus that led to develop M.E since I was functioning fine until I received several vaccines one month after the initial onset.
     
  18. SOC

    SOC

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    Nor does it fit with the known patterns -- mostly isolated cases, parent-child cases, outbreaks in groups that are (mostly) not sexually involved, relatively few sexual partner pairs. That isn't to say that some pathogens found in PWME are not sexually transmitted. In fact, some likely are. But the theory that ME/CFS is, in and of itself, an STD just doesn't hold water. The ME/CFS population would look very different than it does if ME/CFS were an STD.
     
    Mary and Valentijn like this.
  19. Gingergrrl

    Gingergrrl Senior Member

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    It seems very unlikely to me the ME/CFS is an STD b/c if it was than the spouses and partners of those with ME would be the most likely to become infected (vs. someone who had a one-night stand) b/c the spouses/partners would have regular on-going sexual contact. Also if it was contagious by saliva than children or others in the home who share food and drinks would catch it.

    With the variety of triggers (vaccines, mold & biotoxins, bacteria, viruses, amalgams/mercury) that all lead the to the same end-point, I don't see how it could be an STD.
     
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  20. md55

    md55

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    @ukxmrv do you think you can provide some details as to how your genetic (children?) and non-genetic family member (spouse?) also came on with me/cfs?

    @Martial I have read studies from Dr. Underhill that a patient isn't usually contagious during the chronic phase of their illness. The following quotes are from one of Dr. Underhill's articles "In sporadic ME/CFS transmission may be possible in the early acute phase and at the onset of a relapse but the chronic phase of the disease does not appear to be particularly infective." and that "the hypothesis that ME/CFS is an infectious disease may only apply to a subgroup of the patient population diagnosed with ME/CFS". The full article can be found in this thread.

    http://forums.phoenixrising.me/inde...tious-disease-by-dr-rosemary-underhill.41116/

    @SOC and @Gingergrrl I agree that I if me/cfs was an STD, the world would be looking at it in a much different way.
     
    CantThink likes this.

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