The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
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Is CFS contagious? How can it be transmitted?

Discussion in 'General ME/CFS Discussion' started by sorin, Nov 12, 2015.

  1. sorin

    sorin Senior Member

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    Hello!

    Based on your personal experience, what do you think is CFS contagious? And I am referring to CFS not to EBV (mononucleosis) which we know it is transmissible through saliva.
    If you think is transmissible, how can it be transmitted? Through saliva, sexually, by air, water, food, etc?
    In case you think is transmissible sexually what is the sexual life of the CFS patient? Can she/he still make sex, and thus put the partner on risk? Even using condoms, that is not 100% safe, and if just saliva is enough to transmit the disease, that is very bad.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    @sorin This question comes up a lot and I do not think anyone knows the true answer as some countries ban people with "CFS" from donating blood and others do not. I have been married three years (together 4.5 years) and my husband has not caught anything from me nor has any other member of my family or close friends.
     
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Gingergrrl is correct to mention blood transfusion ban, such as in the UK. This also includes umbilical cord material from women. Post Viral Fatigue Syndrome (PVFS) a diagnosis that was made in the past before 'CFS' was created, these patients also cannot donate bone marrow, even when dead. So I'd take that on board in terms of potential risk.

    However, there is no real safety information relayed to the public, so it's hard to say. CFS doesn't exist as one entity, it's a collection of symptoms, so in short answer, no CFS isn't contagious or an STD because you can't pass something the CDC created based on an individual meeting criteria of unexplained chronic fatigue.

    However, within CFS are often misdiagnosed organic conditions, some of an ifection based nature, such as Lyme disease (which does have some evidence of transmission). In addition we don't know if ME (trapped within CFS, via 'CFS/ME' that the British created) is involved with pathogens no one has discovered yet. These could be anything from prions, bacterias, viruses and retroviruses. Retroviruses are passed on in DNA to the baby, but this is very controversial issue in 'CFS', as the research is never performed by government scientists, only independent scientists, who then have their careers ruined and their science discredited of any chance of an exogenous retrovirus being associated to CFS. (See Elaine De Freitas, Judy Mikovits). Times may change, and we might in the future see evidence of pathogenic HERV's (Human endogenous retroviruses), being associated to multiple autoimmune illnesses, and also CFS.

    Without the correct cohorts of patients with signs of disease researched in repeat large scale studies (Using Fukuda criteria CFS is insufficient to gather meaningful data on any pathogen found), we can only speculate as to how 'it' is transmitted in CFS (if at all), but this doesn't get us any closer to the facts, because 'it' will never be the same for everyone with a CFS diagnosis because of the heterogeneous nature of the illness.

    In very basic terms if an individual had a diagnosis of CFS, and this person was immune suppressed in a manner science currently didn't understand and was unaware they were harbouring intracellular bacterial infections, then they could pass anything onto others people from Borrelia, it's co infections, and/or viruses such as EBV from kissing for example. CFS patients don't appear to respond correctly to EBV, and EBV is highly contagious as is Chlamydia Pneumoniae, also found in CFS and Lyme sufferers.

    Even today, it was in the press that an estimated 1% of the UK population is estimated to have Mycoplasma Genitalium, which is thought of an an STD. If 'CFS' patients have this infection at a higher rate than the average person, no one knows.

    So anything is possible in 'CFS' in terms of future pathogen discovery, but we should remember that 'CFS' doesn't exist as a single evidence based diagnosed condition, so there will always have multiple reasons behind 'Fatigue' in CFS that may or may not be transmittable.

    As for your question:

    No one knows the answer to that question, until we find out if previously undiscovered infections exist in CFS, and how they work in the human body, it cannot be answered with any accuracy.

    The only evidence I would say exists for this 'risk' in CFS, is quite a lot of folk with CFS diagnosis find out they actually have Lyme disease (Borrelia infection), and on that basis, yes, it may be transmissible, and thus whenever possible, use contraception anyway when engaging in sexual activity, as simple common sense rule whether someone is sleeping with an individual with CFS, or a healthy individual.

    When it comes to sex, I would be careful rather than careless, but also mindful there is no evidence that CFS or ME for some sufferers, is a disease which may carry an additional new to science STD, or an infection passed on to others by airborne contagion such as sneezing. This doesn't mean the science won't change though in the future.

    But as it stands, there is no evidence, so I wouldn't worry. Use contraception and wherever possible, enjoy your life.
     
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  4. Misfit Toy

    Misfit Toy Senior Member

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    I have kissed a lot of frogs....and they are doing fine. I have had boyfriends, friends..you name it around me and they are all healthy as an ox.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    I've made others sick too through my saliva eg drinking out of a glass I drank from (my sister did that before she developed ME/CFS and years later she's still sick).

    One of my boyfriends used to come down with with ME/CFS symptoms after kissing me which would send him to bed for up to a week each time, difference with him is, whatever I was giving him his body could fight it and he'd be back to work a week later till we tried kissing again only to have him get sick again with flu like symptoms eg fever, muscle aches and pains, headache, lethargy. That happened 3 times taking 24 hrs or a little less for him to come down sick after, so we ended up having to have a non kissing relationship as he didn't want to kiss me no more after the 3 time I visited him only to have it happen yet again.

    I myself have found that only partners of mine seem to be susceptible of catching "something" whatever this something is from me if their health already isn't great so hence they are more susceptable then most people to whatever this is. That boyfriend was mobidly obese so wasn't "fit and healthy" one could say.

    So my view is that others aren't at risk unless they are already susceptible due to something be it their genes like my sister or their health being down a bit already.

    As the other said also what subgroup of "CFS' you fall under, ME or not is very relevant to this question as ME is known to occur in outbreaks while just "chronic fatigue" or the like isn't.
     
  6. alex3619

    alex3619 Senior Member

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    I think the general experience is that its not contagious. The science also does not support the view its contagious. There is enough evidence to be suspicious about it being inherited. The pathogens that trigger the disease might be able to trigger it in others during the early weeks of infection, and in some cases longer. Triggering pathogens might be highly contagious, but most will not go on to get ME or CFS.

    One question, as has been discussed, is on blood transmission. There is a substantive percentage of us who got it after a recent blood transfusion. This has never been properly investigated. It might be that nothing was transmitted at all in most cases, but the trauma requiring a transfusion, or the impact of the transfusion was enough. Or there might be pathogens involved. We just do not know.
     
  7. Strawberry

    Strawberry Senior Member

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    There is??? And it hasn't been investigated? It is one of my personal suspected triggers. Blood transfusion, that is... But I also have had a small issue with warts since pre teen or early teens, which makes me wonder if I am just not able to clear viruses as well.

    Curious.
     
  8. alex3619

    alex3619 Senior Member

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    I keep running across references to this. Also there have been several presentations where doctors have found a very high incidence of transfusion patients. As there is potential concern of transmission of something it should have been heavily investigated. Instead it has been largely ignored, just like other leads in this area of research.

    I think KDM was the first I heard this from, and I very briefly discussed this with him at the 1999 Sydney conference.
     
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  9. Strawberry

    Strawberry Senior Member

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    Thankfully I was only able to donate blood once. It would be interesting to find out if any recipients of my blood ever had issues. I truly hope not!
     
  10. sorin

    sorin Senior Member

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    @Gingergrrl I do not understand how they know if the person who wants to donate blood has CFS in order to ban that person. Because there is no blood test or biomarker to put this diagnostic. They rely on that person to declare itself if (s)he has CFS?
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @sorin I think this is a UK law and I do not live there so am unsure of the answer myself. I have never heard of a rule like this re: donating blood in the US.
     
  12. shannah

    shannah Senior Member

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    Canadian Blood Services defers donors with medical histories of Chronic Fatigue Syndrome — even if their condition is not active — because the potential effects on blood recipients are unknown.

    https://www.blood.ca/en/blood/abcs-eligibility
     
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  13. halcyon

    halcyon Senior Member

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    I believe the bans came into place because of the XMRV scare, which obviously is moot now. My understanding is they left the ban in place in the UK anyways. In the US at least, the Red Cross guidelines don't specifically prohibit people with CFS from donating. The closest guideline that would cover us would be the one for chronic illness, about which they say:
    Obviously this means that unless you're in remission you probably shouldn't donate. They do have exclusions for infections as well which would cover many of us that have serological evidence of an active infection.
     
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  14. Denise

    Denise Senior Member

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    Beginning in 2010 (during the XMRV period) a ban was placed in the US on blood donations by people with ME/cfs.
    I believe that it was up to the individual to say that had (past or active) ME/cfs. The US Red Cross was one place that enacted a ban. http://www.redcrossblood.org/news/r...s-statement-xmrv-and-chronic-fatigue-syndrome
    I do not know if the ban is still in place.
    Quite a few ME specialists discourage patients from donating blood because many ME patients have low blood volume or symptoms that are very similar to those of low blood volume.
     
  15. SOC

    SOC Senior Member

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    IMO, it's just common sense that a person with a serious chronic illness of unknown etiology not donate blood. While there is not sufficient evidence of transmissible disease for PWME to be banned outright from donating blood, the risk that we might have a transmissable infection that is not yet known (and consequently not tested for in donated blood) is greater than that of healthy people. It's a better safe than sorry situation. I'd have a hard time living with myself if I found out that many people developed ME because I wanted to feel good about myself by donating blood. The risk is not high, but it's not miniscule, either. If there was a local crisis and donated blood was desperately needed, then the risk/benefit ratio changes and it might be worth the small risk in order to save lives in an emergency, but routine blood donation is another matter.

    If we want to do something to help the general donated blood pool, we might be wiser to work on campaigning for healthy blood donors, or volunteering in some way we can manage such as driving people to donation centers. If we're too sick to do that, we're too sick to be donating blood anyway.
     
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  16. dannybex

    dannybex Senior Member

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    I think if it were contagious, a hell of a lot more people would've become sick by now. Tens of millions in the USA alone...
     
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  17. digital dog

    digital dog Senior Member

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    People are sick of me, but not sick from me!
     
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  18. Valentijn

    Valentijn Senior Member

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    I would only donate blood to doctors or therapists who believe in psychogenic disorders :smug:
     
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  19. SOC

    SOC Senior Member

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    Absolutely true if it were contagious via some casual contact mode. If transmission required exchange of bodily fluids, for example, it would not spread as fast or as widely which might fit the ME picture. That said, it does not appear (based on current data) that there are a lot of spousal pairs with ME, which suggests it is not highly sexually transmissable either. If there's a very long incubation period, or period of very low-level symptoms, spousal transmission may not be obvious, however.

    What seems more likely at this point is that any pathogen(s) involved are readily controlled by a healthy immune system, so only people with immune impairment (for whatever reason) become seriously ill. This fits better with the parent-child pattern we see. Of course, there are multiple other theories that might fit the facts as well. Since it's not clear yet that ME is even a single illness, several different theories of transmission may all be true.
     
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  20. shannah

    shannah Senior Member

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    I've heard lots of stories over the years where whole families become ill. Perhaps it depends on the pathogen/s involved. Some may be more highly infectious than others.

    We just simply don't know at this point.
     

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