Fear of Transmitting ME/CFS to Partner, A Life Long Decision

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Personally, I believe a high percentage of people are prone to getting ill. I believe one risk factor is having a leaky gut or imbalance or lack of good gut bacteria, and many things in our diet and lifestyle lead to those. Also since many people already have HHV-6, EBV, HPV, HSV-1, candida, etc and are overstressed, I think most of our immune systems are compromised somewhat.

On the other hand, a relationship probably improves your health somewhat. In a good relationship, you will laugh more, be hugged, etc and in most cases, feel more secure financially.
 

Hip

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Personally, I believe a high percentage of people are prone to getting ill.
One study that actually looked at the prevalence of ME/CFS in close relatives of ME/CFS patients found that the risk of developing ME/CFS was 2 to 3 times higher in these relatives, compared to the general population.

To put that in context: the prevalence of ME/CFS in the general population is around 1 in 500. So if the risk is doubled in relatives, presumably the prevalence of ME/CFS in close relatives is around 1 in 250.



The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.

So that would equate to around 1 in 50 spouses also developing ME/CFS.
I and my colleague did some research into family members of sporadic cases of CFS. (Underhill, O’Gorman) We found that patients’ genetically unrelated spouses and partners had an increased prevalence of an illness diagnosed as CFS compared with the community prevalence, with a relative risk of 7.6 - 13.5, (3.2% of spouses had the illness compared with community prevalence of 0.42% and 0.235% (Jason et al 1999, Reyes et al. 2003). Additionally, 6.5% of spouses had idiopathic chronic fatigue
 
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One study that actually looked at the prevalence of ME/CFS in close relatives of ME/CFS patients found that the risk of developing ME/CFS was 2 to 3 times higher in these relatives, compared to the general population.

To put that in context: the prevalence of ME/CFS in the general population is around 1 in 500. So if the risk is doubled in relatives, presumably the prevalence of ME/CFS in close relatives is around 1 in 250.



The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.

So that would equate to around 1 in 50 spouses also developing ME/CFS.
@Hip, I've read this study as well. From what I can tell (and please correct me if I am wrong), this study isn't meant to prove that the patient transmitted their ME/CFS to their spouse, rather it is just an indication that there is a certain percentage of spouses that also get ME/CFS. For example, the patient might've transmitted a common virus (e.g. EBV, enterovirus, etc.) to their spouse, but other factors within the spouse (e.g. genetics) might've played a part in ME/CFS being triggered.

Also, where is the information on the prevalence of the general population getting ME/CFS from?

The odds are probably just as high that your partner will develop cancer or MS or some other serious disease completely independent of ME as that you will transmit ME to her. Then all the problems SickofSickness mentioned would still apply. Are you going to avoid having a relationship because she might develop cancer or MS or whatever and you two would have a difficult time managing two very serious illnesses? Or are you going to forge ahead since the odds are on your side and cope with the situation if your luck turns bad and she develops a serious illness too?

We don't need to make our lives worse than they are by imagining all the worse case scenarios and running out lives as if that is what is going to happen. Yes, there is no guarantee that your partner won't get ME any more than there's a guarantee she won't get some other disease. Life doesn't come with guarantees. You look at the odds and do the best you can.

While you're thinking about contagion.... Have you considered that if you have ME and the commonly-associated immune dysfunction, it is more likely that you will catch something from her that could be damaging to your condition? If she brings home a flu one day and you get it, you could have a major crash. If you haven't had EBV or HHV6 yet, you could catch it from her and your immune system could be unable to put it into latency causing your condition to seriously deteriorate. These are possibilities, not probabilities. Are you going to avoid a relationship with her because she might make you much sicker by exposing you to some infection you wouldn't encounter because you're not out in the world much? I'm guessing the answer is no.

It's all about maintaining perspective. Bad things can happen. What are the odds they will happen? You might kill her in a car or household accident. It's possible. You'd feel guilty if that happened. Are you going to cut off your relationship because that might happen? Again, I guess not. I suggest you don't create trouble where trouble does not exist. Life with ME is hard enough without making unnecessary problems for ourselves.
@SOC, thank you for your insightful post. I've learned a lot from this thread, the most important being that there is no evidence that shows ME/CFS itself is transmittable. Rather, it's the common viruses that can potentially act as the triggering factor that can be transmitted. Even if the virus is transmitted, other factors (varies from person to person) must be in play for the virus to act as a trigger for ME/CFS. In the majority of the cases, an individual that gets infected will most likely not get ME/CFS. This ofcourse is still an assumption as there is still no real proof of what causes ME/CFS. Please correct me if I am wrong.
 

SOC

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@SOC, thank you for your insightful post. I've learned a lot from this thread, the most important being that there is no evidence that shows ME/CFS itself is transmittable. Rather, it's the common viruses that can potentially act as the triggering factor that can be transmitted. Even if the virus is transmitted, other factors (varies from person to person) must be in play for the virus to act as a trigger for ME/CFS. In the majority of the cases, an individual that gets infected will most likely not get ME/CFS. This ofcourse is still an assumption as there is still no real proof of what causes ME/CFS. Please correct me if I am wrong.
That's pretty much the way it was explained to me by multiple specialists. :) Believe me, I questioned them extensively because since I can't work at my chosen profession, the only way I manage to support myself is by tutoring. The very last thing I want is to pass this horrible illness on to a child. At the same time, I was concerned for my then-husband. Every specialist assured me that every indication is that we are no more of a health risk to people around us than anyone else is.
 

Art Vandelay

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I think this idea of a "perfect storm" of conditions may well explain why a virus triggers ME/CFS in a small percentage of people, but not in most people.

Dr Chia actually made a very interesting observation: that those who were inadvertently given immune suppressing corticosteroids during an acute enterovirus infection had a higher risk of developing ME/CFS from that infection.

So corticosteroids during an acute infection would appear to help create this "perfect storm" of conditions necessary for the virus to trigger ME/CFS.
@Hip That's extremely interesting. To cut a long story short, when I first got sick with EBV, I was initially misdiagnosed with tonsillitis and given antibiotics. I quickly ended up with a incredibly ugly and itchy bright purple rash from head to toe. Luckily I saw a (different) more switched-on doctor who theorised that I probably had EBV because penicillin-based antibiotics can react badly with EBV and cause such a rash. Blood tests confirmed that it was EBV.

As the rash was extremely bad, the doctor asked if I'd like try steroids. I was desperately ill and made the (probably) unfortunate decision to agree. (I'm not sure which steroid it was, I remember that I had to gradually reduce the dose on a very careful schedule over about 5 days.) While they had an immediate effect on the rash, I often wonder whether this decision resulted in me developing ME/CFS or at least worsened it.
 
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Hip

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@Hip, I've read this study as well. From what I can tell (and please correct me if I am wrong), this study isn't meant to prove that the patient transmitted their ME/CFS to their spouse, rather it is just an indication that there is a certain percentage of spouses that also get ME/CFS. For example, the patient might've transmitted a common virus (e.g. EBV, enterovirus, etc.) to their spouse, but other factors within the spouse (e.g. genetics) might've played a part in ME/CFS being triggered.

Also, where is the information on the prevalence of the general population getting ME/CFS from?

The study provides the prevalence statistics; interpreting those statistics is another matter.

The way I would interpret it is that a spouse is likely to pick up a ME/CFS-associated virus from their partner, but in most cases, that virus will not cause ME/CFS, because it probably requires other factors operating in tandem with the virus — factors like genetics, environmental toxin exposure or drugs — before ME/CFS is precipitated.

There may also be non-infectious reasons why partners of ME/CFS patients have higher risk of developing ME/CFS: both partners may be exposed to the same toxins in the household or local environment, such as mold in water-damaged buildings (anecdotally mold exposure is linked to ME/CFS) or significant environmental pesticide exposure (proven to increase the risk of ME/CFS by 4-fold).

Like exposure of an ME/CFS-associated virus, exposure to ME/CFS-associated toxins in the home, or environment or area around the home, also increases the risk of developing ME/CFS, and may also help to explain the observed statistics.



The 0.2% prevalence of ME/CFS in the general population is the figure you most often see quoted. Other studies have found higher prevalences, as much as 2%, but a lot depends on how you define ME/CFS (if you have stricter defining criteria, you will find a lower prevalence).

If you search Google Scholar you will find several prevalence studies.
 
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Thank you everyone for your wisdom and knowledge, it's greatly appreciated. I've learned a lot from this thread over the past week. Let see how things play out...

Comments from others is always welcomed.