I have had CFS for 6 years and my wife just developed it too

[Hip]

Ok, let's research it here and see what the data says.

My survey of ME/CFS patients who got tested for craniocervical instability has a question on ME/CFS onset, and you can see from the pie chart survey results below, only around 15% reported their ME/CFS started after mononucleosis:

Now it's possible that some people with mononucleosis might have just assumed they had the flu rather than mono (since symptoms are similar), and so answered the survey question stating they had a "flu-like illness, gastrointestinal or upper respiratory infection".

Typically it is enterovirus which causes a flu-like illness, gastrointestinal upset or upper respiratory infection, but some mono cases might be mistakenly included in that category.

 

[lenora]

Hi Hip,

I just wanted to say that CCI is not the only reason for developing ME. There are all sorts of conditions, such as the ones I have - Syringomyelia, Arnold-Chiari Malformation, Tethered Cord....that lead us to develop ME/ FMS and so many other problems. I quality MRI is probably the only way of finding out for sure, plus the knowledge of someone who really knows the brain and spinal cord. So many things are missed and that shouldn't happen.

I'm tired of being in pain so much of the time, especially since I suffered a fall that lead to me hitting the piano bench with my back. I have an appt. for PE (myofascial therapy) in about 2 hrs. I'm anxious for it to come as I'm hoping to find some relief.

What do you know about gaining weight when put on too many medications at once? Thanks. Yours Lenora

 

[Hip]

I just wanted to say that CCI is not the only reason for developing ME. There are all sorts of conditions, such as the ones I have - Syringomyelia, Arnold-Chiari Malformation, Tethered Cord....that lead us to develop ME/ FMS and so many other problems.

Yes I know, my survey covered all these related conditions too.

What do you know about gaining weight when put on too many medications at once? Thanks. Yours Lenora

Some meds can make you put on weight. You can Google any med and ask if it does cause weight gain.

 

[lenora]

Yes I know, my survey covered all these related conditions too.





Some meds can make you put on weight. You can Google any med and ask if it does cause weight gain.

That's very true, Hip, but I've already know that so many of these are putting weight on me. It's a matter of which ones are the worst. Unfortunately, they cover a wide range, from lyrica (which hadn't for a long time), to cardiac meds, high blood pressure....keppra, which is suspect is the main culprit, but I need it b/c of my seizures from the Autoimmune Encephalitis. I've cut back on what I think I can. It's a nuisance. Thanks, Lenora.

 

[Pyrrhus]

To bring this discussion back on the topic of spreading ME to unrelated close contacts...

Here is a study that looked at this issue:

Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue within Families of CFS Patients
by Rosemary A. Underhill and Ruth O’Gorman
June 2006 issue of the Journal of Chronic Fatigue Syndrome
https://forums.phoenixrising.me/thr...atigue-within-families-of-cfs-patients.46305/

Excerpt:

Unrelated spouses/partners of the CFS patients were eight times more likely than the general population to have CFS. (Six of 186 spouses and partners, or 3.2 percent of them, were diagnosed with CFS, compared with 0.42 percent for the general population, as calculated in a past community-based study by Jason, et al.)

 

[Pyrrhus]

Related discussions:

ME in families
https://forums.phoenixrising.me/threads/me-in-families.56590/

Is CFS contagious? How can it be transmitted?
https://forums.phoenixrising.me/threads/is-cfs-contagious-how-can-it-be-transmitted.41205/

Fear of Transmitting ME/CFS to Partner, A Life Long Decision
https://forums.phoenixrising.me/thr...me-cfs-to-partner-a-life-long-decision.41317/

Poll: Viral vs. Non-Viral Onset and Contagious Relationship
https://forums.phoenixrising.me/thr...iral-onset-and-contagious-relationship.41262/

The Family Member ME/CFS Prevalence Poll Take II
https://forums.phoenixrising.me/threads/the-family-member-me-cfs-prevalence-poll-take-ii.5693/

 

[Abrin]

To bring this discussion back on the topic of spreading ME to unrelated close contacts...

Excerpt:

Underhill and O'Gorman 2006 said:
Unrelated spouses/partners of the CFS patients were eight times more likely than the general population to have CFS. (Six of 186 spouses and partners, or 3.2 percent of them, were diagnosed with CFS, compared with 0.42 percent for the general population, as calculated in a past community-based study by Jason, et al.)

Daaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaang!

 

[Jjnz]

Daaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaang!

Indeed, so microbiome or virus or something else. One of the research questions on the microbiome site I use is whether you live in the same house as an individual with dysbiosis

 

[Abrin]

Indeed, so microbiome or virus or something else. One of the research questions on the microbiome site I use is whether you live in the same house as an individual with dysbiosis

Maybe. But then again there is a lot of things that could also cause that sort of strange coincidence when you are only talking about a sample size of less than 200.

 

[Jjnz]

true, stress and worry will be factors too

 

[Learner1]

Or, maybe everyone has the same virus?

 

[gbells]

Or, maybe everyone has the same virus?

Viruses. Yes they spread through fluid contact. Multiple viruses have a stronger inhibition effect on the immune system. Until a person develops preventive antibodies they can get ME if they are exposed to a different apoptosis blocking virus than the one they are recovering from.

 

[Wishful]

I expect that some of the extra prevalence of ME among close contacts is simply due to non-ME factors. We don't have a clinical test for ME, so some of those extra cases might not actually be ME. Also, the study was for 186 people, finding 6 rather than the expected <1. I expect that if you took 186 people at random, and gave them questionnaires biased towards finding 'ME' ("Do you feel more tired than you think you should?"), you'd get more than 1 positives.

Since ME can be triggered by infectious agents, being close to a carrier would probably increase the odds of triggering ME. Also, the stress of caring for someone with ME can probably increase the chances of developing ME, so I expect there is some bias towards people developing ME by close relations. Neither of those is a transfer of ME though.

 

[gbells]

I expect that some of the extra prevalence of ME among close contacts is simply due to non-ME factors. We don't have a clinical test for ME, so some of those extra cases might not actually be ME. Also, the study was for 186 people, finding 6 rather than the expected <1. I expect that if you took 186 people at random, and gave them questionnaires biased towards finding 'ME' ("Do you feel more tired than you think you should?"), you'd get more than 1 positives.

Since ME can be triggered by infectious agents, being close to a carrier would probably increase the odds of triggering ME. Also, the stress of caring for someone with ME can probably increase the chances of developing ME, so I expect there is some bias towards people developing ME by close relations. Neither of those is a transfer of ME though.

This is all speculation. If ME is caused by combined virally infected cells, which the evidence suggests is the most plausible mechanism, then it is transmissible in body fluids. Caution should be used. After the initial infectious symptomatic stage which has repiratory droplets treat it like AIDs. Don't donate blood and don't expose family members to body fluids. People who contract chronic viruses (EBV, HHV6, etc) need to not have any blood exposure to additional viruses until they develop protective antibodies or they may develop ME.

 

[ljimbo423]

This is all speculation. If ME is caused by combined virally infected cells, which the evidence suggests is the most plausible mechanism, then it is transmissible in body fluids. Caution should be used.

The truth is anyone (this includes me!) that says x,y or z is the cause of ME/CFS is speculating. There isn't any proof and all we have are our opinions. Which are important but not facts. At least not yet.

IMO, if ME/CFS was caused by viruses that are contagious, than the number of people "catching" ME/CFS from those of us that have it would be much higher.

As far as viruses causing ME/CFS goes, there are many studies that show the amount of active viruses in healthy controls are the same as in those of us with ME/CFS.

Although I understand there are also studies that show more viral re-activations in ME/CFS than in controls. But the fact that there are so many conflicting studies, make it impossible, at this point, to say that one set of studies is true and the other is false.

One of the most convincing studies for that was one done on identical twins. It found no more viral infections or re-activations in the identical twins with ME/CFS, than in the ones without it.

 

[lenora]

Hello Everyone.....I am of the opinion that there is more than one cause of ME. For way over 35 yrs., my husband, children and even grandchildren (the oldest now 20) have not caught anything from me.

Trust me, that was a huge concern of mine, especially at the time of the Lake Tahoe outbreaks. I also have neurological disease that are congenital that I have to worry about passing on. Thus far, no indications. We all handle different virus in different manners in our bodies. It certainly doesn't help to have more than one infection at a time, or no chance to get properly over one before another takes hold. However, when you have small children that's a concern that's impossible to even worry about.

Again, that was a very small study although if someone is primed to get it, I do think it's easier for them. Lenora.

 

[Learner1]

The truth is anyone (this includes me!) that says x,y or z is the cause of ME/CFS is speculating. There isn't any proof and all we have are our opinions. Which are important but not facts. At least not yet.

IMO, if ME/CFS was caused by viruses that are contagious, than the number of people "catching" ME/CFS from those of us that have it would be much higher.

As far as viruses causing ME/CFS goes, there are many studies that show the amount of active viruses in healthy controls are the same as in those of us with ME/CFS.

Although I understand there are also studies that show more viral re-activations in ME/CFS than in controls. But the fact that there are so many conflicting studies, make it impossible, at this point, to say that one set of studies is true and the other is false.

One of the most convincing studies for that was one done on identical twins. It found no more viral infections or re-activations in the identical twins with ME/CFS, than in the ones without it.

So, I had Epstein Barr at age 15. I got ME/CFS after my immune system was weakened, which can happen for a number of reasons, though in my case, it was chemotherapy, 25+ years after the original EBV infection. And, I continued to worsen until I had a positive EBV PCR and was put on antivirals and IVIG, which helped.

These viruses are ubiquitous. They can reactivate to some degree, and smolder along, triggering autoummunity, and sapping the body of resources. People's immune systems wax and wane, depending on stress, nutrient status, other infections, and other illnesses, so at times, they may be more vulnerable, at other times, less.

And, note that we are not welcome as blood donors.

 

[ljimbo423]

These viruses are ubiquitous. They can reactivate to some degree, and smolder along, triggering autoummunity, and sapping the body of resources. People's immune systems wax and wane, depending on stress, nutrient status, other infections, and other illnesses, so at times, they may be more vulnerable, at other times, less.

I agree with most of this. But there isn't any proof that viral re-activations cause ME/CFS, let alone cause ME/CFS to be contagious.

There are so many studies that show healthy controls with EBV, HHV-6, etc. re-activations and yet they have no symptoms.This has been shown with both high antibodies and PCR testing.

It seems like what is scientific fact, is that many healthy people have EBV and other viral re-activations for certain, but no symptoms. There have been dozens of studies showing this.

 

[Jjnz]

I posted this question to "stuff that works", be interesting to see what response it gets. http://url8256.stuffthatworks.healt...uHUVP-2BeDbWdqu8z8zqz-2B33US8K2eSxjMYJ3yac-3D

 

[Wayne]

The phenomenon of "long haul Covid" reinforces what I have always believed...that a severe viral infection can cause some neurological or immune damage from which a person may not recover. Not every Covid19 case is severe, and not everyone with Covid19 becomes a long-hauler.

Hi @geraldt52 -- I recently ran across a remarkable article on a young woman who became a "Covid-19 Long-Hauler". Could have been written by so many members here on Phoenix Rising. Below is the introduction...

‘Tomorrow. Tomorrow I’ll start to feel better.’
Kaitlin Denis, on approaching Year Two of living with covid-19​

"I used to go to sleep thinking: Tomorrow. Tomorrow I’ll start to feel better. I don’t really do that as much anymore. I’m trying to come to terms with the fact that this virus isn’t something I’m about to get over. This might be it. Maybe this is who I am.​

​

I wake up every morning, and I brace myself. What’s it going to be today? I’m what they call a “long-hauler,” where covid takes over your body and won’t go away. Doctors think there might be tens of thousands of us, but nobody really knows.​

​

It’s a medical mystery. It’s like a random grab bag of symptoms. You reach in, and you never know what you’re going to get. How about some nausea and severe dizziness? Or would you prefer a migraine with a side of joint pain? Some issues are constant, like body aches and head-to-toe fatigue, but the weirder ones seem to randomly come and go: ringing ears, sore ribs, heart palpitations, ear popping, numbness in my fingers, excessive mouth watering, lightheadedness, brain fog.​

​

My memory loss is so bad sometimes that it’s like I have amnesia. The other day, I woke up and wanted to put on running clothes. In my head, I thought I was going for a jog and then heading in to work, but as soon as I stood up, my heart rate started spiking, and it was like: Oh yeah. I can’t even walk around the block by myself. I don’t have a job anymore. I’m on disability. What am I thinking?​

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A lot of times I hardly get out of bed. The day never starts or the night never ends. It’s a black hole. I wait for the hours to pass..."​