Theories on CFS/ME

[Ladyliegh]

How many theories are there on where & how we contracted CFS/ME?
Since I have had this 30 years, I have heard many ideas, from government created illness to mono, mold to tick bite.
I had 2 very high fevers when I was young (106 & 105), always wondered if that played a role as well....
What are the thoughts here on the forum?

 

[weyland]

My belief, based on my n=1 which matches the medical literature, is that the disease historically referred to as ME, modeled on epidemic cases, is specifically caused by HEV-B type enteroviruses.

I believe that what has variously been named CFS, PVFS, etc., is similar but not exactly the same as ME. I believe this is caused by various other pathogens, such as EBV and potentially other herpesviruses, C. pneumoniae, Mycoplasma spp., parvovirus B19, Coxiella burnetii, etc.

I believe that there will be some common underlying molecular pathways between ME and CFS, but I also believe that what triggered the disease will matter with regards to treatment and prognosis.

I don't believe that any of these diseases are directly triggered by stress or any other psychosocial factors. I'm dubious about mold as a direct trigger. I think that toxin exposure, such as organophosphates, are a rare but possible direct trigger for what appears to be largely an identical syndrome.

Regarding other onset modes such as injury, surgery, and vaccination, I don't believe these are direct triggers. I think we can potentially tie these back to enteroviral ME and possibly other pathogens. There is a phenomenon known as provocation poliomyelitis, whereby an injury combined with a concurrent poliovirus infection can lead to poliomyelitis. It doesn't even have to be a true infection, it can happen with the polio vaccine as well. The enterovirus research has shown that a small percentage of otherwise healthy people are transiently carrying an enterovirus infection in their GI tract, so I think something similar might happen in ME due to bad timing and incredibly bad luck.

I don't think that gradual onset ME is a different disease. The enterovirus research has shown that gradual onset cases have the same indicators of chronic enterovirus infection as sudden onset cases.

 

[Ladyliegh]

I remember in Oslers web, it was suggested that the virus mutated & changed. Interesting that you used the word epidemic, since that is how it was referred to when I was first diagnosed.
For me mold is the trigger to the worse relapse I have ever had. A year & a half so far, with exhaustion & extreme sensitivity to all kinds of things... plus the brain fog is much worse.
For years I kept up with everything medical I could find about CFS, but it is more difficult to process now, I understand most of what you wrote, but find it hard to respond in medical terms. (My brain use to function much better.)
But let me ask you Weyland, what symptoms are different between ME & CFS?
Thanks for responding.

 

[weyland]

For me mold is the trigger to the worse relapse I have ever had. A year & a half so far, with exhaustion & extreme sensitivity to all kinds of things... plus the brain fog is much worse.

Yeah, to be clear I'm not saying that I don't think mold can have an impact once you already have the disease. I think the immune system changes that occur with the disease cause many of us to become hypersensitive to things that don't bother healthy people. I think mast cells are a large aspect of this and there has barely been any research at all in this area and there really needs to be.

what symptoms are different between ME & CFS?

CFS, by the criteria, is mainly persistent fatigue with immune activation symptoms. ME is mainly neurological symptoms (hearing/vision changes, paresthesias/muscle fasiculations, dysautonomias) and a characteristic negative response to exertion, plus cognitive dysfunction. CFS as described in the criteria requires a prolonged, persistent fatigue state as the main symptom. ME is described as having a wildly fluctuating course, even within a single day, and persistent fatigue often is not what is experienced, rather just intermittent muscle fatigue in response to excess exertion.

Maybe a picture is more illustrative:

[bimg=no-lightbox]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482824/bin/WJM-5-68-g001.jpg[/bimg]

 

[Ladyliegh]

Wow, thank you, I feel so uneducated about this, Vastly different in the long run.
(Although both seem to fit my symptoms)
(I had to look up some terms...lol)
I agree there needs to be lots of research!
Could have saved me from carpal tunnel surgery, 12 yrs ago, which didn't work anyway.
But, originally my symptoms were different 30 yrs ago, compaired to now, as if it evolved...
Example: in the beginning my sensitivity, I noticed I kept the radio off in the car. But I still listened to music & also played guitar &sang. I could still read for pleasure, but still had brain fog & confusion. I wore sunglasses.(Not meaning to understate, I was very sick for a few months, bedridden, slowly functioning later).
Now, I rarely listen to music & cannot read for enjoyment. I haven't played or sang in a few years. Light inside bothers me now. I rarely go out, but daylight makes me feel like a vampire. Not to mention allergies, which are horrible.
I can get worn out just taking a shower now.
My symptoms are not changeable in a day, but I always had problems overdoing physically. Because at first I was like everyone else, I pushed myself & tried to overcome it. But I realized quickly it made me sicker. I learned to pace myself & focus on what I could do.
Every relapse was a bit different, with new symptoms, I use to go to the Dr. constantly, trying to understand & figure out how to get healthy, Now I only go when I have to. They can't help me, as my nurse practitioner said "You probably know more about it than I do."
They ignore or disagree with my ideas for treatment. They only want to give me antidepressants... (Which I refuse to take)
The only meds I get that actually help, are Lyrica & Flexeril. I would prefer not to take them, but am glad for something that helps with pain.
And Yes I would like some cheese to go with my whine.
(Sorry to go left field from original topic)
Ty for the info.

 

[Paw]

I'm not as well read as Weyland when it comes to the literature, but my personal experience leads me to include stress as a possible trigger -- for some of us.

While I am aware of possible infection events and even injuries going back decades, my long-term symptoms (neurological, digestive, energetic, muscular, etc) were best described as run-of-the-mill bad health.That is, they did not prevent me from attempting to lead a full life.

It wasn't until ten straight years of chronic severe stress culminated in a sudden systemic physical breakdown that I joined the ranks of the "diseased," where I've remained the past six years.

Even though I've been fortunate enough to eliminate most stress from my life (e.g., accepting early retirement), and even though I'm a relatively happy individual (as long as I can lie down whenever needed), my disease patterns persist. Pain is the main stress now, but I've discovered enough techniques to manage it so that I can look forward to some daily pleasures.

So, anyway, it's hard for me to imagine such a clear physiological breakdown occurring had it not been for the severe chronic stress pushing my underlying array of physical problems over the cliff. But I could be wrong.

 

[Ladyliegh]

I completely agree, Stress is one of the worst triggers for CFS. I am sure it contributed to my first illnesses & subsequent relapses.
When my Dad died a few years ago, it was a stressful time, I ended up catching a flu & was sick for months...
So if I am hearing the responses properly, you both feel CFS/ME is a unlucky combination of a virus exasperated by other factors.?
From the beginning I felt it was a blood/brain infection, but the epidemic in the early years, made me wonder about the contagion of it.
There were cluster areas where there were large numbers of people sick with CFS. The CDC still refused to acknowledge it at that time. Now we never hear about large groups in areas sick with CFS, no one uses the word epidemic. But I bet someone at the CDC is still tracking the cluster areas & not telling us about it.

 

[weyland]

(Although both seem to fit my symptoms)

That's common for many people, hence the overlap in the picture above. But the symptoms of CFS fit with dozens of other diseases as well. That's why there is a laundry list of exclusionary conditions a mile long in the original CFS criteria.

To clarify, what I'm saying about stress is that it's not a direct trigger in my belief. I don't believe stress in and of itself is enough to cause the disease. Of course it is likely a factor for some, but you can find many people who were otherwise completely happy and healthy when suddenly struck down with the disease, which means that stress has nothing to do with the disease. Stress is a host factor, along with things like genetics, nutrition state, race, gender, co-morbid conditions, etc.

Now we never hear about large groups in areas sick with CFS, no one uses the word epidemic. But I bet someone at the CDC is still tracking the cluster areas & not telling us about it.

This is something that interests me greatly. From the early 1900s until the early 1990s, there were numerous published outbreaks throughout almost every decade. Then in the early 1990s, within a few years of the creation of CFS, they suddenly stop. Do epidemics of the disease really just no longer happen, or did medicine just stop caring about it because it became trivialized by the creation of CFS?

 

[Ladyliegh]

My perspective is different since I have had this since the mid 80s. But I do believe this is an ongoing epidemic. But thanks to idiots saying it is all in our heads, some valuable insight into CFS has been lost. The most important information comes from those who are sick with CFS/ME (whatever) ..
When Doctors decide not to listen to their patients, how can they know anything?
How can they help us without listening & believing what we say. They still argue about what to call it.. it is an enigma, unsolvable for now, but if there is enough money at the end, it will be solved for a price. Right now there are plenty of people with CFS, who will pay to be well.
I know that this horrible illnesses has invaded numerous lives & families, it is misunderstood & misdiagnosed.
But it most certainly is an epidemic!
It is most likely contagious to a point.
When I was first so sick, a friend came to visit me, not long after he became sick & later he also was diagnosed with CFS.
I Think the initial illnesses is contagious, but I have no proof, only this experience.
My youngest son most certainly has this too.
Since I was diagnosed with it before he was born. My oldest son is healthy.
They won't say it is an epidemic without proof, so without proper diagnosed tools, it can't be proven.
If they finally get a blood test for it, we will see cluster areas, but people move too...

 

[Sidney]

This may be a crazy idea:

Because I was confused, I've been looking at various criteria for both CFS and ME, for some months now, from many different organisations. (ICC, OMF, OMI, NIH, NCBI, the Norwegian group, etc). No clear conclusion , but I thought that the ICC makes the best case.

2 Weeks ago I entered a bad PEM crash, as happens sometimes. It occurred to me:
Couldn't one have both diseases? I think that basically I have CFS; I'm not too bad as long as I take my meds, can stay at home and lie down nearly all the time - with short bouts of getting up to do a chore, get a meal, etc. I cannot go out in the evening, or have my closest friends visit, for more than 1-2 hours.

But if things seem better, I go out for a little constitutional walk, and if I go too far - or even do anything requiring my mind for more than a couple of hours - I go into crash with all the ME criteria, in spades.

It is a grey, fluctuating, set of conditions, and I wonder if we are right to rigorously discriminate between them?

Apologies if this post is a time-waster: I don't have the scientific background or experience of most members here!

(I have been diagnosed with CFS - but it is a CFS clinic, who I think are not interested in CFS/ME difference. I first went there 1 1/2 years ago, after 4 years of diagnosed other autoimmune diseases).

 

[Ladyliegh]

As Weyland, said "It is common for people to have symptoms for both CFS& ME."
As it shows on the chart/picture they tend to cross over, with symptoms.
I had always assumed they were the same thing, it is confusing... Regardless I am sure they are related, also Fibromyalgia is possible with some of the pain symptoms.
My brain hurts trying to figure it out...
It is never a waste of time to learn & share info.
I feel kind of stupid for never checking out forums about CFS/ME, there is so much more good useful information on forums. I have mostly just read news & articles about CFS.
There have been sooo many changes in the 30 years since I was diagnosed, it boggles the brain. CFS, ME & Fibro, all seem related to each other, but who knows what the future will bring.
I am sorry for anyone who has to struggle with these illnesses, it makes life so difficult. But I am living proof that you can survive for many years with CFS. Some years were better than others, but for more than half the years, I was functioning at 50 to 75%. That is better than now, I am having a bad relapse.

 

[Rob Rainford]

I had 2 very high fevers when I was young (106 & 105), always wondered if that played a role as well....

Same here. I recall a childhood blighted by illness and put it down to a weak immune system.
Did you have inoculations as a baby?

My ME/CFS really seemed to start after an injection for Hepatitis B before I went on holiday 10 years ago.
It may be nothing but I'm just trying to fill in all the blanks while looking for an answer.

 

[Ladyliegh]

Oh, yes, Rob, I may have had a few extra since I lived in Jamaica for a year when I was 9. But we moved around a bit too, I remember a Dr. telling my Mom that I was getting sick so often, because my system had to get used to new germs every time we moved. The 60's&70's, water supplies weren't tested the way they are now.
I didn't know much about vaccinations, until I had kids & then I was frightened for them.
I have wondered for many years if CFS is a "natural" illnesses. It is curious...

 

[Paw]

but you can find many people who were otherwise completely happy and healthy when suddenly struck down with the disease, which means that stress has nothing to do with the disease.

Well, it means that stress had nothing to do with their disease. It doesn't prove anything universal unless one is convinced that "the disease" is necessarily caused by identical factors in all cases. From what I've seen and read, I tend to think the opposite is true.

 

[Ladyliegh]

I believe Weyland ment the initial first illnesses of CFS.. The onset.
From the beginning, stress is a major factor.
If nothing else, just the fact that you aren't getting well causes stress & more stress trying to get a diagnosis. Then even when you know you have CFS, it is stressful because there is no set cure or any guarantee of getting well. Not to mention the upheavals in your career, family, pretty much every aspect of your life is turned upside down. Then with a foggy brain, exhausted body & bizzare symptoms, you (not your Dr.) have to figure out what you can do to manage it & pray for recovery. With the added fun of potential relapses.
The 2 main triggers for relapse, for me have been stress & illnesses. (Now mold exposure)
Are we having fun yet ?
Years ago I did research about stress, you are more likely to get sick or have an injury, when you are stressed. (Like moving, divorce, death, job loss...)
Neither stress nor depression Cause CFS,
but can be a catalyst for symptoms getting worse.

 

[Rob Rainford]

Oh, yes, Rob, I may have had a few extra since I lived in Jamaica for a year when I was 9. But we moved around a bit too, I remember a Dr. telling my Mom that I was getting sick so often, because my system had to get used to new germs every time we moved. The 60's&70's, water supplies weren't tested the way they are now.
I didn't know much about vaccinations, until I had kids & then I was frightened for them.
I have wondered for many years if CFS is a "natural" illnesses. It is curious...

Thanks Ladyliegh,

I recall the lead piping for water supplies into the home. I also recall cattle being burnt in the open not far from our home during a foot and mouth outbreak in the 70's. So many events that it's hard to say if any may be the cause.

 

[Merida]

@Rob Rainford I had several nurses in my support group that definitely pinpointed the Hepatitis B vaccine as the precipitating cause of their illness.
Stress: Even thinking about getting a shower causes me stress. " Stress " so depends on how the individual is interpreting and responding to specific incidents/activities. Eight years before developing CFS my then 14 year old daughter was in a terrible car accident with shattered femur, head trauma, 2 broken ankles, etc. etc. Terribly stressful by any standards. But I remained well. It was a chiropractic injury to my neck and pelvis that started everything. I have realized since that my structure probably predisposed me to serious injury. ( i.e. Mild scoliosis, and more)

@weyland Your comments about the enterovirus are interesting. My son developed this after a well documented EBV infection in 1986 ( age 5), but certainly there could be other undetected viruses.

Think we need to appreciate that many viruses and many diseases have a very broad spectrum of symptoms and presentation. EBV can hit the thyroid, or autonomic system, or many other sites. Chiari Malformation can present as only head ache, or can present like CFS/ ME/ FMS.

For me, there is no doubt about the cause : chiropractic injury causing sacrum and neck instability and direct or indirect injury to the central nervous system. Fixing the problem is a huge can of worms.

Such important, thoughtful comments on this thread. Thanks to all.

 

[Merida]

How many theories are there on where & how we contracted CFS/ME?
Since I have had this 30 years, I have heard many ideas, from government created illness to mono, mold to tick bite.
I had 2 very high fevers when I was young (106 & 105), always wondered if that played a role as well....
What are the thoughts here on the forum?

Yes, my son had EBV with very high fever at night for a week. He was 5. But now at age 36 he is having fatigue and a bunch of odd health issues - like chronic throat-clearing.