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CFS = Immune Dysfunction?

Seven7

Seven
Messages
3,444
Location
USA
So I was having a conversation with a member and this member was under the impression that because his CFS was not trigger by Virus, the member think he did not have Immune dysfunction.

So I have a question. Doesn't having CFS means that no matter the trigger you will see some deregulation on the cytokines, Viral reactivation are possible and so on???

I was not viral trigger (Mine was gradual) and I have immune dysfunction, I just want to put the myth to rest. What do you all think???

7
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Probably most yes. Thats my opinion anyway. But then not everyone with ME/CFS will have the same illness, so they may not have these same immune dysfunction. This is because of the different diagnosis criteria and the fact that CFS is used as a bit of a waste basket for people with similar problems that are hard to diagnose.

This is a common viewpoint, and it is also my view, though not to the degree that some people take on it perhaps. I think most of us, say ~75% do have the same illness, and the other ~25% have other things. Some others think that we are even more diverse in our true illness and would not agree with my take that ~75% of us have the same thing.

But we just dont know for sure yet. I am suspicious that people without immune dysfunction perhaps dont have the same illness as me, but then I might be wrong about that.

I dont think it is always possible to know the trigger either. My descent into ME/CFS was gradual, but I dont think I was right ever since i had mono as a teen and when i reached a certain point i declines very quickly, so that event may have been triggered by a virus at the time for all i know. I cant quite remember what i had, but i certainly had sore throats alot just before this rapid decline. So, was my ME/CFS gradual or sudden-onset? Maybe a bit of both. Was it caused by a virus? Or maybe even mutliple viruses? Who knows.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Looking at this from the perspective of a viral causation, a viral trigger is not necessary. If you have major spread of virus in tissues, such as entero- or herpes-viruses, then that might trigger ME, but you could get a much slower infection you do not really notice. Then when something else happens, such as an injury or toxin, the immune system is under stress and the virus does a little dance behind the scenes. A viral trigger is not necessary if the virus is already there. A slow or latent infection can still trigger immune issues and without the usual viral symptoms.

From the viewpoint of immune dysfunction a virus is merely opportunistic but may be enough to push you over the edge. A pathogen might be necessary, but the immune dysfunction can be inherited or acquired. Poisoning and injury are two things that can suppress the immune system for a while.

Of course they can combine. Immune deficits might mean an infection can do things it wouldn't normally do, leading to ME. Or that a virus might induce immune deficits, then lead to ME. Or even that they push each other .... start with either a virus or immune deficit, get the other, then they reinforce each other.

Two classes of virus are capable of long latency and are almost ubiquitous in adults - almost everyone caries some form or other of these. They are herpes viruses and enteroviruses. Both can sit latent and reactivate during times when the immune system is weak. Enteroviruses have a special affinity for muscle, herpes viruses for nerves. Enteroviruses are now thought to be able to induce slow infections in muscle too. This family of viruses is more or less related to polio.If you wanted to pick a prime suspect, it would probably be from these two families of viruses.

However I also agree with snowathlete, it looks very much like even strictly defined patients might represent two different diseases. Biomarker research will eventually tell us if this is the case.
 
Messages
445
Location
Georgia
So I was having a conversation with a member and this member was under the impression that because his CFS was not trigger by Virus, the member think he did not have Immune dysfunction.

So I have a question. Doesn't having CFS means that no matter the trigger you will see some deregulation on the cytokines, Viral reactivation are possible and so on???

I was not viral trigger (Mine was gradual) and I have immune dysfunction, I just want to put the myth to rest. What do you all think???

7

Some people have viral triggers; some people have traumatic, or emotional triggers, and some people have gradual onset. But they all have immune dysfunction. Which should really lead us the likelihood that this is some kind of genetic predisposition, and not a transmissible pathogen.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Do we have enough data comparing the non-viral onset to the viral to answer the question?

I've not seen (for example) the work of Dr Klmas split into the two groups. It may be there buried in a paper of course and I've just missed it.

The only research I remember that split the two groups was financed by one of the two patient groups and showed gene expression was different. A while back now so would be hard to find again.

If we did compare the two groups immune parameters maybe they would both be abnormal but different?

Also given the poor level of diagnosis and the different criterias used then there are sure to be patients with immune parameters different from well defined CFS ones.
 

Enid

Senior Member
Messages
3,309
Location
UK
I must agree with alex's thinking here @5 especially - just shows how complex the situation is too, though personally I'd go for enteroviruses setting the cascade in motion allowing expression of latent viruses.
 

lansbergen

Senior Member
Messages
2,512
Some people have viral triggers; some people have traumatic, or emotional triggers, and some people have gradual onset. But they all have immune dysfunction. Which should really lead us the likelihood that this is some kind of genetic predisposition, and not a transmissible pathogen.

I add infectious protein like PrPsc.
 

Seven7

Seven
Messages
3,444
Location
USA
I guess what I am trying to say, I would hate patients not to check their immune system because they did not started with a virus. That is a wrong assumption and I am testimony of that. My onset was gradual and I have my immune system in very bad shape. All others I have referred to Dr Rey had immune dysfunction also and some did not start with viral onset.

So in my opinion CFS = you have to assure that you NK lare at a decent levels/activity, check your T and B cells..... Look for viral reactivation and all the other immune abnormalities known to CFS.
 
Messages
36
Location
NY, USA
I agree with what Alex says, but he still emphasizes the point that a trauma must activate the disease. I don't think anyone out there can get CFS without viral infection at some point, and I think usually the viral infection coincides with the onset of CFS symptoms. I've heard many times of a trauma, such as knee surgery, triggering the symptoms as well. I strongly believe that we do suffer a genetic predisposition, in that we are prone to systemic and recurring viral infection because of our genetic makeup.
 
Messages
24
Personally I suspect ME/CFS is more likely to be autoimmune - that is the immune system is overactive - than due to a weak immune system. Like other people here I've noticed I rarely get colds or flu when I'm in a severe bout of ME, and - most significantly - when I had a serious bacterial infection lasting several months my ME completely vanished for the first time in twenty years, and remained totally absent for six months or so before gradually slipping back.

I suspect what happened was the prolonged infection had the same effect as taking a steroid and somehow damped down the autoimmune response for a while, and this has totally convinced me the problem is indeed autoimmune.

As to why some people report the opposite problem, I don't know, but clinically I don't see how both immune-compromised and immune-overactive people can both have the same basic illness - and I suspect in the future one of us will be found to be suffering from some other "new" disease that gets a different name. Which raises the question - is ME/CFS currently a "disease" or a symptom cluster?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I also feel that the immune system is overactive....I haven't had a cold , flu, sore throat etc..since I became sick almost 8 years ago. Also a couple years ago I had the flu shot and within hours I was having flu-like symptoms which I totally feel was because of my over active immune system attacking the vacine.
I work in a pharmacy and am around sick customers constantly but never catch anything...knock on wood.
 
Messages
36
Location
NY, USA
There's no doubt CFS/ME is a symptom cluster as you say. autoimmune diseases are typically difficult to diagnose and can include many non-specific symptoms which mimic (or are synonymous with) CFS symptoms, such as fatigue, cold symptoms, fever, muscle aches and spasms etc. however, autoimmune diseases eventually manifest as pretty characteristic symptoms, because they tend to correlate to genetic markers in which the deficiency can be explained. I think many people in early stages of autoimmune disorders may be classified as CFS sufferers, but a more precise label will eventually be applied to them. Looking at the family history is extremely important because autoimmune diseases are often passed down, reinforcing the theory that sufferers are genetically predisposed.
 
Messages
36
Location
NY, USA
if its due to a virus, and the virus remains active for a prolonged period in your body, it probably means our bodies are constantly fighting that virus unsuccessfully and so our immune systems are constantly overactive.
 
Messages
24
There's no doubt CFS/ME is a symptom cluster as you say. autoimmune diseases are typically difficult to diagnose and can include many non-specific symptoms which mimic (or are synonymous with) CFS symptoms, such as fatigue, cold symptoms, fever, muscle aches and spasms etc. however, autoimmune diseases eventually manifest as pretty characteristic symptoms, because they tend to correlate to genetic markers in which the deficiency can be explained. I think many people in early stages of autoimmune disorders may be classified as CFS sufferers, but a more precise label will eventually be applied to them. Looking at the family history is extremely important because autoimmune diseases are often passed down, reinforcing the theory that sufferers are genetically predisposed.


When you say an autoimmune disease can "mimic" CFS that's not really what I mean. I think CFS/ME is autoimmune itself. The fact so many people report an absence of other infections while in the grip of ME is, to me, very significant. Mightn't some sort of autoimmune issue also give rise to the mitochondrial failure some theorise is another major component of ME?

If it was caused by a weak immune system - as is AIDS - then wouldn't its profile tend to be also more like AIDS? Wouldn't we see more fatalities through opportunistic infection? More uncontrolled CMV? More weird cancers? Weight loss? To me the whole look and feel of ME symptomolgy is more like autoimmune problems - such as Lupus - than AIDS.

Isn't MS thought to be autoimmune? And the similarity between MS and ME has been noted many times.
 
Messages
24
if its due to a virus, and the virus remains active for a prolonged period in your body, it probably means our bodies are constantly fighting that virus unsuccessfully and so our immune systems are constantly overactive.

I'm not convinced by that. A healthy immune system doesn't attack itself and so wouldn't produce CFS symptoms. Isn't it more likely that those with a longterm viral problem are suffering an illness due to the virus itself. which while resembling ME isn't actually ME?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The autoimmune and autoinflammatory models of CFS are still valid competing models. CFS itself is almost certainly a cluster of diseases.

Viruses are some of the most common triggers of autoimmune conditions. Autoinflammatory conditions can be triggered by all sorts of things, from metabolic to immune. Pervasive latent viral infection is somewhere considerably above 80% in our population. It might be more like 100%. Nobody knows the full effect of this. Metabolic, immune and inflammatory issues are likely to be consequences.

When part of the immune system goes down, part becomes increasingly activated. The immune system operates in what are called axes (plural of axis, not the weapon/tool). Different parts suppress other parts, or boost other parts. When one part goes down, everything it supports goes down a bit. However, everything it suppresses gets stronger due to lack of suppression.

So both hypo- and hyper- immunity can occur in the same person. The immune system is not one big solitary lump. Its a network. Various factors may also boost or suppress various parts of immunity. A latent viral infection will have an impact, but there are other issues that are known including increased translocation of bacterial toxins from the gut. Viruses are also not the only pathogens associated with CFS-like conditions. Lyme disease is one, though now its apparent that Lyme is more a family of diseases, not one single disease. That is one of the factors that can stuff up a Lyme diagnosis.

There is considerable evidence of viral infection, autoimmune responses, autoinflammatory responses, inflammation, immune abnormalities, oxidative stress, metabolic issues (including mitochondrial), cardiac dysfunction, CNS dysfunction, muscle and vascular dysfunction. Models typically focus on part of the whole, or vaguely point to a lot of parts but have one central theme. Most of these factors operate in loops. Problems in one area can cause problems in another. With apologies to Isaac Asimov, when you point at a circle, how do you know when you are pointing at the start of the circle?

Alexander the Great faced a problem like this with the Gordian Knot, according to legend. In myth the Gordian Knot was a massively complex tangle of threads. Nobody could untie it. Alexander the Great didn't bother. In legend he drew his sword and cut the knot. Its a metaphor for thinking outside the issue. Everyone promotes their own little bit, their own little perspective. I keep waiting and searching for that one little bit that will completely transform how we view all this. Nobody knows when that will happen, or in what discipline.

As far as some cases of CFS (not so far as I am aware strictly defined ME) we do have examples of AIDS like problems. Some are diagnosed as having various immune disorders that are typically found in AIDS. A few cases of Karposi's sarcoma have also occured apparently. In the 1980s there was a brief period in which ME was called AIDS minor I think. This was because it looked like AIDS but did not progress like AIDS.

There is no question that most of us with ME have immune deficits. There is also evidence that we have increased immunity. The two positions are not mutually exclusive, even in the same patient.

Bye, Alex
 
Messages
24
The autoimmune and autoinflammatory models of CFS are still valid competing models. CFS itself is almost certainly a cluster of diseases.

Viruses are some of the most common triggers of autoimmune conditions. Autoinflammatory conditions can be triggered by all sorts of things, from metabolic to immune. Pervasive latent viral infection is somewhere considerably above 80% in our population. It might be more like 100%. Nobody knows the full effect of this. Metabolic, immune and inflammatory issues are likely to be consequences.

When part of the immune system goes down, part becomes increasingly activated. The immune system operates in what are called axes (plural of axis, not the weapon/tool). Different parts suppress other parts, or boost other parts. When one part goes down, everything it supports goes down a bit. However, everything it suppresses gets stronger due to lack of suppressoin.

So both hypo- and hyper- immunity can occur in the same person. The immune system is not one big solitary lump. Its a network. Various factors may also boost or suppress various parts of immunity. A latent viral infection will have an impact, but there are other issues that are known including increased translocation of bacterial toxins from the gut. Viruses are also not the only pathogens associated with CFS-like conditions. Lyme disease is one, though now its apparent that Lyme is more a family of diseases, not one single disease.

There is considerable evidence of viral infection, autoimmune responses, autoinflammatory responses, inflammation, immune abnormalities, oxidative stress, metabolic issues (including mitochondrial), cardiac dysfunction, CNS dysfunction, muscle and vascular dysfunction. Models typically focus on part of the whole, or vaguely point to a lot of parts but have one central theme. Most of these factors operate in loops. Problems in one area can cause problems in another. With apologies to Isaac Asimov, when you point at a circle, how do you know when you are pointing at the start of the circle?

Alexander the Great faced a problem like this with the Gordian Knot, according to legend. In myth the Gordian Knot was a massively complex tangle of threads. Nobody could untie it. Alexander the Great didn't bother. In legend he drew his sword and cut the knot. Its a metaphor for thinking outside the issue. Everyone promotes their own little bit, there own little perspective. I keep waiting and searching for that one little bit that will completely transform how we view all this. Nobody knows when that will happen, or in what discipline.

Bye, Alex



Oh very interesting. I appreciate what you're saying about hyper and hypo immune responses co-existing. Very possible this could apply to ME.

I'm not sure about the cluster of diseases though. If we really consider ME/CFS to be merely a symptom cluster then surely it follows we don't "have" it and can't be diagnosed with it? Can you diagnose a symptom cluster? What does it mean even if you do? Wouldn't it be like saying to people with smallpox, measles, rubella, allergic reactions and neurotic skin lesions "Oh yes, you have "fever and rash disease"? Sure, it's a good description, but what use is it beyond that? It just seems to me that ME as a symptom cluster is entirely irreconcilable with the idea of it as a disease that can be diagnosed (as many here say it is). Though I'm prepared to accept this is my short-sightedness (or my brain fog) :)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
CFS is a syndrome, and depending on definitions we know that many, if not most, are misdiagnosed. Even ME is not proven to be one single disease. Each cluster outbreak is probably one disease, but is every cluster the same disease? Nobody knows. CFS definitions are so heterogenous, and patients have such diverse symptoms and course of illness, that it most probably cannot be one disease. Now, does this apply to ME? I regard that as an open question. Many studies now divide strictly defined CFS (probably mostly ME) into two groups with roughly one third to two third split, though in some its more like one quarter to three quarters. So there is reason to believe that ME might be two different diseases. We need more and better science to figure this out.

Diagnostic categories change as the science advances. I predict, based on my current understanding, that in time CFS will fracture into a great many diseases, and ME will fracture into at least two. However, its the science that determines that, not my prediction.