Revisited - Does ME/CFS more closely resemble an autoimmune disease or a chronic infection?

[Jesse2233]

@Woolie is it your understanding that these autoinflammatory disease cause issues independently of autoantibodies? Might proinflammatory cytokines be causing the damage?

 

[Jesse2233]

@Hip I think @frederic83 is referring to interferon and post-interferon syndrome (which is strikingly similar to ME)

 

[Woolie]

@Woolie is it your understanding that these autoinflammatory disease cause issues independently of autoantibodies? Might proinflammatory cytokines be causing the damage?

Yea, I'm not that clued up on the causes,. The accounts I've read (which probably only cover some of these diseases) focus on the chain of events that occur when the immune system is stimulated. The idea seems to be that there is an abnormality occurring somewhere within this chain, so that certain parts of the inflammatory response don't get switched off or modulated when they're supposed to.

The accounts I've read say that the abnormality affects the innate immune system. So not to do with autoantibodies then. Proinflammatory cytokines are definitely involved.

 

[Hip]

Yes on the face of it they do. I would still be hesitant to hang a unifying theory of chronic enterovirus infection on these reports without a published study / data set or at least other clinicians replicating them,

I agree. My analysis is only an amateur effort, and I would not trust it myself without the input from experts in the field. But I wish some experts would take some time to think about this.

 

[mission impossible]

That could be consistent with autoimmunity triggered by an infection as well.


That just means the immune system is activated, no?

Yes, but all I know is that one particular set of symptoms of malaise/dry sore throat/cough that I have is kept at bay whilst I take a low dose valaciclovir which comes back in about a day, everytime I try and stop taking valaciclovir and then symptoms disapear again when I restart, been like this last 6 months since I started taking the valacivlovir. Tests i have say it is suggestive of reactivated ebv, hsv1, cocksackie B, C.pnenmonaie.

The Question is
Is this happening because the valaciclovir is suppressing the EBV or HSV1 just enough so that the immune system then settles back down again(so the sore throat/cough/malaise disapear) ?
OR
is it the medication that is having an anti-inflammatory action on the immune system?

It certainly feels like I have an infection and the valacillovir knocks it, but how would I know.

Also there is the hypothesis out there that auto immune diseases are caused by a chronic infection
such as Chlamydia Pnuemonaie in MS. This has not yet been properly proven or disproven.
Everybody has viruses. Finding viral DNA/RNA just means patients are no exception. Or do you have something specific in mind?

I understand that IgG antibodies just mean that the body has encountered a particular pathogen before and is keeping these antibodies around in case the pathogen visits again.



That could be consistent with autoimmunity triggered by an infection as well.



Yes we do have doctors who think infections are the problem, but: they can't agree which infectious agent is to blame, and there isn't any convincing published research. I would say that the fact that after decades we still have so little convincing evidence infections are playing an important role besides triggering the illness suggests this idea could be a dead end, or that it applies only to a subset of cases.

A big problem with the infectious hypothesis is also that old people don't seem to get this illness, when they are more susceptible to infections.

 

[Jesse2233]

Yea, I'm not that clued up on the causes,. The accounts I've read (which probably only cover some of these diseases) focus on the chain of events that occur when the immune system is stimulated. The idea seems to be that there is an abnormality occurring somewhere within this chain, so that certain parts of the inflammatory response don't get switched off or modulated when they're supposed to.

The accounts I've read say that the abnormality affects the innate immune system. So not to do with autoantibodies then.

That's certainly interesting. Makes me wonder about Mark Davis' T-cell findings

 

[duncan]

immune abnormalities don't start and finish with the classic autoimmune diseases. And exercise may be a common trigger in all.

There are also disorders where rest is the trigger, although it is easy to see how researchers might confuse exercise for rest as a cause. Certain Periodic Paralysis diseases come to mind.

In both cases - one where exercise precipitates decline or worsening, the other where rest is the cause - the culprits defy medical convention.

Incidentally, I seem to recall reading a PP article which alluded to a study showing close to half of PP patients were first diagnosed with either a conversion disorder, or simply accused of faking their symptoms. Genetic testing confirmed many of those patients claims.

 

[Jesse2233]

@duncan interesting, are Periodic Paralysis diseases immune mediated or are they purely neurological?

 

[duncan]

I think they are ALL neurological by definition since they are channelopathies. Some are genetic.. Some are autoimmune. Andersen -Tawil Syndrome would be an example, and although that is usually genetic, I believe it is not always so.

 

[Jesse2233]

@duncan are there any theories why rest would make someone worse in these conditions?

E.g. an issue of decreased metabolic demand or an altered brain state (maybe more alpha activity at rest)?

 

[alex3619]

Remember that you're not measuring the actual viral load, only the body's production of antibodies to it, so if immune system is out of control, these may go up too.

Measuring actual viral load seems to be crucial in ME. Many of us do have chronic infections, and not just viral. I know someone with chronic activated EBV who probably wont tolerate antivirals.

The problem with these questions is its like asking which strand to pull, when what we are really talking about is a bowl of deeply entwined noodles. We have to go through the whole bowl to find the one we want. Most of the noodles are going to taste like lemons, but some of us will find some yummy noodles in there, just not everyone liking the same noodle.

There is definitely immune involvement in all subsets though. However it does not have to be autoantibodies, etc., but could be autoinflammatory or even something new.

 

[mission impossible]

Sorry can someone please help me out here and expain how I reply to a quote on this thread( I am confused and can't find out on here how you do it, never have figured it out, sorry!

Like I want to highlight something AB has said (which goes yellow) and then post my reply(in white).

How do you do that?
please ignore the post I made above starting AB said, as I got that ALL wrong.....

I was trying to post in reply to what AB said:

"-low grade fevers
- Sore throats
-swollen lymph

That just means the immune system is activated no? "

my reply to this was/is:


Yes, but all I know is that one particular set of symptoms of malaise/dry sore throat/cough that I have is kept at bay whilst I take a low dose valaciclovir which comes back in about a day, everytime I try and stop taking valaciclovir and then symptoms disappear again when I restart, been like this last 6 months since I started taking the valaciclovir. Tests i have say it is suggestive of reactivated ebv, hsv1, coxsackie B, C.pneumoniae. The Question isIs this happening because the valaciclovir is suppressing the EBV or HSV1 just enough so that the immune system then settles back down again(so the sore throat/cough/malaise disappear) ?OR is it the medication that is having an anti-inflammatory action on the immune system?It certainly feels like I have an infection and the valacyclovir knocks it, but how would I know.Also there is the hypothesis out there that autoimmune diseases are caused by a chronic infectionsuch as Chlamydia Pneumoniae in MS.

 

[duncan]

are there any theories why rest would make someone worse in these conditions?

It has something to do with the ion channels, and potassium working into muscles either in too much or too little quantities, and an associated lag time after exertion.

Edited To Add: This might seem to suggest exercise is ultimately a cause, but that is not the case; these attacks due to hypo- or hyper-kalemic imbalances happen just as frequently following sleep.

 

[alex3619]

Is it that old people don't get the disease, or is it that it is considered as normal aging consequences for old people to suffer from pain and fatigue and cognitive dysfunctions...

[Satirical though somewhat true] Doctor: " Its all right honey, you are just getting old. Things don't work so well when you are old. All your tests came back normal, nothing to worry about. Go home, have a nap, then get some exercise. If your pain is a problem, take some [insert brand X painkiller here]."

 

[alex3619]

My feeling is that old people don't get it.

Average age of onset appears to be around menopause. Its most often women in their 40s. However it hits both sexes and all ages. Its hard to judge about older people though, because if they were susceptible they probably got it at a younger age.

 

[alex3619]

Reading case descriptions of the first outbreaks is interesting, it seems that the clinical evolution of those cases resembles more of a acute encephalytis than a chronic imune disfunction, maybe the virulence of the infectious agente has changed..

There are a number of us, including me, who are encephalitis survivors. I have long postulated that ME might arise when a virus gets into critical organs, like the heart or brain.

 

[alex3619]

I know, hepatitis B and some flu vaccine too can precipitate CFS.

I want to see this studied. How many are inert vaccines, and how many attenuated viral vaccines? Its possible that the immune activation is alone enough to push us over the edge, and vaccines contain adjuvants to boost the immune response.

 

[frederic83]

That is very interesting, I have not heard about this before. Do you know which hepatitis C drug can cause ME/CFS as a side effect? Would you have link or reference?

This article lists the new hepatitis C drugs, which are these four drugs:

That's anecdotal. There is a woman in the french ME/CFS group that got CFS after her hepatitis C treatment (sick for 20 years or close). She was tired during the treatment and had some autoimmune markers, they thought it was autoimmune hepatitis but that was not the case. After the treatment, she had a three months remission/cure, no more HCV, then came down with something that looks like ME/CFS. Her treatment was Ribavirin (Ibavyr) and Sovaldi.

Also, there is a French doctor that talked about CFS on the french television and mentioned that a recent publication reports that some people after the hepatitis C cure are still tired after the treatment. I have not looked for the publication and don't know if the fatigue these people experience is CFS.

 

[perrier]

I'll just veer off a little: This thread reinforces that seeing CFS specialists becomes tricky. At least that's my experience. They have their hobby horse, and don't always address everything that is out there regarding the illness. That's what I find the hardest. So, one goes from Doctor to Doctor. Then there is the aftermath of the trip:improvement isn't forthcoming, the patient crashes from the trip, can't tolerate a medication, desperate phone consultations ensue,etc.etc. Then one tries another doctor.
Why can't there be a CFS team we can consult?
Forgive this discouraging post.

 

[perrier]

http://jrnlappliedresearch.com/articles/Vol4Iss2/Chia2-Jar-spring.pdf

Chia and son: preliminary findings on interferon use ( an older article)