What evidence is there that ME/CFS is more autoimmune than chronic infection?

[leokitten]

I have two ME/CFS doctors, one is Dr. Levine who many of you know, I like her very much and think she is a good and caring doctor. The other also treats ME/CFS but is more of an LLMD.

When I visited my LLMD recently and mentioned to her the RituxME and UK rituximab clinical trials and background of rituximab in ME/CFS, she without hesitation told me that the theory behind all of it completely wrong, that treating people with immunosupressive/immunomodulating agents is bad and just masks the problem.

She believes that the underlying cause of ME/CFS and other similar diseases is chronic, persistent infection which has overloaded and worn down the immune system causing immunodeficiency/chronic immune dysfunction/activation/autoimmunity and that the way to treat these illnesses is by taking combinations of anti infectives to remove the underlying infections as well as supportive therapy to help the immune system to come back to normal and then it can keep pathogens in check on its own. She said that the only reason when this approach doesn't work is because we miss finding and treating a pathogen or that the anti infectives to treat a pathogen aren't very effective and it perisists.

I told her that it's possibly true that an infection could have triggered the autoimmunity in many patients but it's not what's maintaining the illness. She said I was wrong. She asked me why haven't they found any autoantibodies in ME/CFS.

She said for chronic autoimmune diseases such as MS, RA, etc they treat with high doses of antibiotics such as doxycycline or other drugs and patients improve. I told her I knew about this and have read the literature and believe that this is likely do to the anti inflammatory nature of these medications, not because pathogens were causing these diseases. She said I was wrong.

She believes that taking immunosupressive drugs like rituximab or other drug that suppress parts of the immune system will just make things worse because it will further weaken the immune system giving pathogens a chance to be more persistent and just mask the problem.

What evidence is there that ME/CFS is not due to chronic infection and that drugs like rituximab are making things better not worse or masking the problem?

@Jonathan Edwards what do you have to say about this doctor's beliefs, which I think many in the ME/CFS world believe as well (the chronic infection theory)?

 

[Rebecca2z]

Oh god I hope she is not right about this ! Thank you for sharing.

 

[*GG*]

I highly doubt it is a chronic infection for me, I think some peoples immune systems just go haywire. I have been on LDN since 2009, have felt a little better over the years, so I am biased that immune modulators are good for us/me.

GG

 

[duncan]

I think leokitten posits a good question. What proof or indicators are out there that suggest one interpretation is better than the other?

Ultimately, after embracing as much evidence as someone can, maybe both positions involve a little bit of leap-of-faithing.

But I'd also be curious to see supporting logic/points

 

[soxfan]

I don't think its a chronic infection for me either....I think the cause of my CFS was Lyme Disease which went untreated for a few years...Even though I was finally treated with antibiotics I think it was too late and my body was already damaged...I will never be the same no matter what I take....

 

[funkyqueen]

That does not surprise me to read this. I know a lot of doctors think like your doctor, but ME Research is started.We 'll know soon.

 

[Kyla]

This seems like an odd response.

There is currently no definitive proof it is an autoimmune disorder in all patients...just as there is no definitive proof that it is an ongoing infection in all patients. There are some compelling clues that point in either direction for at least a subset of patients.
I would turn the question around and ask her what evidence she has that it is DEFINITELY a pathogen. If she has some I think we all would like to see that published

I personally think autoimmunity makes the most sense in my own case, but also that ignoring any evidence to the contrary would be a mistake before we have all the answers.

Here is an article that summarizes some of the evidence for autoimmunity:
(It's two years old so will be missing some more recent evidence)

http://www.researchgate.net/profile/Michael_Berk/publication/257074903_The_Emerging_Role_of_Autoimmunity_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome_(MEcfs)/links/0c960524b4ed6dfb0b000000.pdf

 

[ahmo]

She said that the only reason when this approach doesn't work is because we miss finding and treating a pathogen or that the anti infectives to treat a pathogen aren't very effective and it perisists.

I told her that it's possibly true that an infection could have triggered the autoimmunity in many patients but it's not what's maintaining the illness. She said I was wrong

I've been involved in detoxx for 2 years, intensively for 2 months this year. Using natural anti-virals and andti-microbials has helped, but it most certainly hasn't changed my primary ME issues. I'm sure she'd say I used the wrong substances, if I'd used Pharma rx I could have eliminated the pathogens.

I highly doubt it is a chronic infection for me, I think some peoples immune systems just go haywire. I have been on LDN since 2009, have felt a little better over the years, so I am biased that immune modulators are good for us/me

Same with me. An infection might have pushed my system, but it wasn't until 4 years later that I really collapsed. Family hx of autoimmune, including my thyroid, and LDN has been very +.

A new thread, may be of interest:
http://forums.phoenixrising.me/inde...esis-a-neuro-immunological-explanation.37540/

The article it's referencing: http://www.ghrnet.org/index.php/ijnr/article/view/1058/1274

 

[Jonathan Edwards]

When I visited my LLMD recently and mentioned to her the RituxME and UK rituximab clinical trials and background of rituximab in ME/CFS, she without hesitation told me that the theory behind all of it completely wrong, that treating people with immunosupressive/immunomodulating agents is bad and just masks the problem.

She believes that the underlying cause of ME/CFS and other similar diseases is chronic, persistent infection which has overloaded and worn down the immune system causing immunodeficiency/chronic immune dysfunction/activation/autoimmunity and that the way to treat these illnesses is by taking combinations of anti infectives to remove the underlying infections as well as supportive therapy to help the immune system to come back to normal and then it can keep pathogens in check on its own. She said that the only reason when this approach doesn't work is because we miss finding and treating a pathogen or that the anti infectives to treat a pathogen aren't very effective and it perisists.

I told her that it's possibly true that an infection could have triggered the autoimmunity in many patients but it's not what's maintaining the illness. She said I was wrong. She asked me why haven't they found any autoantibodies in ME/CFS.

She said for chronic autoimmune diseases such as MS, RA, etc they treat with high doses of antibiotics such as doxycycline or other drugs and patients improve. I told her I knew about this and have read the literature and believe that this is likely do to the anti inflammatory nature of these medications, not because pathogens were causing these diseases. She said I was wrong.

She believes that taking immunosupressive drugs like rituximab or other drug that suppress parts of the immune system will just make things worse because it will further weaken the immune system giving pathogens a chance to be more persistent and just mask the problem.

What evidence is there that ME/CFS is not due to chronic infection and that drugs like rituximab are making things better not worse or masking the problem?

@Jonathan Edwards what do you have to say about this doctor's beliefs, which I think many in the ME/CFS world believe as well (the chronic infection theory)?

This lady doctor sounds to me to have a very limited and old fashioned view based on no evidence that I have heard of. She does not seem to have provided any evidence for her assertions that you are wrong. Patients with RA and MS do not improve on antibiotics in general. RA patients improve on certain very unusual immunomodulatory antibiotics like doxycycline and sulphasalazine. There seems to be very little evidence of immune dysfunction in ME. And repeated attempts to demonstrate chronic infection have failed. So there is masses and masses of evidence for ME not being a chronic infection - all the negative tests that have come back on thousands of patients. There is also very little evidence of autoimmunity, I agree, but the fact that rituximab seems to have been beneficial in an initial trial is worth following up. There is no evidence whatever that the patients treated with rituximab came to any harm - which in itself seems quite good evidence against a chronic infection theory.

In other words, although I would agree that the evidence for autoimmunity based on using rituximab is very slight so far, at least it is a bit more evidence than that for a chronic infective theory.

 

[halcyon]

There is no evidence whatever that the patients treated with rituximab came to any harm - which in itself seems quite good evidence against a chronic infection theory.

This is meaningless if the infection existed before the RTX infusion. The antibodies to the chronic infection would have remained after the B cells were gone. And anyways, those providing evidence for the chronic infection model are very clear that viremia isn't occurring so you wouldn't expect the temporary B cell depletion to change much about the chronic, non-lytic, intracellular infection.

 

[halcyon]

all the negative tests that have come back on thousands of patients.

I'm also curious which study looked for pathogens in thousands of patients.

 

[lansbergen]

I'm also curious which study looked for pathogens in thousands of patients.

Patients can not be tested for pathogens for which there are only post mortum tests.

 

[Hip]

There is a new thread examining the evidence for whether infections might be just a one-time initial trigger of ME/CFS (eg, via instigating autoimmunity during the acute infection), or whether infections are an ongoing and maintaining cause of ME/CFS. See here:

Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

 

[funkyqueen]

There is a new thread examining the evidence for whether infections might be just a one-time initial trigger of ME/CFS (eg, via instigating autoimmunity during the acute infection), or whether infections are an ongoing and maintaining cause of ME/CFS. See here:

Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

Some pundit in ME
examined my blood and other substances in long wide and across ...
They found neither VIRUSES /retroviruses other than old and very small trace of HHV4 and a positivity threshold to HHV6 doubted.
They were surprised not found more / other viruses/ retroviruses in me, most ME/CFS patients / other people by having more.
And however I am ME, no doubts about that.
In my case (as in that of many other ME), I am convinced that the flu bronchitis like which was the trigger of my ME, there are 6 years and 10 months, has been just a trigger, and not the responsible.
But it is known that there are several sub group of ME sufferers ... which makes our disease more complex & mysterious.
I can just confirm that there has autoimmunity in question in M.E, but from there to say that autoimmunity IS the cause, I do not know.

 

[Hip]

@funkyqueen
Were you tested for enteroviruses (such as coxsackievirus B and echovirus)? And if yes, which testing laboratory? Many laboratories do not have sensitive enough tests to detect enteroviruses in ME/CFS patients, so you may get a negative result, even though your tissues may contain a low-level chronic enterovirus infection.

For information on reliable enterovirus testing in ME/CFS patients, see here.

 

[barbc56]

When I visited my LLMD recently and mentioned to her the RituxME and UK rituximab clinical trials and background of rituximab in ME/CFS, she without hesitation told me that the theory behind all of it completely wrong, that treating people with immunosupressive/immunomodulating agents is bad and just masks the problem.

I'm not surprised an LLMD would say this.

Antibiotics can also mask problems.

Ancedotal alert!

I had this happen to me when treated for UTIs for about a year Long story short, my PCP, took a urine catch with a cathator, there was no infection and she referred me to a urologist. It turned out I had a minor kidney problem which included inflammation as part of it. In fairness, the UTIs were diagnosed at a walk in clinic which recommended followup with my PCP, but at the time other things were going on, I felt better on the ABs and I neglected to follow up. When I saw her for my annual physical, she picked up on the fact that further investigation was needed. Antibiotics, if I remember correctly, can sometimes reduce inflammation.

Have you asked Dr. Levine about your LLMDs statement?

I think @Jonathan Edwards makes a good point about the current evidence, relatively speaking about autoimmunity in a subset of patients.

Barb

 

[taniaaust1]

Antidocal evidence but I seem to also have autoimmunity issues going on. A orthopaedic specialist when I got a frozen shoulder told me at the age I was at the time I got this, that he thought I must have some kind of autoimmune problme going on and said the issue at my age it was usually caused by autoimmune issues such as something like diabetes.

I was prediabetic at the time so maybe that was enough to cause the issue? or maybe it was ME related?. I also though show signs of chronic infection on blood tests for many years etc

My personally thoughts are that both ME theories are probably correct in some way. Cant both be right?

 

[Jonathan Edwards]

I'm also curious which study looked for pathogens in thousands of patients.

I was simply referring to all the negative tests PWME have in clinical practice. We still have, as far as I know, no convincing study showing that PWME have more evidence of ongoing infection than normal people.

 

[Jonathan Edwards]

This is meaningless if the infection existed before the RTX infusion. The antibodies to the chronic infection would have remained after the B cells were gone. And anyways, those providing evidence for the chronic infection model are very clear that viremia isn't occurring so you wouldn't expect the temporary B cell depletion to change much about the chronic, non-lytic, intracellular infection.

The continuing presence of antibody is a good point but B cells do not confer immunity simply by turning into plasma cells. They are an important route for presenting antigens to T cells. That is presumably why after rituximab people are slightly more likely to develop shingles, even though antibody levels are probably constant. I agree that the argument is not a particularly strong one. However, the LLD was probably no more interested in virus infections than in autoimmunity. She wants to earn a living through bacteria.

And the only published evidence for non-viraemic latent infection that looks at all convincing to me is from Carmen Scheibenbogen on EBV - and of course rituximab is good treatment for EBV so we cannot have things both ways! I guess the latent virus idea may have come from Lerner but as far as I know for him it was just a speculation. He backs it up with a paper that seems to jump about from one virus to another and does not really add up for me.

My personally thoughts are that both ME theories are probably correct in some way. Cant both be right?

I agree, either or neither or both, maybe in different people. I guess my main point is that a doctor who says they know the cause of ME (when nobody else does) and tells a patient that they are wrong really has to be either dumb, deluded or dishonest (or all three). And where the story is based on an old chestnut like chronic infection I tend to go for the charitable option - dumb.

 

[msf]

Yes, it isn't an either or question, except for the fact that autoimmune diseases are defined by the absence of a causative pathogen (correct me if I'm wrong, Prof. Edwards). So if a chronic infection is the cause in many ME patients, their illness can not be 'autoimmune' in the strict sense, although it could have an auto-immune element to it. As Prof. Edwards stated, there isn't much evidence for either model at the moment, but those who see it as autoimmune are more likely to ignore what evidence there is for chronic infection, and vice-versa.

Also, in defence of your LLMD, if she was a good one she would know about herpes virus reactivation in Lyme patients, and I don't see how making your living from bacteria is less valid than making your living from autoimmune disease. In fact, with the rise of antibiotic resistance, I think the former will come to be much more important than the latter.