Article: Is Chronic Fatigue Syndrome (ME/CFS) an Auto-immune Disorder?

You can view the page at http://forums.phoenixrising.me/content.php?501-Is-Chronic-Fatigue-Syndrome-(ME-CFS)-an-Auto-immune-Disorder-Rituximab

 

Interestingly whilst I have been pregnant I have only had one sinus infection and a slight touch of gastro. Normally for winter I would get everything going around.

My husband on the other hand has had full on gastro and head viruses several times. So I seem to be fighting off infections and viruses a lot better being pregnant.

Now at week 31 and brain fog is still lifted. My mental/cognitive abilities are still no where like they used to be but are much better to the point where I can read and take in some information. The crashes are still there in the sense that I get severe FM pain when I overdo things, but I have less of the flu-like symptoms.

While i definitely think the immune system is better able to cope with ME/CFS during pregnancy I wonder if the lifting of the brain fog is more to do with the increased blood volume/flow.

Allie

 

I may be wrong, but it is my understanding that if an immune system is attacking the bodies own tissue, there would be Anti Nuclear Antibodies. Because there is usually not large amounts of ANA's in ME, wouldn't it mean the immune system is reacting to something else? For example, a virus, a bacteria or possibly a hormone or other chemical found in the body (not tissue)? Without ANA's this would mean it is different then the majority of autoimmune diseases and it would have to be reacting to something else, possibly something that shouldn't be there.

I'd be interested to hear a theory/response to Mya's post! Anyone?

 

Comment from Geir Frivold, MD from the Blog Post

Cort, This was a great, comprehensive review of the topic of autoimmunity as it may relate to ME/CFS!I am spending this fall in Norway. The Retuximab study has, understandably gotten quite a bit of attention over here and Im enclosing excerpts from a recently published article below:Erling Ulvestad, MD, PhD, Professor in Immunology, and Chief of the Department of Micobiology at the Haukeland University Hospital in Bergen, Norway, commenting on the Rituximab-study (originating at his institution) stated (as quoted in the Norwegian medical newspaper Dagens Medisin [Todays Medicine] October 27, 2011, page 5. ):

I really dont know why one has to make such a distinction between psychological and somatic disease. Even in depressive disorders somatic mechanisms are central, as for example changes in the signaling mechanisms in the brain. We know that psychological stress will impact B-lymphocyte function.He continues, it is a grave mistake to isolate psychological from somatic disease.- As an example, there is a natural explanation why the Lighting Process can give improvement in some ME-patients. By changing the way we think, the way our brain function, we will also change the immune system. There is therefore no conflict between the theory that immunology have a central role in the illness of ME, and that different cognitive methods of therapy can have a positive effect on this illness, professor Ulvestad underscores.

Professor Ulvestad has praise for the researchers behind the Rituximab study, and points out that the reults are providing a possible direction for further study, as this therapy is destroying a particular group of cells. When this provides improvement in the illness of ME, the implication is that the mechanism of the disease may be uncovered by further study in this direction. The results are trustworthy and very well documented.

The researchers did solid immunological workMuch more work has to be done, the work has to be replicated in other clinical settings. The illness of ME/CFS may have several sub-groups. It is likely that Retuximab only is effective in a sub-group. It would be very interesting to find out what triggered the illness in the sub-group that benefited from the Retuximab therapy. Was the trigger a viral infection, stress-related trauma, maybe a combination of the two, or something else?

The field of psychoneuroimmunology is an evolving one. I believe there is great potential benefit from an interdisciplinary approach to the study of the ME/CFS puzzle, and therefore hope the ME/CFS community can be open to this.

 

Erling Ulvestad, MD, PhD, Professor in Immunology, and Chief of the Department of Micobiology at the Haukeland University Hospital in Bergen, Norway, commenting on the Rituximab-study (originating at his institution) stated (as quoted in the Norwegian medical newspaper Dagens Medisin [Todays Medicine] October 27, 2011, page 5. ): I really dont know why one has to make such a distinction between psychological and somatic disease. Even in depressive disorders somatic mechanisms are central, as for example changes in the signaling mechanisms in the brain. We know that psychological stress will impact B-lymphocyte function.He continues, it is a grave mistake to isolate psychological from somatic disease.- As an example, there is a natural explanation why the Lighting Process can give improvement in some ME-patients. By changing the way we think, the way our brain function, we will also change the immune system. There is therefore no conflict between the theory that immunology have a central role in the illness of ME, and that different cognitive methods of therapy can have a positive effect on this illness, professor Ulvestad underscores...I believe there is great potential benefit from an interdisciplinary approach to the study of the ME/CFS puzzle, and therefore hope the ME/CFS community can be open to this.

Yeah this sounds reasonable doesnt it...that is until you consider other somatic illnesses, and whether such 'cognitive methods of therapy' as Prof. Ulvestad promotes would be suitable. Would anyone tell someone with cancer that CBT or any other 'cognitive methods of therapy' would be an appropriate treatment? What about heart disease, or diabetes?
Of course not. Its nonsense. Worse than that, its irresponsible...and this coming from a professor!

The sole reason why so many people with ME/CFS are so cross about the idea of a 'cognitive method of therapy' is because we as the people who actually have the disease. We know that it is a physiological one, not Psychological - we can feel it in our cells, in our blood, in our bodies. In effect, although we arent professors (most of us at least) we are more expert on our condition than most of those who have not had the illness. When you get a cold, you know it is a physiological cause. When you get depression, you know it is in your head. So again, this is just NONSENSE!

 

Yeah this sounds reasonable doesnt it...that is until you consider other somatic illnesses, and whether such 'cognitive methods of therapy' as Prof. Ulvestad promotes would be suitable. Would anyone tell someone with cancer that CBT or any other 'cognitive methods of therapy' would be an appropriate treatment? What about heart disease, or diabetes?
Of course not. Its nonsense. Worse than that, its irresponsible...and this coming from a professor!

The sole reason why so many people with ME/CFS are so cross about the idea of a 'cognitive method of therapy' is because we as the people who actually have the disease. We know that it is a physiological one, not Psychological - we can feel it in our cells, in our blood, in our bodies. In effect, although we arent professors (most of us at least) we are more expert on our condition than most of those who have not had the illness. When you get a cold, you know it is a physiological cause. When you get depression, you know it is in your head. So again, this is just NONSENSE!

So very true!

 

When you look at the two axes of the stress response (HPA axis, autonomic nervous system) and see both are dysregulated in CFS AND you realize that both of these are major regulators of the immune system AND you realize that stress reduction therapies are used frequently in auto-immune disorders. (My mother used visualization exercises to combat Sjogrens) then it becomes pretty clear, at least to me, that there is a place for them in all these disorders, even if its a moderate place or a place that only affects some. (People with bad hearts do use these type of therapies to keep their hearts under control. I had a professor 20 years ago who was doing that...they had a damaged system that did not respond well to 'stress'.)

This isn't an either/or situation I don't think. Even the cause of depression is up in the air with some researchers such as Maes collecting evidence of auto-immune processes there and increased rates of oxidative. There is also plenty of evidence of immune dysfunction in depression.

I know someone who had depression and it was clearly not in his head. He was a well balanced teenager from a good family who woke up one day to a different world. Something had switched on/off in his brain. There was no psychological trauma involved at all.

So while it would be ridiculous to suggest that CFS is some sort of psychological disorder - its also not good, I don't think, to ignore the physiological evidence that stress reduction therapies might be helpful. It is my experience that they can be and they probably are because our systems are so wiped out that they just can't handle too much stress, whether its in the form of exercise (the biggy, in my experience) or something else.

 

We have very good reasons to be mad at the psychiatric lobby, which seems to think the world is becoming increasingly full of people with psychosomatic symptoms. And the PACE and CBT studies are horrible science. But I think we will find out that non-situational depression is very physical. It is "in peoples' heads" but it is not imagined- there is likely usually an immune process going on causing the symptoms and thinking differently won't magically fix it. And, as Cort said, almost all auto-immune diseases flare up when people are under stress, but stress doesn't cause Crohn's, Sjogren's, or CFS.
That said, some of Ulvestad's statements do sound a little too much like Wessely's and I wish he would be more clear that "cognitive methods of therapy" can't cure our illness, it can only have a small positive impact by shifting the immune system a bit.

 

I know someone who had depression and it was clearly not in his head. He was a well balanced teenager from a good family who woke up one day to a different world. Something had switched on/off in his brain. There was no psychological trauma involved at all.

Thats a good point Cort, and of course there are cases like these. I was refering (somewhat carelessly) to the majority of cases that are in the head; those that are caused by psychological events.

So while it would be ridiculous to suggest that CFS is some sort of psychological disorder - its also not good, I don't think, to ignore the physiological evidence that stress reduction therapies might be helpful. It is my experience that they can be and they probably are because our systems are so wiped out that they just can't handle too much stress, whether its in the form of exercise (the biggy, in my experience) or something else.

I also completely agree with you on this, but only as a means of managing the condition. Its the same with someone with heart problems; they are told to minimise stress because it can impact the heart. Ultimatly though (in the majority of cases) the root cause is physical, and really the effort is best spent working on this area.
As an example, i had CBT at an ME clinic and it was useful in helping me deal with the fact i now have a debilitating illness, but it was unable to deal with the illness itself.

The problem, as i see it, is that such comments as made by people like this professor, give far too great an emphasis on the psychological, to a degree you simply do not get with other Somatic diseases, and this continues to cause damage to our chances of the right type of research.

I feel my viewpoint is somewhat validated by the fact, that over the years the 'research' on ME/CFS has frequently been from a psychological standpoint, and yet what do we have to show for it? With this history in mind, and in the light of such huge leaps forward via somatical research (validation not withstanding), clearly the Psycological aspect of the research into our illness should be miniscule.

 

First things first: first the physical, then the psychological, when a condition is manifesting physically. If a condition were only manifesting in terms of thoughts and feelings, you might start with those, and hope you are successful before physical health starts to break down, if it does at all.

When a condition is manifesting physically, you treat the physical part first. ONLY THEN can you justify spending research dollars and pursuing treatments on psychological aspects which may be contributing. Look at alcoholism. First the drinking has to stop. I don't care whether you are talking about public or private rehabs or AA. The whole focus is on detox, stabilization and restoring physical health, before a psychological or spiritual approach is recommended.

I don't know why these people can't seem to understand this, which is the simplest of ideas, just common sense.

 

I may be wrong, but it is my understanding that if an immune system is attacking the bodies own tissue, there would be Anti Nuclear Antibodies. Because there is usually not large amounts of ANA's in ME, wouldn't it mean the immune system is reacting to something else? For example, a virus, a bacteria or possibly a hormone or other chemical found in the body (not tissue)? Without ANA's this would mean it is different then the majority of autoimmune diseases and it would have to be reacting to something else, possibly something that shouldn't be there.

There are other kinds of auto-antibodies besides antinuclear antibodies. For instance, antimitochondrial (which would make a certain amount of sense as a candidate for ME/CFS), antikeratin, anti-smooth muscle, antireticulin (found in Crohn's and celiac disease), antithyroperoxidase, etc., and probably lots more that haven't yet been identified. So it could be a matter of finding which auto-antibody you should be looking for.

It might be interesting to run tests of known auto-antibodies on ME/CFS patients vs. healthy controls. But probably, with our luck, if there is an auto-antibody it's a hitherto unknown one.

 

We have very good reasons to be mad at the psychiatric lobby, which seems to think the world is becoming increasingly full of people with psychosomatic symptoms. And the PACE and CBT studies are horrible science. But I think we will find out that non-situational depression is very physical. It is "in peoples' heads" but it is not imagined- there is likely usually an immune process going on causing the symptoms and thinking differently won't magically fix it. And, as Cort said, almost all auto-immune diseases flare up when people are under stress, but stress doesn't cause Crohn's, Sjogren's, or CFS.

That said, some of Ulvestad's statements do sound a little too much like Wessely's and I wish he would be more clear that "cognitive methods of therapy" can't cure our illness, it can only have a small positive impact by shifting the immune system a bit.

Uvestad's wife has a really great response to the Lightning Process and now leads courses in it. (She's healthy) - that is where his tie-in comes from.

My guess with LP and most treatments is that some people will respond really well, others will respond moderately well and others will not respond well; that was pretty much what the UK treatment poll said. LP had the strongest response rate of any medication or therapy but most people did not receive really significant effects. Its a big disease with lots of different kinds of people in it.

 

There are other kinds of auto-antibodies besides antinuclear antibodies. For instance, antimitochondrial (which would make a certain amount of sense as a candidate for ME/CFS), antikeratin, anti-smooth muscle, antireticulin (found in Crohn's and celiac disease), antithyroperoxidase, etc., and probably lots more that haven't yet been identified. So it could be a matter of finding which auto-antibody you should be looking for.

It might be interesting to run tests of known auto-antibodies on ME/CFS patients vs. healthy controls. But probably, with our luck, if there is an auto-antibody it's a hitherto unknown one.

Thanks for all the info . It sounds like a pretty wide open field.

 

Interestingly whilst I have been pregnant I have only had one sinus infection and a slight touch of gastro. Normally for winter I would get everything going around.

My husband on the other hand has had full on gastro and head viruses several times. So I seem to be fighting off infections and viruses a lot better being pregnant.

Now at week 31 and brain fog is still lifted. My mental/cognitive abilities are still no where like they used to be but are much better to the point where I can read and take in some information. The crashes are still there in the sense that I get severe FM pain when I overdo things, but I have less of the flu-like symptoms.

While i definitely think the immune system is better able to cope with ME/CFS during pregnancy I wonder if the lifting of the brain fog is more to do with the increased blood volume/flow.

Allie

Thanks for keeping us up to date Ally! Its so interesting to hear it as its happening. It adds a certain validity to these findings.

 

My guess with LP and most treatments is that some people will respond really well, others will respond moderately well and others will not respond well; that was pretty much what the UK treatment poll said. LP had the strongest response rate of any medication or therapy but most people did not receive really significant effects. Its a big disease with lots of different kinds of people in it.

But LP practitioners tell patients to report that they have had a strong improvement even if they haven't, so it's hard to tell. Secondly, there is always association/confirmattion bias - those who report recovery from LP might have been recovering spontaneously, so it is hard to tell whether it had an effect or not.

 

But LP practitioners tell patients to report that they have had a strong improvement even if they haven't, so it's hard to tell. Secondly, there is always association/confirmattion bias - those who report recovery from LP might have been recovering spontaneously, so it is hard to tell whether it had an effect or not.

The other thing that is likely a small, but still significant factor is that people pay alot of money for this treatment. There is likely a subconcious desire to justify that outlay, and that may be a factor for why some people report a small improvement.

I have to admit, i have read about some people who have made a good recovery and there are enough of these that some people clearly do benefit from it to a large degree. The sceptic in me says "maybe they didnt really have ME/CFS." and that might be true for some, but im not totally convinced by my own sceptism in that regard.
I cant totally rule it out. Having said that, having compiled a list of treatments available and scored them for what i consider to be liklihood of sucess, i have about three more years of treatments to try that i think are more promissing before i resort to the LP.

 

The other thing that is likely a small, but still significant factor is that people pay alot of money for this treatment. There is likely a subconcious desire to justify that outlay, and that may be a factor for why some people report a small improvement.

I have to admit, i have read about some people who have made a good recovery and there are enough of these that some people clearly do benefit from it to a large degree. The sceptic in me says "maybe they didnt really have ME/CFS." and that might be true for some, but im not totally convinced by my own sceptism in that regard.
I cant totally rule it out. Having said that, having compiled a list of treatments available and scored them for what i consider to be liklihood of sucess, i have about three more years of treatments to try that i think are more promissing before i resort to the LP.

I can't go to the 'they don't have CFS' card either. CFS is too nebulous a condition to be able to figure out who has what. I do imagine that they will have a certain type of 'CFS' and other people will have other types. Its certainly possible and I would guess quite likely that they don't have a really severe case of it but I'm in better shape physically, can do more functionally, etc. that several of the people who found benefits.

Good luck with your list!

 

The risk profile for chronic fatigue syndrome is similar to the risk profiles for a number of autoimmune diseases. Studies are inconsistent, however, in reporting the presence of autoantibodies (antibodies that attack the body's own tissues) in CFS, and the disease is unlikely to be due to autoimmunity.http://health.nytimes.com/health/guides/disease/chronic-fatigue-syndrome/causes.html

 

The risk profile for chronic fatigue syndrome is similar to the risk profiles for a number of autoimmune diseases. Studies are inconsistent, however, in reporting the presence of autoantibodies (antibodies that attack the body's own tissues) in CFS, and the disease is unlikely to be due to autoimmunity.http://health.nytimes.com/health/guides/disease/chronic-fatigue-syndrome/causes.html

What studies though? The fact is that autoimmunity has not been well explored in CFS, with only a few studies investigating novel autoantibodies, none have utilised systematic profiling or tried methods used to discover new antibodies (and lets face it, there are lots of potential targets...).

 

Any protein or protein hybrid can lead to an antibody response. There are maybe a hundred thousand such proteins in the body, although with minor variations there may be lots more. In addition there may be a similar number of proteins from pathogens and symbiotes. Thats a lot of targets. We can get an autoimmune response to one of our own proteins but that is rare. More typically, from my current understanding, we develop an autoimmune response from a similar protein, sometimes deliberately produced by a pathogen. In that case its usually referred to as molecular mimicry - the pathogen can be making you fight your own body, as antibodies are not specific, they target anything that has a similar structure to their target. On the other hand it could be coincidence - like cardiolipin molecules from gut bacteria.

Bye
Alex

 

WOuld it look like an auto-immune condition if we had an intracellular pathogen and our immune system was trying to destroy it?? Is this why maybe many viruses like ebv etc etc are implicated in auto-immune disease and cancers but are never mentioned as causes. Is the whole b-cell depletion theory centred around the infection/s running cfs are 'hiding' out in the b cells. I have only just jumped on this chat so dont know what was mention previously.

cheers!!!