CFS is not an auto-immune disorder

Arius

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I just read yet ANOTHER article talking about CFS/ME as if it is an auto-immune condition.

HELLO. I HAVE CFS/ME and I DO NOT HAVE AN AUTO-IMMUNE DISORDER.

Like a lot of folks with CFS/ME, my immune system swings the other way, towards HYPOarousal. (I, for example, have low platelets and a low white blood cell count and get sick for about twice as long as everybody else; my immune system is not over-reactive in any sense.) We exist; QED: CFS/ME is not an auto-immune disorder.

Obviously the nervous system is involved. How, we don't know. But it seems to go one of TWO ways. Not just the one way (hyper-activation aka auto-immunity) constantly referred to in mainstream CFS/ME articles, and I'm extremely frustrated by being a) erased from the mainstream story and b) being erased in such a way that misdirects people away from finding out the REAL cause of this terrible illness.
 

Carl

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You misunderstand what is actually happening in your body. Autoimmunity is a combination of things, altered digestive permeability and altered nervous system function ie degradation. Both together cause autoimmunity to show. You clearly only have the Increased Digestive Permeability without having the nervous system degradation which prevents the immune system attacking the body and also provides other benefits. Your low white cells are caused by the immune system attack against large food molecules and the antibodies produced against them which enter your bloodstream when you eat.

I have had a low white cell count for the majority of the 30 years with CFS/ME and I also have some autoimmunity especially when I challenge my immune system with different food molecules which I won't recommend knowing how damaging it can be.

I suggest that you count yourself lucky that you do not have the pain and destruction that a very large number of people in this community experience. But look on the bright side, chances are that your nervous system will deteriorate in the long run and you might join this not so happy club.
 

Wishful

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Yes, when we strongly believe in one hypothesis for ME, or strongly disbelieve some others, we feel frustrated at resources being spent on those "wastes of time". I believe ME is primarily neurological (involving the glial cells), so I'm not enthusiastic about hypotheses about autoimmunity, viral infections, or mitochondrial genetic disorders, or research focusing on blood or muscles. Unfortunately, funding isn't decided on 'most likely' or 'strongest evidence', it's based on politics, marketing (selling ideas), and the ease of the research (blood samples are easier to handle than samples from within live brains).

Another point is that not having the symptoms of autoimmunity isn't 100% proof that the hypothesis is false. You could have autoimmunity that doesn't show obvious signs. If ME was primarily due to autoimmunity, you could have a non-autoimmune condition that provides the same cytokine signals or whatever that autoimmunity uses to cause ME. Disproving a theory involving a complex system is not easy.
 

Mouse girl

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I met the research co-ordinator of Solve Me some years ago. She said that what they found is that the immune system in CFS/ME patients both is over active and under active plus it does unique things like mess up the immune communication system which makes everything a big mess. Can't really think of a proper analogy that everyone could understand what this means. I don't get hung up on this what the disease is called or how it's referred to, as long as people take it serious and maybe we get more funding one day and better testing so people can get disability easier, or as they say in the UK, benefits easier. I know, i'm unusual to have these beliefs.
 

Learner1

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I just read yet ANOTHER article talking about CFS/ME as if it is an auto-immune condition.

HELLO. I HAVE CFS/ME and I DO NOT HAVE AN AUTO-IMMUNE DISORDER.

Like a lot of folks with CFS/ME, my immune system swings the other way, towards HYPOarousal. (I, for example, have low platelets and a low white blood cell count and get sick for about twice as long as everybody else; my immune system is not over-reactive in any sense.) We exist; QED: CFS/ME is not an auto-immune disorder.
Sorry you're so upset about this, but many of us DO have autoimmunity. ME/CFS patients are heterogeneous - there are subsets of us with different combinations and permutations of a common list of problems. Some suffer from CCI/Chiari, some have chronic EBV, some have microbiome and lipopolysaccharides in the blood, some have iron or B12 or amino acid deficiencies.

Just because YOU don't doesn't mean others don't. Devaluing other patients experiences is not particularly helpful. Understanding how these different problems may produce some of the same symptoms may lead to insights... For example:

She said that what they found is that the immune system in CFS/ME patients both is over active and under active plus it does unique things like mess up the immune communication system which makes everything a big mess. Can't really think of a proper analogy that everyone could understand what this means
My ME/CFS specialist, who is one of the Clinicians Coalition, said I had a dysfunctional immune system, with both autoimmunity and immunodeficiency. Some patients have one, others have the other, and some have both, but we each have our own idiosyncracies. You're right, it's a big mess
 

hapl808

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We also have no idea if 'ME/CFS' refers to one disorder, or two, or ten, or twenty. Since there are no definitive tests, we're just using relatively arbitrary symptom clusters to try to differentiate it from 'known' disorders. I think it unlikely that everyone diagnosed as ME/CFS is suffering from one disorder when the triggers could be viral, bacterial, parasites, injury, and on and on.