We all know that "chronic fatigue syndrome" is an absolutely terrible, meaningless, and derogatory disease name that serves no purpose.
But I am going to throw out the idea for discussion that knowing what we know today maybe "myalgic encephalomyelitis" or even the ME Association's preferred term "myalgic encephalopathy" are both not appropriate names for this disease?
EDIT:
Myalgic encephalomyelitis means "inflammation of brain and spinal cord with muscle pain"
Myalgic encephalopathy means "disease of the brain with muscle pain"
Yes over the many years there have been tons of publications and very small non-reproducible studies flaunting various theories around this and trying to string together symptoms with known phenomena but honestly most of it is just garbage that isn't backed up by any reliable evidence. And something has to be said for the pile of clinical evidence of all the PWME in the world getting all kinds of treatments based on these theories yet very few people ever recovering from this illness.
Even though some treatments have helped people greatly, we all know and feel in our bodies that they are not attacking the root cause of this disease.
You don't have to tell me, I've read the good quality (yet small and not replicated) studies showing neuroinflammation and cerebral atrophy in ME/CFS, and it is likely that this is occurring and that some of our symptoms appear to be a consequence of this. But there are just as many if not more symptoms that don't appear to have anything to do with our brain or CNS.
There are many diseases that produce neuroinflammation and cerebral atrophy as an secondary mechanism/effect to the primary pathology, e.g. due to peripheral immune activation, autoimmunity, and/or dysregulation of cerebral blood flow and perfusion. But these diseases are not named for their secondary effects, they are named for their primary pathology or root cause.
Even the IOM process, which was the largest literature review and analysis of ME/CFS in history, determined that there is little or no robust evidence that the root cause of this disease is neurological. And they are absolutely correct, there is little or no evidence that ME/CFS is at its root a neurological disease.
But there is an ever growing body of evidence from Fluge and Mella showing that most people with ME/CFS seem to have a type of autoimmune disease that appears to be mediated by B-cells and the antibodies they produce. Fluge and Mella have also stated they are skeptical of the general belief that this is a neurological disease, from their clinical experience and pilot studies it seems that whatever autoimmune process is happening that it is causing chronic inadequate fine-tuned autoregulation of blood flow to meet the demands of tissues and this is what causes most of our symptoms and downstream problems, including they believe any neurological effects.
And the evidence from Norway I believe is much stronger and more scientifically sound then any of the other research touting ME/CFS as a putative neurological disease.
Remember rituximab does not cross the blood-brain barrier (BBB) at all and therefore has no direct effects on the brain. It could only ever achieve therapeutic concentrations in the brain if there was significant BBB disruption and this is not the case with most of us. In fact in many B-cell driven brain/CNS cancers where rituximab would be effective the drug must be given intrathecally, IV administration will do nothing.
It could be that peripheral immune activation and/or autoimmunity is directly causing neuroinflammation via a neuroimmune pathway (so not due to disturbance in blood flow regulation) and that rituximab by silencing peripheral immune dysfunction causes symptom relief because neuroinflammation is reduced. But there is growing evidence that this might not be the case. Fluge/Mella have been using potent vasodilators that work on the NO-sGC-cGMP pathway and found that symptoms are immediately and greatly improved with these drugs, so this would refute that hypothesis.
As a first stab I would venture to say "autoimmune systemic ischemia" might be a more appropriate name than "myalgic encephalomyelitis"?
But I am going to throw out the idea for discussion that knowing what we know today maybe "myalgic encephalomyelitis" or even the ME Association's preferred term "myalgic encephalopathy" are both not appropriate names for this disease?
EDIT:
Myalgic encephalomyelitis means "inflammation of brain and spinal cord with muscle pain"
Myalgic encephalopathy means "disease of the brain with muscle pain"
Yes over the many years there have been tons of publications and very small non-reproducible studies flaunting various theories around this and trying to string together symptoms with known phenomena but honestly most of it is just garbage that isn't backed up by any reliable evidence. And something has to be said for the pile of clinical evidence of all the PWME in the world getting all kinds of treatments based on these theories yet very few people ever recovering from this illness.
Even though some treatments have helped people greatly, we all know and feel in our bodies that they are not attacking the root cause of this disease.
You don't have to tell me, I've read the good quality (yet small and not replicated) studies showing neuroinflammation and cerebral atrophy in ME/CFS, and it is likely that this is occurring and that some of our symptoms appear to be a consequence of this. But there are just as many if not more symptoms that don't appear to have anything to do with our brain or CNS.
There are many diseases that produce neuroinflammation and cerebral atrophy as an secondary mechanism/effect to the primary pathology, e.g. due to peripheral immune activation, autoimmunity, and/or dysregulation of cerebral blood flow and perfusion. But these diseases are not named for their secondary effects, they are named for their primary pathology or root cause.
Even the IOM process, which was the largest literature review and analysis of ME/CFS in history, determined that there is little or no robust evidence that the root cause of this disease is neurological. And they are absolutely correct, there is little or no evidence that ME/CFS is at its root a neurological disease.
But there is an ever growing body of evidence from Fluge and Mella showing that most people with ME/CFS seem to have a type of autoimmune disease that appears to be mediated by B-cells and the antibodies they produce. Fluge and Mella have also stated they are skeptical of the general belief that this is a neurological disease, from their clinical experience and pilot studies it seems that whatever autoimmune process is happening that it is causing chronic inadequate fine-tuned autoregulation of blood flow to meet the demands of tissues and this is what causes most of our symptoms and downstream problems, including they believe any neurological effects.
And the evidence from Norway I believe is much stronger and more scientifically sound then any of the other research touting ME/CFS as a putative neurological disease.
Remember rituximab does not cross the blood-brain barrier (BBB) at all and therefore has no direct effects on the brain. It could only ever achieve therapeutic concentrations in the brain if there was significant BBB disruption and this is not the case with most of us. In fact in many B-cell driven brain/CNS cancers where rituximab would be effective the drug must be given intrathecally, IV administration will do nothing.
It could be that peripheral immune activation and/or autoimmunity is directly causing neuroinflammation via a neuroimmune pathway (so not due to disturbance in blood flow regulation) and that rituximab by silencing peripheral immune dysfunction causes symptom relief because neuroinflammation is reduced. But there is growing evidence that this might not be the case. Fluge/Mella have been using potent vasodilators that work on the NO-sGC-cGMP pathway and found that symptoms are immediately and greatly improved with these drugs, so this would refute that hypothesis.
As a first stab I would venture to say "autoimmune systemic ischemia" might be a more appropriate name than "myalgic encephalomyelitis"?
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