Your body must be full of mercury from the Flu Vaccinations you can get heavy metals out of your system by taking Kelp powder every morning and also try Spirilina a very potent living food potion
@bodieangels rubbish...........linked to cancer and autism??????? You are associating a broad group of 'conditions' with defined diagnostic groupings like cancer....
Many of the immunological findings are similar to autism and it's clear that autism includes sensory dysfunction of some kind. The hyperalgesic component of ME and FM is a sensory gating dysfunction in which normal sensory "filters" are not functioning and light, sound, etc. becomes painful. Although the cause is different, the effect is the same thing that people with meningitis and encephalitis experience.
I don't know why people have disagreed with me below - it's a fact, not my opinion! If you have disagreed with me it's because you are completely ill-informed. I'm not saying that these people aren't suffering with a debilitating illness, what I am saying is that the 'construct' of 'CFS' is purely that, a construct, not a definable disease entity - there is no disease called 'CFS', there are a number of multi-factorial conditions with varying symptoms that have been grouped under this heading.
@synapse131 So, sounds like you've solved the identified the aetiology / multiple possibel causes of CFS. Fantastic news, but sorry to say just not true. You have identified a number of individual pathogens that may themselves lead to possible illness, nothing more. What do you mean 'most of these are ... misdiagnoses'? Do you mean they are Dx with CFS but it is actually these as causes? Well that I'd agree with, but as for your subset theory, sorry but just not true.
BTW, these are just the most likely subsets and I'm not in any way stating that they are definitive. But there is evidence for each of these subsets and there are cases in which there is overlap with some folks have evidence of several processes at the same time (see Hyde.) The evidence for the "viral" (or post viral; whichever way this research goes) comes from the success that a number of researchers are having with antiviral meds and the research showing that viral cardiomyopathy is common.
@synapse131 again,......more rubbish. Subsets based on these possible aetiologies????? I think you need to revisit the literature and see what's been happening over the past couple of years.......
I've been studying the literature for at least 14 years and have been experiencing this illness for at least 19. The literature has clearly shown that diastolic cardiomyopathy is THE key element to the disease. A study was done which correlated the degree of cardiomyopathy with quality of life and there was an almost perfect correlation (the confidence interval was ASTOUNDINGLY high.)
I think you need to read something written by someone other than the typical propaganda heads which spout generalized hypotheses as though they were fact. There is a great deal of research that has found specific physiological mechanisms with ME that separate it from other disease processes. Just because an "expert" (and there are a lot of these) states a hypothesis doesn't mean that it is true. Whose research are you following? Wessely and Sharpe?
P.S., I have a database of at least a thousand articles that I have been collecting for the past 14 years. I haven't been limiting myself to ME and FM research as well; I've been looking a pain research, neurological research, sleep research, etc.
I agree in that the definitions for CFS have always been vague and have included multiple subsets with varying causality. But there is a main cohort (i.e., virally mediated or post viral ME) has a consistent physiology in which diastolic cardiomopathy is a main factor. A recent study found this was THE difference between Primary FM and ME (aka properly defined "CFS".) Organophosphate poisoning just happens to cause the exact same cardiomyopathy and vascular issues.
In fact, the common finding of low sed rates is related to the diastolic cardiomyopathy. Acc. to the lecture by Cheney, the main diseases with low ESR are dilated cardiomyopathy, giant cell arteritis, anemia, and one other I cannot recall. All of these diseases include "fatigue" and lack of energy; not surprising.
Organophosphate poisoning also causes a similar or the same kind of excitotoxic brain damage that results in central hyperalgesia in ME and FM so there are very good reasons why OP poisoning can mimic virally mediated ME.
Fact acc. to who? A little history. When the CDC/NIH committee came together to design the case definition for "CFS" there were 3 ME experts involved; Byron Hyde, Alexis Shelekov, and Gordon Parrish. All 3 had been involved in the formal definition of ME in 1969 after at least one international conference and years of discussion. These gentlemen, knowing that the disease that was being renamed into "CFS" was ME, refused to sign off on the final document.
In fact, it's the strategy of the psych theorists to continually water down the definition of "CFS" so that it includes many people with mental health issues and other etiologies besides ME. This is to cause confusion and for a more sinister purpose; if the definition gets watered down enough so that it includes a majority of MH caused fatigue patients, they can then point to this and try to say that the "majority" of "CFS" patients have MH issues.
Just because someone creates a definition that frames the illness in a certain way, that does not mean that the definition is correct and bears a relationship to the reality of the disease. The category or definition is a construct that is man made which may or may not properly describe that illness. In the case of "CFS", it does not. However, ME does describe a fairly coherent main cohort with a fairly consistent physiology.
Shelekov himself has stated that the classic Epidemic ME patient is indistinguishable from a modern "CFS" patient (at least the patients from the main cohort; i.e., ME) and autopsy results from classic ME and modern "CFS" patients have both demonstrated hemorrhaging in the dorsal horn of the spinal cord (which helps explain the hyperalgesia!) The Dubbo Studies showed that approx. 10% of all folks infected with EBV, Ross River virus, and Parvovirus B19(?) go on to develop ME.
The research on diastolic cardiomyopathy has shown that there are multiple viruses (most often herpes viruses) that can cause the heart infection and lessen the ability of the heart to transport blood through the heart. This was confirmed through heart biopsy. See Martin Lerner's research for more info.
You keep stating this is a "fact" but acc. to who? I think you need to read the "Clinical and Scientific Basis for ME/CFS" ed. by Byron Hyde. There is a long history to the ME/CFS question that goes back before the 1980's (when "CFS" supposedly was a "new" disease entity.) ME was already defined as a specific nosological entity (with likely clinical subsets) in 1969.
Most 'CFS' patients don't actually have 'CFS' - it is one of the greatest misuses of a label. Yes these people are unwell, but it is likely there isn't any actual homogenous condition 'CFS'- look at the so called criteria - people can have an incredible combination of symptoms and get the label of 'CFS' (usually from a badly informed GP). Unfortunately fatigue as a construct has always been difficult to study and can really only be assessed using subjective / patient report measures.
the catalog of symptoms is caused by the malfunction of the immune system. Check all the research of Prof. Dr. De Meirleir and see the real relation of CFS/ME to diseases like MS and even AIDS...we know by know that CFS is a multysystemical disease which is severe and disabling in many areas!
Your response to my comment shows your lack of not only understanding of 'CFS' but also of my initial comment. CFS is a multi-factorial condition, not multi-systemic, is not technically a 'disease' as there is no single aetiological pathway, and as for the symptoms - if you understood anything about CFS you'd know that all the symptoms can't be accounted for by a single factor - there is no definitive evidence that CFS is an immune disorder. Do some proper research before you make comment.
@scifitim Recent research has been able to differntiate ME/CFS from Lyme on the basis of spinal proteins. If i remember right, about 60-70% were ME/CFS (which fits exactly what I have been hypothesizing.)
I have had the illness for 18 years and have been doing research for 13; is that enough for you? The idea that there will be no specific causes in any one case is really problematic. While it highly unlikely that there will be one underlying cause for all cases, assuming that each case will have multiple causes is not founded and doesn't fit with much of the ongoing research. There are different subsets.
@synapse131 Whether you have or don't have CFS makes no difference.....if anything it may 'colour' your take on the research, your openness, and what you chose to focus on. Further, CFS organisations clearly advocate for certain types of research and dismiss others, so not very objective. I'm not saying you're not objective, however your 'sub groupings' based on varying pathogenic mechanisms clearly shows a bias towards specific physiological factors - you're missing a part of the picture.
What part of the picture am I missing? The "bias" towards specific physiological mechanisms is based on the research that is published in medical journals.
@scifitim You are correct in saying it was a generic waste-basket dustbin diagnosis/label, however we don't know enough to say whether there is a single factor accounting for all symptoms.
By your own admittance, we do not know what is causing those symptoms ergo we cannot say whether or not one thing is causing them or perpetuating them.
A doctor once told me that "you can't be that ill, you've ONLY got CFS" and went on to say he didn't know what caused it.
@scifitim You are correct in saying it was a generic waste-basket dustbin diagnosis/label, however we don't know enough to say whether there is a single factor accounting for all symptoms.
By your own admittance, we do not know what is causing those symptoms ergo we cannot say whether or not one thing is causing them or perpetuating them.
A doctor once told me that "you can't be that ill, you've ONLY got CFS" and went on to say he didn't know what caused it.
So Low Natural Killer Cell isn't an immunological finding? I'm confused. You might want to talk to Dr. Klimas about that or the many Japanese experts (there's a reason it's called low Natural Killer Cell disease in Japan.)
CFS is not a single condition like heart disease, stroke, cancer, etc...the current theory is that there are a group of unidentifiable conditions with multiple aetiologies, onset patterns,and symptom manifestations that have been labelled 'CFS'. Certainly these people are severely disabled, there's no argument there. So what are the relations of CFS to AIDS and MS? Again, these conditions are identifiable and discrete, CFS is not. Please research before making ill-informed and idiotic statements
greetings first! o.k. I intend to take your expertise very seriously and I say that honestly. I researched some of the details about RNase-L , which according to Dr. Meirleir could become a bio-marker for CFS - maybe at least for a certain kind of CFS. It seems that we agree that there are different groups. Nevertheless I think that the Fukuda or Canadian criteria define the disease, even if it leaves the door open for many subgroups. Whoud you say my thinking is fallacious? I am asking honestly
@scifitim Actually, while there ae subsets, that doesn't mean that it's just a "grab bag" of things. It has been verified that organophosphate poisoning causes excitotoxic brain damage and diastolic cardiomyopathy just like the puted virally mediated subsets. The subsets appear to be fairly discreet although there is overlap. The common factor (excluding "pure pain" fibromyalgia which is confirmed to not have cardiomyopathic features and is why they do not have post exertional malaise) cont.
@scifitim cont..... appears to be this diastolic cardiomyopathic dysfunction combined with micro-circulatory dysfunction which results in problems with blood flow to the brain. Neurological research is confirming that excitotoxic brain damage can occur from a number of cause inc.: chemical, infections, and transient ischemia in the brain. The micro-seizure leading to cognitive dysfunction and interrupted sleep is a result of the excitotoxic damage (which relates to hyperalgesic pain as well.).
The vast majority of ME/CFS doctors and researchers would tell you that diagnosing MS is 100 times more difficult than diagnosing a case of ME/CFS until the brain plaques appear. MS is gradual and progressive with great symptom variability whereas ME is often abrupt, severe, and very difficult to mistake for anything else (disregarding the subset issue.)
@scifitim This I do agree with. Semantic issues are what is allowing multiple subsets being grouped under a large banner. It really depends on how one defines the illness and most are less than specific.
@scifitim I agree. But there are a number of conditions which have been identified which have an overall similarity and that because of the vague and loosely defined way in which the definition for "CFS" was constructed are grouped together. But there are some increasingly known subsets that are specifically definable such as the organophosphate poiinsoning subeset (which causes the same cardiomyopathy and excitotoxic brain damage as with the puted virally mediated subset.)
Because of the vagueness of the overall definition, the minor subsets get mixed in. My point is that the thought of ME/CFS being a grab bag of different conditions and that every case will in essence be multi-factorial is incorrect. Post Tx Lyme and ME have been differentiated by spinal proteins. There are cases in which vets and animals were treated for Babesia caused "CFS" and recovered. OP poisoning cases are known and researched ("Enteroviral and toxin mediated ME" by Richardson.)
Recent research is identifying cholinergic mechanisms in "viral" ME and in Gulf War Syndrome and OP poisoning with different receptor activation patterns for viral (Acetyl cholinergic) as differentiated with OP and GWS (muscarinic cholinergic.) Choline is the chemical affected by tetanus which causes lockjaw; there is a reason I have been describing the muscle stiffness as "lockjaw light."
You're forgetting Dr. Light's research at the University of the Pacific which has shown definitively the pathologically disturbed and extended muscle recovery that ME/CFS patients experience based on serial exercise testing. Normals (incl. de-conditioned)= +3-4%, ME/CFS= -15-60%, Congestive Heart Failure= -7%. Unfortunately we actually do have objective measurements, they are just not getting used.
The focus on "fatigue" has been the main problem all along with CFS as a definition. Keep in mind that when the "CFS" definition and construct was put together by committee, the most experienced researchers pulled out (Hyde, Shelekov, and Parish) since they did not expect it to be taken seriously.
This demonstrates you ignorance (just like the folks who made the definition for "CFS"). Fatigue isn't even the major symptom. The pain and cognitive symptoms are much more problematic and it's the focus on "fatigue" that is allowing you to over generalize and "lump" when you should be "splitting." Dr. Light has demonstrated that ME patients have a highly abnormal and extremely lengthened muscle recovery (which explains why we have normal initial strength but NO endurance.)
Even the neuropsych studies have found a consistent pattern of brain dysfunction in which memory formation, attention and focus, etc. is compromised. The sleep dysfunction, the cognitive issues, startle reflex, etc. are all related to the micro-seizure (discovered to occur in all ME patients by EEG expert Frank Duffy.) In essence, ME patients experience a "micro" absence seizure with alpha wave intrusion every several seconds which disrupts these functions.
If a micro-seizure compromising cognitive function, sleep, etc. is occurring in ALL patients in the main (ME) cohort (which appears to be so,) I would say that is a consistent physiological finding that sets these patients apart. The fact that GABA agonists (Lyrica and Neurontin) are anti-seizure medications is not a coincidence as is the fact that NMDA/glutamate antagonists (incl. GABA agonists) are the most successful class of palliative medications for ME and FM.
I'm pleased to hear that some progress is being made towards a proper diagnosis, Paul. And being believed is so helpful too! Hope you enjoyed your holiday in Wales. Every blessing to you and your family, Nigel
Progress is good news, I wish you all the best, and hope you can finally get some answers and treatments. What you have gone through has been terrible, it just shows the lack of medical knowledge in the medical profession. TC
Your body must be full of mercury from the Flu Vaccinations you can get heavy metals out of your system by taking Kelp powder every morning and also try Spirilina a very potent living food potion
essy111 7 months ago
There are other bio-markers also..
in addition to the RNase-L , there is a low NKcell,
and very low to zero SED Rate, in addition to the
boat load of symptoms and it IS a CNS illness
so it DOES effect multi-systems AND might even be linked with many other illnesses.
.including cancers and autism and a retrovirus.
Things are changing fast folks...
bodieangels 1 year ago
@bodieangels rubbish...........linked to cancer and autism??????? You are associating a broad group of 'conditions' with defined diagnostic groupings like cancer....
scifitim 1 week ago
Many of the immunological findings are similar to autism and it's clear that autism includes sensory dysfunction of some kind. The hyperalgesic component of ME and FM is a sensory gating dysfunction in which normal sensory "filters" are not functioning and light, sound, etc. becomes painful. Although the cause is different, the effect is the same thing that people with meningitis and encephalitis experience.
synapse131 1 week ago
I don't know why people have disagreed with me below - it's a fact, not my opinion! If you have disagreed with me it's because you are completely ill-informed. I'm not saying that these people aren't suffering with a debilitating illness, what I am saying is that the 'construct' of 'CFS' is purely that, a construct, not a definable disease entity - there is no disease called 'CFS', there are a number of multi-factorial conditions with varying symptoms that have been grouped under this heading.
scifitim 2 years ago
YOUR research is apparently about 20 years out of date. Get on it.
Most likely subsets based on research:
1. Virally mediated (mostly triggered by cardiotrophic viruses; true ME)
2. Borrelia (Lyme Disease)
3. OP poisoning
4. bacterial etiologies (Babesia, Erlichia, Bartonella, etc.)
5. acute marine ciguatera poisoning (different that epitope found in other subsets)
6. smaller subsets such as pfisteria, mercury poisoning, spinal stenosis, etc.
Most of these are in essence "misdiagnoses."
synapse131 11 months ago
@synapse131 So, sounds like you've solved the identified the aetiology / multiple possibel causes of CFS. Fantastic news, but sorry to say just not true. You have identified a number of individual pathogens that may themselves lead to possible illness, nothing more. What do you mean 'most of these are ... misdiagnoses'? Do you mean they are Dx with CFS but it is actually these as causes? Well that I'd agree with, but as for your subset theory, sorry but just not true.
scifitim 10 months ago
BTW, these are just the most likely subsets and I'm not in any way stating that they are definitive. But there is evidence for each of these subsets and there are cases in which there is overlap with some folks have evidence of several processes at the same time (see Hyde.) The evidence for the "viral" (or post viral; whichever way this research goes) comes from the success that a number of researchers are having with antiviral meds and the research showing that viral cardiomyopathy is common.
synapse131 10 months ago
@synapse131 again,......more rubbish. Subsets based on these possible aetiologies????? I think you need to revisit the literature and see what's been happening over the past couple of years.......
scifitim 1 week ago
I've been studying the literature for at least 14 years and have been experiencing this illness for at least 19. The literature has clearly shown that diastolic cardiomyopathy is THE key element to the disease. A study was done which correlated the degree of cardiomyopathy with quality of life and there was an almost perfect correlation (the confidence interval was ASTOUNDINGLY high.)
synapse131 1 week ago
I think you need to read something written by someone other than the typical propaganda heads which spout generalized hypotheses as though they were fact. There is a great deal of research that has found specific physiological mechanisms with ME that separate it from other disease processes. Just because an "expert" (and there are a lot of these) states a hypothesis doesn't mean that it is true. Whose research are you following? Wessely and Sharpe?
synapse131 1 week ago
P.S., I have a database of at least a thousand articles that I have been collecting for the past 14 years. I haven't been limiting myself to ME and FM research as well; I've been looking a pain research, neurological research, sleep research, etc.
synapse131 1 week ago
I agree in that the definitions for CFS have always been vague and have included multiple subsets with varying causality. But there is a main cohort (i.e., virally mediated or post viral ME) has a consistent physiology in which diastolic cardiomopathy is a main factor. A recent study found this was THE difference between Primary FM and ME (aka properly defined "CFS".) Organophosphate poisoning just happens to cause the exact same cardiomyopathy and vascular issues.
synapse131 1 week ago
In fact, the common finding of low sed rates is related to the diastolic cardiomyopathy. Acc. to the lecture by Cheney, the main diseases with low ESR are dilated cardiomyopathy, giant cell arteritis, anemia, and one other I cannot recall. All of these diseases include "fatigue" and lack of energy; not surprising.
synapse131 1 week ago
Organophosphate poisoning also causes a similar or the same kind of excitotoxic brain damage that results in central hyperalgesia in ME and FM so there are very good reasons why OP poisoning can mimic virally mediated ME.
synapse131 1 week ago
Fact acc. to who? A little history. When the CDC/NIH committee came together to design the case definition for "CFS" there were 3 ME experts involved; Byron Hyde, Alexis Shelekov, and Gordon Parrish. All 3 had been involved in the formal definition of ME in 1969 after at least one international conference and years of discussion. These gentlemen, knowing that the disease that was being renamed into "CFS" was ME, refused to sign off on the final document.
synapse131 1 week ago
In fact, it's the strategy of the psych theorists to continually water down the definition of "CFS" so that it includes many people with mental health issues and other etiologies besides ME. This is to cause confusion and for a more sinister purpose; if the definition gets watered down enough so that it includes a majority of MH caused fatigue patients, they can then point to this and try to say that the "majority" of "CFS" patients have MH issues.
synapse131 1 week ago
Just because someone creates a definition that frames the illness in a certain way, that does not mean that the definition is correct and bears a relationship to the reality of the disease. The category or definition is a construct that is man made which may or may not properly describe that illness. In the case of "CFS", it does not. However, ME does describe a fairly coherent main cohort with a fairly consistent physiology.
synapse131 1 week ago
Shelekov himself has stated that the classic Epidemic ME patient is indistinguishable from a modern "CFS" patient (at least the patients from the main cohort; i.e., ME) and autopsy results from classic ME and modern "CFS" patients have both demonstrated hemorrhaging in the dorsal horn of the spinal cord (which helps explain the hyperalgesia!) The Dubbo Studies showed that approx. 10% of all folks infected with EBV, Ross River virus, and Parvovirus B19(?) go on to develop ME.
synapse131 1 week ago
The research on diastolic cardiomyopathy has shown that there are multiple viruses (most often herpes viruses) that can cause the heart infection and lessen the ability of the heart to transport blood through the heart. This was confirmed through heart biopsy. See Martin Lerner's research for more info.
synapse131 1 week ago
You keep stating this is a "fact" but acc. to who? I think you need to read the "Clinical and Scientific Basis for ME/CFS" ed. by Byron Hyde. There is a long history to the ME/CFS question that goes back before the 1980's (when "CFS" supposedly was a "new" disease entity.) ME was already defined as a specific nosological entity (with likely clinical subsets) in 1969.
synapse131 1 week ago
Most 'CFS' patients don't actually have 'CFS' - it is one of the greatest misuses of a label. Yes these people are unwell, but it is likely there isn't any actual homogenous condition 'CFS'- look at the so called criteria - people can have an incredible combination of symptoms and get the label of 'CFS' (usually from a badly informed GP). Unfortunately fatigue as a construct has always been difficult to study and can really only be assessed using subjective / patient report measures.
scifitim 4 years ago
yeh exactly, and thats why its confusion with ME is so stoooopid!
BretagneShrew 3 years ago
@scifitim
this is a very spekulative, unlearned comment!
the catalog of symptoms is caused by the malfunction of the immune system. Check all the research of Prof. Dr. De Meirleir and see the real relation of CFS/ME to diseases like MS and even AIDS...we know by know that CFS is a multysystemical disease which is severe and disabling in many areas!
FallaciesDetective 2 years ago
Your response to my comment shows your lack of not only understanding of 'CFS' but also of my initial comment. CFS is a multi-factorial condition, not multi-systemic, is not technically a 'disease' as there is no single aetiological pathway, and as for the symptoms - if you understood anything about CFS you'd know that all the symptoms can't be accounted for by a single factor - there is no definitive evidence that CFS is an immune disorder. Do some proper research before you make comment.
scifitim 2 years ago
@scifitim Recent research has been able to differntiate ME/CFS from Lyme on the basis of spinal proteins. If i remember right, about 60-70% were ME/CFS (which fits exactly what I have been hypothesizing.)
synapse131 11 months ago
I have had the illness for 18 years and have been doing research for 13; is that enough for you? The idea that there will be no specific causes in any one case is really problematic. While it highly unlikely that there will be one underlying cause for all cases, assuming that each case will have multiple causes is not founded and doesn't fit with much of the ongoing research. There are different subsets.
synapse131 10 months ago
@synapse131 Whether you have or don't have CFS makes no difference.....if anything it may 'colour' your take on the research, your openness, and what you chose to focus on. Further, CFS organisations clearly advocate for certain types of research and dismiss others, so not very objective. I'm not saying you're not objective, however your 'sub groupings' based on varying pathogenic mechanisms clearly shows a bias towards specific physiological factors - you're missing a part of the picture.
scifitim 8 months ago
What part of the picture am I missing? The "bias" towards specific physiological mechanisms is based on the research that is published in medical journals.
synapse131 1 week ago
@scifitim You are correct in saying it was a generic waste-basket dustbin diagnosis/label, however we don't know enough to say whether there is a single factor accounting for all symptoms.
By your own admittance, we do not know what is causing those symptoms ergo we cannot say whether or not one thing is causing them or perpetuating them.
A doctor once told me that "you can't be that ill, you've ONLY got CFS" and went on to say he didn't know what caused it.
PerpetualTiredness 2 weeks ago
@scifitim You are correct in saying it was a generic waste-basket dustbin diagnosis/label, however we don't know enough to say whether there is a single factor accounting for all symptoms.
By your own admittance, we do not know what is causing those symptoms ergo we cannot say whether or not one thing is causing them or perpetuating them.
A doctor once told me that "you can't be that ill, you've ONLY got CFS" and went on to say he didn't know what caused it.
PerpetualTiredness 2 weeks ago
So Low Natural Killer Cell isn't an immunological finding? I'm confused. You might want to talk to Dr. Klimas about that or the many Japanese experts (there's a reason it's called low Natural Killer Cell disease in Japan.)
synapse131 1 week ago
CFS is not a single condition like heart disease, stroke, cancer, etc...the current theory is that there are a group of unidentifiable conditions with multiple aetiologies, onset patterns,and symptom manifestations that have been labelled 'CFS'. Certainly these people are severely disabled, there's no argument there. So what are the relations of CFS to AIDS and MS? Again, these conditions are identifiable and discrete, CFS is not. Please research before making ill-informed and idiotic statements
scifitim 2 years ago
greetings first! o.k. I intend to take your expertise very seriously and I say that honestly. I researched some of the details about RNase-L , which according to Dr. Meirleir could become a bio-marker for CFS - maybe at least for a certain kind of CFS. It seems that we agree that there are different groups. Nevertheless I think that the Fukuda or Canadian criteria define the disease, even if it leaves the door open for many subgroups. Whoud you say my thinking is fallacious? I am asking honestly
FallaciesDetective 2 years ago
@FallaciesDetective Right on the money.
synapse131 1 week ago
@scifitim Actually, while there ae subsets, that doesn't mean that it's just a "grab bag" of things. It has been verified that organophosphate poisoning causes excitotoxic brain damage and diastolic cardiomyopathy just like the puted virally mediated subsets. The subsets appear to be fairly discreet although there is overlap. The common factor (excluding "pure pain" fibromyalgia which is confirmed to not have cardiomyopathic features and is why they do not have post exertional malaise) cont.
synapse131 11 months ago
@scifitim cont..... appears to be this diastolic cardiomyopathic dysfunction combined with micro-circulatory dysfunction which results in problems with blood flow to the brain. Neurological research is confirming that excitotoxic brain damage can occur from a number of cause inc.: chemical, infections, and transient ischemia in the brain. The micro-seizure leading to cognitive dysfunction and interrupted sleep is a result of the excitotoxic damage (which relates to hyperalgesic pain as well.).
synapse131 11 months ago
The vast majority of ME/CFS doctors and researchers would tell you that diagnosing MS is 100 times more difficult than diagnosing a case of ME/CFS until the brain plaques appear. MS is gradual and progressive with great symptom variability whereas ME is often abrupt, severe, and very difficult to mistake for anything else (disregarding the subset issue.)
synapse131 10 months ago
@scifitim This I do agree with. Semantic issues are what is allowing multiple subsets being grouped under a large banner. It really depends on how one defines the illness and most are less than specific.
synapse131 11 months ago
@scifitim I agree. But there are a number of conditions which have been identified which have an overall similarity and that because of the vague and loosely defined way in which the definition for "CFS" was constructed are grouped together. But there are some increasingly known subsets that are specifically definable such as the organophosphate poiinsoning subeset (which causes the same cardiomyopathy and excitotoxic brain damage as with the puted virally mediated subset.)
synapse131 10 months ago
Because of the vagueness of the overall definition, the minor subsets get mixed in. My point is that the thought of ME/CFS being a grab bag of different conditions and that every case will in essence be multi-factorial is incorrect. Post Tx Lyme and ME have been differentiated by spinal proteins. There are cases in which vets and animals were treated for Babesia caused "CFS" and recovered. OP poisoning cases are known and researched ("Enteroviral and toxin mediated ME" by Richardson.)
synapse131 10 months ago
Recent research is identifying cholinergic mechanisms in "viral" ME and in Gulf War Syndrome and OP poisoning with different receptor activation patterns for viral (Acetyl cholinergic) as differentiated with OP and GWS (muscarinic cholinergic.) Choline is the chemical affected by tetanus which causes lockjaw; there is a reason I have been describing the muscle stiffness as "lockjaw light."
synapse131 10 months ago
You're forgetting Dr. Light's research at the University of the Pacific which has shown definitively the pathologically disturbed and extended muscle recovery that ME/CFS patients experience based on serial exercise testing. Normals (incl. de-conditioned)= +3-4%, ME/CFS= -15-60%, Congestive Heart Failure= -7%. Unfortunately we actually do have objective measurements, they are just not getting used.
synapse131 10 months ago
The focus on "fatigue" has been the main problem all along with CFS as a definition. Keep in mind that when the "CFS" definition and construct was put together by committee, the most experienced researchers pulled out (Hyde, Shelekov, and Parish) since they did not expect it to be taken seriously.
synapse131 10 months ago
This demonstrates you ignorance (just like the folks who made the definition for "CFS"). Fatigue isn't even the major symptom. The pain and cognitive symptoms are much more problematic and it's the focus on "fatigue" that is allowing you to over generalize and "lump" when you should be "splitting." Dr. Light has demonstrated that ME patients have a highly abnormal and extremely lengthened muscle recovery (which explains why we have normal initial strength but NO endurance.)
synapse131 1 week ago
Even the neuropsych studies have found a consistent pattern of brain dysfunction in which memory formation, attention and focus, etc. is compromised. The sleep dysfunction, the cognitive issues, startle reflex, etc. are all related to the micro-seizure (discovered to occur in all ME patients by EEG expert Frank Duffy.) In essence, ME patients experience a "micro" absence seizure with alpha wave intrusion every several seconds which disrupts these functions.
synapse131 1 week ago
If a micro-seizure compromising cognitive function, sleep, etc. is occurring in ALL patients in the main (ME) cohort (which appears to be so,) I would say that is a consistent physiological finding that sets these patients apart. The fact that GABA agonists (Lyrica and Neurontin) are anti-seizure medications is not a coincidence as is the fact that NMDA/glutamate antagonists (incl. GABA agonists) are the most successful class of palliative medications for ME and FM.
synapse131 1 week ago
that is good news that you are finally getting somewhere.
do keep us updated :)
best of luck Pearl
nikitababy1983 4 years ago
I'm pleased to hear that some progress is being made towards a proper diagnosis, Paul. And being believed is so helpful too! Hope you enjoyed your holiday in Wales. Every blessing to you and your family, Nigel
ivortick 4 years ago
i hope they can figure out whats wrong with you some of my friends seems to have a illness inbetween ms and m.e
monkstripe 4 years ago
Paul - I REALLY hope they are able to find out what is going on and that it is something they can treat!
I had the falling back test etc which was why I was referred to Romford Neuro unit for testing...
I worry that they will just send you back into the loop again - I hope they don't!
Love and strength,
xxx
deadgirldreaming 4 years ago
I do hope you get some answers soon - all the very best, Paula
paula2048 4 years ago
Paul I feel this is good news for you. Thanks for telling us.I think it is great news to be referred to a neurological centre,
I hope it is not a long wait to see someone ...
bless you,
Love Linda
gregcrowhurst 4 years ago
Progress is good news, I wish you all the best, and hope you can finally get some answers and treatments. What you have gone through has been terrible, it just shows the lack of medical knowledge in the medical profession. TC
dexhaven 4 years ago
Thanks for your support. I will be keeping everyone informed of my progress.God Bless.
Paul
kaazoom 4 years ago