Dear Health Care Professional
Dear Health Care Professional,
My wife is seriously ill with severe Myalgic Encephalomyelitis (ME) All I do, all day long, is hold , comfort her, trying to block out, with my body, the pain, the numbness, the paralysis, the screaming, throbbing , itching skin that she suffers. It has been like this, every day and night, for the last sixteen years.
Lately my wife is getting much worse and I am very worried. In so many ways I am losing my wife, as the disease tightens its grip upon her deadening her thoughts, drowning her normal sensations , so she is less and less aware of her body, less and less able to think, less and less able to bear touch, sound, without catastrophic consequences.
When I look at my wife’s body I have no idea what is going so wrong with it, for no one is doing the tests that are required to find out. At least our excellent GP believes she is ill, however a local Neurologist that he referred her to, dismissed my wife after 15 minutes stating that all she needs is “reassurance”.
It would have been much more helpful if the Neurologist had been bothered enough to carry out a proper neurological investigation : an (astonishing) degree of cerebral hypoperfusion, hypometabolism in the right mediofrontal cortex and brainstem; damage to the endothelium in blood vessels supplying the brain, spinal cord and nerves; bacterial infection of the brain, decrease in cerebral blood flow, punctate, subcortical areas of high signal intensity consistent with edema or demyelination and significant cognitive impairment, a significant decline in grey matter volume – a reduction of 8% on average in ME patients, altered permeability of the blood-brain barrier; all of these neurological defects are well documented in ME .
Yet no one, in all this time, has properly tested my wife’s neuromechanism, despite the fact that ME is classified by the World Health Organization and the Department of Health as a neurological disease !
I don’t know if its my wife’s heart . But would a heart specialist even believe she is ill never mind investigate possible palpitations, severe tachycardia with multiple ectopic beats , dyspnoea , myocarditis, cardiomyopathy, cardiac or peripheral insufficiency, abnormal regulation of heart rate and blood pressure, as well as high rates of allergic disease, dangerously low Q output, diastolic dysfunction (seen in 80% of ME patients) , abnormal oxygen consumption, a cardiac index so severe that it falls between the value of patients with myocardial infarction and those in shock, severe oxidative stress in the endothelium leading to swelling and stiffening; all of these are common findings in ME .
Imagine if we could find this information out . What a difference that might make !
Could it be her immune system that is at fault. Is there an immunologist available who might take her seriously ? Increased numbers of activated cytotoxic T cells (most patients have evidence of T-cell activation) Reduced T-Cell count , Low natural killer cell numbers/percentage and function (cytotoxicity) , Elevated immune complexes , Atypical lymphocyte count , Significantly reduced CD8 suppressor cell population and increased activation marker (CD38, HLA-DR) on CD8 cells, Abnormal CD4/CD8 ratio ANA , Elevations of circulating cytokines (including IL-6) particularly after exertion (there is an inappropriate and negative immune response to exertion) , Immunoglobulin deficiencies (most often IgG 1 and IgG 3) , Th1/Th2 Imbalance (some patients appear to have an over activation of the anti-inflammatory (Th2) branch and an under activation of the pro-inflammatory (Th1) branch of the immune system. This would explain increased rates of allergies and sensitivities, and conversely, difficulty fighting off pathogens), Th1 –Th2 response to mitogen stimulation (high levels of Th2 indicate autoimmunity) ,Antilamin antibodies (indicate autoimmunity and brain cell damage. Lamin B antibodies are evidence of autoimmunity) , Apoptosis is often raised (this is programmed cell death: known to be raised in infection) , Monocytosis (raised monocytes are suggestive of infection); these are all common findings in ME patients and are well documented.
But my wife’s immune system has never been tested, not in all these years.
It doesn’t have to be like this . There are a battery of tests that can and should be carried out on ME patients.
Why is my wife not being offered : SPECT and xenon SPECT scans of the brain, MRI scans of the brain, PET scans of the brain, Neuropsychological testing : to measure cognitive function, EEG brain maps and QEEG brain maps, Romberg or tandem Romberg test, Tests of the immune system, RNase L (37kDa 25A RNase L immunoassay: protein, activity, PKR cleavage and elastase activity assays), Erythrocyte Sedimentation Rate (ESR), Insulin Levels and Glucose Tolerance Tests , 24 Hour Holter Monitor, Tilt Table Examination , Q scores (as measured by impedance cardiography), Circulating Blood Volume (decrease), Thyroid status tests, Skin conductivity and skin temperature tests, Testable Major Sleep Dysfunction, Ocular tests, gut permeability tests, antioxidant status, buspirone-prolactin tests, ACTH-cortisol response tests, cardiac PET scans, circulating red blood cell and serum volume, tests of mitochondrial function (ATP levels, ATP->ADP conversion efficiency, ADP->ATP recycling efficiency etc, Mitochondrial function: ADP to ATP conversion , these are just a few of the potentially life-saving tests that surely ought to be routine in severe ME – but are non existent throughout most of the UK.
I desperately need you to act dear Health Care Professional. Why do you keep fobbing me and my MP representatives off ?
Being left alone like this, for years on end, with absolutely nothing is no longer an option that I am prepared to tolerate. What can and will you do to offer a proper biomedical service for this serious neurological disease ?
Greg Crowhurst
My wife is seriously ill with severe Myalgic Encephalomyelitis (ME) All I do, all day long, is hold , comfort her, trying to block out, with my body, the pain, the numbness, the paralysis, the screaming, throbbing , itching skin that she suffers. It has been like this, every day and night, for the last sixteen years.
Lately my wife is getting much worse and I am very worried. In so many ways I am losing my wife, as the disease tightens its grip upon her deadening her thoughts, drowning her normal sensations , so she is less and less aware of her body, less and less able to think, less and less able to bear touch, sound, without catastrophic consequences.
When I look at my wife’s body I have no idea what is going so wrong with it, for no one is doing the tests that are required to find out. At least our excellent GP believes she is ill, however a local Neurologist that he referred her to, dismissed my wife after 15 minutes stating that all she needs is “reassurance”.
It would have been much more helpful if the Neurologist had been bothered enough to carry out a proper neurological investigation : an (astonishing) degree of cerebral hypoperfusion, hypometabolism in the right mediofrontal cortex and brainstem; damage to the endothelium in blood vessels supplying the brain, spinal cord and nerves; bacterial infection of the brain, decrease in cerebral blood flow, punctate, subcortical areas of high signal intensity consistent with edema or demyelination and significant cognitive impairment, a significant decline in grey matter volume – a reduction of 8% on average in ME patients, altered permeability of the blood-brain barrier; all of these neurological defects are well documented in ME .
Yet no one, in all this time, has properly tested my wife’s neuromechanism, despite the fact that ME is classified by the World Health Organization and the Department of Health as a neurological disease !
I don’t know if its my wife’s heart . But would a heart specialist even believe she is ill never mind investigate possible palpitations, severe tachycardia with multiple ectopic beats , dyspnoea , myocarditis, cardiomyopathy, cardiac or peripheral insufficiency, abnormal regulation of heart rate and blood pressure, as well as high rates of allergic disease, dangerously low Q output, diastolic dysfunction (seen in 80% of ME patients) , abnormal oxygen consumption, a cardiac index so severe that it falls between the value of patients with myocardial infarction and those in shock, severe oxidative stress in the endothelium leading to swelling and stiffening; all of these are common findings in ME .
Imagine if we could find this information out . What a difference that might make !
Could it be her immune system that is at fault. Is there an immunologist available who might take her seriously ? Increased numbers of activated cytotoxic T cells (most patients have evidence of T-cell activation) Reduced T-Cell count , Low natural killer cell numbers/percentage and function (cytotoxicity) , Elevated immune complexes , Atypical lymphocyte count , Significantly reduced CD8 suppressor cell population and increased activation marker (CD38, HLA-DR) on CD8 cells, Abnormal CD4/CD8 ratio ANA , Elevations of circulating cytokines (including IL-6) particularly after exertion (there is an inappropriate and negative immune response to exertion) , Immunoglobulin deficiencies (most often IgG 1 and IgG 3) , Th1/Th2 Imbalance (some patients appear to have an over activation of the anti-inflammatory (Th2) branch and an under activation of the pro-inflammatory (Th1) branch of the immune system. This would explain increased rates of allergies and sensitivities, and conversely, difficulty fighting off pathogens), Th1 –Th2 response to mitogen stimulation (high levels of Th2 indicate autoimmunity) ,Antilamin antibodies (indicate autoimmunity and brain cell damage. Lamin B antibodies are evidence of autoimmunity) , Apoptosis is often raised (this is programmed cell death: known to be raised in infection) , Monocytosis (raised monocytes are suggestive of infection); these are all common findings in ME patients and are well documented.
But my wife’s immune system has never been tested, not in all these years.
It doesn’t have to be like this . There are a battery of tests that can and should be carried out on ME patients.
Why is my wife not being offered : SPECT and xenon SPECT scans of the brain, MRI scans of the brain, PET scans of the brain, Neuropsychological testing : to measure cognitive function, EEG brain maps and QEEG brain maps, Romberg or tandem Romberg test, Tests of the immune system, RNase L (37kDa 25A RNase L immunoassay: protein, activity, PKR cleavage and elastase activity assays), Erythrocyte Sedimentation Rate (ESR), Insulin Levels and Glucose Tolerance Tests , 24 Hour Holter Monitor, Tilt Table Examination , Q scores (as measured by impedance cardiography), Circulating Blood Volume (decrease), Thyroid status tests, Skin conductivity and skin temperature tests, Testable Major Sleep Dysfunction, Ocular tests, gut permeability tests, antioxidant status, buspirone-prolactin tests, ACTH-cortisol response tests, cardiac PET scans, circulating red blood cell and serum volume, tests of mitochondrial function (ATP levels, ATP->ADP conversion efficiency, ADP->ATP recycling efficiency etc, Mitochondrial function: ADP to ATP conversion , these are just a few of the potentially life-saving tests that surely ought to be routine in severe ME – but are non existent throughout most of the UK.
I desperately need you to act dear Health Care Professional. Why do you keep fobbing me and my MP representatives off ?
Being left alone like this, for years on end, with absolutely nothing is no longer an option that I am prepared to tolerate. What can and will you do to offer a proper biomedical service for this serious neurological disease ?
Greg Crowhurst
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