Myalgic Encephalomyelitis or encephalitis inflammation of the brain and spinal cord. So why was Emily put in a Psychiatric ward? Why did she and others have to die?
Myalgic means pain, not fatigue. The NHS still will not remove the un-supported term “Chronic Fatigue Syndrome” from their website, nor has the NHS has a specific policy nor does it provide support for the unfortunate sufferers of this condition.
Typically caused by or re-triggered by many chronic infections (non-specific). More people than ever are surviving previously chronic conditions; nobody is gathering data on the survivors?
It is widely recognized that Acute Disseminated Encephalomyelitis (ADE) like the damaging Measles Encephalitis is caused by a wide range of viral and bacterial infections and even some vaccines. Its symptoms are measured in hours or days from onset of symptoms (when luckily recognised or observed) unusually severe or sudden onset of neurological symptoms are often masked by the symptoms of triggering infection.
How many times have you had a high fever and slept it off? You probably took action to treat the fever; but what about when this is delayed a few hours or days?
In case of infections being luckily observed and immediately treated, Children tend to have more favourable outcomes than adults, cases without fevers tend to have poorer outcomes due to poor observation. The latter effect due to either masking effects of fever, or that diagnosis and treatment is sought more rapidly when fever is present.
Recovery is one to six months if death has not resulted, mortality rate in days following acute infection and encephalomyelitis considered to be about 5%, where patients were observed.
Recovery despite continued observable subacute sclerosing (inflammation of nerves and brain) in 50 to 70% of cases [not monitored further], ranging to 70 to 90% recovery with some minor residual disability [some monitoring later] average time to ‘recovery’ is one to six months; even though inflammation in Brain and spine may or may not remain. [No data collected] This is as far as studies went when carried out by the National Institute of Neurological Disorders and Stroke (NINDS).
For example ‘Measles Encephalitis’ is recognised as a killer; has a mortality rate of 15%, there is no specific treatment for Measles Encephalitis which is a progressive encephalitis that is seen (or traditionally recorded in) children and young adults, caused by a chronic infection with the measles virus. The condition can be managed by medication if treatment is started at a very early stage, hours rather than days. Some studies have been carried out by the National Institute of Neurological Disorders and Stroke (NINDS).
Measles Encephalitis (which some data has been collected – up until vaccination became common) is characterized by a history of primary measles infection several asymptomatic (normal) years (6–15 on average), and then gradual, progressive psychoneurological deterioration, consisting of personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, spasticity, general malaise, fatigue and coma.
The Brain and the spinal cord carry the signals which make everything in the body work. including pain signals; normal muscle function; the adrenal system; hormones; senses; digestion and energy absorption etc etc. This is why ME is a Neurological condition. It is not simply fatigue. The weird effects on the signals around the body are the least well explained; only when you’ve thought it through can you recognise this, it taking some patients years to figure what changes are occurring.
There remains a black hole in the data regarding low level damage caused by subacute sclerosing and Encephalitis in a population which is aging and where medical professionals have taken the ‘eye of the ball’ for many types of viral and bacterial infections such as measles, mumps, polio, hepatitis B, pertussis, diphtheria, measles, mumps, rubella, pneumococcus, varicella, influenza due to vaccination or reduced presentation of symptoms arising from use of paracetamol and other medication in the community. Killer childhood diseases may now be survivable with vaccine or home treatment; but that doesn’t mean that scars are not left behind?
Sufferers of Myalgic Encephalomyelitis in the UK are abused, neglected and ignored they also lumped in with another group of patients suffering from Chronic Fatigue – which is accepted as be triggered by anything from stress or Cancer?
In patients confirmed to have M.E. the effect on the heart as a muscle is often overlooked. Muscles in the body of ME patients work at only 90-80% efficiency, recover slowly and do not respond to activity as they should. This causes not only pain in the heart, and a lower blood pressure, but lower efficiency in circulation and breathing (the diaphragm is muscle too.) The source of the problem is enflamed nerves and brain. Not easily visualised or understood. The inflammation and its effects are strange enough, but also trigger anxiety and inappropriate adrenaline response. Over time the patient will become chronically fatigued due to the imbalance caused by the dysfunctional nerves and develop anxiety and depression.
If you haven’t had the weird, repeating symptoms typical of ME (psychoneurological deterioration, personality change, seizures, myoclonus, ataxia, photosensitivity, ocular abnormalities, Hyperacusis, Misophonia ) prior to onset of fatigue then you haven’t got ME. You were probably simply fatigued, chronically or otherwise this is a totally separate issue. Chronic Fatigue Syndrome doesn’t go anywhere near capturing the symptoms of ME. Syndrome simply means the Doctor doesn’t know how to sort the symptoms out, and is in itself a failure.
Worst source of anxiety is misunderstanding and 95% of this comes from GPs and ME/CFS society and groups, which are run by those with their own opinions about Chronic Fatigue and not are Neurologists. M.E. is a Neurological condition, nerves don’t work properly and are mixed up, this does not mean the patient is mad?! The tragedy of Emily Louise could have been avoided if medical professionals stop falling back on opinion and listen to the research done – which has been demanding that proper data is collected and that possibilities outside the present ‘data’ are correct. That Subacute sclerosing and Encephalitis is both more widespread and survivable than thought, and in an aging population, who’ve had access to better treatment could account for the number of M.E. patients – who are still waiting, dying for recognition!
Please pass on.