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Today is International ME/CFS Awareness Day. You can read other blog posts about it here. In its honour, here are a few things you may not know about ME. I'm pulling figures out of articles I've read recently that seemed reputable, though I don't have the energy right now to look up where I got each of the stats from. I may write some more personal posts about this later in the week. One excellent blog post that I have just read may be found here.
* ME can stand for myalgic encephalomyelitis or myalgic encephalopathy. CFS stands for Chronic Fatigue Syndrome, CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome, and occasionally you still hear PVFS, for Post-Viral Fatigue Syndrome. There isn't universal agreement on which term to use, and there are different problems with each of them, which is why it's now common to say ME/CFS or ME/CFIDS. ME is the term most commonly used by patients in the UK.
* ME is a neuro-immune condition affecting 28 million people worldwide. It is not, contrary to popular myth, a psychiatric disorder.
* The symptoms of ME include crippling fatigue made worse by exertion or stimulus, cognitive dysfunction similar to that seen with learning disabilities and dementia, muscular problems, pain, sleep disorders, and can involve a host of symptoms relating to all systems of the body.
* About 25% of ME sufferers are severely affected. Definitions vary, but the most common one is being mostly housebound and often bedbound. For people with this level of ME, it is a great achievement simply to get washed every day and to get enough to eat. At the extreme end of the spectrum, patients end up completely unable to move, speak or feed themselves.
* ME is hugely under-researched. The UK government does not spend a penny on biomedical research into ME, even though it affects ten times as many people as MS does and is equally disabling.
* Due to poor research, the diagnostic criteria are not universally solid as they should be, leading to great difficulty in getting a diagnosis and a high possibility of misdiagnosis. This can cause problems with research being carried out on groups of people who do not meet the usual criteria for ME, resulting in inappropriate treatment recommendations. The most notorious of these are Cognitive Behavioural Therapy and Graded Exercise Treatment, both of which have done a great deal of harm to ME sufferers. There is currently no universally agreed-on test for ME.
* There is no cure for ME. There is no universal treatment that will help everyone. Some sufferers manage to find a few treatments that help some symptoms, but nothing works for everyone. Figures vary wildly on how many patients recover, and it is not known why they do.
* There are so many quack therapies targeting ME sufferers that we are always getting told about some wonderful new miracle cure by well-meaning and/or controlling friends or relatives. These quack therapies invariably eat up a great deal of cash and leave the patient feeling worse than before, especially since many of them use brainwashing techniques designed to make the sufferer believe, against all evidence, that they are healthy again, which causes a severe relapse once the initial flush of energy has gone.
* The level of disability and quality of life caused by ME have been compared to that of late-stage AIDS. Other researchers have said that ME is more disabling than AIDS, except in the last two months of life.
* The death rate and reduction in life expectancy for ME aren't really known. Figures I've heard (from research) include a death rate of 3% and a reduction in life expectancy of 15-20 years. Heart failure is thought to be the most common cause of death, and there's a question mark over the suicide rate.
* Patients with ME are routinely treated with contempt and disbelief by the medical profession, social services, friends and family. It is completely normal for someone with ME to be unable to access healthcare, whether due to poverty, an inability to find a doctor who "believes" in ME, or the lack of accessibility in medical facilities. Social isolation is also the norm once ME gets past a certain level of severity; more commonly patients are treated with anything from neglect to downright abuse. Care agencies and care homes are unlikely to have any idea how to treat patients with ME, and may follow highly inappropriate regimes that make the patient worse.
* A great many people with ME, I'd guess the majority, are living in poverty, reduced to struggling for disability benefits which are exhausting to claim and which work on expectations that actively discriminate against ME sufferers. ME sufferers are constantly having to justify their existence and plead that they really are ill, which is exhausting and psychologically damaging.
* While ME is not a psychiatric disorder, there is a secondary depression rate, as there is with any chronic illness. The psychological effects of living with so devastating a condition, and being treated so appallingly because of it, can be considerable, to the point where patients may exhibit the signs of Post Traumatic Stress Disorder.
* ME can stand for myalgic encephalomyelitis or myalgic encephalopathy. CFS stands for Chronic Fatigue Syndrome, CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome, and occasionally you still hear PVFS, for Post-Viral Fatigue Syndrome. There isn't universal agreement on which term to use, and there are different problems with each of them, which is why it's now common to say ME/CFS or ME/CFIDS. ME is the term most commonly used by patients in the UK.
* ME is a neuro-immune condition affecting 28 million people worldwide. It is not, contrary to popular myth, a psychiatric disorder.
* The symptoms of ME include crippling fatigue made worse by exertion or stimulus, cognitive dysfunction similar to that seen with learning disabilities and dementia, muscular problems, pain, sleep disorders, and can involve a host of symptoms relating to all systems of the body.
* About 25% of ME sufferers are severely affected. Definitions vary, but the most common one is being mostly housebound and often bedbound. For people with this level of ME, it is a great achievement simply to get washed every day and to get enough to eat. At the extreme end of the spectrum, patients end up completely unable to move, speak or feed themselves.
* ME is hugely under-researched. The UK government does not spend a penny on biomedical research into ME, even though it affects ten times as many people as MS does and is equally disabling.
* Due to poor research, the diagnostic criteria are not universally solid as they should be, leading to great difficulty in getting a diagnosis and a high possibility of misdiagnosis. This can cause problems with research being carried out on groups of people who do not meet the usual criteria for ME, resulting in inappropriate treatment recommendations. The most notorious of these are Cognitive Behavioural Therapy and Graded Exercise Treatment, both of which have done a great deal of harm to ME sufferers. There is currently no universally agreed-on test for ME.
* There is no cure for ME. There is no universal treatment that will help everyone. Some sufferers manage to find a few treatments that help some symptoms, but nothing works for everyone. Figures vary wildly on how many patients recover, and it is not known why they do.
* There are so many quack therapies targeting ME sufferers that we are always getting told about some wonderful new miracle cure by well-meaning and/or controlling friends or relatives. These quack therapies invariably eat up a great deal of cash and leave the patient feeling worse than before, especially since many of them use brainwashing techniques designed to make the sufferer believe, against all evidence, that they are healthy again, which causes a severe relapse once the initial flush of energy has gone.
* The level of disability and quality of life caused by ME have been compared to that of late-stage AIDS. Other researchers have said that ME is more disabling than AIDS, except in the last two months of life.
* The death rate and reduction in life expectancy for ME aren't really known. Figures I've heard (from research) include a death rate of 3% and a reduction in life expectancy of 15-20 years. Heart failure is thought to be the most common cause of death, and there's a question mark over the suicide rate.
* Patients with ME are routinely treated with contempt and disbelief by the medical profession, social services, friends and family. It is completely normal for someone with ME to be unable to access healthcare, whether due to poverty, an inability to find a doctor who "believes" in ME, or the lack of accessibility in medical facilities. Social isolation is also the norm once ME gets past a certain level of severity; more commonly patients are treated with anything from neglect to downright abuse. Care agencies and care homes are unlikely to have any idea how to treat patients with ME, and may follow highly inappropriate regimes that make the patient worse.
* A great many people with ME, I'd guess the majority, are living in poverty, reduced to struggling for disability benefits which are exhausting to claim and which work on expectations that actively discriminate against ME sufferers. ME sufferers are constantly having to justify their existence and plead that they really are ill, which is exhausting and psychologically damaging.
* While ME is not a psychiatric disorder, there is a secondary depression rate, as there is with any chronic illness. The psychological effects of living with so devastating a condition, and being treated so appallingly because of it, can be considerable, to the point where patients may exhibit the signs of Post Traumatic Stress Disorder.
