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National Alliance for Myalgic Encephalomyelitis
"... established to address the issues of recognition and definition,
and to raise awareness of this devastating neuroimmune disease
that has afflicted nearly a million people in the U.S., and millions worldwide." -
The Boring Stuff: What is ME/CFS?
"One other thing: Do not bother with the Wikipedia entry for CFS. It is an edit war with loggorhhea, mostly being won by those who believe CFS is, roughly, malingering. "
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Using a BS detector on popular science reporting
"A useful, but admittedly more blunt heuristic might be: "If it's in the Daily Mail, it's probably not true." "
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You can not mentally train yourself out of a retrovirus
"You can not mentally train yourself out of a retrovirus. Minorly reduce a few symptoms with relaxation techniques, perhaps. Breathing through the pain as a woman in labor has to do. Perhaps.
But, I am fed up to the rafters with coping techniques.
I want total relief from symptoms. I want a cure. I want to know the real cycle of disease and its progression that is happening in my body for over 16 years."
Here, here!
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"Note: In some areas, the assumption is that if a disease doesn't kill
you directly it isn't important. Medicine's failure to adequately and
safely address, define and determine the etiology of severe pain and other organic issues coupled with a lack of hope for patients could easily be blamed for suicide rates in fibromyalgia, which were shown by the study below to be similar for patients with osteoarthritis. As with AIDS, it isn't the virus that actually kills the patient, it is the associated variables and diseases." -
"People shouldn’t be punished for their disabilities, yet that is exactly what this Tory and Lib Dem government is trying to do with these changes."
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CFS & Fibromyalgia: It’s A Winter Storm Every Day
"Most of us deal with winter storms better than we do chronic illness because we know that they are short-term and it’s not an every day occurrence. But what if you had to go through this every single day of the year, especially if you are used to living somewhere that’s sunny, beautiful and warm all of the time. You would probably move, wouldn’t you?"
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Post-Exertional Malaise - Definition of Post-Exertional Malaise
"Malaise is a vague feeling of body discomfort or a general feeling of being unwell, much like you feel when you're coming down with a cold or the flu. Post-exertional malaise is a period of intense exhaustion and other ME/CFS symptoms that lasts for more than 24 hours following physical exertion. This symptom is a hallmark of chronic fatigue syndrome (CFS or ME/CFS) and causes detectable differences in the blood that are being studied as a possible diagnostic marker."
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Cognitive dysfunction is an objective impairment in patients with CFS
"Patients with CFS had slower phasic alertness, and also had impaired working, visual and verbal episodic memory compared to controls. They were, however, no more sensitive than the other groups to suggestibility or to fatigue induced during the cognitive session. Cognitive impairments in MDD patients were strongly associated with depression and subjective fatigue; in patients with CFS, there was a weaker correlation between cognition and depression (and no correlation with fatigue)."
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Fibromyalgia: What's Killing Us?
"The higher rate of accidental death may seem odd, but it does make sense in light of certain fibromyalgia symptoms. We tend to be clumsy, and our cognitive dysfunction (fibro fog) may make it dangerous for us to drive. Also, accidental overdose can happen due to forgetfulness, desperation or both."
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10 Questions To Take Your Home From Good To Great
Brilliant list. My current arrangements fail on pretty much everything, but this is a list for any future home to aspire to.
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Leading national charities press govt for immediate benefit assessment reform
"Papworth Trust is leading a coalition of national charities concerned that government reforms to the Work Capability Assessment, which examines people's fitness for employment, will cause further misery to Britain's most vulnerable people."
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25% of people with CFS have Vitamin D deficiency
"Vitamin D is responsible for a host of functions in your body -- bone health, cellular replication, insulin production, immune function, heart heath ... the list goes on and on. Deficiencies are linked to all kinds of symptoms and illnesses, including chronic pain, muscle weakness, arthritis, diabetes, osteoporosis, cancer, heart disease, multiple sclerosis and autoimmunity.
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99.5% of those who will loose their disability benefits are genuinely sick and disabled people
"When you consider that the government's own estimate of disability welfare fraud is 0.5%, it makes you realise that 199 out of every 200 people who are going to have their disability benefits removed are genuinely sick and disabled people.
So I asked them about their euthanasia options as some disabled and sick people would prefer a clean and painless extermination rather than being forced to die of starvation, neglect or homelessness."
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Disability Myths Debunked In Invisible Illnesses & Chronic Pain
"Society gets only a glimpse, a blink of an eye, into our world and they pass judgment strictly on those few minutes or hours that they have contact with us. They don’t see what happens after we get home, or all of the days we may spend in bed because of the one activity we tried to participate in. They don’t see all of the doctor’s visits, the days, weeks and months we have had to spend in bed trying to recover from a few hours of work or fun. "
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Recovery of muscle power after exertion is unduly prolonged in ME
"by A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept., Royal Free Hospital (Pub. 1986)
by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years.
These show clearly that recovery of muscle power after exertion is unduly prolonged.
After moderate excercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more.
Moreover, if during this recovery phase, there is a further expenditure of energy, the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case."
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Sick of attacks on disabled people? Do something about it
"It is all well and good letting off steam and ranting about the unfairness of the world, but it doesn't create change. The ConDem coalition attacks on disabled people are horrific and for those of us affected, incredibly frightening. To target and demonise the very people who are most in need of support in difficult economic times says a great deal about the values of the UK Government right now."
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Help Us Promote Jan 30th | UK Uncut
"The National Audit Office have just announced a review of HMRC's big tax settlements (including Vodafone) and Corporate Britain is "running scared", scrambling to hire expensive PR firms to combat our message. We're winning. And we need to keep going. Our next day of action, on January 30th, needs to be our biggest yet."
2 hours ago
