Via: Make Wealth History
Thursday, 31 January 2013
Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied for! Here are five tough choices we continually face. There aren’t easy answers to the issues they raise: that’s why they’re tough choices.
Some of us don’t actually sleep as most people know it, but rather move back and forth in a zombie-like state of limbo between shallow catnaps and heavy-lidded and uncomprehending consciousness. We could be called “awake” but we have no energy to move, and cognitive ability is sketchy and ephemeral.
Friday, 25 January 2013
ME isn't just being "tired all the time", it's an "invisible illness" - even if we look OK, we feel terrible, ill and exhausted after just the tiniest bit of activity, and then need to rest completely for hours or days afterwards. Exercising too much or pushing our bodies makes us worse. It's like having the most severe flu, and trying to run a marathon, at the same time. All of the time. Our muscles have no energy, it's impossible to think straight, and literally dozens of other symptoms, affecting our sleep, unbearable pain, dizziness, affecting our immune systems, hormones, emotions, heart, digestion, being too hot or cold, being too sensitive to light, noise and smell, and more.
Thursday, 24 January 2013
Wednesday, 23 January 2013
Two of the most dreaded household task for those of us with fibromyalgia and chronic fatigue syndrome seem to be laundry and grocery shopping. They're exhausting, and each one has its own special forms of torture for us.
Sleeping well can require a lot of work, especially when you have common sleep problems, and your body temperature plays a role. Sleep science blog Sleepdex points out that because your temperature drops, raising it during the night may help you sleep better:
Several hundred farmers in the UK are believed to have suffered debilitating health problems from exposure to organophosphate pesticides (OPs), as an Ecologist investigation earlier this year revealed. A large number of them were sheep farmers, following government orders in the 1980s and 90s to treat their animals with the chemical to protect against the spread of a disease called sheep scab.
Other groups also known to have been affected include veterans from the Gulf War, who were exposed to pesticides to protect them from pests and mosquitoes, and airline pilots and cabin crew, who can be exposed to organophosphates in engine oil.
In my case (and countless others,) minor fibromyalgia-based dysfunction in the immune system may have lead to changes that triggered first one autoimmune reaction and then another. It's like knocking over dominoes.
Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)
Concentrating almost exclusively on fatigue and/or pain whilst ignoring minor and overlap symptoms may only serve to ‘ring-fence’ ME/CFS research in a way that is artificial and unproductive.
There are tentative findings that a sensory gating deficit is also associated with ME/CFS. This is a testable hypothesis that, if confirmed, might suggest common physiological aberrations and understanding the pathology of these other conditions may help unearth the core pathology of ME/CFS.
Should ME patients exercise? Much of the current thinking about CFS and ME is driven by models of deconditioning and the notion that a little regular exercise will be beneficial. That is true; some exercise is good for us all. But what if exercise results in a huge delivery of free radicals, not because of disuse of muscle and deconditioning, but because there is something organically wrong with muscle metabolism? What value exercise in these circumstances?
These are crucial questions, and it is important to remember that the current evidence for deconditioning is not based on scientific investigations of muscle, but on suppositions about patients with "fatigue".
Led by Alexander Medina-Remon from the University of Barcelona, Spain the study finds that consumption of the cold vegetable soup is inversely associated with the incidence of high blood pressure (hypertension), which itself is "an unequivocal risk factor for cardiovascular morbidity and mortality, and is the main risk factor for stroke in both men and women."
This article reviews the diagnostic criteria for both myalgic encephalomyelitis (ME) (ie, chronic fatigue syndrome) and fibromyalgia (FM) and describes how to differentiate them from depressive and anxiety disorders, the psychiatric conditions with which they are most often confused. The patients in the following Case Vignettes have ME and/or FM; not all have a psychiatric condition.
M.E.is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.
Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder.
Identifying a solid link between a reactivated virus and heart disease is important because of the prevalence of EBV, a human herpes virus that causes infectious mononucleosis and several different types of tumors. An estimated 95 percent of Americans have been infected with the virus by adulthood, and once a person is infected, the virus remains dormant in the body. It can be reactivated without causing symptoms of illness, but reactivation has potential to create chaos in the immune system.
"A disturbing announcement was made at the July 1992 international AIDS conference held in Amsterdam: Several people with symptoms of AIDS, but who had no evidence of infection with either HIV-1 or HIV-2 (the viruses generally believed, at the time, to cause AIDS), had been identified by the U.S. CDC.
A few weeks later…Newsweek made an even more shocking announcement: that CFS researcher Dr. Paul Cheney had in his practice 20 CFS patients who had the same immune system deficiencies as the non-HIV AIDS cases revealed at the Amsterdam conference."
According to the Fair Allocations In Research Foundation in 2013 cancer research received $4,400 in funding per cancer patient. Compare that to the $150 per patient prostate cancer and Parkinson’s Disease research receives yearly. Then compare that to the $85 per patient for Alzheimer’s research and the $45 per patient for Hepatitis B.
Finally compare that to the funding for ME/CFS research: $6 per patient per year!
Tuesday, 22 January 2013
A new study, from Julia Newton’s group in Newcastle, UK, has found evidence that reduced blood flow to the brain is associated with muscle abnormalities in CFS patients.
Earlier work by the same group had found that with many CFS patients, muscles don’t regulate acid levels properly after exercise. Another study, by Ben Natelson, had shown reduced blood flow to the brain of most in a sample of CFS patients. This new study looked at both muscle acidity regulation and blood flow to the brain in the same people with CFS. They found a strong correlation between the two, both at rest and in response to a challenge.
Monday, 21 January 2013
"When the garlic is crushed, alliin becomes allicin. Research shows that allicin helps lower cholesterol and blood pressure and also helps prevents blood clots. Garlic can also reduce the risk of developing atherosclerosis (hardening of the arteries). Compounds in this familiar bulb kill many organisms, including bacteria and viruses that cause earaches, flu and colds. Research indicates that garlic is also effective against digestive ailments and diarrhea. What's more, further studies suggest that this common and familiar herb may help prevent the onset of cancers."
It probably stops you making friends too, but it could work! :-)
Thursday, 17 January 2013
"The fundamental issue is this: how can pursuing with such insensitive rigour 1.6 million claimants on incapacity benefit, at a rate of 11,000 assessments every week, be justified when it has led, according to the Government’s own figures, to 1,300 persons dying after being put into the work-related activity group, 2,200 people dying before their assessment is complete, and 7,100 people dying after being put into the support group? Is it reasonable to pressurise seriously disabled persons into work so ruthlessly when there are 2.5 million unemployed ..."
An assessor can consider what mobility aids, equipment, medical treatments or medicines might help the claimant return to work, and then, without consulting them as to whether the change is suitable, they can judge them fit for work or for work related activity based on them making that change. This completely ignores things like side-effects of medication, suitability of adaptions and mobility aids, or even if such help is available to the individual. This could already happen to some extent, such as with wheelchairs, but will now apply to a far wider range of changes. This also raises the huge problem of medical treatment without consent, since refusing to take a drug that could help a person return to work, even for very good reasons, could lead to benefits being withdrawn.
While the government says claimants should only be judged able to walk more than 20 metres if they can do so "reliably, repeatedly, safely and in a timely manner", they have not given this qualification legal force by including it in the regulations. Without this, and with Atos and Capita responsible for PIP assessments, I fear we will face a repeat of the suffering, hardship and clogged appeals process associated with the notorious work capability assessment.
WOW Campaign wholeheartedly supports this call to arms!
By Sue Marsh @suey2y
Although these changes have been advertised as small ‘amendments’, they will in fact have a huge impact on the way people’s illnesses and disabilities are assessed. Many vulnerable people’s needs will suddenly be able to be overlooked or ignored, meaning they could end up losing the support they desperately need to manage their conditions.
Hundreds of thousands of sick and disabled people across Britain need your help to fight these changes!
Wednesday, 16 January 2013
It seems like almost everything is labeled with the healthy eating buzzphrase "whole grain" these days. But those whole-grain claims can be misleading when we're looking for healthy food. Harvard researchers offer this rule of thumb for choosing good whole-grain foods: look for a 10:1 ratio of carbohydrates to fiber.
"... the weight gain associated with wheat consumption has little to do with caloric content per se; rather, the gluten proteins ... disrupt endocrine and exocrine processes within the body, as well as directly modulating nuclear gene expression ... to alter mamalian metabolism in the direction of weight gain."
So how did wheat, "the staff of life," become a weed of disease.
Wheat is not the same today. It has been agriculturally hybrid, not genetically lab engineered over some decades to resist fungus, grow more quickly, and be more pliable for industrial bread baking. As a consequence, 50-60 years ago wheat containing only five percent gluten has become 50 percent gluten today.
The series of studies summarized in this article provide support for the Energy Envelope Theory as an approach to the rehabilitation management of CFS. This theory would recommend that health care professionals who treat patients with CFS incorporate strategies that help patients self-monitor and self-regulate energy expenditures. Learning to pace activities and stay within the energy envelope appears to have favorable outcomes for patients with CFS.
Have you heard the term central sensitivity syndrome (CSS)? It's a good one to know - researchers are using it more and more as an umbrella term for fibromyalgia, chronic fatigue syndrome and several other related illnesses.
Why does an umbrella term matter? A couple of reasons. First, it can separate us from what we aren't, such as psychological or some vague category like "poorly understood conditions."
Tuesday, 15 January 2013
Antiepileptic drugs (AEDs, also known as anticonvulsant medications) have a prominent role in the treatment of several types of chronic pain, particularly relating to neuropathy and fibromyalgia. Yet, there have been strong concerns about suicide risks associated with these medications and a new review article examines the relatively weak evidence behind this apprehension.
Britain already has one of the poorest State pensions in Europe, and the government’s latest proposal will actually lower the proportion of GDP spent on pension-age benefits from 8.5% in 2060 under the current system to just 8.1%.
Exercise done lying on your back is best. You can do yoga, water exercise where you're floating, slow swimming, slow Pilates, resistance exercise, eventually working with light weights, exercise 1 minute and rest 2 minutes.. Your heart rate should NOT go up. As soon as the pulse meter shows the heart rate at the cut off (i.e., 100 for early 50s, below 100 for late 50s), STOP!
[Ed note: Previous information I've read on pacing places the cut off at no more than 30 bpm above resting heart rate.]
Monday, 14 January 2013
On the day we publish Emergency Stop, a new report analysing the economic and social impact of the Personal Independence Payment regulations, we call on the Government to ‘go back to the drawing board’ on proposals to replace disability living allowance (DLA), after it buried last-minute changes to criteria which will see thousands more disabled people with mobility difficulties lose out than expected.
"Not a week goes by without an article on good sleep hygiene showing up during my Internet wanderings. I know the recommendations are good ones. It’s just that most of them don’t work for those of us who are living with chronic pain or illness. Actually, it’s more than the fact that they don’t work—they’re irrelevant to the life we must lead."
The Countess of Mar, Professor Hooper and Dr Weir: The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base
"The idea that ME/CFS is due to a dysfunctional psyche is a hypothesis without an evidence base. The Maddox Prize was thereby awarded to the defender of a hypothesis with no evidence base rather than to someone who was upholding true scientific inquiry. Personal attacks against Professor Sir Simon Wessely do not advance the cause, but it is scientifically legitimate to direct criticism at the hypothesis both he and Professor White continue to espouse."
Sunday, 13 January 2013
With the current link to inflation which we’ve all been trying to defend, during times of growth benefits fall further and further behind earnings, increasing inequality. Then during hard times, benefits are meant to grow faster than earnings, providing an opportunity for the Right to pit people on low incomes against each other and pass populist attacks as they did this week.
In a recent study limited primarily to patient with cancer, neuropathic, and fibromyalgia pain syndromes, "72% [of pain medicine specialists in the United States] ask patients to sign a treatment agreement when prescribing opioids; however, only 35% ask patients with alcohol or drug abuse to sign one, while 45% may not use an opioid agreement/contract initially but do so if treatment becomes long-term. A majority, 70%, require a treatment agreement if patients demonstrate aberrant drug-using behaviors (eg, lost prescriptions, frequently running out of medication)"
Disrupted sleep is a hallmark of chronic fatigue syndrome. Chronic fatigue is associated with a range of sleep problems, including:
- Excessive daytime sleepiness
- Non-restorative sleep (waking feeling tired even after sufficient or prolonged periods of rest)
- Difficulty falling asleep and staying asleep
- Sleep disorders such as obstructive sleep apnea, insomnia, and narcolepsy
Despite the frequency with which people with chronic fatigue syndrome experience sleep disturbances, the connection between sleep and chronic fatigue—like so much else about the disorder—is not well understood. [Ed note: And even less likely to be treated.]
Friday, 11 January 2013
To know the neurobiological parameters that make people be motivated by something is important to many areas such as work, education or health. Dopamine is now seen as a core neurotransmitter to address symptoms such as the lack of energy that occurs in diseases such as depression. "Depressed people do not feel like doing anything and that's because of low dopamine levels," explains Correa. Lack of energy and motivation is also related to other syndromes with mental fatigue such as Parkinson's, multiple sclerosis or fibromyalgia, among others.
The power of the right-wing media – and the reason why it needs to be cut back to provide a democracy with a framework of balanced reporting – has again been put on show by its persistent fusillade of vilifying propaganda against the jobless and low-paid to assist their Tory government allies in pinning the blame and the burden for deficit reduction on the most vulnerable families in society.
Will we see new drugs for either fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) in 2013? It's possible we'll see the first-ever drug approved for ME/CFS, as well as an off-label treatment for both conditions.