Sunday, 23 January 2011

Links of Interest (weekly)

  • "When you're in constant pain from fibromyalgia, chronic fatigue syndrome or some other source, it can be hard to find anything to be happy about. "

    tags: pain cosmos fibromyalgia me_cfs depression

  • "There is evidence that exercise can exacerbate symptoms, including pain and prolonged fatigue, in CFS/ME patients.

    Vigorous exercise or activity may trigger immune dysfunction and cause relapse.

    In May 2010, the ME Association published the largest UK survey of the opinions of people with CFS/ME about which treatment approaches worked for them. It found that graded exercise therapy (GET) was rated the least favoured physiotherapy-led approach, with 56.5 per cent of 906 patients who had tried it reporting that it made them feel worse.

    Conversely, pacing therapy, which matches activity levels to the amount of energy a patient has, was the favoured approach, with 71 per cent of the 2,137 who had tried it saying it had greatly improved their condition. Earlier patient surveys have produced similar results. "

    tags: me_cfs cosmos

  • Some 75% of people in a YouGov survey oppose government plans to sell off England's forests, it is revealed ahead of a consultation.

    tags: uk politics cosmos

  • "One blogger, 'Jimboeth', wrote: "DLA is not allowing anyone an outlandish lifestyle (unlike say, bankers' bonuses). It merely allows a small number of people in this country a life. It allows them to live. That's what the 'L' in DLA stands for. Living. As in 'not dying'."

    tags: uk benefits disability cosmos

  • "First off, my symptoms developed immediately after and as a result of a high fever/virus/stomach flu, so no one is ever going to convince me that it's all in my head. Plenty of doctors have tried to tell me I'm just depressed or anxiety-ridden, but I stubbornly cling to my conviction that it's a physical problem resulting from a virus."

    tags: me_cfs xmrv cosmos

  • "... for those who cannot make it to Monday protests physically but still want to make an impact."

    tags: cosmos uk benefits politics

  • "The patho-physiological mechanism of CFS is unclear but the immunological pattern of CFS patients gleaned from various studies indicates that the immune system is chronically activated. "

    tags: me_cfs cosmos

  • tags: me_cfs cosmos

  • "Stop the Government's cruel cuts to welfare for disabled people of all ages."

    tags: uk disability benefits cosmos

  • "Mumsnet joined the campaign to stop the cuts to disability living allowance (DLA) last weekend and it seems to be gaining traction.

    tags: uk benefits cosmos

  • "Although there is no definition universally accepted by the established medical institutions, Multiple Chemical Sensitivity experts (Bartha et al 1999) have come to a consensus on the criteria for diagnosis, and thus far these criteria remain unrefuted in the published literature. These criteria are as follows:

    * The symptoms are reproducible with [repeated chemical] exposure.
    * The condition is chronic.
    * Low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the syndrome.
    * The symptoms improve or resolve when the incitants are removed.
    * Responses occur to multiple chemically unrelated substances.
    * Symptoms involve multiple organ systems [Added in 1999]."

    tags: mcs cosmos

  • "The latest broken promise by this government relates to Incapacity Benefit. In the past, if you have been on Incapacity Benefit, you were able to return to work – and if your health failed again, you could go back on benefit at the same rate under the “104 week linking rule”. This is about to change"

    tags: uk benefits cosmos

  • Yet it would be wrong of me to equate far-right Daily Mail readers with Nazis, now wouldn't it?

    tags: uk dailywail cosmos

  • tags: uk benefits politics health cosmos

  • "I heard it said on the radio the other day that the government thinks it the poor by are only incentivised by a reduction in income and the rich bankers are only motivated by an increase in income. Well, my case is a very good example of what happens when you take away support from sick and vulnerable people. They cost the country even more money because they become sicker. That's not counting the human cost in suffering and the pressure it puts on families. My situation is being repeated over and over again all over the country. What I feel is betrayed."

    tags: uk benefits politics me_cfs fibromyalgia cosmos

  • "That’s not a rhetorical question, because your life, and health, will soon have a cash value to your GP – and it does not favour your long-term survival if your are chronically sick. It appears that our GPs. already well paid (average GP pay £105,300, according to the Guardian), are to be paid bonuses to keep patients out of hospital."

    Having seen the inside of one of our local hospitals, I'm almost inclined to say that I'm not unduly perturbed. It was so awful, I decided to walk rather than have surgery there. I said then that I'd rather die than be admitted to any UK hospital. Looks like I will probably get my wish then.

    tags: uk health cosmos

  • "A new study shows that a form of massage called myofascial release can improve pain and quality of life in people with fibromyalgia."

    tags: pain fibromyalgia cosmos

  • "The sheer scale and breadth of the present government’s pre-election lying and post-election u-turning is quite something to behold. Let’s trot through the big ones, that we actually know about."

    tags: uk politics cosmos

  • "What hinders good research? Ego. Period. Simon Wessely is a good example. He has a belief - that Chronic Fatigue Syndrome is a neuropsychiatric condition. So why would he want to try and replicate the XMRV findings then - Ego. To reinforce his beliefs. "

    tags: me_cfs cosmos

  • "Many CFS patients complain of gut dysfunction. In fact, patients with CFS are more likely to report a previous diagnosis of irritable bowel syndrome (IBS), a common functional disorder of the gut, and experience IBS-related symptoms. Recently, evidence for interactions between the intestinal microbiota, mucosal barrier function, and the immune system have been shown to play a role in the disorder's pathogenesis."

    tags: me_cfs cosmos

  • "Any sense can be a source of overload.

    Ears: loud noise or sound from multiple sources, such as several people talking at once.

    Eyes: bright lights or environments with lots of movement such as crowds or frequent scene changes on TV.

    Smell and taste: strong aromas or spicy foods.

    Touch: tactile sensations such as being touched by another person or the feel of cloth on skin."

    tags: fibromyalgia me_cfs cosmos

  • "The idea behind this [CBT] is that the CFS patient does not exercise because he is afraid to because it makes him ill. CBT is all about getting round this fear. The trouble is that the patient is right - he is fearful of exercise because it really does make him ill! "

    tags: me_cfs cosmos

  • "M.E. is not the same as other conditions within the collective diagnosis Chronic Fatigue Syndrome (CFS). Accepting them as though they are is the main reason why millions of people, all over the world, are remaining ill."

    tags: me_cfs cosmos

  • "It was discovered that the drug Raltegravir (Isentress) is effective against all herpesviruses through a different mechanism than that of HIV. As it turns out, all Herpesviruses (HHV-1, HHV-2, Eppstein-Barr virus, Cytomegalovirus, HHV-8) contain the UL89 protein, which is responsible for DNA maturation. Without it, the virus cannot leave the cell to continue infection. This discovery will lead to the discovery of a class of safer drugs to treat herpesviral infections. For CFS patients, it provides a one-two punch, knocking out XMRV and Herpesvirus co-infections."

    tags: me_cfs cosmos

  • "A study in England purported to find none of the retrovirus in blood samples, a claim later discredited when it was revealed that the researchers had used an entirely different method of testing from the original."

    tags: uk me_cfs xmrv cosmos

  • "In exactly one month, DLA is due to be slashed by parliament. By the 14th February, if sickness or disability come for you or your loved ones, (and sadly, the statistics are that one day, in some form, they will) you may find that all those NI payments and tax contributions have been for nothing. You may find yourself totally dependent on a partner financially, unable to get treatment, care or equipment to make your already unrecognisable life liveable. If you have no partner, you may find yourself in abject poverty, or even homeless as you try to face the un-faceable. "

    tags: uk benefits disability politics cosmos

  • "When I first read this personal testimony by an anonymous user of the carerwatch forums it broke my heart. The honesty and bravery of this person in coming forward to explain that they simply cannot cope with the repeated benefit reassesments disabled people are being forced through, and so will end their life when that time comes should move not just every Briton but people around the world."

    tags: uk benefits cosmos

  • "According to a recent study accepted for publication in The Endocrine Society's Journal of Clinical Endocrinology & Metabolism (JCEM), exposure to electrical light between dusk and bedtime strongly suppresses melatonin levels and may impact physiologic processes regulated by melatonin signaling, such as sleepiness, thermoregulation, blood pressure and glucose homeostasis."

    Yeah, but tell me how, in the modern world, is one supposed to avoid the exposure?

    tags: sleep cosmos

  • "It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life. "

    tags: cosmos

  • "Almost all persons (80%) experience lower back (lumbosacral) pain at some time in their lives, and consequences for the 10% to 20% in whom this condition becomes chronic can extend beyond the pain itself. Recent research observes that people living with persistent spinal pain experience difficulties with mental concentration and remembering information."

    Clearly, this applies with any type of chronic pain.

    tags: pain fibromyalgia cosmos

  • "Researchers from Japan have confirmed that multiple chemical sensitivity (MCS) is not an allergy. Rather, MCS is a condition in which individuals suffer with symptoms when exposed to low levels of toxic chemicals in the environment. Several studies have shown that people with MCS are unable to break down these toxicants efficiently, a function the liver normally serves. "

    tags: mcs cosmos

  • "You might get the impression from reading articles such as these with your Cornflakes each morning that there must be some hidden epidemic of fraudulent benefit claims taking place. A nationwide conspiracy to drain the pockets of middle-England. In reality, this relentless scaremongering has little basis in fact, and those featured in the tabloid press are indeed the highly-publicised exceptions to the rule. Surprising as it may be, just 1% of benefit fraud is fraudulently claimed:"

    tags: uk benefits cosmos

  • "Sick and Disabled people are now facing cuts of up to a third in their incomes. Since George Osborne’s Comprehensive Spending Review last October, there has been a steady drip-drip of almost daily announcements that have stripped away decades of hard-fought dignity in just a few short months."

    tags: uk benefits disability politics cosmos

  • "More and more, noise sensitivity is being recognized as part of fibromyalgia and chronic fatigue syndrome. It's a very real problem for many of us -- in a recent poll here, it was one of the top sensitivities people listed."

    tags: fibromyalgia me_cfs cosmos

  • tags: me_cfs cosmos

  • "Those of us with fibromyalgia and chronic fatigue syndrome usually have problems with sleep, and no matter what TV drug commercials may say, treating them is rarely as simple as popping a pill."

    tags: fibromyalgia me_cfs sleep cosmos

  • "But at a time when unemployment is creeping towards 3 million, let’s press ahead with making 2.3 million of the 2.6 million (91%!!!) who claim ESA unemployed too! And hang it, let’s add 750,000 or so of the most profoundly ill too, by “assessing” DLA all over again.

    They can’t do much about it, after all.

    But, as OMBH has shown, we can. And this time, we will. "

    tags: uk benefits politics cosmos

  • "I wonder how they’d feel about abolishing benefits and allowances or restricting their availability once they had some experience of attempting to walk a mile in disabling shoes? "

    tags: uk benefits politics cosmos

Posted from Diigo. The rest of my favorite links are here.

Pamela is a former accountant, recovering journalist and international cat herder, disabled and chronically sick with Myalgic Encephalomyelitis, Fibromyalgia and Cervical spondylosis, fluent in three languages; English, Spanish and Rubbish. Mostly writes in the latter. She likes Genealogy, Model Railways and Cats.

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