Sunday, 30 January 2011

Links of Interest (weekly)

  • "... 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."

    tags: me_cfs cosmos

  • "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. "

    tags: me_cfs cosmos

  • "A useful, but admittedly more blunt heuristic might be: "If it's in the Daily Mail, it's probably not true." "

    tags: dailywail cosmos

  • "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!

    tags: me_cfs cosmos

  • "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."

    tags: fibromyalgia cosmos

  • "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."

    tags: uk benefits cosmos

  • "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?"

    tags: me_cfs fibromyalgia cosmos

  • "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."

    tags: me_cfs cosmos

  • "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)."

    tags: me_cfs depression cosmos

  • "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."

    tags: fibromyalgia depression cosmos

  • Brilliant list. My current arrangements fail on pretty much everything, but this is a list for any future home to aspire to.

    tags: cosmos

  • "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."

    tags: uk benefits cosmos

  • "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.

    tags: me_cfs cosmos

  • "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."

    tags: uk benefits politics disability cosmos

  • "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. "

    tags: me_cfs fibromyalgia cosmos pain disability

  • "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."

    tags: cosmos

  • "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."

    tags: uk disability cosmos

  • "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."

    tags: uk cosmos

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

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.

Monday, 17 January 2011

What part of the word workers …


Zapatero: “… and workers will have to contribute for at least 35 years  to be able to qualify for a 100% pension.”

Questioner: “Excuse me Mr President, will this measure also be applied to members [of parliament]?”

Zapatero: “Eh … What part of the word workers didn’t you understand?”

I reckon this translates pretty literally to most languages, don’t you? Smile 

Cartoon by Komikelx via: Canarias Insurgente

Sunday, 16 January 2011

Breakfast around the Mediterranean

100_0971I wish! Sadly, this rare and unusual Sunday morning treat is as close as I can get at the moment and consists of Spanish Serrano ham (from the Co-Op and disappointingly short on flavour), Greek feta cheese (Athos brand, which is the cheapest, yet the best of those found in average supermarkets).

And, finally, Italian-style Parmesan & Sun Dried Tomato Bread, which I baked – and look, it even rose! OK, so it comes from a packet and the bread machine did all the rest, but it was all warm and home-made smelling and still an achievement.

And still 1,000,000 times better than any processed, chemical, sliced crap.

Unfortunately, despite loving them, all three of these are on my “forbidden list” of foods to which I have some degree of intolerance (the cheese least so) and I will “pay” later, but I cannot live without the occasional pleasure.

Do you think you could live without any pleasures in life?

Get that cat off the kitchen counter ...


The chances? I hear cat hair is a good source of protein anyway. Smile

Links of Interest (weekly)

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

Sunday, 9 January 2011

Links of Interest (weekly)

  • "If Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) actually worked, you would hear lots of stories about cured patients. Can anyone remember having heard such stories? Do you know anyone who has been ‘cured’ by these methods? Or are you still reading and hearing lots of stories about uncured, long-term patients?" Excellent point!

    tags: me_cfs cosmos

  • "By that I mean that the standards for mobility and care levels are fairly well defined; organisations which deal with disabled people and assess their need can simply look at the individual’s DLA award to understand what that person’s needs might be, rather than reinventing the wheel and creating their own assessment system. In many cases, receipt of DLA at a certain level provides automatic entitlement to other benefits and services."

    tags: uk benefits politics cosmos

  • "... and it may be possible to develop special drugs for XMRV which will be more effective – if the drugs companies remove their collective skulls from their colons and get on with the job. "

    tags: xmrv me_cfs cosmos

  • "Disability lawyer Mike Charles told the BBC the moves could be unlawful if they denied individuals the right to quality of life." (Exactly what I said about the cuts months ago.)

    tags: uk benefits cosmos

  • "I have had severe M.E. for over 30 Years. I am one of the 25 percent-ers (the 25% of sufferers who are mostly house-bound and often bed-bound with only about 3 hours of 'up' time daily). I have severe relapses, often, completely helpless and bed-bound for months at a time. My story is reminiscent of most - a story of misdiagnosis, mistreatment, disbelief, trivialisation, etc."

    tags: me_cfs cosmos

  • "Excitotoxins are substances added to foods and beverages that literally stimulates neurons to death, causing brain damage of varying degrees. They can be found in such ingredients as monosodium glutamate, aspartame (Nutrasweet®), cysteine, hydrolyzed protein, and aspartic acid. Dr. Blaylock's book describes what excitotoxins are, where they are found, and how they react in the body. Dr. Blaylock, a board-certified neurosurgeon, presents the latest research findings to demonstrate how exposure to excitotoxins will damage nerve cells in the brain. The use of aspartame, hydrolyzed vegetable protein, and monosodium glutamate in prepared foods and beverages continues to increase on a yearly basis. Dr. Blaylock clearly demonstrates that the neurotoxic potential of excitotoxins such as MSG and aspartame is so overwhelming that it can no longer be ignored. The message contained in this book is of particular importance to members of high-risk groups; the elderly, young children and those people at risk of or with a family history of neurodegenerative diseases. "

    tags: cosmos

  • "In this study, rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.

    After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.

    When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators."

    tags: me_cfs xmrv cosmos

  • "The physical symptoms of fibromyalgia and chronic fatigue syndrome are plenty bad, but the mental ones can be just as debilitating. They also come in many forms, each of which can range from mild to severe."

    tags: fibromyalgia me_cfs cosmos

  • "There are few areas of life that have not been touched. From football clubs to pubs, foxhunts to poetry readings, circuses to the backs of the school bike sheds, playgrounds to political protests – everyday activities are either now banned or highly regulated."

    tags: uk cosmos

  • "These preliminary results demonstrated the utility of salivary proteomic analysis in the identification of salivary biomarkers in FM patients and in clarifying some of the pathogenetic aspects of the disease."

    tags: fibromyalgia cosmos

  • ... which is kinda unlikely to just be "in your head", we reckon.

    tags: me_cfs cosmos

  • Unlike many other health conditions, IBS relief does not often happen by taking one simple medication. Instead, IBS sufferers typically use a variety of strategies to reduce their symptoms.

    tags: ibs cosmos

  • "... once more the health and wellbeing of the chronically sick is being put at risk by the bean-counters."

    tags: uk cosmos

  • "Exercise is another hoax. Doctors tell you all you need to do is exercise. What they don’t accept (in spite of my telling them over and over and over and over) is that when a person with ME/CFS exercises, they feel worse and may even be flat on their backs for the next week."

    tags: me_cfs cosmos

  • "Griffiths used official statistics gleaned from the Department for Work and Pensions (DWP), the tribunal service and social security statistics to get to "at least" 500,000 wrongly barred from incapacity benefit since 1996."

    tags: uk politics benefits cosmos

  • "Strong industry opposition sees Defra ignore concerns about overuse and the spread of antibiotic-resistant bugs from farm animals to the food chain and rule out a ban on the advertising of antibiotic drugs to farmers"

    tags: uk environment food mcs cosmos

  • "In the first-ever quantification of energy expended by humans during sleep, a University of Colorado team has found that the metabolic cost of an adult missing one night of sleep is the equivalent of walking slightly less than two miles."

    tags: fibromyalgia me_cfs sleep cosmos

  • "This, to me, is a staggering sum of money to be spending on testing every individual on incapacity benefit to see whether they are ‘deserving’ of it."

    tags: uk benefits cosmos

  • tags: me_cfs cosmos

  • tags: cosmos

  • "I have nothing left to say, except that marijuana SHOULD BE LEGALIZED! "

    tags: cosmos

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

Friday, 7 January 2011

Your Border Collie is smarter than you

imageWell, s/he’s probably at least half as smart, really:

“Researchers at Wofford College discovered that a border collie comprehends the names of over 1,000 objects, differentiating between names of objects and orders to fetch them.”

Actually, I think this story is begging (pun intended, dog, beg, geddit?) to be used for a spoof news article, explaining that research has found that these dogs are smarter than …

Oh, let’s say right-wing politicians and Daily Fail readers, for starters.

And you have to giggle at how close “Wofford College” is to “Wooford …”

Anyway, I was once taught that for “average” everyday conversation, you only need a vocabulary of 2,000 words. It’s all most of us use, most of the time (I used this information to inspire myself to learn the basics of foreign languages.)

So, the potential is there for a border collie to be smarter than you.

It puts our position in the “pecking order” into perspective, doesn’t it?

Not so smart now, are we?

Via: ScienceDaily

Wednesday, 5 January 2011

Metabolic Cost of Human Sleep Deprivation

imageInteresting article in ScienceDaily today, which begins:

In the first-ever quantification of energy expended by humans during sleep, a University of Colorado team has found that the metabolic cost of an adult missing one night of sleep is the equivalent of walking slightly less than two miles.

Now, if you’re a relatively healthy person, it might be difficult to really understand the implications of that. After all, walking a couple of miles isn’t THAT hard, is it? (Yes, I can remember a time when that - and much more - was easy to me too.)

Of course, if, like me, you also suffer from fibromyalgia and / or ME/CFS, you don’t need me to tell you what the effects of missing sleep are like.

It’s not really that easy to explain either, without sounding like I’m whining, but since I got only 4 hours sleep last night – which may as well have been none – I can relate completely. As well as feeling totally strung out, but somewhat hyper, I’m shaking a lot today – which is something I always do after physical exertion – and consequently, I feel generally sick and unwell. It’s worse than a bad hangover.

And, despite medication, I’m also in a LOT more pain today, particularly in my hip – one of the other things that causes this to increase is walking – but also in all of my joints. These are precisely the same effects that a 2 mile walk would cause me.

Because we have so little public transport in this area (4 buses a day, with the last at 2.30 pm, would you believe) and the bus hurts me with all it’s stopping, starting and jolting and, we are about a mile (actually 1.1 miles, according to Google maps, but they don’t know all the back alleys), I still know what walking 2 miles is like. Bleeding hell, let me tell you!

You have to remember that I am in pain before I even put a foot on the floor and any amount of walking increases that pain. So, when I have to go out, I always come home absolutely exhausted. The walking is more tiring for me than a “normal” person because of the fatigue, but it is even more so because of the constantly increasing pain that is then amplified again when exercise intolerance kicks in.

In my case, as I said, I always start shaking after any exertion. That sounds like nothing and it may not even be apparent to anyone else, but believe me, I can feel its effects; the worst is the feeling that my brain is being shaken about inside my head.

The knock-on effects of that include disequilibrium & nausea, like sea sickness.

Then the level of pain I end up in after an outing invariably means that I’ll have difficulty sleeping that night (equivalent to walking another 2 miles, instead of resting).

It takes a few days to return to something resembling a normal sleep routine for me and even longer to recover. Whenever I’ve tried to fit more than one outing – and we’re talking short ones: never until afternoon and home before tea time – into one week, the effects of the exhaustion become cumulative and lead to a full-on flare.

And those require me to take complete rest for weeks or sometimes months.

The article goes some way to explaining those cumulative effects, which are particularly relevant to those of with chronic sleep disorders, I think.

Monday, 3 January 2011

2011, so far …

imageIt’s still early in the year, certainly, but already, days 2 & 3 have been notable deteriorations from day 1 and this does not really bode well, as starts go.

To begin with, I’d slept through the New Year celebrations, because basically, I couldn’t be arsed. I felt so crap anyway, as I still had a stomach ache – it still feels like someone kicked me in the lower abdomen - after a painful attack of IBS on the morning of the 31st.

Over the Christmas period, the *price* for enjoying turkey, trimmings, pastry & sweet things (really, a LOT less of them than most “normal” people will have had) was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and (after curing those) days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS.

Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ...

Rinse, repeat, repetitively.

And there are only so many hour-long, gut-wrenching bathroom visits one’s body can stand. It left me feeling weak and ill, just as if I’d had serious food poisoning.

(Is it any consolation to think that, without the diarrhea attacks I might have put on more than just the 4 lbs I did over the Christmas Break? No. It. Isn’t!)

Only as long as I stick to my boring meat free, dairy free, wheat free, gluten reduced, chemical free (and consequently often flavour free) diet, mostly, can I keep attacks down to a minimum. Sometimes as long as a month apart. Weekly is more usual.

How often did I get these attacks when I lived in Tenerife? Once or twice, that I can remember, in all 16 years and it certainly didn’t ever need medication.

I’d suffered with, been diagnosed with and treated for IBS, twice, when I’d lived in the UK before; in around 1980 and again in 1989. And it wasn’t the only problem that either disappeared completely, or was reduced to a bearable level out there.

How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, in the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that …

Well, it has no quality. It’s hardly even a life.

In the meantime, I’m currently trying Venlafaxine (after finding that fluoxetine (Prozac) makes me sweat like a pig and though I tolerated citalopram well, that didn’t really help the situation) as I’d read that Venlafaxine is also well-tolerated, that it’s prescribed to treat orthostatic intolerance and postural orthostatic tachycardia syndrome (that I suffer badly) and, can help reduce the severity of the symptoms of hot flushes in menopausal women (and, by golly, mine certainly need reducing!)

Apparently, Venlafaxine has a similar effect to amitriptyline, which is what is always first prescribed (off-label) for fibromyalgia (it’s reported, because it’s so cheap) in the UK, but which I suffered really bad side-effects and couldn’t get along with.

(It’s the serotonin implications that one needs these anti-depressant drugs with fibromyalgia, not simply because one is depressed, although I am, severely, which should hardly be a surprise with the sum total of what I have to deal with.)

In addition to that, after 2 years of begging, I finally got some medication for pain: Gabapentin. Though, if I were a superstitious person, I might conclude that fate does not really want me to have this, because of the lengths I’ve had to go to to get it:

Once the pain levels became unbearable in the UK, way back in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline.

Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP.

The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred there. I eventually got assessed again in early 2010 and an appointment in the middle of the year, only to find that they cannot prescribe at all.

After all that, in desperation basically, I asked the GP for another referral back to the rheumatologist to (hopefully) a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.

So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist with it to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again then as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.

By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain over the holidays so I could possibly enjoy them for a change – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.

I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d also planned to get a taxi home on the 23rd, to try to mitigate the exhaustion part, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.

Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.

You don’t tend to open the bag at the time in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! I opened it when I got home and found that it wasn’t the Gabapentin, it contained Fluoxetine.

Back in August I’d had to go back and forth to the doctors umpteen times because a prescription had gone missing. At that time I did NOT have (had not yet made the arrangements) for the surgery to send my prescriptions to the chemist, so it was definitely the surgery who “lost” it … well, this was it, at the chemist all that time.

So I had to phone the chemist to see if they still had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and this time, ordered a taxi to take me up there, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.

So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it?

When I read the label, I discovered that the gabapentin contains lactose and I’m  lactose intolerant. You’d think it would be such a small amount that it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks.

Also, on the second or third day of taking it, I started getting severe chest pains and tightness again. At one point I was lying in bed and I could hardly breathe (and certainly couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for.

It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of the fibromyalgia and ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG done back in October.

Amongst other data, one reads thatIn a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, as this fits in with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.

And, since (amongst many other things), mitral valve prolapse (known to be co-morbid with fibromyalgia / me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also noted as related to / symptoms of) are cited as possible causes of PVC, it’s all a bit “chicken and egg”.

Did the PVC cause the fibro, etc., or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. Will I ever find a cure? Even more doubtful, I reckon.

I’ll see how it goes and what the GP says at some point, but otherwise, I’ve been advised that I may need to give the gabapentin three months before its therapeutic effects may be apparent. So, no, it hasn’t had any pain relieving effect yet.

Quite the contrary: I’ve suffered worse pain in the last few days than ever before.

Saturday, the 1st of the month and the year, I managed to check and update my meagre finances, pay the odd bill and generally “potter” a bit on the internet.

Yesterday, I couldn’t even manage that. I woke up too early, from not enough sleep, feeling already absolutely and utterly exhausted. By mid-morning I gave up. I couldn’t sleep, because I’d gone way beyond tired, but I couldn’t do anything productive either, so I lay down to half watch some banal TV that I didn’t need to think to follow.

Today, I wrote this, but otherwise, it ain’t shaping up to be a much better day. In what way can I see any of these things improving in 2011? Frankly, I can’t.

(Oh, the one piece of potential “good news” I have discovered so far this year is that one possible side effect of the Venlafaxine is weight loss, which is fantastic, since one of the potential side effects of the Gabapentin, apparently, is weight gain! Oh boy!)

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