Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Old (2004) article from The Times

Discussion in 'General ME/CFS News' started by Esther12, Dec 29, 2011.

  1. Esther12

    Esther12 Senior Member

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    Just thought I'd post it here so people had a copy archived:

    A couple of bits stood out as reminding me of the sort of patronising and irrelevant responses I got from some doctor upon falling ill (which was particularly irritating as I was stupid enough to trust their initial reassurances, and adopted a dementedly positive attitude. Lying turds.)

    Shaking off the tiredness

    by Barbara Rowlands
    September 9 2004 12:00AM



    Fatigue has become an all-too-common complaint that robs us of enjoyment at home and at work

    WEDGED IN THE queue between the patients with aching backs and those with throbbing temples are the permanently exhausted. They have only just managed to drag themselves to the doctors surgery and now, slumped over tattered copies of Bella, they hope that someone can provide an answer and restore their vigour.

    In community studies, one woman in five and one man in ten reports being abnormally tired, while 0.5 per cent of the population have chronic fatigue syndrome (CFS). Although there are no up-to-date national figures, a population study published in the British Medical Journal some years ago found that between 10 and 18 per cent of GP patients reported fatigue lasting for six months or longer.

    Tiredness is a significant problem and very common, says Dr Peter White, a consultant psychiatrist and reader in psychological medicine at St Bartholomews Hospital, London. It affects quality of life at home and at work. Tired people also go to their doctor more often; more often even than those attending outpatients for other chronic conditions such as rheumatoid arthritis, says White. They take up a lot of healthcare resources. For those with chronic tiredness, with no obvious physical cause, its disabling.

    Tiredness is also a risk factor for accidents, whether in the home or at work. When people are tired they are not able to concentrate properly; this is when mistakes are made, says Karen Blanchette, of the Royal Society for the Prevention of Accidents. Research shows that up to 20 per cent of accidents on monotonous roads, such as motorways, are related to tiredness.

    Fatigue is not only ubiquitous, it has been around for centuries, says Dr White. But what has changed is that doctors have becoming practised at unpicking the sick from the simply sleepy, with myriad possible diagnoses. Medically, tiredness is defined as an abnormal perception by the patient of a lack of energy, or a feeling of tiredness that the patient considers to be abnormal. (The oft-used tired all the time syndrome is a label used to describe patients whose symptoms are not clearly caused by a specific illness).

    Tiredness can be caused by any one of hundreds of conditions, but the GP has just 10 minutes an average consultation to come up with an accurate diagnosis. We have to get the patient to tell the story, says Dr Catti Moss, a GP and spokeswoman for the Royal College of General Practitioners. Mostly, people have analysed their tiredness. Its just as important to find out what people think about their tiredness as it is to learn their symptoms. You have to find out what the patient thinks is wrong or what the patient is worried might be wrong.

    The most common conditions linked to tiredness are diabetes, anaemia (usually caused by heavy periods or internal bleeding from a gut disorder), viral infections and a low metabolic rate, caused by an underactive thyroid. Crash dieting also causes tiredness there is some anecdotal evidence that the Atkins diet causes fatigue as do most things connected with the reproductive cycle, from menstruation to breast-feeding (any process that involves growth, such as a growth spurt in adolescence or the production of milk, which requires energy).

    Most people know why they are tired, says Dr White, and when they should see their doctor: If youve been burning the candle at both ends, dont bother to go at all. But if the fatigue is unexpected or unexplained, or significantly disabling and stopping you from doing something, go after a couple of weeks. The GP will try to eliminate various conditions with the usual tests taking the patients blood pressure, as well as giving urine and blood tests to reveal the state of health of the liver, kidneys and thyroid and to measure the hormone levels and proportion of infection-fighting cells in the blood.

    So, what if you are given a clean bill of health? Worries allayed, do the perpetually tired bounce back to life as if they had had a double espresso or couple of Pro Plus? Not according to Dr Moss, if the person sitting in front of her has the wrong attitude to their tiredness. I know from practice that how a patient thinks about his or her tiredness predicts the way it develops into a chronic syndrome or not. Those who are fairly confident that they will get over the tiredness as fast as they can nearly all get better. The attitude doesnt cause something, but it makes a difference in the same way it does in recovering from any serious injury. You can predict which people are going to be crippled by a broken leg by their attitude.

    How you perceive your life, and your health, is at the heart of fatigue/energy levels, says Dr White. Perfectionists suffer most. People who are perfectionists tend to report more fatigue than those who are not, he says. Perfectionists demand more of themselves and do something to the nth degree. They also worry more about whether they have done things adequately, and its worry that makes you tired.

    If you react to stress by becoming low in your mood or worrying excessively, that seems to cause more fatigue. The worst thing you can do is to avoid things. Face up to the problems in your life, rather than hiding under the duvet.

    But attitude is just part of the equation. Metabolism and levels of the brain neurotransmitter serotonin low levels of which are linked to a range of emotional states, including depression are intricately linked to our energy levels. Genetics, too, play a part. Dr Simon Wessely, professor of epidemiological and liaison psychiatry at the Institute of Psychiatry, London, and the leading expert on CFS in the UK, has conducted large-scale research which shows that genes have a role in the reporting of fatigue. Clearly personality has a major influence on the perception of symptoms and the willingness to report symptoms, and also what one does about them, he says. While there are subtle physiological differences in the immune system between the energetic and the fatigued (the activity of natural killer cells, for instance, is reduced in people with CFS), no researcher has yet linked these to symptoms.

    The most successful treatment for fatigue not linked to a specific condition is cognitive behavioural therapy, which changes the patients attitude to lethargy; but, at 80-90 a session, its expensive. Dr Moss has a six-month waiting list for CBT in her practice and so, like many GPs, she refers them to an NHS counsellor or practises short contact cognitive therapy. Its just what happens in the consultation, she explains. You see them at regular intervals and help them to be positive and change the way they think about their symptoms. It may take three or four months, it could take years.

    A simple lack of sleep may be the problem although, bizarrely, this is sometimes missed. It is a diagnosis that can be made using the so-called Epworth Sleepiness Scale: this is a series of eight questions listing innocuous activities, such as sitting and talking to someone or watching television, to which you can give yourself a rating from 0 for would never doze to 3 for high chance of dozing. If you score 10 or over, you are sleepy, not tired.

    Sleepy patients often describe themselves as fatigued but, says Dr Adrian Williams, a consultant physician at St Thomas Hospital, London, and director of their sleep disorders centre, doctors dont often ask about sleep patterns. The GP needs to exclude general medical conditions, but he or she needs to ask about the quantity and quality of sleep, he says.

    Lack of sleep causes sleepiness, but not necessarily because you are staying up too late. Snoring deprives a partner of sleep, while obstructive sleep apnoea a condition in which someone stops breathing for several seconds, forcing them to wake up with a snort and a judder also steals sleep.

    About 9 per cent of us have obstructive sleep apnoea, sometimes waking unconsciously between 300 and 400 times a night, but many sufferers are unaware of their condition. Treatment is with the nasal CPAP (Continuous Positive Airways Pressure) machine, which works by pumping in air and opening the air passages. It works well, but three out of ten sufferers find wearing a mask all night too much. Cutting out drinking and smoking and losing weight may be enough to alleviate sleep apnoea.

    Another stealer of sleep is restless leg syndrome (RLS), which affects 10 per cent of the population. Like snoring, noctural leg-twitching may raise a titter, but such is the profound impact that it has on sleep, and consequently on work and wellbeing, for at least 3 per cent of the population, that sleep specialists have established an academic group to raise awareness of RLS among primary care and other healthcare professionals and to promote research.

    Its quite a serious sleep disorder that affects a lot of people, says Professor Jim Horne, head of the sleep disorders centre at Loughborough University. Their sleep is disturbed and, unless they are really awake, they wont be aware of it.

    Mild RLS can best be treated with lifestyle changes, and sometimes with iron supplements. Disabling RLS may require drug treatment.

    COMPLEMENTARY AID

    Cognitive Behavioural Therapy (CBT) can be useful for treating tiredness.

    Liquorice root contains substances that reduce the breakdown of some steroid hormones made in the adrenal glands, so increasing levels of natural steroids that can give a temporary energy boost.

    Lack of iron is a common cause of chronic tiredness, particularly among women.

    Yoga reduces fatigue. Research in the journal Neurology found that regular yoga is as effective as regular exercise in improving fatigue in people with Multiple Sclerosis.

    The nutritional supplement L-Carnitine, a non-essential amino acid produced in the liver, may help.

    Walking boosts energy levels. A study at Indiana University concluded that a minimum 20-minute walk, at a pace that left subjects breathing hard but not exhausted, was one of the easiest ways to boost mental health and reduce fatigue.

    PREVENTION
    After flu or a virus, get up and back to normal activities in a gradual way.

    Develop a good sleep routine. Go to bed in a darkened room at roughly the same time every night. Avoid coffee or alcohol in the evening.

    Take regular physical activity to maintain or gain fitness.

    Make sure you are neither too thin nor too fat. Obesity leads to diabetes and sleep apnoea.

    Maintain a good balance between work and play, and try to resolve stress.

    Eat a balanced diet. A diet full of fresh fruit and vegetables will increase your energy.

    www.restlesslegs.org.uk

    The British Snoring & Sleep Apnoea Association: www.britishsnoring.co.uk

    Action for ME: (helpline 01749 670799) www.afme.org.uk

    The Royal College of Psychiatrists leaflet on tiredness is at www.rcpsych.ac.uk/info/factsheets/tired.asp

    edit: while I'm archiving stuff, I just stumbled upon this Michael Fitzpatrick article, which was originally on Spiked, but got reprinted here in The British Journal of General Practice. I've not had time to re-read it yet, but wanted to see if any changes had been made since the earlier version:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314310/pdf/12014553.pdf
     
  2. biophile

    biophile Places I'd rather be.

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    I found a URL but it seems to be a paywall: http://www.thetimes.co.uk/tto/health/article1788481.ece

    They assume that we just have to relax without reducing function and think about our symptoms differently, then the "abnormal" symptoms will resolve and/or the impact of "normal" symptoms on our lives will disappear despite remaining symptoms. If only it was that simple most of us would be cured by now or at least within the PACE definition of "normal"! With these sort of "experts" influencing the perception and research of ME/CFS, no wonder there has been little progress over the last few decades.

    Judging from Moss' statement, what probably happens is that all cases of presumed-idiopathic fatigue are being lumped together without consideration for the possible differences in causes and additional symptoms and overall characteristics of each person's condition. Only a small proportion will have CFS, and those patients with more severe fatigue and multiple other symptoms may have a different "attitude" to someone who has transient fatigue due to other reasons, because the characteristics are different. Similarly, some of those with fatigue who also have depression will be in the early stages of a legitimate chronic depressive illness, so of course what Moss perceives as a "negative attitude" is going to "predict" chronicity.

    Questionable statements and interpretations aside, this article is a good summary of the biopsychosocialist perspective on ME/CFS and how they see themselves or their critics.
     
  3. biophile

    biophile Places I'd rather be.

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    Their message is clear: CFS/ME is primarily a mental health problem.

    Notice that the recovery rate remaining permanent 5 years after CBT is probably based on a small single study but rcpsych.ac.uk is presenting it as established fact in general.
     
  4. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    Confirmation bias at its worst.

    It is still interesting that they've got all of the unproven myths about CFS all in one place though!
     
  5. Esther12

    Esther12 Senior Member

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    We need to study this wonderful woman's remarkable abilities.

    Given the piss-poor results we've had so far for identifying personality or psychological factors that predict the development of CFS, she could be a real breakthrough. Or... is it possible that... maybe this is just another example of the sort of lazy untested bigotry that surrounds CFS? Maybe she's not as capable of predicting these things as she believes, or mistakes the severity of an individual's condition for a sign of a negative mental attitude? What a surprise that would be.

    How could they know such a thing? We know that a number of viral infections do continue, and could play a role in causing all manner of different conditions. It seems that EBV is now being implicated in a number of different chronic conditions... yet they know that people with CFS/ME have no continuing infection with the virus when their illness is caused by glandular fever?

    Thanks for the comments biophile, I'll go back to that fitzpatrick thing later.
     
  6. Esther12
    it's crucial that peopel realize the link with "SPIKED", Science Media Centre, psychobabble, etc etc.
    go read up on them. folks and ask yourselves why they are so involved with this? WHy so antiGlobal Warming etc? (another area they are "anti")

    Always FOLLOW THE MONEY!
    So where IS the money in all this?
    Money being threatened, that's what, only explanation for all this we suffer from these assholes

    from Marxist-Leninists at the start, to neo-corporate-Libertarians nowadays...their language is NOT that of compassion or logic, but strident, evil, inhumane, dogma.
    Ayn Rand was a twisted, evil woman, alas such selfish wickedness is alluring to those of a sociopathic bent and "stupids" out there :/

    Extremists are dangerous, no matter what stripe.
     
  7. Esther12

    Esther12 Senior Member

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    I'm just going to post a few more vaguely relevant links in here. Sorry for clogging up the forum, but I think this might be the best way for me to store them at the moment (I'd advise that others ignore them... the following links make no specific reference to CFS).

    In 2001, around when I first go ill, and (I now realise) was being exposed to all manner of paternalistic psychosocial manipulation, the head of the GMC was speaking out about exactly the sort of problems I was facing. A shame no-one was held accountable for any of it.

    http://news.bbc.co.uk/1/hi/health/1119920.stm NHS 'fails to respect patients'

    Lancet coverage (paywall): http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)71316-7/fulltext

    related bit: http://www.perceptions.couk.com/morovert.txt

    More recent bit by same guy on GP regulation: http://jrsm.rsmjournals.com/content/99/9/430.full
     
    Snow Leopard likes this.
  8. *GG*

    *GG* Senior Member

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    Concord, NH
    Yes, follow the money. So what will global warming due to "rich" countries versus poor? Speaking of Marxist/Lenninist crap. Yes, look at your gov't and how it treats you. How is that working out for you? I dare say I am doing better than most with this disease, and the system I live under is different and better.

    Not all that familiar Ayn Rand, but I fear gov't more than I fear Liberty! Perhaps it is good that I am on this side of the pond.

    GG

    PS Not everyone has your views you realize?
     
  9. Hm? :)
    if you want a gab on such subjects as you may reffer to please be my guest!
     

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