Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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BMJ & Guardian team up

Discussion in 'Other Health News and Research' started by V99, May 22, 2010.

  1. V99


  2. V99


    Has anyone posted this before?

    I wont put anymore, but there is more there. What can I say....
  3. Wonko

    Wonko Senior Member

    The other side.
    I'm stunned - 2 recent articles in the Guardian that seem on the face of it to be pretty unbiased? whats going on?
  4. Min

    Min Guest

    The Guardian is not unbiased; it's very biased. It seldom prints anything but the Wessely school of thought on M.E. Even their recent in depth article on M.E. , whilst purporting to show all sides of the situation, if read carefully subtly presented anyone who doesn't accept the useless treatments CBT & GET as conspiracy theorists.

    The Guardian printed the 'Dr Crippen' column that regularly poked fun at us. Ben Goldacre, Wessely's colleague, works for the Guardian & has his Bad Science column there.
  5. Mark

    Mark Former CEO

    Sofa, UK
    Sorry V99, but no, those pages you're highlighting with BMJ advice are not looking good at all to me.

    The definitions they are using have far too short a list of symptoms; only the vaguest mention right towards the end of unspecified 'immune' symptoms, where is the emphasis on the well-documented immune abnormalities, sensitivities, frequent colds or not catching cold, all the other stuff we talk about here? No mention of orthostatic intolerance, neurological symptoms, IBS etc? Their definition is so broad as to cover any kind of chronic unexplained fatigue. As my own experience has demonstrated clearly to me, it is possible to get nearly all of the BMJ's listed symptoms from anything that causes ongoing disturbance to sleep. What they describe is extremely vague, so that it includes such a wide range of 'waste basket' conditions that they are all impossible to study. The information strikes me as incredibly thin frankly.

    But this is the killer:

    From the top...


    Chronic fatigue syndrome

    What treatments work?

    No one knows what causes chronic fatigue syndrome (CFS), and there is no real cure. But there are some treatments that may help you feel less tired so you can be more active and enjoy life more.
    • Programmes of exercise that start gently and become gradually more energetic can help with chronic fatigue syndrome.
    • A form of talking treatment (psychotherapy) known as cognitive behaviour therapy can also help.
    • There is no reason to believe that resting in bed for a long time will make you feel better. It may even make you feel worse.
    We've looked closely at the research and ranked the treatments into categories, according to whether they work. For help in deciding which treatment is best for you, see .
    Treatments that are likely to work

    Cognitive behaviour therapy

    Cognitive behaviour therapy (CBT) is a form of talking treatment that tries to change your thinking and behaviour in a positive way. You meet with a trained therapist for several sessions. The exhaustion you feel with chronic fatigue syndrome is mental as well as physical, which is why this treatment may help.
    A review of the research (a systematic review) looked at 15 good-quality studies of CBT for chronic fatigue syndrome.[1] It found that:

    • People who had CBT were more likely to feel less tired at the end of treatment than people who received usual care from their doctor or were on a waiting list for CBT. Overall, 40 in 100 people who had CBT showed improvement, compared with 26 in 100 of those who did not.
    • When researchers followed up with people one to seven months after their treatment had ended, those who'd had CBT still had less tiredness than those who had not.
    • People having CBT were also more likely to feel less tired than those having other types of talking treatment, including relaxation therapy, general counselling, or education and support. Additionally, they were able to do more physically, and had less depression, anxiety and symptoms of distress.
    A study not included in the review also found that CBT helped young people (aged between 10 years old and 17 years old) feel less tired and be able to do more, including going to school.[2]
    None of these studies found any harmful side effects from CBT. However, in one of the studies, a quarter of the people having CBT or attending support groups dropped out of the study partway through. This could have been a sign that they found it too tiring to take part, or perhaps they just felt it was not helping them.[3]
    Graded aerobic exercise

    Aerobic exercise is any continuous activity that makes your heart and lungs work faster to supply blood to your body's large muscles (such as those in your legs). It includes walking, cycling and swimming. Graded aerobic exercise is exercise that builds up gradually from a gentle beginning. This type of exercise may help you feel less tired.
    Good-quality studies (randomised controlled trials) have found that graded aerobic exercise for chronic fatigue syndrome was more likely to help people feel better than:

    • A treatment that focused on stretching and relaxation[4] [5]
    • A treatment that provided general advice on aerobic exercise[6]
    • Normal care from their family doctor (that did not include advice about exercise).[7]
    Another study (a randomised controlled trial) found that people were more likely to feel better if they were taught graded aerobic exercise through an educational programme than if they got written advice on how to do this exercise.[8]
    None of these studies found any harmful side effects from doing aerobic exercise. But doctors think that people with CFS may feel worse if they do too much exercise too soon. That's why doctors advise that you should only do graded exercise that is prescribed and supervised by a trained therapist, such as a physiotherapist or sports therapist.[9]
    Treatments that need further study


    Antidepressants are medicines that are normally used for depression. There are several different types. The ones used in the studies of people with CFS include fluoxetine (brand name Prozac), sertraline (Lustral), moclobemide (Manerix), and phenelzine (Nardil).
    A few good-quality studies (randomised controlled trials) have looked at whether people with chronic fatigue syndrome feel better when they take these antidepressants, but the results of the studies aren't clear.[10]
    Also, these drugs can cause side effects, such as sweating, shaking, dry mouth, constipation, dizziness, stomach upsets, anxiety, sleeping trouble and headaches. In one study, a third of people taking fluoxetine stopped taking the drug because of side effects, although a fifth of people taking a dummy treatment (a placebo) for comparison also stopped because of side effects.
    Research has found that taking antidepressants of all kinds can make some people more likely to think about suicide or try to harm themselves.[11] Young people under 18 are especially at risk. You are more likely to think about self-harm in the early stages of your treatment, or if the dose of the antidepressant you're taking is changed.[12] If you're taking an antidepressant and are worried about any thoughts or feelings you have, see your doctor or go to a hospital straight away.[12]

    The full name for these drugs is corticosteroids. They are a group of drugs that are used to treat various illnesses, including ones that affect the immune system (your immune system helps protect you against infection). They are not like the steroids used by bodybuilders (those are called anabolic steroids).
    Two of these drugs, fludrocortisone and hydrocortisone, have been studied to see whether they work any better for chronic fatigue than a dummy treatment (a placebo).[10] The results of the research aren't clear.
    These drugs can cause side effects. In one study of fludrocortisone, 3 in 25 people found the medicine actually made their symptoms worse.[13] And in another study, high doses of hydrocortisone made 4 in 10 people's adrenal glands stop working properly. Adrenal glands make the body's own corticosteroids.[14]
    About 1 in 20 people find that steroid tablets affect their mood.[15] This can happen a few days or weeks after you start treatment. You may be irritable, anxious or confused, or have trouble sleeping. Or you can get an unusually high mood (euphoria). Rarely, people get more serious side effects, such as thinking about suicide or seeing things that aren't really there. It's also possible to get these side effects when you stop taking steroids.
    Your doctor should explain the benefits and risks of steroids before you start taking them. If you get any worrying symptoms while you're taking steroids, see your doctor straightaway.
    Dietary supplements

    One small study (a randomised controlled trial) looked at whether a tablet containing vitamins, minerals and other nutritional supplements worked better for chronic fatigue than a dummy treatment (a placebo).[16] The results weren't clear, possibly because the study was too small to give reliable results. But three people taking the tablet felt sick enough to stop taking part in the study.
    Another good-quality study looked at a supplement called BioBran MGN-3. After eight weeks, people who took the supplement still felt just as tired as people who took a placebo.[17]
    Evening primrose oil

    Evening primrose oil contains an essential fatty acid called GLA. Essential fatty acids have this name because it's essential you get them from your food. Your body cannot make them. Evening primrose oil has been suggested as a treatment for several health problems. The idea is that it may help restore the body's natural balance of fatty acids.
    You should talk to your doctor or pharmacist before taking evening primrose oil or other supplements. Some supplements ca


    the page goes on to list many more treatments - much further down the page - a dumbed-down sentence or two on each, one by one mentioning them in a less than encouraging fashion; really it's that CBT and GET you want...or perhaps antidepressants and steroids?...

    No. Guardian needs to challenge the BMJ, BMA, GMC. I'll stick with the Independent, even if I do miss the crossword...
  6. Adam


    Sheffield UK
    Sorry Mark. Could not read it all. Did they mention chocolate or pole dancing or Polecats for that matter?
  7. Knackered

    Knackered Guest

    Ferret down the trousers might help a bit.

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