Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Reaping the benefits of sickness? Long-term illness and the experience of welfare claims

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Aug 27, 2013.

  1. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Mistaken ideology drives most of the evils of mankind so far as I can see. When we are wrong, but so sure we are right, we can drive through with an agenda regardless of the harm it does.

    Here is something about economics and the 2008 economic crisis, in which there is a parallel between what is claimed here, and what I see in psychogenic medicine:

    (My bolding.)

    If their ideology says there is no need to worry about those making benefits claims and the system failing, then many will dismiss the problem. If the researchers are sure they understand what is going on, they will dismiss, trivialize or sideline counter-claims. They may create diversions such as claims of mavericks, extremists or people following other debunked ideology.

    Freudian theory was full of this inward looking internal logic. Everything could be explained from within the system.

    If someone has devoted decades of their lives to psychogenic or BPS theories, built their careers on it, then their mind will interpret things seen through BPS designed goggles. Being academics, they will seek to explain away any issues ... defending their ivory towers. As clinicians they could not easily accept they are wrong either - otherwise they spent decades doing the wrong things to patients. If an investigator asked the chicken farmer if something is wrong with the chickens, the investigator will probably hear "no", everything is under control. Criticism should come from elsewhere in medicine and academia, but this very rarely happens, and that's a problem for all of medicine, psychology and psychiatry. More should speak out than currently do. Their silence gives consent.

    If someone has any doubts, then strong voices supporting them may quell those doubts. These voices, in the case of BPS, come from government, government institutions and the insurance industry. See my old blog:

    Its worse within politics. They are used to operating in an environment of dissenting views, and supporting their own view in argument regardless of what the opposition is saying.

    Evidence that can establish that these are false views of the world is good, and bit by bit it can alter the discussion. However so very much of this is political, and not based on sound reason. Whoever has the most persuasive voice is heard the most.
    MeSci and Sean like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    I wish there was an alternative to 'like' for stories like this, as they are so awful. I so wish I could wave a magic wand and stop all this crap happening. I had the council tax benefits people asking me what I was living off too. I told them the truth, which was Working Tax Credit and my credit card and an overdraft! The council tax people are the worst in the UK in my experience. The Working Tax Credit is paid to supplement the income of people who can't earn much money, and if you are disabled you get a bit more, but if you can't work 30 hours a week you get less! But it's easy to get. That is likely to change when they change over to a new system and replace it with so-called 'Universal Credit', where even if you are working you will have to attend a Work Capability Assessment - the thing that is causing so much grief now to people trying to get disability benefits. And self-employed people will be expected to be paying themselves the official minimum wage within a year. For a high proportion of disabled self-employed people, including me, this is unachievable.

    Back to Council Tax benefit. A council woman came to my door unexpectedly one day, stinking of artificial perfume which sent me reeling. Seeing this, she 'reassured' me, thinking that I was anxious, and said it was just a routine visit. BS! I don't think they do these. I was probably being suspected of fraud, perhaps being reported by a neighbour as a probable benefit cheat. She left my furniture permeated with her perfume, and I had to have the door open and the extractor fan on - in cold weather - and spend the next few days draping layers of blankets and curtains over the chair - which I was of course unable to use - and then washing them. I got exhausted and cold.

    Every year if there has been a significant change in my earned income (which ranges from a loss to (rarely) about £2000 a year) I diligently contact the council in April before my busy plant season starts. And every year they reply two months later demanding lots of detail about income and expenditure in a form which is different from what I supply to the tax people and the Working Tax Credit people, within a very short time. So now I am in my busy work period and having to take time out of my work to do more accounts, thus losing money.

    This year I haven't told them of any changes yet, as they were only very minor, as I just want to get on with my work and have had numerous spells of brain fog so that I have not been able to do any figure work. I only hope that I don't get penalised.

    With my qualifications I should be earning about 100 times what I do. Thanks to ME, I can't. And no employer would hire me due to the condition being so unpredictable. I thought I was doing the sensible, responsible thing trying to make some money from self-employment.
    peggy-sue and Valentijn like this.
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    MeSci , if I were able to work I could replace my pension in an easy short afternoon a week. The system is about the rules, and most of the people who implement it don't understand what it is for, they only understand what the rules say.

    I battle bureaucracy gone mad quite frequently here in Australia. I guess its the same everywhere. They get upset as well when I don't claim money that is owed to me. What, how can that happen? They expect me to be able to function, but there are few services designed to help. I am guessing that they never even suspect there are people who are owed money who don't claim for it, while at the same time presume that people who are claiming may be dishonest and need to be investigated. The checks and balances in the system do not work, and are weighted in favour of bureaucracy, not the sick.

    Its not easy to deal with the benefits system when really sick. I think its harder to deal with sickness benefits here, than it is to deal with disability pension, as you have to provide forms very regularly, and doctors certificates (I was doing this in the 90s, so it might have changed, but I doubt it) and if are are too sick to do that ... penalties. Indeed when I was too sick to jump through the hoops, I had benefits denied to me for a bit. You can be sick, but you can't be very sick and unable to function, that's not in the rules.

    I was very lucky to get my disability pension, I got it on the basis of severe problems that are recognized (e.g. apnoea), not the very severe problem that they do not recognize, ME.
    Valentijn likes this.
  4. Sean

    Sean Senior Member

    Depending on the outcome of our looming election, it could easily get a lot worse for us Australian patients before long.

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