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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Guardian Article - ME is still woefully misunderstood by our health and welfare systems

Discussion in 'General ME/CFS News' started by Bob, Aug 8, 2013.

  1. Bob

    Bob

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    ME is still woefully misunderstood by our health and welfare systems
    We got some help after my husband was diagnosed with ME but that soon evaporated. Friends and family had to step in.

    http://www.theguardian.com/commentisfree/2013/aug/08/me-misunderstood-health-welfare

    The Guardian.
    Lia Leendertz
    8 August 2013


    There are 62 comments after the article, so far... and counting...
     
  2. Kate_UK

    Kate_UK Senior Member

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    There is an excellent comment there that should be recommended by us all, so it goes to the top! It's this one....

     
  3. Bob

    Bob

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  4. Valentijn

    Valentijn Activity Level: 3

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    Very impressed by the comments so far. Only one comment about us being psych-threatening nutcases :thumbsup:
     
  5. Bob

    Bob

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    I've emailed the Guardian to ask them to remove the weblink to the Lightning Process. I don't want it to appear as if the Guardian are endorsing or promoting the Lightning Process.
     
  6. Bob

    Bob

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    I hope we're not losing our mythical status as being the most dangerous patients on the planet! o_O :rolleyes:
     
    Battery Muncher, ukxmrv, Tito and 2 others like this.
  7. biophile

    biophile Places I'd rather be.

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    As ironic as this may sound, the PACE Trial may have been a part blessing in disguise against the hidden agenda to goad CFS patients back into work prematurely. Part funded by the Department for Work and Pensions, and operated by those with declared conflicts of interest involving the insurance industry, you can be certain that if the PACE Trial demonstrated anything more than it did for CBT/GET (i.e. no improvements to employment outcomes, sickness-benefits, insurance payouts, total usage and costs of various services, etc), the situation now would be even a few shades darker.
     
  8. Sasha

    Sasha Fine, thank you

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    You're too kind! That's my comment. :cool:

    I started a thread on this earlier suggesting that other people use this (and future online news stories about ME that allow comments) to boost awareness of fundraising for the Rituximab trial. Please do join in on there, folks! The more mentions, the better - I said a bit about how best to go about this on this other thread:

    http://forums.phoenixrising.me/inde...ab-trial-mentioned-on-guardian-website.24641/
     
  9. Sasha

    Sasha Fine, thank you

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    BTW, unfortunately the only way of sorting comments appears to be by 'most recent' or 'oldest' - liking it doesn't seem to send it to the top of anything, unlike a lot of these comment pages. Thanks anyway, though! Doesn't hurt to show approval of a comment about the trial.
     
  10. user9876

    user9876 Senior Member

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    I thought this was an interesting comment about the institute of psychiatry at kings.

    http://discussion.guardian.co.uk/comment-permalink/25840694

    Basically it said CBT offered to help deal with chronic illness + pacing which is a very different message from that in pace. Then talks about the head psychiatrist saying its all in the mind including symptoms that were later attributed to something else.

     
    Ritto, merylg, Firestormm and 4 others like this.
  11. alex3619

    alex3619 Senior Member

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    I agree. I also think that its a Rosetta Stone, exemplifying everything that is going wrong in psychogenic medicine. Thats why I am working on my book. Its not just the PACE trial that does this though, their main papers or supporting documentation. Its all the press releases, press commentary, commentary from other psychiatrists, media coverage, etc. There is a pattern of distortion, hyperbolic and emotional rhetoric, ignorance of facts and reason, and scapegoating.

    if I were to make a linear graph of issues, which is not really accurate as perhaps a Venn diagram would be better (how do you combine Venn diagrams with nonlinear directed connection? - I have some ideas, more later) it might look like this:

    PACE -> Psychogenic Medicine -> Biopsychosocial -> Medical Insurance Industry -> Politics -> Economic Theory (efficient markets, economic rationalism)

    There would be side arrows going to Evidence Based Medicine, and other things too.
     
  12. biophile

    biophile Places I'd rather be.

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    After skimming the comments, I noticed that a few have pointed out that the DWP is ultimately to blame.

    Last year there was an interesting commentary article which outlined this:

    "Atos is doing a good job – as the government's flakcatcher (Don't be surprised by the controversial company's Paralympic sponsorship. Outsourcing unpopular decisions is now policy)."

    http://www.theguardian.com/commentisfree/2012/sep/05/atos-the-government-flakcatcher

    I also found this:

    Fraud and Error in the Benefit System: 2011/12 Estimates (Revised Edition)
    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/222892/fem_1112.pdf

    p2: "0.7%, or £1.2bn, of total benefit expenditure is overpaid due to fraud."

    Even if the proportion is relatively low, that is a fair amount of coin, and obviously an undesirable burden on any hurting economy, so the government are looking to reduce it in times of need. After all, they will not go after the banker scum angels, or the 30,000 politicians costing £500m a year (2009 figures), so might as well target the genuinely disabled scrounger hordes or the "fake disabled" who are supposedly crippling the entire economy?

    However, there are lots of different benefits. Most of the fraud money is from Income Support, Jobseeker's Allowance, Pension Credit, and Housing Benefit. Here are the figures for two other categories relevant to ME/CFS patients.

    p13: Table 2.1: Estimated overpayments in 2011/12...

    Incapacity Benefit
    Expenditure: £5.0bn
    Fraud: 0.3% (£10m)

    Disability Living Allowance
    Expenditure: £12.6bn
    Fraud: 0.5% (£60m).

    FWIW, Australia went through a "welfare to work" push several years ago, albeit without quite the same degree of ATOS militancy, and it basically made no difference. It is not that there is no fraud going on, but that the notion of hordes of fake disabled suckling Britannia's teet dry is misguided. The vast majority of people on sickness welfare obviously need it, and these intensified crackdowns (over the usual procedures) are generating an enormous amount of stress and suffering. There is a serious risk of many genuinely disabled people being inappropriately forced off benefits, and although the UK government may save a little money on paper, the cost for all this will hit society or the economy in other ways.
     
  13. alex3619

    alex3619 Senior Member

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    Given the social upheaval and other issues, I contend that any financial benefits of cracking down this way to catch such a small percentage of fraud will cost much more than it saves. Its spending a pound to save a penny. This is particularly the case when secondary impact on the disabled is considered, with increased medical costs and other costs to society. From a cold economic perspective benefits are appropriate because they save money - its cheaper to pay someone a meager pension than to have all the costs associated with disabled and dying borne by some other part of society.

    Getting rid of tax loopholes in the UK, especially those exploited by big business, will save far more.
     
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Good for whomever 'Tumbling' is for getting this published today.

    ETA: I loaded the page three times and it never showed me the comments.
     
  15. ukxmrv

    ukxmrv Senior Member

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    The actual online is awful. It claims that someone got in the UK a diagnosis of "Myalgic Encephalomyelitis" early on. There are very few doctors left in the UK who are interested in the difference between CFS and ME, so we are supposed to believe that by some miracle he saw one of them?

    The only symptoms described are exhaustion and excessive sleeping - that's it. Sleeping and exhaustion would get one of diagnosis of what exactly? Oxford CFS?

    He is now "much better than he was" through the Lighning Process. Amazed he could do the course given his sleeping and exhaustion but he did manage to get there and sit up and stay awake for how many days? and his own wife is judging him as much better. That he isn't back to work is a red flag. Is his wife colluding in the Lighning Process and not letting him "do ME"?

    This is a huge slap in the face for the 25% group and people with severe ME.
     
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    {Sigh} It seems we can't win for losing.
     
  17. Firestormm

    Firestormm Guest

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    I can see where you are coming from. Surprised others didn't pick this up as the author as prompted to write the article by someone in 25% Group. Bob is attempting to get them to remove the sales pitch link; but can we really slam others experiences? There are many many many things that desperate people find 'helpful'. Only way to properly explode the LP is to subject it to science. Not that I am suggesting for a minute this is what Esther is doing: I honestly can't remember what that child study is all about or how it is structured. But, until such time as something better defined by way of actual treatment comes along - we are where we are. Sharing experiences and perhaps we might give this lady a break? It is a true mark of desperation in my mind that anyone is driven into the arms of such practitioners: but that's just me :)
     
  18. Firestormm

    Firestormm Guest

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    Valentijn did you really mean this:

     
  19. Firestormm

    Firestormm Guest

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    Sorry. I still can't edit my posts and I am not the only one. Some system crash thingy happening to a select few I believe :(
     
  20. Valentijn

    Valentijn Activity Level: 3

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    Hopefully it's clear that I don't think CFS is just CF, but rather that the definition of CFS in england is CF.

    I can't edit it, so added another comment clarifying that :p
     

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