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UK-Impact of CFS/ME

Discussion in 'General ME/CFS News' started by Nielk, Sep 15, 2011.

  1. Nielk

    Nielk

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    http://www.bristol.ac.uk/news/2011/7903.html

    New research into chronic condition reveals long-term cost to UK economy
    Press release issued 15 September 2011

    Myalgic Encephalopathy [ME] or Chronic Fatigue Syndrome [CFS] causes severe debilitating fatigue and affects up to 2.6 per cent of adults in Britain. New University of Bristol research, published today [15 Sep], into the impact of the illness on employment and productivity has estimated lost earnings of over 102 million a year to the UK economy.
    The study, published in the journal BMC Health Services Research and led by academics at the Universitys School of Social and Community Medicine, is one of the first to have investigated factors associated with discontinuation of employment in patients with ME or CFS or quantified its impact on productivity.

    Sufferers from ME or CFS experience persistent or recurrent debilitating fatigue. In many cases, people are housebound or confined to their bed for months or years, causing their lives to change drastically and continued employment to become impossible.

    Funded by the National Institute for Health Research [NIHR] and Action for M.E. charity, the study examined data from 2,170 patients attending five specialist ME/CFS services to estimate earnings lost as a consequence of ME or CFS and the overall productivity costs to the UK economy.

    The productivity costs among the 2,170 patients, estimated using average annual earnings data by sex and age group obtained from the Office for National Statistics, were equivalent to 44,515 (in men) per patient and 16,130 (in women) per patient. By extrapolating these estimates to the UK population, the researchers estimated that each year 4,424 working age adults with ME or CFS might be referred for specialist assessment, and that this group would have already incurred productivity costs of 102.2 million due to their illness by the time of the assessment.

    Many ME or CFS sufferers continue to work despite the primary (fatigue and pain) and secondary effects (depression and anxiety) of the condition. Loss of physical capacity is the main reason for discontinuation of employment.

    Dr Esther Crawley, lead author and Consultant Senior Lecturer at the University, said: Our findings are important because they show the long-term cost to society, which must be accounted for in estimates of the cost-effectiveness of ME or CFS interventions and service provision.

    In addition to this indirect cost to the UK economy, health resource use and welfare payments impose direct costs, and families of patients must bear the costs of informal care, often reducing their own working hours. In young adults, disruption of education reduces productivity in later years. Above and beyond these financial costs, ME or CFS has a huge impact on quality of life.

    Sir Peter Spencer, CEO of Action for M.E., who welcomed these research findings, commented: "The key message for the Government and for the Department of Health is that the financial costs of failing to address this illness properly are much greater than the money required to set up proper NHS specialist services in all areas and to fund much needed scientific research.

    "In addition to the moral imperative, there is clearly a powerful economic argument for addressing the needs of this greatly neglected patient group."

    Colin Barton, Chair, Sussex and Kent ME/CFS Society, added: There is an urgent need for more adequate NHS provision for those affected by this often life-ruining illness that is costing so much."

    The study entitled The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on CFS/ME National Outcomes Database by Simon Collin, Esther Crawley, Margaret May, Jonathan Sterne and William Hollingworth is published in the journal BMC Health Services Research, funded by the National Institute for Health Research [NIHR] and co-funded by Action for M.E.
  2. Boule de feu

    Boule de feu Senior Member

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    "Many ME or CFS sufferers continue to work despite the primary (fatigue and pain) and SECONDARY effects (depression and anxiety) of the condition. Loss of physical capacity is the main reason for discontinuation of employment."

    In this article, we agree that ME or CFS patients suffer from SECONDARY depression. Isn't that a first in the UK?
    We are getting there... :)
  3. Nielk

    Nielk

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    I think this is our lucky day! Both this news and the news of philanthropic monies coming our way are cause for celebration.
  4. ukxmrv

    ukxmrv Senior Member

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    It may be too soon to celebrate on the Bristol reports. The people behind it (Dr Crawley and AFME) are going to use this to get some more of their dodgy "CFS" clinics funded with CBT and GET only.

    Dr Crawley is the one behind the SMILE trial of the Lighning Process on children with ME.

    Colin Barton is a supporter of BARTS hospital and Peter White.

    These are the people ME patients in the UK are fighting against.
  5. Wonko

    Wonko Senior Member

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    Glad to know it's not just me who spotted that, I've been scratching my head for hours trying to figure out why people thought this was good news.
  6. Esther12

    Esther12 Senior Member

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    Doesn't sound good to me - Crawley and Barton seem to want to use this as an excuse for devoting more money to the 'treatments' already available, rather than recognising how ineffective they are and committing more resources to research trying to find and understand the causal mechanisms of patient's fatigue. This can be spun to show what a burden obstinate CFS patients are - refusing to be cured with CBT/GET. After having seen how the results from PACE were spun, I wouldn't be surprised by anything.
  7. Ian

    Ian Senior Member

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    Can you imagine if someone did a SMILE trial for people with cancer ?
  8. alex3619

    alex3619 Senior Member

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  9. alex3619

    alex3619 Senior Member

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    Possible UK Campaign

    I wonder what the impact would be of a "petition" that does not really call for anything but is just a signed statement. If someone in the UK who has been treated by CBT/GET and made worse could start a petition to raise awareness, and have everyone who has been harmed sign it. It would be important that only patients who have had this therapy sign it, as you can be sure the signatures will be scrutinized.

    Advocates could then use this to hammer the anti-psychobabble message home.

    Bye, Alex
  10. LaurieM

    LaurieM

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    I don't quite follow this:

    Is this study actually to make it look like we (the sufferers) only costs the UK economy 102 Million a year and therefore less relevant - because in 2006 a study (again by Action for ME) said we cost the economy 6.4 Billion a year.

    http://www.personneltoday.com/articles/2010/11/08/56465/chronic-fatigue-syndrome-rehabilitation.html
    http://www.ayme.org.uk/article.php?sid=14&id=211
    So how are we somehow costing the nation 65 times less than 5 years ago?

    And as I've mentioned in a previous post - if just a fraction of 1% of the yearly loss was put into real biomedical research, it would save the nation a fortune, but more importantly to us - our health.
    redo likes this.
  11. Megan

    Megan Senior Member

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    Spot on Laurie,

    Definitely something wrong here. Economic costs associated with ME/CFS are in the billions. Any report quoting 'millions' simply has to be wrong.
  12. biophile

    biophile Places I'd rather be.

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    I was confused by the press release too, so I skimmed through the full text of the study paper (http://www.biomedcentral.com/content/pdf/1472-6963-11-217.pdf). It seems to be about lost income and productivity within a very select group of patients, not the total costs on the economy which include welfare and medical burdens and help from others. 100 million per year is a gross underestimate and the press release was misleading.

    So it is based on the assumption that out of the 60+ million people in the UK population, about 4424 (beware of false precision) "working age adults with CFS/ME might be referred for specialist assessment". Here comes the NSS (No Shit Sherlock) caveat.

    Duh. Who would have guessed?

    They cite the PACE Trial here, so the propaganda and/or erroneous claims about "recovery" continue. 40% is pure fiction, the real figure was 28-30%.

    While this is painfully obvious and likely due to post-exertional symptoms etc, I bet 100 million Monopoly game dollars that this will be twisted by someone to regurgitate the patronizing and discredited deconditioning hypothesis.
  13. Sean

    Sean Senior Member

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    No matter how outrageous a lie may be, repeat it often and loud enough and it will become the 'truth'.

    For a while, at least.
    WillowJ likes this.
  14. Esther12

    Esther12 Senior Member

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    The abuse of the results from PACE is utterly disgusting. It's so clearly dishonest, for anyone who takes the time to look at the raw data... but no-one apart from patients cares. What wretched quacks they are.
  15. Boule de feu

    Boule de feu Senior Member

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    Let's pretend I am an outsider and I read this for the first time.
    I don't know who is who and what is going on in the UK.
    Let's pretend I know nothing about ME.

    Here is what I grasp:

    1. ME is a chronic condition that costs a lot and the GVT must do something about it (it's urgent!)

    2. ME is a very bad illness to have (2.6% are affected, housebound or confined to bed, it lasts for months or years, you can't work or you lose your job when you have ME)

    3. ME is not a psychological condition (depression and anxiety are secondary illnesses you get after a while)

    4. Families of patients with ME must take care of their loved ones (so, more loss in revenues and poor parents !)

    5. The best for last : GREATLY NEGLECTED patient group and LIFE-RUINING illness

    Considering that most people don't know what ME is and how it affects the patients, I think this is a great article.
    This is why I find it very positive.
  16. ukxmrv

    ukxmrv Senior Member

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    That's because you don't have to face the consequences Boule de feu of it here and now in the UK. This was not written for a new comer. It's written to try and influence UK Govenment policy.

    In the UK this type of propaganda is used to finance the CBT and GET centres and their doctors.

    If the Govt is urged to do something as a result of this article it hurts us. Why, because any money generated goes to the Psych lobby for either more shoddy research or more shoddy "treatment centres".

    The money spent on this report could have financed research into cause or cure - so it's money down the drain.

    This is publicity we can do without.
  17. Esther12

    Esther12 Senior Member

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    Still - it's good to have Boule point out how it can have a positive impact on others too. Maybe it's too easy for us to get sucked in to seeing only how it is likely to be harmful.
  18. Boule de feu

    Boule de feu Senior Member

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    You are probably right and I understand perfectly what you are saying. However, I still believe (besides the hidden agenda-s) that this article is not all bad. After reading this, some will look it up on the internet and learn (for the first time!) that ME exists.

    By the way, we also get CBT and GET here, in Canada, but for some reasons it is not perceived as a bad thing (at least, I don't think so).
    I got a lot from the CBT (25 sessions). It was given by a health psychologist and not a psychiatrist. - I kept in mind what was useful for me in order to function every day. but it did not cure my illness nor was I able to do the GET program. Too sick for that. During our last session, she said: "I hope they will find a cure for ME. I wish you all the best".
    However, it's true that nobody forces us to go this route and we do receive medical care as well.

    For the last six years, I have been seeing my GP every three months. Sometimes, he sees me each month when I'm too sick. He never said once: "I think it's time to refer you to a psychiatrist."


    When I read articles like these, I can't thank God enough that I am living here.
    Everything is free. ME is perceived as a genuine physiological illness. I did not have to fight very hard to get my insurance (and the governement) to pay. It does make a big difference.
  19. ukxmrv

    ukxmrv Senior Member

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    We'll only see that in the long term Esther what the fallout or benefits are.

    The next part must follow.

    Firstly the "problem is defined" (i.e. this Bristol report) and then the solution is announced (and we will need to wait and see how they do this publicly). People are being primed for something.

    Experience tells us that.
  20. alex3619

    alex3619 Senior Member

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    WillowJ likes this.

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