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Mail On-line Dec 26th. ME an inflammatory brain disease

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Countrygirl, Dec 26, 2010.

  1. Countrygirl

    Countrygirl I'm with Cheesus

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    This has appeared today 26th Dec in Mail On-line and refers to a new? :confused: report from the Department of Health. It refers to ME as an inflammatory brain disease and says the report instructs our doctors how to give us exercises to help. :D It associates the increase in the illness with pollution.

    Does anyone know which article they are referring to? It's a mystery to me. :confused:





    http://www.dailymail.co.uk/health/article-87610/Will-doctors-ME-seriously.html



    Will doctors now take ME seriously?by NAOMI COLEMAN, femail.co.uk
    Comments (0) Add to My Stories Sufferers: two thirds of ME patients are women
    It is an illness that has become a scourge of modern society, but a recent report reveals little is known about Myalgic Encephalomyelitis (ME) making it one of the most neglected illnesses by the health sector.
    One in 400 people in Britain suffer from the illness, sometimes referred to as Chronic Fatigue Syndrome, and often dismissed by doctors as 'yuppie flu'.
    Two-thirds of ME sufferers are women, many of whom are teenagers - or those in their early thirties and forties. But, claim ME charities, two out of three sufferers receive little support from their doctor.
    ME (myalgic encephalomyelitis) is classified as a disease of the nervous system. This hidden epidemic is a debilitating, destructive illness where one in four people who suffer from the disease are housebound or bedbound.
    But worst of all, claim ME charities, over half of people with the illness are driven to feelings of suicide.
    But now for the first time the report published by the Department of Health, offers fresh hope to people living with ME.
    The report says that doctors should recognise ME as a real medical problem and give early diagnosis. A recent survey carried out by the charity Action for ME, found that one-third of sufferers waited 18 months to be diagnosed.
    Early diagnosis, claim charities, can help people manage their symptoms and prevent the illness from becoming severe. Although there is no direct test for ME, diagnosing the illness is a process of elimination and means other diseases such as diabetes, cancer and thyroid problems can be ruled out.
    The report also recommends training doctors on how to spot and manage the illness. This, claim charities, should include doctors taking a cautious approach to prescribing drugs such as painkillers.
    It should also mean doctors will be able to teach patients specific exercises designed to help them cope with the illness.
    The report also recommends better funding for research into the illness.
    Despite the growing scale of the condition, claim charities, the causes of ME remain unclear.
    Classic signs of ME are often confused with a bad dose of flu. However, this can quickly develop into severe muscle and joint pain often leaving patients housebound.
    Typical symptoms are physical and mental exhaustion, swollen glands, breathing difficulties, memory loss, extreme headaches, chronic diarrhoea, weight gain and bouts of depression.
    And, according to a recent survey by the charity Action for ME, seventy per cent of sufferers are too unwell to attend a doctor's clinic and many need part or full-time carers.

    The symptoms of ME can last anything from six months to a lifetime, and doctors claim five out of six people never fully recover from the illness. Despite this, there is only a handful of NHS clinics specialising in ME and virtually no research has been done on the illness.

    It is thought, however, that ME is an inflammatory brain disease triggered by physical and/or mental stress. This according to experts can release certain toxic chemicals into our brain making it inflame, and in turn, damage our nervous and immune systems.
    Common triggers for those prone to ME include stress which can include poor diet, too little or too much exercise, or high levels of pollution.
    The disease is believed to be on the increase partly because of higher levels of pollution, but also due to greater recognition of the illness.
    Although no one knows why certain people develop ME, some studies suggest that it is linked to abnormal lymphatic systems - the way our bodies elimate toxins.
    It is also thought that some people born with stickier blood than normal are more prone to infection. This, in turn, can develop into viruses such as glandula fever and influenza which can then lead to ME.
    Studies also show that three times more women than men are vunerable to the disease. This, according to Dr Andrew Wright, a GP based in Bolton, Lancashire and a medical adviser to Action for ME, is because women have greater hormonal fluctuations.
    'If a woman is already vunerable to ME,' says Dr Wright, 'this can put a greater strain on her immune system making her more likely to develop the disease.' And, according to Dr Wright studies show that women with ME are prone to relapses around their period.
    The report also proposes better services for ME sufferers. Currently, there are only a handful of NHS clinics specialising in ME.
    The new proposals are welcomed by ME charities.
    'Our big hope is that the disease will be taken seriously and that it is given the recognition and support it deserves,' said a spokesperson for Action for ME.
    'The message is that this is a woefully underfunded field and it's high time medical circles got to grips with the disease.'

    To find out more about ME, visit www.afme.org.uk


    Read more: http://www.dailymail.co.uk/health/article-87610/Will-doctors-ME-seriously.html#ixzz19Da91FPP
     
  2. Countrygirl

    Countrygirl I'm with Cheesus

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    On closer inspection, I think this is probably not a new article. It states that there are no comments posted so I understood this was because it was new. I can find no new DoH report, so I think it must be an old article.

    In passing though, I found this:


    Theses are all the papers which have printed the dire NHS Choices article on the Retrovirolgy papers. Someone has been busy spreading this information around much of the UK's press. :(

    Halstead Gazette, online
    http://www.halsteadgazette.co.uk/fa...choices.a36144f4-d0c7-4c13-a5ca-a5a39bf25744/
    21/12/10

    Harwich and Manningtree Standard, online
    http://www.harwichandmanningtreesta...choices.a36144f4-d0c7-4c13-a5ca-a5a39bf25744/
    21/12/10

    Keighley News, online
    http://www.keighleynews.co.uk/famil.../8750768. Chronic_fatigue_syndrome_not_virus/

    Penarth Times, online
    http://www.penarthtimes.co.uk/famil.../8750768. Chronic_fatigue_syndrome_not_virus/
    21/12/10

    The Northern Echo, online
    http://www.thenorthernecho.co.uk/fa.../8750768. Chronic_fatigue_syndrome_not_virus/
    21/12/10

    Hampshire Chronicle, online
    http://www.thisishampshire.net/fami.../8750768. Chronic_fatigue_syndrome_not_virus/
    21/12/10

    The UK is clearly determined to break the association between XMRV and ME. :(
     
  3. eric_s

    eric_s Senior Member

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    I like the tone and overall message of the article. Finally something useful coming out of UK media these days :mask:

    That was a bit "hmmm":
    I also don't see why they don't mention XMRV. Maybe with all of the exaggerated negative reporting the last days the journalist didn't dare mentioning it. But i still think it's the most significant finding and most likely explanation. Sticky blood etc., i don't know...

    But i think it's a good article...
     
  4. eric_s

    eric_s Senior Member

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    But what are they thinking?? The association is either there or not. They can try to break it as much as they want to, the only thing that will happen if the association is correct, is that they will look like idiots or even something worse. They must be aware of that.
    So the other explanation would be that they are really very sure of their conclusion. But to me it does not seem so convincing at this point.
    I don't get it.
     
  5. alex3619

    alex3619 Senior Member

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    Hi eric_s, unless they genuinely think they are right and XMRV therefore cannot be causal, in which case they will try to dissuade us from believing in any link. I agree though that it is either associated or not, causal or not, and no amount ot wishing will change that. We need research, pure and simple, and that means money and commitment.

    Bye
    Alex
     
  6. biophile

    biophile Places I'd rather be.

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  7. Sherby

    Sherby Sherby

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    I could be completly wrong

    First, Blood ban to protect their health

    Second, Four XMRV studies are due to contamination

    Third, Study now claims that is due to Brain swelling etc

    Four, Falls into Wessely field as can possibly be managed CBTGET etc

    Maybe they have a very cunning plan?
     
  8. Mithriel

    Mithriel Senior Member

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    A group of psychiatrists in the eighties took a perfectly good disease, myalgic encephalomyelitis and renamed it CFS, while defining it differently(!) and without consulting either patients, experts or researchers.

    They consistently equate it with simple chronic fatigue and even "tired all the time" and believe it is a somatisation. Thanks to their positions of power and by peer reviewing each other's papers they have managed to accumulate a large quantity of dubious research to back up their claims.

    Their "success" with CFS is being used to justify their treatments of CBT and GET for better recognised diseases such as MS. They were well on the way to this, may still be behind the scenes, when the XMRV findings slowed them down.

    As research has been done over the years, they have either ignored it, dismissed it or modified their claims superficially but the core idea remains the same. The ill health we experience is not due to any disorder in the body but to a psychological flaw. They will now admit that there are changes within our bodies but these are seen as being due to the psychological problems. Change the psychology, change the body back to health.

    So CBT to get the thought processes fixed, GET to get over any lingering bodily problems thus giving a cure.

    They will never change this. They might go as far as to admit that people with HMRV were wrongly diagnosed but that is it.

    The longer they can delay acceptance of HMRV the longer they do not have to lose any face, position as experts and grant money.

    They are involved with insurance companies and these companies want as many years as possible to pass before they have to pay us money. Similarly, governments want to put off having to pay for us in benefits and treatments.

    People who are doing well out of the status quo do not want change. The split between those who believed ME/CFS was a serious physical illness and those who claimed it as psychological (even if it has physical effects in the body) has always been most apparent in their views of the patients. One side has always shown compassion while the other has called us disgusting, undeserving, SW even saying that when he goes to dinner parties and is asked what he does for a living, he tells the he researches CFS and they say "Poor you"!

    As for the people who did the contamination studies, you cannot underestimate how cut-throat much of science is nowadays. It all comes down to money so HIV researchers worry about losing grants to those studying ME/CFS and everyone needs lots of papers published no matter how rubbish they are. Their cunning plan is to keep as much income for themselves.

    The blood ban is interesting as I believe it is a compromise between different fields. The psychologists and establishment need to rubbish HMRV research but the blood people do not want to take any chances with the blood supply. The "we suddenly realised that it might harm patients" was probably something that was thought up to save mentioning XMRV but stopped blood donations which the blood service was demanding.

    Mithriel
     
  9. August59

    August59 Daughters High School Graduation

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    What is the cause of the swelling? Pollution? Please!!
     
  10. Sherby

    Sherby Sherby

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    Sorry August59 feeling bit slow today, I dont understand your question/comment
     
  11. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Also, that is not the logo that has been used by AfME for a number of years.

    It was possibly refering to the CMO's Report.


    Also is states: "Despite this, there is only a handful of NHS clinics specialising in ME..."

    In 2006 the English CFS clinics were rolled out.

    The Mail should date their articles.
     
  12. Enid

    Enid Senior Member

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    How the ill informed press keep popping out with half truths - we know its real and I always knew viral from my own 11 years back. (Woops nothing found in very basic investigation here) And are the few Clinics here offering all that up to date with international pathology findings - not trying to persuade me I'm imagining.
     

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