World Heath Oragnation and Goverment health M.E/CFS

Discussion in 'Fibromyalgia Main Forum' started by gilesgirl, Jan 13, 2006.

  1. gilesgirl

    gilesgirl New Member

    I would like to pint out this becuse if any doctor from now on or beinfit place says M.E/CFS is not an illness or its in peoples head then you have come back. The world health oragnatain and our (UK) own health minster says that it is a nurological disorder. I think this is some thing we have to take with us to our doctors becuse they can not refues what these people say. It will help becuse now we have back up and may be now the gouverment is putting money in to it we may get a test witch i no is on the way and finding out is any meicien or cure is around the courner. Its a big land mark and its not public Knowladged. I no i will be sending this information to my doctor and the benifit agencys.
    M.E/CFS is a condition with a diverse range of symptoms but particularly characterised by profound muscle fatigue after physical exertion.
    Some doctors have been sceptical as to whether ME/CFS exists as a real disease or is "all in the mind".

    However, this controversy should have been effectively ended by a report from the Chief Medical Officer for England in 2002, which concluded that ME/CFS is a genuine and disabling condition.

    CFS and ME are also classified by the World Health Organisation as neurological disorders. In 2004, the Department of Health announced £8.5 million of ring-fenced funding for new specialist services to deal with ME/CFS.

    Fifty such services are now in the process of opening or are being developed. And the Medical Research Council has recognised that further research into the illness is urgently required.

    Vickyxxx


  2. i definately printed out your post,thanks so much.im taking it to the doctors/hospital.when ever i next attend,i just knew it was a real illness all along,its a pity the people we trust most with our health ( the so called professionals) dont believe its a real illness but more like all in our minds.well now its official.its real.and we look forward to recieving better treatment in the future.hopefully even a cure,that would be fantastic.

    thanks vicky.

    fran
  3. KelB

    KelB New Member

    Unfortunately, the UK government isn't "joined up" on this.

    During the current round of investigations into the Incapacity Benefit reforms, the only medical people involved by the Dept of Work and Pensions for consultation on CFS, were psychologists. The DWP are ignoring both the WHO and DoH definitions of CFS as being a neurological condition.

    And I'm afraid the funding for "specialist services" is being pumped into psychological treatments such as Cognitive Behavioural Therapy, which is very rarely given appropriately to CFS patients in the NHS.

    The real breakthroughs are being made by Dr Kerr (London) and Dr Gow (Glasgow), whose ongoing private research is starting to show specific gene markers in CFS people. They have been struggling for funding.
  4. gilesgirl

    gilesgirl New Member

    Independent working group's report into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) publishedPublished: 11/01/2002Reference number: 2002/0018


    The independent Working Group established to promote better understanding of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) today published its report. The report will help improve diagnosis, treatment and care for patients with CFS/ME.

    The Working Group's key conclusions include:

    Healthcare professionals should recognise CFS/ME as a chronic illness and Clinicians should listen to, understand, and help those affected to cope with the uncertainty surrounding the illness.
    Early recognition with an authoritative, positive diagnosis is key to improving outcomes.
    All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team.
    Most care can be co-ordinated by GPs with referral of patients for specialist opinion and advice where appropriate. The quality of the support, empathy and understanding of the GP is an important factor in the care of people with this condition.
    Those severely affected have specific difficulties accessing care and will need appropriate domiciliary services.
    Review of the evidence highlights the lack of good quality research.
    Therapeutic strategies identified as potentially beneficial in modifying the disease, or which can enable improvement, include graded exercise/activity programmes, cognitive behaviour therapy and pacing.
    Patients can play an active role in their care and the voluntary sector can provide support.
    Children and Young People

    For children and young people, CFS/ME can be a substantial problem. Children do get CFS/ME and can be profoundly affected.

    Prompt, accurate and authoritative diagnosis is important and second opinions needed if doubt exists.
    Care is best co-ordinated by an appropriate specialist, usually a paediatrician.
    Care is best designed flexibly with the child/young person and regularly reviewed with patient and family.
    Educational assessment and provision is an important element of the child's management.
    On occasions, families of child sufferers with more severe CFS/ME have been subject of child protection concerns. In cases of CFS/ME, evidence clearly suggestive of harm should be obtained before convening child protection procedures or initiating care procedure in a family court. Consideration should be given to obtaining a second opinion from an expert practitioner in the condition.

    Professor Allen Hutchinson, Chairman of the CFS/ME Independent Working Group said:

    "CFS/ME is a complex illness which affects people of all ages. This report is an important step in the development of NHS care for people with this illness. We have achieved agreement on many aspects of care for people with CFS/ME, even though some differences of opinion remain over the best ways of managing the illness. The Report's recommendations propose a number of useful strategies for improving care for individuals and for improving NHS services."

    The Chief Medical Officer, Sir Liam Donaldson, said

    "The Working Group report confirms that CFS/ME is a debilitating and distressing condition affecting many people. The causes of CFS/ME are not fully understood. The Working Group report is a sound basis from which we can start to make improvements in the care and treatment of people with CFS/ME."

    The Department of Health has asked the Medical Research Council to develop a broad strategy for advancing biomedical and health services research on CFS/ME. The MRC will appoint an independent scientific advisory committee for this purpose.

    The Department of Health is also ensuring that the External Reference Groups who will be developing the NSFs for both children's services and adults with long term conditions consider this report and its recommendations for improving treatment and care. These NSFs will address some of the generic issues affecting the management of illness in childhood and adolescence and long term medical conditions in adults.


    Vickyxx
  5. gilesgirl

    gilesgirl New Member

    If we stop fighting they will just say well its nothing like we said. We have to no matter how hard it is. Then one day there better be a good appolagiey as to why they never belived us in the first place. I have had it now for 11 years and when i am 111 i will still be out there fighting lol I no how it is and if we have to get a usa/uk patition and keep sending it to the president or priominster and do that every month they will no how many people suffer with it. Hey thats a good idea you no, mmm hugs to you hunnyxxxx
  6. Rosiebud

    Rosiebud New Member

    my previous doctor said to me

    'One day, the medical profession will be deeply ashamed of the barbaric way they are treating people with M.E. (CFS). It's the same as the treatment given to people with polio and TB in the 50s.'

    love
    Rosie
  7. so here we are again,let down by our own health service,our own country.
    lets promise each other that we arent going to let this thread disappear into the archives,let us in the uk keep this thread going,and please all you good people over seas,add to this thread to let the british goverment know that while our two countries are joined in most things political,that the uk is failing its most vunerable people in society, the sick and dissabled,while our friends overseas are getting a better service as regards fibromyalgia/ME from their goverment,we get nothing but frustration and smirks from ours.
    it just angers me so much that we are left once more to hope,and hope, that one day we too will be treated better over here,instead of being punished and told we need to get our act together in order to get well.i hope i live to see that day when the doctors and our goverment give us a apology for having treated us so shamefully,but i doubt they even know how to spell the word sorry,let alone say it to us.

    xx fran
  8. gilesgirl

    gilesgirl New Member

    Tahts a great post hunny, on the goverments web they say they exsept Me/CFS but in reality do they? I thing we people who have this condition need to make our selfs hurd becuse if we don't do it who will? My new doctor is great she understans it but out of 10 doctors she the only one. The top people may listen but its the little doctors and such that need to no. If only adults had this then they could put it down to a metal illness they cant put us in this box becue children and very elderly people have it do thats why thay cant do that. They will try but no mental illness spred throw that wide range of the age spectram. Lol little bit of psychology i picked up.

    Hugs Vickyxxxxxxx
  9. maripat

    maripat New Member

  10. gilesgirl

    gilesgirl New Member

    I have never hurd that and every thing i have read dose not implay that it is.

    Fibromyalgia Syndrome is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. In this web site our aim is to bring together information and resources to make the pain more bearable, whether you are a sufferer yourself, or whether you care for a sufferer.

    I have not got that illness so can't make comments to be honest with you but i have firends who do, good look on your quest becuse it also diserves recanition.

    Vickyx
  11. gilesgirl

    gilesgirl New Member

    Thanks for clearing that up thats so cool. I undersand it more better my self. There is some confution as weather most poeple with M.E/CFS and Fibro have the same condtion visa versa. They did say i had paib points and said that was M.E so no idea.

    Vickyx