1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Social Inclusion of ME Sufferers

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by leela, Oct 3, 2010.

  1. leela

    leela Slow But Hopeful

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    Couchland, USA
    Our fellow PWCs in Malta had a nice advocacy piece printed the other day:
    http://www.timesofmalta.com/articles/view/20101001/opinion/social-inclusion-of-me-sufferers

    Social inclusion of ME sufferers

    Michael Briguglio

    What makes ones condition a disability? Notwithstanding the natural cau ses of a disability, one has to look at the social context surrounding such a condition. For example, the public transport system would exclude disabled people if the buses were not purposely designed.
    In other words, conditions and services offered to persons with a disability can reduce or intensify the disability. Besides, successful claims-making of persons or groups within the public sphere is very important in this regard, as this can influence social policy one way or another. The case of ME (Myalgic Encephalomyelitis) sufferers in Malta can be seen from such a perspective.

    According to the World Health Organisation, ME is a neurological condition that leads to certain forms of disability. It has various symptoms such as dizziness, pain, fatigue and cognitive problems. I happen to know more than one person with ME and I can confirm the hardship it causes. As a medical expert put it, it is a debilitating neurological condition that leaves patients suffering from multiple disabilities. ME is now clearly linked with a retrovirus (XMRV) and Maltas health authorities have already banned blood donations from people with it.

    Many people with ME have to stay indoors or in dark places and even in bed for long periods, rendering them incapable of working. Those who suffer from mild ME have big problems in finding employment, especially due to a lack of flexibility and worker-friendly conditions in various places of employment, public and private, irrespective of Maltas legislation.

    It is therefore not surprising that a group of ME sufferers in Malta have formed an organisation appropriately named ME Sufferers Malta to raise awareness on their precarious situations. This NGO is slowly but surely making inroads on Maltas public sphere their first victory being the one referred to above concerning blood donations. This NGO is also being supported by various sections of the press and by others, including Alternattiva Demokratika.

    Malta lacks statistics and comprehensive research (both medical and social) on ME. Yet according to preliminary estimates by John H. Greensmith, (www.mefreeforall.org), around 800 persons (including children) might have this disability in Malta, and many might not be aware of this, due to a lack of awareness of the illness and the inability of most doctors to diagnose it.

    One problem is lack of appropriate social policy on ME in Malta. ME is not officially recognised as a disability covered by the Maltese Social Security Legislation Act, even though this is recognised as such by medical practitioners all over the world. Such a lacuna has negative implications for people with ME.
    To begin with, such persons are not entitled to social services and benefits given to people with a disability, which is recognised by the state. ME patients are being discriminated against when it comes to the access of quality medical treatment. For example, they are not given the same support and access in cross-border care as is given to sufferers of other conditions for which treatment is not available locally.

    Another issue raised by ME Sufferers Malta is that funds for appropriate education and training of doctors and other healthcare professionals should be provided, so that they would be able to diagnose ME patients at an early stage and advise them on appropriate forms of health management. Awareness raising, even within the medical profession, is thus vital for the social inclusion of ME patients.

    A lack of comprehensive social policy for people with ME ultimately results in more hardships for such persons and for their significant others, who would ultimately have to carry out all care work without any form of social assistance.
    In other words, care work would be privatised and individualised, making such persons responsible for everything that their disability entails. A responsible and inclusive social policy demands otherwise.
    The appeals of ME sufferers which can be read at www.mesufferersmalta.org ultimately represent a new voice in civil society, struggling for social inclusion. Similarly, there are other voices which affect many people and which are not recognised by the state.

    It remains to be seen whether the claims for recognition of ME as a disability will be successful and whether the authorities will heed to such claims.
    Such appeals deserve full support. Everyday democracy is not only about who gets elected in Parliament and local councils. It is also about the representation of various voices in an inclusive society.
    I therefore appeal to the authorities to consider the claim by ME sufferers to have ME recognised as a disability as of right and not as charity. Perhaps the forthcoming Budget can show whether the government has will in this regard.

    www.alternattiva.org.mt
    The author is chairman of Alternattiva Demokratika the Green party.

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