Protecting sufferers of ME and other long-term conditions against discrimination

Photo by Graham Binns via Flickr, under Creative Commons Licence

Photo by Graham Binns via Flickr, under Creative Commons Licence

It was ME Awareness Day on 12 May. ME (myalgic encephalomyelitis) is a condition that is shrouded in lack of understanding to a great degree. To begin with, there is some dispute as to the correct name to give the condition. Some people use the term ‘chronic fatigue syndrome’ (CFS) because the main symptom for many is often fatigue and the condition is chronic. However, many sufferers prefer the name ME because the term ‘fatigue’ is generic and does reflect the different and severe nature of their fatigue. In addition, fatigue is not always the main symptom (others include muscle pain, problems with short-term memory and concentration, sleep disturbances, emotional imbalances). To further complicate matters, the causes of the condition are unknown (possibly a viral infection that triggers it), and there are no tests to definitively diagnose the illness.

One thing that is clear, however, is that the condition can be extremely debilitating. The symptoms can range from relatively mild, to extremely severe. Somebody with mild symptoms may need the odd day off to rest when the fatigue is bad. Those with severe symptoms, however, have reduced mobility and can sometimes only carry out the very simplest of everyday tasks. Unfortunately for sufferers, despite having been recognised as a neurological condition by the World Health Organization since 1969, it’s believed by many to be a ‘made up’ condition, partly because the condition fluctuates, and partly because the symptoms can vary so greatly and can’t be categorised as clear-cut ME symptoms.

Because ME is a long-term and fluctuating condition, sufferers are likely to be protected from discrimination under the Equality Act 2010 if the ME has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. If they meet the requirements of the Act, employers need to ensure that they do not treat them any less favourably than any other employee. Information about organisations’ responsibilities under the Equality Act 2010, as well as on a vast array of other work health-related topics, can be found on the Health for Work Adviceline website, blog or knowledge base.

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2 Responses to Protecting sufferers of ME and other long-term conditions against discrimination

  1. dave says:

    .CBT and GET ARE recommended by the NICE or national institute of clinical excellence which puts in place guidelines for the NHS for treatment of ME.

    They don’t want to review those guidelines for the next four or five years .

    They are treating this as psychological a non serious bit of fatigue were the other symptoms are just ignored this does not help people in work.

    Its time the NHS scrapped the psychological treatments CBT and GET for ME and started treating this as more than just tiredness and some delusional illness belief’s.

    If the top people within the NHS are serious about helping then fund proper research into the physical cause show you care Otherwise you are going to be left behind and criticized for standing in the way

    ScienceDaily: Your source for the latest research news
    Featured Research
    from universities, journals, and other organizations
    Toward a clearer diagnosis of chronic fatigue syndrome
    April 4, 2014
    Source:
    RIKEN
    Summary:
    Functional PET imaging to show that levels of neuroinflammation, or inflammation of the nervous system, are higher in patients with chronic fatigue syndrome than in healthy people, research has shown. Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis, is a debilitating condition characterized by chronic, profound, and disabling fatigue. Unfortunately, the causes are not well understood.
    http://www.sciencedaily.com/releases/2014/04/140404085538.htm

  2. Chris says:

    It’s such a terrible condition, I can’t imagine why an employer would favour them any less than anyone else.