What follows is from the viewpoint of the ME/CFS community in the UK but could easily apply here in Australia, in fact some Australian-specific resources have been added. The article from which this is drawn (see references below) was published by the ME Alliance, which is made up of the following charities:
- Action for M.E.
- Association of Young People with ME
- The ME Association
- The National ME Centre
- The Young ME Sufferers (Tymes) Trust
What happens if you, in an all too common scenario in the onset of ME/CFS, an otherwise fit and active person fall ill with what seems like a simple viral infection but fail to get fully better? You then develop the classic symptoms of ME/CFS: exhaustion after what were previously trivial amounts of physical activity, moderate to severe problems with memory and concentration, and a host of other disabling symptoms.
What if then, your doctor is either dismissive of your symptoms or cannot give you an adequate explanation or diagnosis for what you know to be something seriously wrong, and as a consequence fails to offer anything approaching a treatment or effective management advice? Unfortunately this is a situation faced by all too many.
The delay in diagnosis can create frustration, confusion, self-doubt, even despair. This can result in a lack of an effective management plan, such as the all-important pacing in the crucial early stages and worse still, people can be given totally inappropriate and harmful recommendations on management, such as being told to “push through”. As we shall see below, a delayed diagnosis can lead to worsening of the illness.
Other consequences of no definitive diagnosis is that dealings with family, friends, employers or schools become very difficult. One common thing we find is that people in the very early stages of ME/CFS are told to return to work or school far too quickly, instead of benefiting from a period of rest followed by a gradual and flexible attempt at returning to work or education.
Those who have been diagnosed in the early stages of ME/CFS tend to fare better in the longer term and likewise it has been found that it follows that for those who developed more severe ME/CFS a high proportion were diagnosed much later.
State (Australia: Sickness Allowance and ultimately the Disability Support Pension) and private sickness benefits (in Australia from private insurance, or Income Protection or Total & Permanent Disability Cover from Superannuation, or you can apply for early release of your Superannuation on compassionate grounds) can be very difficult to obtain in the absence of a clear diagnostic opinion that can be written on a sick note. As a consequence, people are often denied the appropriate sickness benefits, practical help with their care or mobility needs, and access to social services.
We at Emerge have known Australian sufferers have sometimes needed legal advice/help when dealing with Insurance and/or Superannuation companies as they can be quite intransigent. One of our supporters is Maurice Blackburn. Call this a shameless plug but they have some experience in this area. At a seminar on 13th September 2014, John Berrill from Maurice Blackburn gave a presentation on Employment, superannuation & insurance issues for people with ME/CFS. Here is also a list of some legal services.