ME the ignored
Myalgic Encephalomyelitis (M.E.), also
known as Chronic Fatigue Syndrome (CFS), is a condition where many sufferers
feel isolated from society and ignored by the medical profession. This is a
widespread condition, affecting approximately 250,000 people in the U.K. alone.
The NHS has abandoned us, relegating us to
psychologists and occupational therapists. I accept that there is a place for
therapy, as living with a long-term condition like ME will inevitably have
psychological repercussions, but it is not the main cause, therefore should not
be the main treatment.
When we’re not being told that it’s all in
our head and positive thinking will make us better, we’re being given graded
exercise therapy (GET). GET is based on the idea that deconditioning is causing
the problems ME sufferers face, and has been proven to show no significant
benefit, and in many cases actually makes sufferers worse. Some ME patients who
have been prescribed GET have gone from mild or moderate ME to being completely
bed-bound.
Due to the lack of help the NHS provides
us, and sometimes the harm it can cause us, we are forced to pay for expensive
private treatments, many of which won’t work. Myself and many others spend a
small fortune on supplements and other remedies in the hope that something will
help. Those who can’t afford to explore this route only have the support of
fellow sufferers to rely on.
Doctors don’t understand this condition, and
instead of that driving them to investigate more and help, they blanket all
symptoms under the mysterious ME or CFS label. I’m not saying it’s always the
fault of doctors, sometimes the fault lies in the system that prevents caring
and well-meaning doctors from helping patients the way they’d like due to the
constraints put upon them.
What we need is for specialists to engage
and try to help. Specialists such as immunologists, neurologists, cardiologists,
rheumatologists and more. We need the NHS to care about this condition, and be
willing to explore any avenues that might be helpful to sufferers. We need
better funding for research, and that funding going to the right places, unlike
the controversial PACE trial and many other psychology based trials. We need
more awareness among GPs to get faster diagnosis and better treatments from
primary care providers. We need to move away from damaging views that the
illness is psychologically based, or that exercise will cure it.
If you would like to help, please donate to
one of the great charities that are helping to push this agenda forwards, and
look at the information they provide to help you understand ME better. A little
understanding can go a long way for lonely, neglected ME sufferers.
Thank you.
Here are two of my favourite ME charities,
but there are many more out there doing great work.
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