More on ME

Yes,
doctors are still unsupportive to people with ME (ME - DOCTORS UNHELPFUL, Issue
722, and subsequent letters). Sadly this is a fact that has changed little over
the years. My daughter was diagnosed by a respected paediatrician and other
doctors in 1993. All she could say was: “I don’t believe in it, there is no
such illness and no information anywhere”. Never was anyone so wrong as we found
three books about ME in the local library, two of them written by prominent
doctors who suffer from the illness, and visible signs of the debilitation,
with my daughter eventually ending up in a wheelchair.

The doctor also said alternative medicine would not work but it did, up to a
point. My daughter now has limited health – unpredictable like most chronic
illnesses but she is out of the wheelchair.
Yes, it is still disturbing that even six years after the Chief Medical
Officer’s report we still have this ignorance. Equally as disturbing is the
fact that for even longer we have had an All Party Parliamentary Group on ME
and still we are no nearer better facilities or even a cure.

(Meeting after meeting discussing past issues but not moving forward and
ignoring what the sufferers really want).
There have been many initiatives from individuals and small groups, which
sadly were not backed up by those who could have offered their support but did
not wish to take part for fear of causing upset or political reasons.

As a result of this lack of co-operation and willingness there is still the
failure today to recognise and offer support to sufferers and the newly
diagnosed, as there was when my daughter was first diagnosed, (and even well before that. Even the
fact that there are prominent celebrity sufferers has proved to no avail as
they too have been reluctant to speak out has let to he continued ignorance.

It is a sad fact that because the symptoms of ME can mimic other illnesses, and
that there is as yet no specific diagnostic test, ME is an illness that makes
everyone an expert, thus it has been easy to link it with Chronic Fatigue
Syndrome trivialising an illness that has claimed many lives in the past, and
may well claim many more in the future).
ME
really is a serious illness, sadly lacking in leadership, (which shows in the
ME community, which is why every event become just another fiasco).

Trevor
Wainwright