General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

We are a family living with Asperger Syndrome, and ME/CFS. Not only
are GP's failing families needing support for ME they are equally failing
families who need multi-agency services for Asperger Syndrome. If
families are being denied health services for long term input for Autistic
Spectrum Disorders the neglect is compounded when faced with the
additional conundrum of ME/CFS.

Without informed GP's and Health Professionals, Education becomes a
mine field that families are simply unable to navigate.

This situation is so serious that families are becoming subjects of
Child Protection proceedings and experts in both chronic conditions are
being dismissed, their extensive knowledge ignored in favour of the bad
parenting, and using children to gain attention for parents own need
judgements. These conclusions are reached by ignorance to the medical
needs of both conditions and refusal to accept expert input or research
current publications and appropriate interventions.

Any family's first point of contact is their GP, if the understanding
of a recognised Sydnrome is being neglected families are being left in
serious danger. The implications of the many co-morbidities of Asperger
Syndrome those that are recognised and documented are anxiety and
depression.

How can GP's justify ignoring expert opinion and input leaving
families vulnerable, when in too many cases the families have been denied
multi-agency care for years? The situation is left unsupported until
today's crisis becomes tomorrow's headline. Rather than the neglectful
actions of professionals from every service becoming public, it is easier
to cover up the failure by turning it back on the parents and making it a
Child Protection issue.

If a GP is not confident that they are informed enough to take the
necessary steps to protect the family, or feel it is out of their remit
then it is inexcusable to leave the family feeling isolated and afraid of
seeking medical attention.

In this situation a safe and justifiable action would be to refer on
to those who do have the expertise rather than believe those persecuting
the family yet not medically qualified to make this assumption that it is
simply a case of difficult uncaring parents especially when one parent
also has Asperger Syndrome. The anxieties that are part of Asperger's are
not taken in the right and fair context but used against the parent as
proof of abuse; the years of experience said parent has gained by living
personally with the Syndrome are also used a proof of abuse because the
parent is too informed about a medical condition.

The failure to act early to diagnose and the continued failure to
offer medical support first and foremost following diagnosis, added to
inability to provide suitably qualified services is continuing inspite of
Autism becomingly widely recognised. This leaves us with serious
questions needing answers. Why with the increase in the Autistic
population are GP's and Hospitals not better prepared and better informed?
Why with ME/CFS gaining recognition and better understood is the same
thing happening?

Competing interests:
None declared