|
REAL BARRIERS, Robert Hill, British Medical Journal 2002
The essential problem that confronts a person who suffers from M.E is the
BELIEF. No one believes that they have the disease, no one believes the
extent, variability and intensity of their suffering and no one is prepared to
accept the fact that they require a special and unique treatment. Most people who
suffer from M.E also suffer from Projected blame, ignorance, labelling and a
general resistance from the Helping profession. It is ironic that those who
suffer most are also required to perform at their best in order to find
understanding and help.
What is needed is a concerted effort to affirm, recognise and accept this
disease as a real and painfully disabling condition.
What is needed is an endorsement from Medical and health care
organisations, insurance companies and government agencies.
What is needed is a statement that what is endured is real and what is
disabling is acceptable for treatment.
What is needed is a chance to heal.
************************
BETTER SERVICES NEEDED FOR " M.E,, Linda Beecham, BMJ
Everyone in the United Kingdom with the chronic fatigue
syndrome ( sometimes referred to as myalgic encephalomyelitis or "M.E") should
have access to a doctor who can diagnose and manage the condition, according to
a report from the National Task Force on the condition.
It is estimated that 172,000 to 1,500,000 people in the
United Kingdom have the condition and that the cost to the community is at least
($1.6bn), but the report says that many patients are still frequently neglected
and mismanaged. It calls for patients to have access to a trained specialist who
can diagnose and oversee the management of those who cannot be managed in
primary care and to a trained paramedical therapist from a multidisciplinary
team who can help the GP or specialist.
Where no suitable unit exists, commissioners should identify
suitable units in other areas or take steps to set up a minimum specialist
service that would cater for 0.1% of the population--namely, 500 cases in a
district of 500,000. The report recommends that accurate information should be
distributed to doctors to raise awareness about existing services and to enable
effective use of existing resources. GPs and other specialists should be trained
to recognise the benefit of early intervention to help patients manage their
illness from the start, which is likely to reduce the chance of them going on to
long term frequent attenders.
The report follows the announcement by the chief medical officer in England
that the chronic fatigue syndrome is a real disease and that the Department of
Health has set up a working party on this condition.
***********************
DONE IN DOWN UNDER
By Gail Kansky
The Royal Australian College of Physicians published the
clinical guidelines for the diagnosis and treatment of CFS. They say that, with
supportive care and management, most will improve and some will make a "complete
recovery!" Of course, exercise and CBT comprise the management, which will only
serve to make it worse if they really have ME/CFIDS. One of the members of the
working group for the guidelines, "Dr. Andrew Lloyd, said, "CFS cannot be
classified as a disease because the underlying pathophysiology (or mechanism)
that causes the condition is not known or understood ' " With logic as
murky as his, is it any wonder that Australia has taken a giant step back into
ignorance?
Weighing in on the outrageous statement was American clinical
expert, Derek Enlander, M.D., who wrote, "I am shocked at the naiveté
of
Professor Andrew Lloyd, and the statement that 'CFS cannot be classified as a
disease because the underlying ... mechanism that causes the condition is not
known nor understood.'
If this was the sole or just determination, why was the group
formed? It was fated to make such a statement five minutes after the first
meeting. Similarly, this supposedly eminent group would make the statement that
cancer, multiple sclerosis, lupus erythematosus, and countless other conditions
were not diseases because the 'mechanism that causes the condition is not known
nor understood.' This an absolute outrage; doctors practicing in the middle ages
did not know the mechanism but were able to recognise disease. Was this group so
blind or is there an ulterior motive? Patients suffer from this disease and are
deprived of professions, jobs, and insurance benefits because of this
debilitating disease. This disease is not imagined; it is not in their mind.
They deserve more than this medical slap in the face. Andrew Lloyd should follow
his namesake to the Stage, rather than rashly expose himself in print." *
[Dr. Enlander is the author of The CFS Handbook
available from the National CFIDS Foundation, 103 Aletha Road, Needham, MA
02492-3931.]
```````````````````````````````````````````````````````````````````````````````````````````````````````````````````
| 
