repost*
The Hummingbirds' Foundation for M.E. is setting up two new memorial pages.
One for M.E. patients and one for all those patients misdiagnosed with 'CFS'
who have diseases other than M.E.
Background information:
It has been known for many decades that M.E. is a neurological disease which
can be fatal. Dr Elizabeth Dowsett estimates the death rate for M.E. to be
roughly 3%. There are deaths due to cardiac failure, brain death, tumours,
and liver failure. There are sudden deaths following exercise/overexertion,
and deaths which occur after a long period of slowly worsening illness. All
kinds of deaths.
Dr. Dowsett explains that although these deaths are due to M.E., they are
disassociated from it, and are almost never recorded in statistics as deaths
from M.E.
Most deaths from M.E. occur without the fact ever being officially recorded
or acknowledged. It is also true that only a very small number of M.E.
deaths are given any sort of media attention. Deaths from M.E. are largely
hidden from the public awareness, and the public continues to be told that
M.E. is a trivial and short-term illness involving fatigue, which is also
correctly referred to as 'CFS' and is of course never fatal.
The misdiagnosis of 'CFS' can also cause death.
Every diagnosis of 'CFS' is a misdiagnosis. Many hundreds of thousands of
patients have been misdiagnosed with 'CFS' and so denied an appropriate
diagnosis and treatment. For some of these patients, this lack of
appropriate care can lead to death. For example, cancer patients are
sometimes misdiagnosed with 'CFS' instead of being given the cancer
diagnosis and treatments they need, or these treatments are given far too
late to save the persons' life. This fact is also only very rarely
discussed, and never in the mainstream media.
Countless lives are being ruined, and there are many needless deaths. It is
important that the M.E. community (and the formerly 'CFS' misdiagnosed
community) does what it can to highlight these deaths, in order to stop the
same thing happening to others and so to make these often avoidable tragic
deaths count for something.
We would also like to pay tribute to those who have died, and to make sure
these individuals are not forgotten. At the very least, not by us.
The Hummingbirds' Foundation for M.E. is setting up two new memorial pages.
One for M.E. patients and one for all those patients misdiagnosed with 'CFS'
who have diseases other than M.E.
If you are a friend or family member of someone who has died, please submit
their story to us. Brief stories or detailed ones, it is up to you. Deaths
may be very recent or have occurred long ago.
If you would like a friend or family member to be included in this memorial
list, please email HFME with the appropriate details. See:
www.hfme.org/mememoriallist.htm
The memorial lists, when finalised, will be made public along with a new
paper looking at the topic of deaths from M.E.
Notes:
1. If you are reading this thinking 'what if your life has been ruined by a
'CFS' misidgnosis or by having M.E. and being mistreated and abused, but it
hasn't actually killed you?' or 'What about writing about the importance of
a correct early diagnosis and treatment of M.E.?' then please still submit
your story and it can be used on the "case studies' page instead. These
stories are also very important.
2. Causes of death including euthanasia and suicide are not excluded. Almost
always the appalling mistreatment of M.E. patients and those given a 'CFS'
misdiagnosis has played a significant part in these deaths. Please send
these tragic stories also.
3. Please note that the M.E. memorial list will be a M.E. list (not a
'CFIDS' or 'CFS' or 'ME/CFS' list).
4. Causes of death in patients misdiagnosed with 'CFS' may include cancer,
severe vitamin deficiency, thyroid or adrenal diseases, brain tumours, renal
or liver disease, depression, PTSD and other mental illnesses (suicide) and
so on: a vast array of unrelated conditions. Anyone who was (mis)diagnosed
with 'CFS' instead of being given a correct diagnosis and who died partly or
wholly as a result of this lack of appropriate medical care is invited to
respond.
The HFME feels there is a real need for both of these lists.
Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org
After a variable interval, a multi-system syndrome may develop, involving
permanent damage to skeletal or cardiac muscle and to other "end organs"
such as the liver, pancreas, endocrine glands and lymphoid tissues,
signifying the further development of a lengthy chronic, mainly neurological
condition with evidence of metabolic dysfunction in the brain stem. Yet,
stabilization, albeit at a low level, can still be achieved by appropriate
management and support. The death rate of 10% occurs almost entirely from
end-organ damage within this group (mainly from cardiac or pancreatic
failure). It has to be said that suicide in younger patients and in earlier
stages of the disability is related to the current climate of disbelief,
rejection of welfare support and loss of educational and employment
prospects. It is an additional and potentially avoidable factor.
Dr Elizabeth Dowsett
Probably the best descriptive definition of M.E. is found in Ramsay's book
mentioned earlier or in the Doctoral Thesis of Dr. Andrew Wallace. Wallace's
thesis discusses an epidemic in Cumberland in Northern England. It is
unfortunate that more M.E. physicians have not read it. This thesis is
important since it not only represents one of the best descriptions of the
epidemic M.E. disease but also documents deaths associated with this
illness. The deaths although few in number are important since not only do
they give us a useful pathological insight, they also underline the
potential and usually unrecognized severity of M.E. Documented deaths have
occurred in several M.E. epidemics, but are best documented in the
Cumberland epidemic and were well known in the Akureyri epidemic. All of
these deaths involved CNS injury.
Dr Byron Hyde
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