> The Hummingbirds' Foundation for M.E.

> *please repost* *please repost* *please repost* *please repost* *please
> 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/overexerti on,
> 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.
>
> The 'CFS' scam, the cover-up of the facts of M.E. and the widespread abuse
> of M.E. patients are ruining countless lives, and are also causing 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
>