Friday 18 September 2009
Monday 14 September 2009
Could Some People Diagnosed With ME/CFS Actually Have Hashimoto's Encephalopathy
http://www.thyroid-info.com/hashimotos-encephalopathy.htm
John F. Kennedy's Addison's disease was probably caused by rare autoimmune disease
http://www.latimes.com/news/nationworld/nation/la-sci-jfk-addisons5-2009sep05,0,3275865.story
Friday 11 September 2009
There's now a petition on the No 10 Site calling for recognition of
the vital support that Attendance Allowance (AA) and Disability Living
Allowance (DLA) provide to disabled people, and to ensure that these
benefits are secured and are not removed as part of any future reform
of the social care system in England.
You can sign the petition on the No. 10 site, at
the vital support that Attendance Allowance (AA) and Disability Living
Allowance (DLA) provide to disabled people, and to ensure that these
benefits are secured and are not removed as part of any future reform
of the social care system in England.
You can sign the petition on the No. 10 site, at
How Breakspear Hospital can help with chronic fatigue and myalgic encephalomyeli
http://www.breakspearmedical.com/files/chronic.html
Wednesday 9 September 2009
"Please donate £4 to help us reach our target for the JustFourQuid Campaign at
http://www.justgiving.com/Antoinette-Christie/
Belfast Marathon 3rd May 2010
Still looking volunteers to take part in the Belfast Marathon in aid of ME Research on May 3rd 2010. U can take part in the relay or run the whole thing, up 2 u . This is a very worthwhile charity which the Government still refuse to fund.
> 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
>
> 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
>
Sunday 6 September 2009
Question a doctor and lose your child - Times Online
http://www.timesonline.co.uk/tol/life_and_style/health/article6823345.ece
Saturday 5 September 2009
Most Common Cause of Fatigue that is Missed or Misdiagnosed by Doctors
this is the title of a useful article by Dr J Mercola, published today.
http://articles. mercola.com/ sites/articles/ archive/2009/ 09/05/Most- Common-Cause- of-Fatigue- that-is-Missed- or-Misdiagnosed- by-Doctors. aspx
http://articles. mercola.com/ sites/articles/ archive/2009/ 09/05/Most- Common-Cause- of-Fatigue- that-is-Missed- or-Misdiagnosed- by-Doctors. aspx
A memorial list for M.E.
A memorial list for M.E. (and a second for the 'CFS' misdiagnosed) from HFME
http://www.hfme. org/mememorialli st.htm
http://www.hfme. org/mememorialli st.htm
Have a say on ME care - Shields Gazette
Have a say on ME care - Shields Gazette
Source: www.shieldsgazette.com
Have a say on ME care - ALMOST all of your readers will know someone with myalgic encephalopathy (ME).
Source: www.shieldsgazette.com
Have a say on ME care - ALMOST all of your readers will know someone with myalgic encephalopathy (ME).
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