If you aren't personally affected as yet, why should you care about Myalg=
ic
Encephalomyelitis and want to help patients achieve the same basic rights=
as
those with similar neurological diseases such as Multiple Sclerosis? Why
should you care about whether or not the fictional disease category of 'C=
FS'
is abandoned?
-------
Why care about M.E.? Copyright =A9 Jodi Bassett December 2009. Co-authore=
d by
Lesley Ben. From www.hfme.org
An excerpt:
So why exactly should you care about Myalgic Encephalomyelitis and want t=
o
help patients achieve the same basic rights as those with similar
neurological diseases such as Multiple Sclerosis?
Why should you care about whether or not the fictional disease category o=
f
'CFS' is abandoned?
1. Because corporations with vested financial interests should not be
allowed to determine government policy and to attempt to erase the
scientific facts and history of an entire illness merely because it would
substantially increase their financial 'bottom line' to do so.
2. Because we need government to put science and basic human rights
ahead of the financial interests of large corporations that are acting
unethically. Government cannot be allowed to completely disregard reality
and knowingly participate in the 'CFS' lie without ever being seriously
challenged. How can this be allowed to happen in our supposedly democrati=
c
countries? How can we let it happen?
3. Because your tax dollars are being wasted on bogus 'research' whic=
h
is being conducted on such a heterogenous (mixed) group of 'CFS' patients
that it is extremely unlikely to be to the benefit of any distinct patien=
t
group.
This outrageous waste occurs while no money at all is being spent by
governments around the world trying to find treatments for M.E. despite i=
t
being one of the most disabling and horrific diseases there is, affecting
more than a million adults and young children worldwide.
Prior to the invention of "CFS" in 1988, the small resources that we=
nt
into researching and treating genuine M.E. represented a more ethical,
scientifically-supported and helpful approach to patients than we see tod=
ay.
4. Because significant social wealth is being wasted on 'rehabilitati=
on'
programs such as CBT and GET which do nothing for most patients, and whic=
h
severely harm and permanently disable or kill many M.E. patients. Many of
those with severe M.E. are severely affected because of such programs (or
other similarly bogusly determined and equally inappropriate medical
advice).
This growing trend, particularly in the UK, of devoting significant
government funding to treatments which are not only proven to be bogus, b=
ut
are also known to be actively harmful in many cases, in support of variou=
s
'industries' must be opposed. A true healthcare industry should have its
funding determined by rigorous science and the real needs of patients and
their families, rather than by propping up unscientific industries.
5. Because treating our most vulnerable citizens fairly and with resp=
ect
is the mark of a healthy and democratic society.
6. Because what is happening is deeply wrong. It is systematic abuse =
and
neglect of some of the most vulnerable and innocent members of society. V=
ery
ill people are being literally tortured by government and by doctors, and
being denied even basic medical care and/or welfare and social support.
7. Because the government is not taking the appropriate measures to
protect the blood supply from M.E. A significant percentage of M.E. patie=
nts
became ill after a blood transfusion, yet only in the UK are those with M=
.E.
specifically banned from donating blood.
8. Because M.E. affects not just the M.E. patient but their whole famil=
y.
The children of parents with M.E. often pay a high price, and parents of
children with M.E. often become their part-time or full-time carers.
9. Because children as young as three get M.E., and their families are
currently put through hell. Not only are parents not given access to any
type of medical care or even basic information about M.E., but they are
often wrongly accused of causing their child's illness to gain attention =
for
themselves (they are falsely accused of Munchausen's by proxy) and may ev=
en
be charged with this offense, or have their child forcibly removed from
their care. The child may then be subjected to medical torture. (For
example, they may be cruelly denied contact with family or access to food=
,
or thrown into swimming pools and so on, in order to force the child to
'stop acting as if they were ill.')
10. Because people with M.E. are being robbed of their chance for
improvement, and are often sentenced to a life of severe disability, for
want of the most basic information about their disease and the most basic
level of medical care (care which is taken for granted by those with very
similar diseases such as MS.
11. Because according to the world's leading M.E. expert, Dr Byron Hyde, =
if
the M.E. enteroviruses were recovered from patients during their onset
illness most or perhaps all cases of M.E, could be PREVENTED in the futur=
e
'by simply adding essential enteroviral genetic material from these
enteroviruses to complement polio immunization." At the very least, some
basic funding should be dedicated towards this investigation if there is =
a
possibility it could prevent hundreds of thousands of patients from
contracting such a life-altering and severely disabling lifelong disease.
12. Because nobody is immune from a 'CFS' misdiagnosis, and the lack of
care and support that comes with it. You or someone you know, or someone =
you
love could very well be next.
Patients with cancer, which often causes significant fatigue, are
sometimes told they have 'CFS' and so they are denied the life-saving
treatment that they need and so they die. Patients with Lyme disease are
often told they have 'CFS' and so are denied access to the antibiotics th=
at
may well have given them their lives back. Patients with simple vitamin
deficiencies are often told they have 'CFS' and so denied the very simple
and effective treatments/cured available for their condition and so suffe=
r
needlessly sometimes for many years. The list goes on. There are so many
needless deaths, and so much unnecessary suffering and disability due to =
the
misdiagnosis of 'CFS.'
13. Because nobody is immune from M.E. You or someone you know, or some=
one
you love, could very well be next. M.E. is as common as M.S. and affects =
all
ethnicities around the world, even affecting children as young as three.
M.E. strikes suddenly; a person goes from being healthy to being very
ill and disabled over a matter of a day or so. M.E. occurs in epidemic an=
d
sporadic forms, with over 60 outbreaks of M.E. being documented worldwide
since 1934.
Most importantly of all, you should care because those with M.E. are far =
too
ill to fight for themselves like AIDS sufferers did. AIDS patients also
often have an early asymptomatic period of illness, if they are diagnosed
early with HIV infection, which enables significant potential contributio=
n
to activism - but for M.E. patients the severe symptoms begin on day one.
M.E. patients cannot raise large amounts of money for advocacy like breas=
t
cancer charities can.
Many cannot even read basic information about what is happening as they a=
re
just too ill, and most families are friends of patients are unwilling to
help very often due to ignorance about the political and medical facts of
M.E. Indeed very often friends and family members of patients treat the
person with M.E. abusively, withhold support and so contribute further to
their high level of disability and suffering.
M.E. patients have also been utterly ignored by human rights groups, desp=
ite
the appalling loss of their most basic human rights and the extreme
suffering caused by this to many very severely ill and vulnerable people.
M.E. patients desperately need YOUR help.
--------
This paper is available in full here: www.hfme.orgwhycareaboutme.htm
If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, pleas=
e
click on the above link.
Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org
--=20
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