Frequently Asked Questions (FAQ)
1. What
is the Blue Ribbon Campaign for ME/CFS?
It is a campaign to
raise awareness for ME/CFS, to end the stigma for people who have the disease,
and raise money for research funds to support biomedical research into the
disease. The BlueRibbonCampaignForME.org is not the originator of the Blue
Ribbon Campaign. The campaign to wear the Blue Ribbon for ME/CFS was originally
started by BRAME.org in the UK. The BlueRibbonCampaignforME.org
was founded to bring the message by social media with the dream of getting the
blue ribbon worn around the world by people who stand in solidarity with those
suffering in silence and invisibility with ME/CFS around the world.
2. What
is ME/CFS?
The term Chronic Fatigue Syndrome is used primarily in North
America. Myalgic Encephalomyelitis (ME) is used in most other countries. It can
be best understood when broken down into its individual parts. As you look at
the term it becomes clear that the emphasis is on the central nervous system. ME/CFS is used in
Canada.
My - muscle algic -
pain encephalo - brain myel -
spinal cord itis - inflammation
3. What
kind of symptoms do people with ME/CFS have, aren’t they just tired?
The disease can be managed, but
no cure exists. People with ME/CFS often
live in isolation in part because their activity levels do not allow them to
leave the house, work, or even get out of bed depending on the severity of
their condition. However, isolation also serves as a way to avoid viruses due
to an already compromised immune system.
5.
Is there a drug for ME/CFS?
Right now, most ME/CFS patients
are prescribed medications to help manage their symptoms. There is a drug called Ampligen available in
Canada under compassionate care but as it costs 20,000 dollars a year, and is out
of reach for most patients. Ampligen
is an immume-system modulator that works by jump-starting your body's natural
anti-viral pathway and regulating levels of Rnase
L
(a substance in your cells that attacks viruses), which can be high in people
with chronic fatigue syndrome. Studies show it's more effective and has far
fewer side effects than other drugs in its class. Over the past 30 years, this
drug has also been studied as a possible treatment for certain types of cancer,
AIDS, avian
flu, and swine flu.
6.
I’ve heard that ME and CFS are two different
diseases?
ME and
CFS are both indexed at G93.3 in the Neurological chapter by the World Health
Organization. This means they are the
same disease. Attempts to make to
separate them are usually as a result of semantics or in order to diminish the
seriousness of the disease.
7.
You say it’s a neurological disorder, isn’t it a
mental disorder?
The World Health Organization
determines how a disease is classified. If ME/CFS was a mental disorder it
would be in the Mental Health chapter in the ICD or in the DSM, however,
neither of these medical “bibles” classify the disease as a mental disorder. It
is a serious neuroimmune disease which can get progressively worse and in its
most severe form cause death.
8.
But I’ve seen people with ME/CFS and they look
okay? How can that be possible?
People with ME/CFS endeavour to
take part in what activities they can. Unlike people who suffer from
depression, they have not lost any interest in hobbies, activities or life. In
fact, not being able to participate in these things causes patients with ME/CFS
an enormous amount of grief. What you see is a person with ME/CFS having a good
day. What you will not see is the price they will pay later for that “good
day”. People with ME/CFS can become
sicker if they do too much. This costs them jobs, friends, and support.
9.
You just said that the only drug for ME/CFS was
also for AIDS and Cancer, how can that be possible?
ME/CFS is not chronic fatigue.
Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune
disease without a known cause. ME/CFS patients have been compared to Cancer and
AIDS patients in their last two months of life. Cancer and AIDS patients
actually have better quality of life.
10.
Can I catch ME/CFS?
You will not catch ME/CFS from
someone by talking to them. However, it has been transmitted by blood
transfusion, and there have been outbreaks of it in communities in the past. At
this point in time, there have been 5 genes associated with ME/CFS, and most
people who have it caught it after having any virus such as chicken pocks,
mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not
to donate their organs or blood because of potential undiscovered agents in
their blood.
11.
How can I support the Blue Ribbon Campaign ME/CFS?
Donate to ME/CFS organizations around
that fund biomedical research. In the US and most
countries, research breakthroughs occur solely in the private sector, because
the CDC and NIH combined allocate at most $6M a year to study a disease that
they estimate affects 4-7 million Americans (more than AIDS, breast cancer and
lung cancer combined; and more than 10 times as many people as have
MS). This works out to about $1 per patient per year – compare that to
$35/patient for epilepsy, $70 for autism, $250 for MS, and a whopping $650 per
patient for cancer! Go to http://www.blueribboncampaignforME.org to find out where to donate.
12.
But what if I have a friend with the
disease, what can I do for them?
Ask them how they
are. Ask them how they are coping. Ask how you can support them. Many patients
are living isolated lives. It is painful for them to see so many people do what
they cannot do. Many patients cannot use the phone or listen to music because
noise and light drains them of energy. They cannot make appointments because
they do not know if they will be awake, or strong enough to go. So understand
when they cannot see you, and make an effort to come visit them, even if it’s
only for 10 mins to a half an hour. Talk to them, and listen.
13.
How many people have this disease?
At least 28 million worldwide. Over 4 million in
the U.S. Over 400,000 in Canada.
14.
Do people die from ME/CFS?
Yes, the most famous
case is Sophia Mirza who died at age 32.
She was sectioned in the UK because she would not get better, and her
subsequent “psychiatric treatment” led to her death. When her body was autopsied,
nothing was found, but an independent medical examiner inflammation was found
in spinal root ganglia. It was reported around the world that she died of M.E.
However, her death certificate read “CFS” because the pathologists who agreed
what the disease was argued about the name and CFS was the “modern term”. People with ME/CFS have a lower life
expectancy than the normal population and are more likely to die from cancer,
heart disease, organ failure and suicide (due to lack of support).
15.
What can I do to help raise awareness
for the Blue Ribbon Campaign for ME/CFS?
You can go to the
website http://www.blueribboncampaignforME.org . Bookmark us, and share the
info we give. But for now you can talk
about what you’ve learned to friends and family. If you are on Facebook or
Twitter you can join our cause and we will let you know how to help . You can
wear a blue ribbon or a blue ribbon bracelet when they are available to show
your support. When you give to the United Way you can ask that money be given
to ME/CFS. If you are a fundraiser, you
can organize a run or walk for ME/CFS.
16.
What is the Cycle of Hope?
It is a cycle across
Canada taken upon by Linda in order to raise awareness of the disease, and to
show the world that people can cycle, run and walk this disease. Many people
would love to be able to run, walk, or cycle for the disease, but not only are
there none organized, they are not well enough to participate. Linda asks that
you ride with her, and to start riding for ME/CFS too in Canada and around the
world.
No, I am not. I plan on building this Campaign according to my vision, but I wish to do so with the help of volunteers who want to help me and the cause.
