Post by Ms B. on Oct 24, 2008 8:49:52 GMT 10
10 October 2008 - source
As a major conference on chronic fatigue
syndrome and its related conditions prepares to
hit town, we look at the effects this often
devastating illness can have -- and the hope for
those who are dealing with it.
Michele Magnan, Calgary Herald
Published: Thursday, October 09, 2008
Q&A with Dr. Alison Bested
Dr. Alison Bested is one of a handful of Canadian
doctors who specialize in myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and related conditions such as fibromyalgia and
multiple chemical sensitivity.
We spoke with Bested, a Toronto-based
hematological pathologist and co-author of Hope and
Help for Chronic Fatigue Syndrome and Fibromyalgia
Second Edition (Cumberland House, 2008, $20.05),
about ME/CFS, how it's diagnosed and how it's
treated.
- What is ME/CFS -- is it considered a disease?
Disease means there is a specific entity known to
cause it. (That isn't the case here, so this is
considered) a syndrome, and is defined by a list of
criteria. The criteria (include) disabling, pathological
fatigue. People go for a walk and they might stay in
bed for the next three days -- there's this element of
post-exertional fatigue. They also have sleep
problems. They're not getting the deep sleep that
everybody needs in order to feel better. They often
have pain, which can be in their muscles and joints.
They also have brain fog, poor short-term memory,
they can't focus, they cannot multi-task and they
can't pull up words, so they feel stupid. (Symptoms
also include) chronic sore throats, feeling
off-centred, cold and dizzy all the time, heart
palpitations and irritable bowel syndrome.
It's extremely complicated, which makes it so
difficult to be sorted out by doctors, unless they
recognize this whole picture.
- How are ME/CFS, fibromyalgia and multiple
chemical sensitivity related?
They are all distinct, but the reason we lump them
together is we think they're environmentally linked,
in the sense that people are affected by their
environments more than (with) other conditions.
Usually ME/CFS is post-viral, while fibromyalgia is
more commonly related to physical trauma, like a
motor vehicle accident or a multiple head and neck
trauma, and then the pain spreads. Multiple chemical
sensitivity can start on its own, for example if you
have a history of being in a sick building, where
there's little ventilation and chemicals from the
office such as toner or paint. It starts as an exposure
problem that generalizes.
- How broad is the problem?
Ten million people in North America have ME/CFS or
fibromyalgia and only 20 per cent have been
diagnosed. (Those who are undiagnosed) think
they're lazy and crazy and are going out of their
minds. They're such desperate people.
- Can you please explain how ME/CFS occurs?
Chronic fatigue syndrome is a really complex
condition and most often it happens in middle-aged
women, often after some sort of infection. For
example, it usually happens in the winter months,
which is flu season, when someone can't get better
after the flu or something. A woman will often say, "I
can't even get up to make myself a bowl of soup.
What happened to me?"
The illness can be mild, moderate or severe, and
anybody can get it. Children can get it, men can get
it, and you can get it at any age. The majority of the
time, though, there is a history of something that
starts the ball rolling.
- So how do you begin to treat the condition?
It's a total picture because there's not just sort of
one specific therapy that will help everybody. We
look at the treatment in terms of the SEEDS of
health.
The "S" stands for sleep, "E" for the environment, "E"
for exercise, "D" for diet and "S" for support. The
place to start in terms of treatment is sleep,
because most of them have non-restorative sleep.
Look at your sleep hygiene -- things like going to
bed at the same time, having a dark room and the
right temperature and relaxing into sleep.
Potentially getting into medications (will help).
Unfortunately, there's no one drug that will give you
the deep restorative sleep. But in the meantime, at
least it gives the brain and body a break.
- How do people deal with the pain?
This is where the diet comes into play. A lot of the
people who have been ill haven't been preparing
meals, so they may need Meals on Wheels or have
someone feed them. They need to get away from
fried, fatty foods. Have some protein, vegetables
and starch at each meal, and supplement with a
multivitamin.
We almost always use an omega-3 fish oil for cell
repair and omega-6 to help the brain repair. Those
are the basics. (You also) need to look at how they
think about their pain, how it affects them, how they
can react. You have to help them deal with that, and
part of that is looking at the entire pain modality.
Ideally, you try to get them up slowly and mobilized
as they can tolerate. Sometimes they have so much
pain you may have to intervene with pain
medication.
- What's the long-term outlook for people who suffer
with this?
I have seen full recovery. (People will) be able to
work full-time and to have a full social life, but
they'll be back with a difference, because now they
will be mind-body aware. They'll be back, I think,
even better.
When people fully recover, now they know their
body's limits, so they know not to go beyond them
and they learn not to crash. Also, it depends on how
long they've been sick initially. I think the most
important thing is getting a diagnosis.
- Because there are no lab tests or easy ways to
identify ME/CFS or the related illnesses, what can
people do if they think they might have ME/CFS?
The best advice is if you have questions, read the
book. If you think it applies to you, you can take it
to your doctor and ask. Get some help. We don't
want people to treat themselves.
mmagnan@theherald.canwest.com
- - -
An Inside Look at Chronic Fatigue
As a high school sprinter who competed at the
provincial level and a top student with scholarships
to attend university, Russell Jasper had big plans for
the future.
And then, in May of Grade 12, Jasper contracted the
mononucleosis virus.
But instead of going away, as mono typically does in
four weeks, his symptoms lingered.
For a full year, his doctor told him it was just mono
and that he would get over it eventually.
That was five years ago, and Jasper's disabling
fatigue has only worsened.
Diagnosed with myalgic encephalomyelitis, which is
the British name for chronic fatigue syndrome (known
as ME/CFS), the now-23-year-old is housebound.
He has lost 50 pounds in the last few years.
Seemingly simple tasks such as walking down the
stairs, washing his hair or even speaking are
exhausting for Jasper, who spends much of his time
upstairs in his parents' southwest Calgary home.
"I don't really do anything anymore," he says softly.
"I stay upstairs in my little room."
Susan, Jasper's mother and the vice-president of the
Myalgic Encephalomyelitis/Fibromyalgia Society of
Alberta (ME/FM), has fibromyalgia herself and stays
home to take care of both Russell and her
21-year-old daughter Katie, who also suffers from a
milder form of ME.
She says she is looking forward to the upcoming
ME/CFS conference in Calgary because there is a real
need for more information. And she has seen
first-hand how these conditions can be
misunderstood by the public.
"It's like (my kids) have had every aspect of their
lives ripped away from them," she says.
As a major conference on chronic fatigue
syndrome and its related conditions prepares to
hit town, we look at the effects this often
devastating illness can have -- and the hope for
those who are dealing with it.
Michele Magnan, Calgary Herald
Published: Thursday, October 09, 2008
Q&A with Dr. Alison Bested
Dr. Alison Bested is one of a handful of Canadian
doctors who specialize in myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and related conditions such as fibromyalgia and
multiple chemical sensitivity.
We spoke with Bested, a Toronto-based
hematological pathologist and co-author of Hope and
Help for Chronic Fatigue Syndrome and Fibromyalgia
Second Edition (Cumberland House, 2008, $20.05),
about ME/CFS, how it's diagnosed and how it's
treated.
- What is ME/CFS -- is it considered a disease?
Disease means there is a specific entity known to
cause it. (That isn't the case here, so this is
considered) a syndrome, and is defined by a list of
criteria. The criteria (include) disabling, pathological
fatigue. People go for a walk and they might stay in
bed for the next three days -- there's this element of
post-exertional fatigue. They also have sleep
problems. They're not getting the deep sleep that
everybody needs in order to feel better. They often
have pain, which can be in their muscles and joints.
They also have brain fog, poor short-term memory,
they can't focus, they cannot multi-task and they
can't pull up words, so they feel stupid. (Symptoms
also include) chronic sore throats, feeling
off-centred, cold and dizzy all the time, heart
palpitations and irritable bowel syndrome.
It's extremely complicated, which makes it so
difficult to be sorted out by doctors, unless they
recognize this whole picture.
- How are ME/CFS, fibromyalgia and multiple
chemical sensitivity related?
They are all distinct, but the reason we lump them
together is we think they're environmentally linked,
in the sense that people are affected by their
environments more than (with) other conditions.
Usually ME/CFS is post-viral, while fibromyalgia is
more commonly related to physical trauma, like a
motor vehicle accident or a multiple head and neck
trauma, and then the pain spreads. Multiple chemical
sensitivity can start on its own, for example if you
have a history of being in a sick building, where
there's little ventilation and chemicals from the
office such as toner or paint. It starts as an exposure
problem that generalizes.
- How broad is the problem?
Ten million people in North America have ME/CFS or
fibromyalgia and only 20 per cent have been
diagnosed. (Those who are undiagnosed) think
they're lazy and crazy and are going out of their
minds. They're such desperate people.
- Can you please explain how ME/CFS occurs?
Chronic fatigue syndrome is a really complex
condition and most often it happens in middle-aged
women, often after some sort of infection. For
example, it usually happens in the winter months,
which is flu season, when someone can't get better
after the flu or something. A woman will often say, "I
can't even get up to make myself a bowl of soup.
What happened to me?"
The illness can be mild, moderate or severe, and
anybody can get it. Children can get it, men can get
it, and you can get it at any age. The majority of the
time, though, there is a history of something that
starts the ball rolling.
- So how do you begin to treat the condition?
It's a total picture because there's not just sort of
one specific therapy that will help everybody. We
look at the treatment in terms of the SEEDS of
health.
The "S" stands for sleep, "E" for the environment, "E"
for exercise, "D" for diet and "S" for support. The
place to start in terms of treatment is sleep,
because most of them have non-restorative sleep.
Look at your sleep hygiene -- things like going to
bed at the same time, having a dark room and the
right temperature and relaxing into sleep.
Potentially getting into medications (will help).
Unfortunately, there's no one drug that will give you
the deep restorative sleep. But in the meantime, at
least it gives the brain and body a break.
- How do people deal with the pain?
This is where the diet comes into play. A lot of the
people who have been ill haven't been preparing
meals, so they may need Meals on Wheels or have
someone feed them. They need to get away from
fried, fatty foods. Have some protein, vegetables
and starch at each meal, and supplement with a
multivitamin.
We almost always use an omega-3 fish oil for cell
repair and omega-6 to help the brain repair. Those
are the basics. (You also) need to look at how they
think about their pain, how it affects them, how they
can react. You have to help them deal with that, and
part of that is looking at the entire pain modality.
Ideally, you try to get them up slowly and mobilized
as they can tolerate. Sometimes they have so much
pain you may have to intervene with pain
medication.
- What's the long-term outlook for people who suffer
with this?
I have seen full recovery. (People will) be able to
work full-time and to have a full social life, but
they'll be back with a difference, because now they
will be mind-body aware. They'll be back, I think,
even better.
When people fully recover, now they know their
body's limits, so they know not to go beyond them
and they learn not to crash. Also, it depends on how
long they've been sick initially. I think the most
important thing is getting a diagnosis.
- Because there are no lab tests or easy ways to
identify ME/CFS or the related illnesses, what can
people do if they think they might have ME/CFS?
The best advice is if you have questions, read the
book. If you think it applies to you, you can take it
to your doctor and ask. Get some help. We don't
want people to treat themselves.
mmagnan@theherald.canwest.com
- - -
An Inside Look at Chronic Fatigue
As a high school sprinter who competed at the
provincial level and a top student with scholarships
to attend university, Russell Jasper had big plans for
the future.
And then, in May of Grade 12, Jasper contracted the
mononucleosis virus.
But instead of going away, as mono typically does in
four weeks, his symptoms lingered.
For a full year, his doctor told him it was just mono
and that he would get over it eventually.
That was five years ago, and Jasper's disabling
fatigue has only worsened.
Diagnosed with myalgic encephalomyelitis, which is
the British name for chronic fatigue syndrome (known
as ME/CFS), the now-23-year-old is housebound.
He has lost 50 pounds in the last few years.
Seemingly simple tasks such as walking down the
stairs, washing his hair or even speaking are
exhausting for Jasper, who spends much of his time
upstairs in his parents' southwest Calgary home.
"I don't really do anything anymore," he says softly.
"I stay upstairs in my little room."
Susan, Jasper's mother and the vice-president of the
Myalgic Encephalomyelitis/Fibromyalgia Society of
Alberta (ME/FM), has fibromyalgia herself and stays
home to take care of both Russell and her
21-year-old daughter Katie, who also suffers from a
milder form of ME.
She says she is looking forward to the upcoming
ME/CFS conference in Calgary because there is a real
need for more information. And she has seen
first-hand how these conditions can be
misunderstood by the public.
"It's like (my kids) have had every aspect of their
lives ripped away from them," she says.