Tired of Being Misunderstood -ME/CFS

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CALGARY HERALD

Tired of being misunderstood

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@...

- - -

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, 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. "

, 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 and her

21-year-old daughter , 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.

For more information about the illnesses and the

society's work, visit mefmalberta.org.

For more information about the conference, see

sidebar on Page E2.

- - -

The Calgary Conference

Looking to know more about myalgic

encephalomyelitis/chronic fatigue syndrome (ME/CFS)

and other fatigue-related illnesses?

You may want to check out an upcoming conference

co-ordinated by Dr. Ellie Stein, a Calgary-based

doctor with CFS.

The event is geared towards both health

professionals and people who suffer with ME/CFS and

related conditions such as fibromyalgia.

" There's a really dire need for the average family

physician to learn how to treat the illness, " she says.

Family physicians, general internists,

rheumatologists and psychiatrists are invited to

participate in a two-part educational lecture series.

The first lecture, called Diagnosis and Assessment of

Patients with ME/CFS, will be held on Oct. 24 from 1

p.m. to 4:45 p.m. in the Dr. Clara Christie Theatre at

the University of Calgary.

The second lecture, called Clinical Management of

ME/CFS, will be held on Nov. 7 from 1 p.m. to 4:45

p.m. at the U of C's Libin Lecture Theatre.

Researchers and clinicians who work with a variety of

chronic fatigue conditions are invited to a research

symposium on Nov. 8 from 9 a.m. to 4:30 p.m. at

the U of C's Libin Lecture Theatre.

People with ME/CFS and related illnesses, their

families and the general public are invited to attend

a public lecture on Nov. 9 from 1:30 p.m. to 4:30

p.m. at the Libin Lecture Theatre. Experts will share

updates on research and provide tips, as well.

Tickets to the public lecture cost $30 per person or

$15 per low-income person. For more information

about or to register for any one of the events, visit

cme.ucalgary.ca, or call Dr. Stein's office at

.