Everything You Ever Wanted to Know About CFIDS But Were Afraid to Ask--
From Someone Who Has It
Many of you
have heard about our Editor-in-Chief's battle with CFIDS. To answer some of the many
questions she receives about living with this illness (and address the ones people are
afraid to ask) we put together this Q&A.
The information contained herein is based on research gathered in
her personal quest to learn about her condition and is in no way intended to be medical
advice or a substitute for seeing your doctor.
Q. What is CFIDS, and what are the
symptoms?
A. CFIDS (pronounced "SEE-fids") is an autoimmune disease
that affects the brain and central nervous system, affecting an estimated 1
million people in the U.S. Some of the symptoms may include: joint
or muscular pain; flu-like symptoms; vertigo, dizziness or feeling faint; cognitive
problems such as short term memory loss or sudden problems with reading or math functions;
food and chemical sensitivities; sudden weight gain or loss; vision problems; low-grade
fever; chills; and fatigue. The symptoms are sometimes worse, sometimes better, and they
may even go away for long periods of time before returning. The acronym
CFIDS stands for Chronic
Fatigue Immune Dysfunction Syndrome. Some famous people who have talked publicly
about having it are Seabiscuit author Laura Hillenbrand
and film director Blake Edwards.
Q. Is CFIDS the same as Chronic Fatigue Syndrome (CFS)?
A. It's a different name for the same illness. Many people, including
myself, prefer the name CFIDS ("SEE-fids") because "Chronic Fatigue
Syndrome" only covers one symptom of a complex disease and for many of
us is often the least of it. The word "Fatigue"
leads many people to think we're just tired, so they don't take it seriously--including
some medical professionals who haven't been educated about it. In Great Britain and Canada CFIDS is called myalgic encephalomyelitis (M.E.), which is a great
descriptive name if you can pronounce it. (Impress your friends at parties with it: my
best shot at it is "my-AL-jik en-SEF-a-lo-MY-uh-LY-tis.")
Q. Is CFIDS the same thing as Epstein-Barr syndrome?
A. That was the theory in the '80's, but they've discovered that not
everyone with CFIDS has the EBV virus. So many researchers
feel they're separate but similar illnesses. (Some sources
also say M.E. is different from CFIDS, too, but opinions vary on this.)
Q. Is CFIDS a serious illness?
A. Yes, although the severity of it varies among people who have it. But it is
a serious illness, particularly for people with CFIDS who have fewer natural
killer cells. CFIDS can be progressive (although not always), and I
have met
people who have ended up in a wheelchair from it.
Q. What causes CFIDS?
A. We don't know yet, because there have been very few formal studies,
especially in the U.S. The most common theory is that it's a virus: either a virus
that hasn't been "discovered" yet, or a mutation of a virus that already
exists, such as poliovirus.
Some researchers also think it may be related to environmental toxins.
There are also some common threads among many people who have CFIDS...Many of us had mono in our teens, got what seemed like a
major case of flu that never fully went away, or had head
injuries in the past. (The first two are true in my case.)
Q. Can I catch CFIDS from someone who has it?
A. As far as I know, no, but researchers don't really know. I've read
about isolated cases where people in families or married couples get it, but they seem to
be pretty rare, and some researchers feel there's a genetic or environmental factor in who
gets it. (There have been CFIDS-like epidemics in isolated areas over the past 70 years,
but I've yet to read anything that suggested that researchers think the people involved
actually infected each other.)
Q. What is the treatment for CFIDS?
A. There is no "standard" treatment for CFIDS as of yet.
That doesn't mean there's nothing that can be done; I just mean that so little is known
about CFIDS, there's no standard, so patients are often told
there's no treatment.
For now, the doctor and patient try different
things until they come up with whatever helps the symptoms. Some people do well with
various medications, others, like myself, do better with alternative therapies
like vitamin and mineral supplements, special diets, and other therapies.
Treating it is a challenging process, because we all have
different combinations of symptoms, the symptoms sometimes change, and they sometimes go
away and return periodically. Patience and
tenacity is a must.
Q. Can people who have CFIDS exercise and work out?
A. It depends on the symptoms and severity of the illness, so you have
to discuss it with your doctor. Some people do OK. Others, like me, whose
bodies have trouble processing lactic acid and
ammonia (which
build up in the muscles during exercise), experience a worsening of symptoms and become
very ill, because we're producing the very substance we're sensitive to. Not all doctors
are aware of this, however, so proceed with caution and ask lots of
questions if your doc gives you the greenlight.
Q. Is there a cure for CFIDS?
A. Not yet. The "cure" rate for CFIDS ranges from three
percent (3%) to fourteen percent (14%) depending on which source you read. That
doesn't mean it's impossible, just difficult.
Q. Can you die from CFIDS?
A. Most sources say no, though a few people dispute that. It's
probably safe to say that dying of CFIDS itself is very, very rare. But, since people with
CFIDS have impaired immune systems, we're more susceptible to things like flu,
infections, and certain forms of cancer. Also, there's a
proportionately
higher suicide rate among people with CFIDS as compared to the general
population, which is a little scary. But knowledge is power.
Q. Is it true that some doctors still think CFIDS doesn't exist or
that it's "all in your head"?
A. Unfortunately, yes, and the name "Chronic Fatigue Syndrome"
doesn't help. There are still doctors out there who haven't
been educated about CFIDS. But there's enough research and anecdotal evidence out there
out there to show that CFIDS is a very real disease. The CDC in Atlanta gave it a
name and case definition in 1988: that's an action that doesn't happen lightly, because
government funding comes into play. Yet there are still physicians out there who aren't
even aware the CDC has named it as a disease. Many patients have to "doctor
hunt" for years before they find one who is familiar with the latest research. (It
was the same way with Multiple Sclerosis (MS) 40 or so years ago;
until doctors started learning about it, many MS patients were told, "it's all in
your head.")
Q. What does having CFIDS feel like?
A. It's probably different for everyone, but most of the time it just
feels like I'm coming down with the flu...You know that thing where you feel achy and run down?Sometimes it feels like the very beginning of the flu, and sometimes it's like
I've been completely slammed with it, depending on
what I've eaten
that day, whether
I've been around any chemicals like cleaning products, and whether I've
been working too hard.
Usually I notice feeling good more than feeling
bad, because you get used to your body feeling a certain way... So when I wake up feeling
really good, I try to really focus on what that feels like so hopefully my body will
remember the goal. Then I say "thank you" incase someone's listening!
Q. Does CFIDS hurt physically? Is it painful?
A. Sometimes, yes. Mainly I notice it when something is out of the
ordinary.
Q. Can guys get CFIDS?
A. Yes, in fact I know two guys with CFIDS. Women either get CFIDS more
often than men or are just diagnosed with it more. Some researchers feel that since most
guys have to be dragged to the doctor kicking and screaming, they get tested more
thoroughly than women, so other illnesses that mimic CFIDS get properly
diagnosed and treated--thus reducing the number of men who have it.
Q. What's the most challenging thing about living with CFIDS?
A. I'll try to cover all the bases here... Most
challenging day-to-day: Getting showered, dressed, and ready for the day; it's physically
exhausting and feels like you're trying to move through deep sand. Once you're finally ready
and moving, you're afraid to stop! Emotionally: It's shallow, but true;
the toll any chronic illness takes on your looks is very hard to get used to, especially
if you work in an image-driven profession. Overall: Conserving energy!
I'm one of those people who's always doing ten things at once, so I have to really force
myself to slow down so I don't run out of energy. But that's a pretty fortunate challenge to have,
so I'm glad to have it. There are a lot of people who are worse off.
Q. What was the most difficult time you've gone through with CFIDS?
A. At one point I went through a very long period when the vertigo was
so bad, I couldn't read, watch TV, or listen to music because the room would start
spinning--kind of like when you've had too much to drink and it's not fun anymore--and I
was too sick to do anything else. I'd always used music as stress relief
along with
having it in my work life, so not having it when I really needed it most was very difficult.
(My sister later said it was "like the music died" in our family.) When I could
listen to music again, I couldn't get enough and started playing everything
in my collection. I still can't get enough! My list of CDs to buy is always huge.
Q. How do you deal with the emotional impact, and what keeps
you going?
A. It sounds simplistic, but I believe that you're never given more
than you can handle. When it gets rough, you close
your eyes and hang on 'til it gets better! Then when you're past it, you realize it could
have been worse. Having a sick sense of humor helps... (No pun intended.) Once you get the hang of it, there's
actually a lot of sick humor in CFIDS.
The biggest thing that's helped is, I do believe that everything happens for a reason.
Maybe the reason I got a weird disease, if I had to get something, is because I
can promote, write, and have media contacts and can use all those things to help
someone else by spreading awareness.
Q. What advice do you have for someone living with CFIDS?
A. Pay attention to your body. You live in it, so
you know when you need to rest. Make your own rules, if that's what you have
to do to take care of yourself, and don't let anyone try to make you feel
bad about it (which some people will).
As for friends and relatives...you may be surprised by who can handle
it and who can't...Gently let go of the ones who can't. If there are people in your
life who are used to your doing things for them, tell them,
"Wonderwoman has
left the building," and mean it. Often people want to help but don't know how, so don't
be afraid to ask. If someone offers their help, always take them up on it,
because you may need that energy later. And expect that they'll do it
differently than you do.
When it comes to healthcare and insurance companies, be
very pro-active
and assertive, and enlist an assertive friend to help
you with phone calls and paperwork for those times when you're not up to it. Try
to find a doctor who views your health care as a team effort, and do your own research and
discuss your findings with him or her. You may stumble onto something your doc hasn't.
As to day-to-day tasks... Anything you can do to conserve
energy helps, like having a barstool in the bathroom so you can sit
down to brush your teeth (you'll feel like an idiot at first, but that's OK.) A vanity
table organized with your makeup and hair products where you can sit down
to get ready is a glamorous necessity that doesn't make you feel like an invalid.
Another barstool at the kitchen counter is a huge help, too, along with a
food processor if you cook, because standing there chopping is usually
the most exhausting part. Also, Chef's Catalog has a automatic pot-stirrer that
can be set to periodic or continuous to eliminate constant standing or getting up and down
to check on dinner. All of this is hard to get used to, but you need to
save energy on little things so you have it for important things. Just say
you're a a diva and get on with it.
Finally, laugh hard and often to get your endorphins going. If you
can't find something to laugh about, find a favorite daily sitcom and make a standing
appointment with it.
Q. What advice do you have for the loved ones of someone
living with CFIDS?
A. Be patient: your loved one is as stressed out,
angry, and scared by this whole situation as you are. Exhaustion can come out of
the blue, so try really hard to be understanding if your loved one suddenly
doesn't feel up to going somewhere you'd planned to go. It takes a while to learn how to
guess when your body's about to crash, and sometimes it attacks by surprise
despite our best efforts.
If your partner is ill: step out of the box and help out with
chores you don't normally do (maintaining a household and cooking dinner can be a
nightmare when you're sick). If your partner is sick during the holiday season
and is the one who usually does the holiday preparations, step up and offer to do the
decorating or get someone to do it, then brainstorm with your partner find ways to handle
the holiday meal. (Being sick during the holidays in an undecorated house that's usually
filled with cheer SUCKS.)
If you live with someone who has CFIDS, make an extra effort to find
out where things belong in your home and put them away--label shelves and the insides of
drawers with a labelmaker if you need to. Many of us have short-term memory problems we
never had before, so finding things in the same place every time is very important.
Also, it's exhausting and frustrating when you can't find something...and doing an
archeological dig takes energy that could be used for something else.
Don't try to "fix" your loved one; you'll only get frustrated,
so let the medical team and your loved one handle it. Just be ready to stand up
and defend them when they need it, offer your assistance with tasks, and let your
loved one call the shots when it comes to treatment and how to deal with it. Also, don't
go on about how "heroic" your loved one is; it puts pressure on them to
be the "model patient." Just let them know you're proud of them no matter what, and that
you're there for them.
None of this is easy, so give yourself a big pat on the back. Also, there are many support
groups for people with CFIDS and other chronic illnesses (both online and off),
plus groups for caregivers and other family members to vent their
frustrations.
Oh...and laugh hard and often!
Q. How do you do MusicBizAdvice.com with CFIDS?
A. A great team, a lot of advance planning, and a lot of flexibility.
Working live shows taught me how to create a portable office, so that's a huge help.
Q. How do you handle dating and relationships with CFIDS?
A. You have to judge every situation for yourself, but I'm more
comfortable being honest and open about it. You don't want to scare the poor
guy off, but usually you know
right away whether you feel comfortable telling someone you're ill. If
I'm certain you'll never see them again, or if I have a strong gut
feeling they won't be accepting of me, there's no need to get into it. But
if I want to see them again, I'm upfront about it on the second date, because it's only fair. (It's also less exhausting than tying
to hide it!) Most people are freaked out by it, so I'm very matter-of-fact
about it, and I try to keep it light and always give the guy an easy out. If
he takes it, I'm not offended...It's OK, I'm not good with sick people
either!
Most of the guys I know are really curious, and when they realize it's OK to ask me
about it, they have a million questions. That's fine, too... I'm also clear about not
looking for a husband or someone to take care of me, which is probably a huge relief
to them. The cool
thing is, once it's out there, a lot of the anxiety of meeting someone new--whether it's a
friendship or whatever--is gone, because you're not trying so hard to be perfect, which
none of us are.
For those who are isolated or who would feel more comfortable dating someone who can
relate to it, there are singles groups for people who have CFIDS and other chronic
illnesses. I've never actually used one, though: what happens if both of you
are sick at the same time?
Q. How has living with a chronic illness changed your life?
A. It's changed everything...from my profession and hobbies, to what I
eat. The friendships I've made since I've been sick have tended to be deeper,
because you don't have the energy for B.S.. I'm also much more
politically active than I was, and writing has
gone from a back-burner, "someday" thing to a major thing.
I've also learned more about the healthcare system than I ever would have otherwise
(or wanted to),
and about the politics that surround illnesses--things like research funding, and the
roles of the medical community, the Center for Disease Control, and government
officials--and about the competition between organizations that are supposed to help people
with chronic illnesses. I was never aware of any of that before.
Q. What have you learned most from having CFIDS?
A. That you're stronger than you think you are. Also, to be grateful
for what you have and to not take anything for granted--I ate healthy foods, worked out,
and didn't smoke, drink, or do drugs and still got a chronic disease at age 29.
Q. Do you think you'll be cured?
A. That's not for me to say. I know the odds, but the odds against my
breaking into the music industry without knowing anyone in it and working with some of my
idols were far greater. Let's just say I have hope, and I kept my riding helmet (horseback
riding is one of my former hobbies).
Q. Why did you go
public about having CFIDS?
A.
Because so few people in our industry who have it are willing to. We don't
have a celebrity the level of Michael J. Fox who is willing to talk about
it, due to fear of not getting work or being uninsurable, or fear of what
people will say because of the stigma that's still attached to this disease.
(In some Hollywood circles, it's fine to be an addict, but people with any
other kind of illness are thought to be unproductive and are shunned.)
A lot of people in the industry have approached me and said, "I have it
too, but please don't tell anyone." I understand their fears, but
none of that will change without people speaking out. Unless we talk about
it, we're not going to get funding for research, new treatments, or a cure.
There was a period
of time when I didn't tell my colleagues I was sick, because I didn't know
what I was dealing with. But after awhile, I started hearing rumors
about myself--that I'd "disappeared" from their the radar because of
drugs, which was hilarious, because I'd lost a parent to chemical dependency
so I wasn't going there.
Q. Where can I get more information on CFIDS?
A. The CFIDS Association of America and the National
CFIDS Association both have of resources on a lot of topics related to CFIDS.
There are also a lot of books out there. The one I've found most helpful
thus far is Chronic Fatigue Syndrome: A Treatment Guide: by Erica
F. Verrillo and Lauren M. Gellman. There's also a very powerful documentary
film called I Remember Me, which is a very
realistic depiction of what some people with CFIDS go through. (It's not easy to watch and
is not recommended for those who may be depressed, but is very eye-opening). It runs
periodically on either the Independent Film Channel or the Sundance Channel. Or you might
try an obscure video store or online.
Q. What's your opinion of stem cell research?
A. It's a very sensitive issue, and I understand everyone's
fears...but since research breakthroughs are going to happen somewhere in the world, I
think we should be at the forefront. We need it, albeit with guidelines and
regulations...Not just to find cures, but to find promising
treatments.
For example, there's one potential treatment I read about where they could take healthy immune system cells
from an embryo that's been discarded due to selective reduction*, generate the cells and
give them to someone with an immune system disorder, and then that person could have a
whole new, healthy immune system. That one potential treatment could help so many
people, it could potentially help reduce the strain on the healthcare system
and the social security disability system. Most chronically ill people want to be
happy, productive citizens. And they'd be pumping a lot of money into the
economy
as they made up for experiences they'd missed out on.
What opponents of embryonic stem cell research don't want the public to know is, the
embryos most researchers want to use in embryonic stem cell research are the ones that are
already being discarded--either through
selective reduction* in fertility treatments, or they're embryos that have been sitting in
fertility clinic freezers indefinitely and will eventually be discarded when
they're no longer viable.
Simple math says there must be embryos from Right-wingers sitting
in fertility clinics, or that have been discarded, too...not just from
Liberals. The right to life issue isn't even at issue to many of us in this instance, because all we're saying is, let those
embryos that will already not have a life give someone else a life, similar to organ
donation. We're not in any way saying that embryos should be created for the
purpose of research, and it could be regulated to reflect that.
I understand why people are upset, but misinforming the public isn't the way
to go, regardless of beliefs. Someone I was talking with recently thought
the embryos we're talking about had tiny little hearts and would resemble
miniature babies if you looked at them under a microscope. That's not the
case; they're still clusters of cells that haven't determined what they're
going to be yet.
I understand it's a complex, sensitive issue, though, so it's extremely
important that people be informed before they make a decision.
* selective reduction is
a commonly used technique where several embryos are implanted to increase the chance of a healthy pregnancy.
The
most viable one is kept, and the others are discarded.
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