Rebecca Artman: CFS Advocate/CFSAC Member by Cort Johnson (2008)
This interview took place in 2008
How did your story with chronic
fatigue syndrome (ME/CFS) start?
I was working for a non-profit organization I went home at lunch to do the
laundry. When I got back to work it took me ten minutes to get out of the car. I
barely got into my office and then I collapsed and someone had to take me home.
Four months later I had to stop working.
Oddly enough my roommate ended up with the same problem and we both went
to the same clinic but we had different doctors. We both got diagnosed pretty
quickly but they didn’t know what to do with us and sent us to the Mayo Clinic.
About $20,000 later I saw Dr. Paul Cheney.
PANDORA
You’ve played a central role in
PANDORA, the Miami CFS
organization. How did you get involved in PANDORA?
I was at the CFIDS Associations Lobby Day when someone said you have to
talk Marla McKibben Silverman. We thought the CFIIDS Association of America
needed chapters, at the time but they weren’t interested. Marly and I both
thought that we needed to be going to state and national houses to ask for CFS
funding. Not long afterwards PANDORA was borne.
PANDORA is such a dynamic
organization. What is Pandora doing right?
We saw a lot of things right away that were not working in the community
and on Capitol Hill and we decided to try and fix them. It really helps that
Marla (Marly Silverman) is such a dynamo. She is able to put people together and
accomplish things. She dreams big and then she does it When we first starting
going the Hill people would tell us that we wouldn’t get to meet with anyone and
then we saw everyone! We’re also really lucky to have Nancy Klimas – a doctor
with a good reputation who’s very involved and willing to help us.
(Marly Silverman spent a good deal of time lobbying while she was in
Washington this time. She got some congressional staffers – for the first time
ever - to come down and visit the CFSAC meeting. Among other things PANDORA is
lobbying for a Center of Excellence in Florida and has just put on a Golf
Tournament that grossed approximately $80,000).
While we need a lot of help with the day to day operations like updating
our website, big things like getting state endorsed CME programs, and
congressional support and enthusiasm for a CFS Center of Excellence are moving
forward.
I just want to get an idea of how
this goes. You make an appointment to see your Congressman or Senator and then
what? Are you asking them to do something specific? Or just trying to make them
aware of ME/CFS? What specifically
can a Congressman do for a CFS
constituent? How can they make a difference?
I’ll give you the basics of how the US House of Representatives and Senate
(Congress) works and why we as CFS patients need to talk to them first, and then
go into the rest of the how to do it.
In the United States we have three branches of government Legislative,
Executive and Judicial.
The Legislative Branch (Congress) makes the laws for the country.
This includes CFS related laws which created the Chronic Fatigue Syndrome
Advisory Committee, the entire US budget (things like the CDC payback for
misappropriated funds take place in here) and disease specific legislation, like
the creation of a CFS Center of Excellence. The Legislative Branch has the
money. The Executive Branch (The President and his Cabinet) presides over
the government. If Congress passes a law, for example creation of the CFSAC,
then the Executive Branch executes the law. So the CFSAC members are
advisors and accountable to the Executive Branch of government.
The Judicial branch decides if the laws passed by the Legislative Branch
are constitutional.Each branch is separate, separation of powers is very important; it’s how
we avoid dictatorships.
So why is this important to know? If I as a CFS patient believes
there needs to be more CFS research funded by the Federal Government, or a
Special Road Map initiative for CFS. The patient has two avenues to
pursue. First is the legislative branch. Go to
www.house.gov and
www.senate.gov to learn who your
representatives are. You will have two Senators and one house delegate.
All three have been elected to represent you in making the laws of the country.
All you have to do is contact the office of your Senators and Congressman to
schedule an appointment with a healthcare staff member; or you can send an email
or make a phone call. These people control the Federal Budget, this is who
you ask for money for CFS projects.
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The Executive Branch is important to CFS patients because that is where
the Chronic Fatigue Syndrome Advisory Committee resides. They advise a
member of the President’s Cabinet (The Secretary of Health) on CFS issues.
This is a forum for bringing for actionable ideas. The executive branch
executes the laws of the legislative branch. So if the CFSAC makes a
recommendation, but there is no money for it, you can then go to the Legislative
Branch and ask for it.
This is something PANODORA is very passionate about. Years ago when
the CFSAC under the leadership of David Bell recommended five Centers of
Excellence for CFS, Marly and I grabbed the idea and headed to Washington.
(I wasn’t on the CFSAC then so I could do this.) We made appointments with
everyone who would see us. It started about a month before our trip with
faxes and emails asking for any appointment we could get during the two days we
would be on the hill. We went to most appointments together and pitched
what we wanted. A dialogue began that still continues. PANDORA continues
with the help of congressional staffers to submit an Appropriation Request (how
a law for the budget starts) each fiscal year for a Center of Excellence.
Some questions you can expect are how many people have CFS? 1-4 million
Americans. Does these impact minorities? (Yes, the current Georgia study
has found that more Latinos and African Americans have this illness than was
previously thought.) Why should CFS be a priority in spending vs. anything
else? is always asked. Be prepared to speak for less than five minutes.
Have a 1 minute pitch for those with no time (elevator and hallway
conversations) but be prepared to talk longer.
I think Marly and have
spent up to 30 minutes with a group of staffers at one time. If you don’t
know the answer, be honest – you’re a patient you don’t have to know everything.
You just need to know what you need and be able to express it.
A big don’t is DO NOT ramble. We in the CFS community tend to do that it’s
the cognitive problem. We’re trying to be engaging and multi-task our
brain and since CFS patients don’t multi-task well we can tend to miss cues
telling us our time is up. Like the “Thank you for coming”, or someone
standing up. Keep your story short.
I use index cards to state the ideas I need to cover. I tell the
staffers up front that part of my illness is cognitive so I will be using index
cards to keep me on track.
PANDORA makes appropriations
requests every year for Centers of Excellence. How did this come about and what
are you trying to accomplish?
It started years ago at the IACFS/ME Wisconsin Conference. David
Bell spoke about the need for CFS Centers of Excellence. I spoke with Dr.
Bell a bit while we were leaving the conference for the airport and he
recommended a book on Centers of Excellence programs.
Soon Marly and I were on the hill asking for funding for this program.
I did research on how things get done in Congress. Remember congress’s main role
is to establish a budget. Once I found out anyone can submit an appropriations
request I contacted my Senators and got the forms. The temporary Congressional
budget now includes a request for 500 million dollars for
CFS
research. We used to ask for $1 million but were told that that it’s been
quickly deleted because it’s too small. Currently I believe PANDORA’s
appropriation request is for $5 million.
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
You’re our patient representative on
the Chronic Fatigue Syndrome Federal Advisory Committee (CFSAC). Reportedly it
wasn’t easy to get a patient representative on there. You’re mixing it up with
some of the top names in CFS and with some pretty weighty government officials. In a
sense you’re the only amateur on the panel Do you have to struggle to get your
voice heard or do you feel like you’re listened to?
When I first started on the committee I used to joke with Nancy Klimas
that she needed to write a book called “Med School for dummies” because so much
of the medical jargon was over my head. So I ask a lot of questions.
I don’t think I struggle for my voice to be heard, if you read the minutes I’m a
very vocal participant. Patient are the reason this committee exists, the
charter for the CFSAC directs the committee to make recommendations to the
Secretary of Health pertaining to CFS.
If you go to the minutes online and search for my name you will find that
I’m not shy about asking questions. Because I’m not a patient I don’t have to
worry about career suicide, I can ask anything. That is a huge advantage.
Before I was a committee member I traveled to DC to testify at the
meetings several times. It’s so important for patients to know this is a
great venue for ideas on how to move CFS issues forward and find solutions to
current problems. The train goes to DC and a cab isn’t that expensive.
If you like anywhere near a train station this is an inexpensive and more
comfortable way to travel than air. Come for one day to testify if you can.
If you can’t attend the meeting, you can still participate by submitting your
testimony in writing. If you want to participate, start by visiting the
CFSAC website at
http://www.hhs.gov/advcomcfs/index.html to the contact us tab and request
time during the public comments section to read a statement or have your
statement read.
As a patient do you see areas where
the professionals sometimes just don’t get it about ME/CFS?
Something I realized recently, I was naïve on this point, is that medical
professionals are not usually altruistic. They are worried about their
careers. This illness with its horrid name, and mysterious cluster of
symptoms doesn’t seem interesting to most health care providers because most of
us aren’t dying (we just feel like we are).
But things are changing, although it’s a slow change. When shopping
for a new primary physician, I took the CDC toolkit with me. Those who
discarded it right away or didn’t seem personable didn’t get hired as my
primary. Finally I took the toolkit to avhealthcare provider and by my
follow up appointment two weeks later he had read the material and participated
in the CME work available. We were able to have a dialog about the illness
and now my family practitioner is always amazed at my optimism because he is now
aware of the seriousness of the CFS. I think that we as patients must
become champions in educating the healthcare providers around us. The
IACFS/ME is a great source for speakers if you can get a hospital or medical school
to sponsor an educational program. We also need to know that we can fire our
doctor and go to someone else. If you have medical insurance you have the
luxury of finding a primary who will work with you
Our biggest block with medical professionals is their individual ignorance
and hubris.. If you can find someone teachable, then you are very fortunate.
All organizations have their
bureaucratic problems but the federal government seems to be in a class of its
own. Dr. Bateman said it takes about three years to learn how the system works
(and then you’re out of there.) What is your experience here? Does the
bureaucracy in federal government really slow the down how fast things get done
over there?
AIDS patients were red to symbolize the red tape and bureaucracy of
government, this comes from the red tape that was tied around pensions from the
Civil War. If soldiers wanted their pension they had to physically go to
DC and go through red tape to get their pension. Not much has changed.
Let me give you an example of one bureaucratic problem with our illness,
the name. No one likes the name CFS. In Japan they call it “Burnout” I
like that more because that’s what I feel like most days. But it still
isn’t great. So we all hate the name. But what is the primary
(first) complaint of CFS patients – fatigue. The problem is that we as a
society think fatigue is being tired. It’s not fatigue is when the muscles
have worked so hard they can no longer function properly. So your brain
muscle can’t work to help you dial a phone number, or you put the car keys in
the freezer. The word is literally correct for our problem but our social
use of the word is all wrong.
So for years people have been trying to change the name. I myself
like Cheney-Petterson Syndrome, others like Nightigale Syndrome, or ME, or
CFIDS.
So we have name change committees and workgroups, and discussions on what
the name should be. But who in all the Federal Government decides what the
name (and case definition for CFS is? The CDC does. And the CDC
won’t change the name, they believe in sub grouping and naming the subgroups,
like HHV6.
This is all made worse because CFS has an image problem. We’re not
cute like puppies or baby seals, we’re not all children, we aren’t exclusively
in the third world, nor are we disaster victims needing one time funds, and it’s
not sexually transmitted. So as a pleasure driven society, we don’t really
disturb anyone. We’re mostly adults with an illness that sounds like we’re
just tired or lazy.
What has surprised you most about
being on the Advisory Committee?
The biggest surprise to me how concerned the Department of Health and
Human Services is about CFS patients. I have never met anyone in
government more interested in CFS patient care and well being than Dr. Anand
Parekh, the Acting Deputy Assistant Secretary for Health (Science and Medicine).
He is always expressing is concern about hearing the voice of the CFS patient
community. Dr. Parekh has spoken to me one on one by phone several times
about how to get patients more involved in the CFSAC meetings. For someone
of his political heft to be present at any of the CFSAC meetings, shows there
great concern about the illness.
I used to think, because I had been told this, that everyone at the CFSAC
meetings from government were there only because they were sent there by their
departments. It may be true for some of the Ex-Officio members (non voting
members of the CFSAC that represent various healthcare agencies), but many are
there because they really care and want to help. For example during the
last two meetings the need for a new RFA for CFS was discussed. Nothing
recommendation was made but we all thought it was important. Well last
month the NIH issued a new RFA for CFS.
It’s really appalling how little the
NIH and CDC spend on chronic fatigue syndrome (ME/CFS). The NIH is called the National Institutes of
Health but it seems to me that they’re more concerned with satisfying the needs
of their research community – which by and large isn’t very interested in ME/CFS
– than in helping out the millions of desperate ME/CFS
patients.
That’s true. The NIH responds to the number of grants they receive and
those grants reflect researcher interest. If, for instance, 90% of the
grants are for cognitive behavioral therapy (CBT) and those are the best written grants, those are the
ones that will be funded. The CDC spending on CFS remains a mystery to me.
The best avenue to change this isn’t going to the CDC or NIH, but going to
congress and asking for earmarked funding for CFS research.
Also, let’s face it some of us can donate money to research our illness.
You don’t have to give thousands of dollars, I’ve been known to donate five
dollars to an organization because it was what I could afford to give.
Many of us can donate to funding by skipping a movie, saving pennies, or
donating refund checks. I give to several CFS organizations (I don’t have much
so they don’t get much). Donate to IACFS/ME to help fund their CME Conferences,
which are a great tool for disseminating research information.
Getting researchers interested in this field is a huge problem. The reason
most researchers get into this field is because they know someone who has it.
Most researchers are not altruistic – they can’t afford to be; they need to be
able to publish, to have a career, to put a roof over their head.
CFS is not like cancer –Chronic fatigue syndrome is not the
kind of field that people enter for fame and glory, it’s the field you entire
for career suicide and fighting uphill battles.
But doesn’t the NIH bear some
responsibility in this matter? One of the things they could do is build up the
field by stating we’re going to provide X number of research dollars for the
next five years. Instead they’ve basically left the success or failure of the
chronic fatigue syndrome research program to the whims of the research field.
Dr. Agwunobi, the DHHS liaison to the CFSAC, said very bluntly and quite
memorably that ‘the Institutes (of the NIH) just don’t get it about chronic
fatigue syndrome.” Maybe I’m naïve but isn’t there someone who should say “Boy,
we’re really obligated to try and help these people?
That’s a tough question, I couldn’t find the quote from Dr.
Agwunobi in the minutes to place the context but I will address the rest of the
questions. I think the NIH is really trying to help, and I truly believe that Dr.
Eleanor Hanna is the reason we have any most CFS funding from the NIH. She
is a real champion for this illness. I don’t know that I can say the same for
the CDC.
Dr. Bill Reeves isn’t a warm and fuzzy kind of person, he’s a researcher
who is saddled with this illness and has become the public face for the CDC in
regards to CFS. We tend to make him the villain. I guess every story
needs one and with all our suffering as a CFS community it would be nice to have
a tangible enemy and not just this illness.
I think we do have people trying to address the problems of CFS, people
like Nancy Klimas, and Lenny Jason, and Dan Petterson, and many, many more. But
they don’t have the money it takes to solve this problem.
One thing Dr. John Agwunobi said in the July 2006 meeting that I think
really applies.
“There are three ways of moving health professionals and infrastructure
toward CFS awareness:
- Money, such as insurance reimbursement of certain procedures.
- Science—if there’s a best practice —is a more pressing motivator than
money.
-
More powerful than emerging science or an emerging funding stream is the
demand of patients. An aware citizenry drives demand” (page 22 of the minutes)
We as a CFS community need to be more vocal in our needs, we need to reach out
to congress for funding, we need to demand better science when we give public
testimony at CFSAC meetings, and we need to become an aware citizenry by telling
our story to the media, our neighbors, our families, whoever will listen. Then
ask everyone for money to help find a cure for your illness.
That X number of dollars for x number of years needs to come from Congress.
There are people accountable to the CFS community, but it’s not the NIH
or CDC we have no influence with them. We need to go to our
Senators and Congressional leaders and demand accountability from them.
As an added bonus many are just now gearing up their re-election campaign
and are more open to hearing from their constituency.
It feels like we have most of the
puzzle in place. We have great statistics – millions of Americans effected, high
levels of disability, extraordinary economic losses., I understand that the slow
progress of time will solve everything; that the accumulating research will over
time build the field and at some point we will have a robust research effort. My
expectation right now is that’ll happen when I’m about 80. What is the missing
piece that will get the federal government to sit up and pay attention?
The missing piece of the puzzle is public interest. We’re not
refuges, the illness isn’t an STD, we’re not cute. Watch “And the Band
Played ON” and see how the AIDS community changed thing. That’s what we
need to do. When they had Advisory Committee meetings the room was packed.
I don’t think we had more than 10 patients in the room at one time at the last
dozen CFSAC meetings. If we don’t participate in solving the problem by
voicing our problems and our ideas for solving them then nothing will change.
Do you feel like the Committee is
making progress? Do you
think you’re making a difference? If so can you point to something that
indicates it is?
It may feel like we’re having the same discussion again and again but I
think we are making progress. For instance at the last meeting the committee
made a recommendation that the Department of Health and Human Services make us
aware of tools we can use to educate agency healthcare centers and we got an
immediate response. Anyone who’s received a grant from the DHHS will now receive
information about CFS. The
committee also asked for a new RFA for CFS and that was issued last month.
One problem I see (and I did it when I spoke in the public comment part of
the meeting) is that we here problems, but no ideas for how to solve them.
Pat Fero is a dynamo and she comes to the meetings having done research on
spending, she’s making the NIH accountable for their grants. Mary
Schweitzer has addressed access to medicine, the name change and other problems.
Marly talks about the legislative and fund raising work of PANDORA. These
three patients are at every meeting. The community as a whole should
express their gratitude to these people.
What gives the CFSAC power is the number of voters who show up and demand
change.
We had better patient turnout at
this CFSAC meetings but it’s been pretty dismal for the last couple of years. Is
it important that patients turn out?
It is very important. I did some digging and found out that like the other
parts of the government that the every advisory committee has measures the
government uses to determine if they are doing useful work. One of whether they
are turning out recommendations and another is patient attendance. If patient
attendance is low the government assumes there’s little interest.
These measures are used by congress, if there is no interest in the CFSAC
then it can be expected by Congress that it isn’t an area of priority for
funding. If you think that CFS needs more money for research then come to
the CFSAC meetings and bring your family and friends.
(The CFSAC’s charter is up for
renewal again in December. Two years ago the Committee was in danger of being
disbanded and the CAA
devoted a Lobby Day to seeing that it wasn’t.)
It wasn’t in real danger because the committee is working very hard and
has more work to do. Anand Parekh had promised to get it renewed and it has
been.
INTERNATIONAL ASSOCIATION OF
CHRONIC FATIGUE SYNDROME/ME (IACFS/ME)
You’re also doing volunteer work
with our international professional organization, the International Association
of Chronic Fatigue Syndrome/ME (IACFS/ME). How did your work with them come
about? Did you just call them up one day and say need any help?
We all have certain talents, mine is to throw myself at whatever problem I
see and try to solve it. I’m a classic fixer.
So after my first IACFS/ME conference in Wisconsin, Marly and I went to
Nancy Klimas and said we want the next one in Florida. It was a ton of
work, and put Marly and I into a yearlong post conference crash, but it was so
worthwhile. I encourage every group out there to try to work with this
organization and co-sponsor a conference.
I guess because Nancy Klimas is the President of the IACFS/ME, my doctor
and my friend I just felt that I should do what I could to help. Plus they
are an organization for professionals, and since I want this illness to be taken
seriously I see the IACFS/ME as the best way to progress in the healthcare
areana.
What are you doing with the
IACFS/ME?
I’m using the experience I gained working for non-profits to do grant
writing for the IACFS/ME. I kept asking them if they had applied for this
or for that grant and they didn’t know about them. So I’m writing up grant
proposals for them to, for instance, defray some of the costs to the
International IACFS/ME conference in Reno next year.
I’ve also been trying to convince them that they need a paid Executive
Director. As our professional organization there’s so much they could be doing
but right now they’re an all volunteer organization staffed by already very busy
people. They’ve agreed to hire an Executive Director if I can come up with
the money. So one of my next projects is raising about $50,000, if you
have a few thousand dollars you would like to donate to this project, please
contact me at pandorarebecca@aol.com.
What specifically would an Executive
Director do for them? How would the IACFS/ME having an Executive Director
benefit your average ME/CFS
patient?
Right now the IACFS/ME is run by the board (all very busy CFS doctors)
An Executive Director would be someone with a business or financial
background who would run the organization and help it to grow.
As the board changes, the Executive Director remain the same so there is
continuity. Also there is one person who becomes accountable
for running the business.
There are a lot of talented people
who can’t work but might be able to contribute something. Are there any ways
other ME/CFS patients might be able
to assist the IACFS/ME?
Absolutely, first you can join the organization as a patient member; you
can also encourage all of your physicians to join the organization so they will
have the latest research information about your illness. Money is
important, so if you know people with money who care about you ask them to
donate to the illness that impacts your life.
Also, the subcommittees of the IACFS/ME can use worker bees. I help
on the fundraising committee. But there are other committees. In our
health lives we all had different jobs, think about what skill you have that you
can use to help the organization and then volunteer.
ADVOCACY ISSUES
There’s understandably a lot of
anger in the CFS
community at our lot. People are just furious at the government or X institution
or Y researcher but in the States only a few people show up for the federal
advisory meetings or at Lobby Day. It seems like there’s a lot of passion but
not a lot of action in the areas that could really affect us.
Patients can be as mad at one researcher or the other as they want but the
researchers don’t care. That makes no difference to them. If you want to make a
difference you have to go where the money is i.e. you have to ‘hit the hill’
(Capitol Hill). If you can’t physically go to the hill you can write a letter.
If you’re lying in bed you can still write a letter or ask one to be written for
you. Pick your topic; I can’t find a doctor, there’s no research, I can’t get
disability – whatever. The letter should be short and simple - if there are
enough letters there will be a resolution.
Because we’re not like AIDS patients – we’re not dying in droves – it’s
more difficult for us. If people with HIV weren’t dying we’d still probably not
know what causes AIDS. One staffer on the Hill actually told me that this
disease doesn’t matter because it’s not sexually transmitted.
Chronic fatigue syndrome (ME/CFS) patients with their post-exertional malaise have more
limitations that most people with chronic diseases. How do you balance your
obviously strong desire to make a difference and your health needs?
If your only limitation is your health and you’re willing to risk a crash
to accomplish something you can accomplish anything. If you’re not then you’re
going to accomplish small things. My doctor would kill me for saying this –
she’s always telling me to pace myself – but it’s how I get things done. I
push and then I crash, but I balance my crash.
Okay so here is my secret tool, I use a pedometer. If I walk more
than 8,000 steps in a day I will need a half day to recover, more than 10,000
then I will need a full day. If I go over 12, 000 then I’m out for several
days. This is my physical tool.
For mental exercise I use my watch. Two hours is the most time I can
give in any given day without a crash. The two day CFSAC meetings result
in one day of post meeting adrenaline overload (tons of energy but my mind is
useless) and then a good week or two of down time to recover.
The last IACFS/ME conference (five days) which I was really too involved
in resulted in almost a month long in bed relapse. I think Marly and I are
still recovering and it’s been a year.
You’re still unable to work but
you’re out lobbying and doing other things. That obviously bears some risk in
the sense of your suffering from a crash and relapsing. Then again it also means
that you’re acting pro-actively, that you’re engaged in something important to
you and that this disease has not isolated you. Does that in itself provide some
benefits?
This is an illness that isolates you. Because it does you really need to
reach out or you run the risk of losing your identity and self-esteem and
getting depressed. When I saw Paul Cheney he said ‘You need to get a
hobby”. I started quilting and I still do it.
I’m stubborn, my family is Slovok and German, so I joke that I get from
both sides of the family. I hate doing nothing. When I was at my
worst in the beginning of the illness and lying in bed, I was still trying to
help an adult friend learn to read. It’s who I am.
So lying in bed or waiting in doctors’ offices I couldn’t believe that
there could be this much pain without dying. I was angry that no one could
help me. So I decided to try to change things so no one have to suffer as
much as I was suffering.
That’s why I lobby and why I push myself. I don’t want anyone else
to suffer like I did. The pain was beyond description; the cognitive
issues were humiliating, crawling to the bathroom because my vertigo was
horrendous for months on end was humiliating. All of my pride all of my
accomplishments were for naught. The best movie example is the character
Emma Thompson plays in the movie “Wit”, there is just endless humiliation and
suffering.
So when I started to feel better I went to my first CFIDS Association
lobby day, I was a founding member of PANDORA, I did, and do all that I can so
that no one will have to suffer like I did.
And all of the relapses are part of the price I pay for my cause, our cause.
I often tell people that for me my energy is like money, and I am energy
poor. So I have to spend my energy wisely. I don’t blog or have a
website, but I use the few skills I developed before I got sick to try to make
the CFS community better with the tools I have. I show up and I ask humbly
for help.
My CFS world is small, my friends know that the hour or so they get of my
time each month is all I can give to them. I go to the library and get
books on tape and I have a therapy pet, okay he’s just a domestic house cat, but
he’s there for me when I’m feeling bad. I live with my parents because
even with disability insurance and social security disability after I pay for
just my medical expenses (like insurance) I only have few hundred dollars each
month for living expenses.
But having a small life isn’t that bad, I do what I can on the computer
and then I rest. When I have flair up my family understands and lets me
rest or be grouchy. They accept my apologies. I have a great CFS doctor,
and a local primary doctor who tries to keep up with my illness. For a CFS
patient I’m doing very well.
I still dream of recovery, of working full time, of having an active
social life, of being “normal”. I don’t know that I’ll ever get these
things back, but I’ve learned to be content with what I have and to strive to
make things better for others.
Disclaimer - This interview represents my thoughts and ideas and not necessarily the
thoughts and ideas of the organizations I am involved with. All comment
regarding the CFSAC is made as a member of the general public and not a CFSAC
member.