Saturday, May 16, 2009

CFSAC podcasts

About five years ago, MAME petitioned the CFSAC to have their meetings video
cast so that those of us who are not able to attend the meetings can get the
benefit at least of seeing and hearing them.  First the CFSAC, under Larry
Fields, turned us down. They talked about expense, privacy..a bunch of
things which did not, in our opinion stand as credible reasons. Especially
as NIH was already podcasting other advisory committee meetings. We had gone
through the ADA thoroughly, and felt confident of our opinions. Eventually
we went to the Office of Civil Rights. They too turned us down, for reasons
similar to the ones cited by the CFSAC.  We were given exactly 30 days to
request an administrative review, a lengthy and involved process.  Later to
our dismay we found that the normal time allowed for a request for
administrative review was 60 days.  They were to get back to us. And they
never did.  We debated our options ­ sue the Office of Civil Rights for the
violation of our civil rights? It didn¹t make sense..go to the ACLU ­ a
possibility.  We received a generous donation to pursue the suit, but the
lawyer we found made inquires and came up with nothing.

Wanda Jones, we found, took an interest in what we were trying to
accomplish. This was a great change. We sent her all the correspondence. Not
too long after that we got a phone call from the OCR about the status of our
request.  As I process things slowly I left a message asking that we
communicate via email.

Today we got the following news.  The meetings will be video cast. NIH will
be checking to see how many people watch in, so please do log in & encourage
others to do so. You can watch the meetings at your own pace, take breaks as
needed, re-watch if necessary. We are no longer excluded from benefiting
from the meetings. Though not interactive, this will give each and everyone
of us with access to a computer access to the meetings.

We hope to get the letters on a site where others can read them if

The following message was sent by Rebecca Artman:

Good news!

Wanda has made arrangements with NIH to have the CFSAC meeting
accessible via videocast.

The technology will provide access to
those individuals unable to attend the meeting in person and support
on demand access after the meeting since the proceedings will be

The link to the video cast will be made active on the day of the
meeting (Wednesday, May 27, 2009) on the NIH Video cast website @:

Please note:  RealPlayer is required to view the videocast, and users
can download the latest version of RealPlayer @

It¹s recommended that users test their computer and network
connection here:

The videocast information will be posted on the CFSAC webpage and
also available in an automated message generated from the CFSAC mailbox.

Jean Harrison

Friday, May 15, 2009

Keep those cards and letters coming!

Pres. Obama has appointed an infectious disease specialist to head CDC.   We need to inundate him with information that CFS is, in fact, an infectious disease.
 Thomas Frieden
 1600 Clifton Road NE
 Atlanta GA 30333 USA
This may be the person who finally takes our disease seriously.  If you were struck down after a virus (as I was), hit on that hard, so he gets the message that this *is* an infectious disease and investigating it should be right up his alley.

Tuesday, May 12, 2009

$24B in Three Years

CNN reported this afternoon that the government predicts a tax on soda could bring in the significant sum of $24B in three years.
I know of something that could bring in more than that in only ONE year!
The economic effect of CFS -- a neurological condition known as Myalgic Encephalomyelitis in the remainder of the English-speaking world -- is $26B per year in the US alone.  If these patients, many of them highly-educated and formerly with paychecks to match, could be put back to work, it would be far more beneficial to the economy than a tax on soda.
Unfortunately, Ampligen, an anti-viral drug shown two decades ago to work miracles, and available in Belgium and Canada, is still tied up in FDA paperwork.  They won't approve it for political reasons, but they can't find grounds to deny it for scientific reasons.
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!
Today is CFS Awareness Day.  Perhaps CNN's viewers would be intrigued to learn how easy it would be to put $26B back into the US economy.
Just speaking for myself alone, my being disabled because there's no medication to treat what I have has already cost the economy about half a million dollars.  By retirement age, that will be far in excess of a million dollars.  I cannot spend what I cannot earn, but I cannot return to work without treatment.  And that statistic is for just one person.  Multiply that by the millions of patients around the world, and the number is staggering.


A Nurse speaks on Fibromyalgia

At the Walk/Vigil, I received a copy of the FMAware magazine (you can order a back issue, this was Winter 2008, from which had two articles by a nurse.
The first was titled "How can I have a disease I don't even believe in?", in which she recounts her own lack of empathy, thinking fibro patients are simply drug seekers.  When she received her own diagnosis, a colleague warned her "don't tell anyone.  They won't believe you."  "I am now on the receiving end of a lack of empathy ... I am getting a taste of my own medicine, and it is leaving a very bad taste in my mouth."
She joined a support group and recounted the question she asked when she was diagnosed.  The group leader said "I bet you believe in it now!"  "The group laughs with understanding and compassion.  I am accepted -- and humbled -- by the experience."
"I ... had to come face-to-face with the harsh judgments and stereotyping by my peers, fellow registered nurses.  I am now a patient on the other side of the fence."
In the second article, she quotes a nurse "People who think they have fibromyalgia, I lump into the same group of people who believe they have been abducted by aliens."  Other nurses, who had friends and family members with fibromyalgia, admitted they only acknowledged it was real when they saw "a go-getter" get sick.
"I believe registered nurses have a duty to stay well-informed and to be able to pass on unbiased and objective information.  We have a duty to be non-judgmental and open-minded, and to act from a place of informed empathy.  My interviews indicate that many nurses fall below this ideal..."
As do many doctors.  They are completely unaware of any of the scads of medical evidence proving that CFS and fibromyalgia have biological underpinnings, and disparage what the patients tell them.  Some even verbally abuse the patients when they are unable to return to work.
Step One is well underway -- we have the research to prove we're not lazy, crazy or faking.  Now it's time for Step Two, making sure that research is disseminated out of the labs and into the doctors' offices.  It will take a massive re-education campaign, and some doctors will never change their minds unless and until they see someone close to them, someone they know for a fact is not simply "too lazy to work".  There are plenty of stories about doctors who were unbelievers until they, themselves, were struck down by the illnesses they'd disparaged as hokum.
Because the doctors I saw did not meet me until after I got sick, it was easy for them to convince themselves that I had to be lying about all the things I said I'd accomplished and my desire to go back to work.  They wanted to see a woman too lazy to exercise and looking for any excuse to quit her job, and discarded any evidence to the contrary.  But if you talk to the doctors I went to school with, they will unilaterally tell you that I was very active and an overachiever, and definitely was not the sort of person who wanted to lie on the couch watching TV the rest of my life. 
Unfortunately, the doctors who know me that well are in the wrong state, and the wrong specialties, to do me any good, other than to serve as emotional support when their colleagues call me a liar simply because I don't say what they want to hear, and refuse to change my story when they accuse me of lying for saying that I would love to be able to exercise again and that I would much rather be at work than at home.
I was not abducted by aliens.  My body was abducted by a virus.  Had my friend taken me to the ER that weekend, there would have been no arguing about the validity of my illness -- I had objective symptoms including vomiting, diarrhea and a 105 fever.  But it looked like the flu, he knew the home remedies for the flu, so he saw no point in running up a huge ER bill just to be told what he already knew to do.  Unfortunately, as rational as it sounds to say that I had a virus, there are still doctors who'd be more convinced by an alien abduction theory, because there is now no proof other than my word and his, that I had that virus 22 years ago.


Awareness Day Walk/Candlelight Vigil

Tonight, an intrepid group of CFS and fibromyalgia patients, despite their pain and fatigue, walked, limped, crutched and rolled around the California state capitol, representing the 10 million people with fibromyalgia and at least 1 million Americans with CFS.  As they walked, they read out the names of 800 fellow patients from around the world who had e-mailed that they were unable to attend but were with us in spirit.  Hundreds of lit candles were placed on the steps of the state capitol, representing the many patients who could not attend.
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! 
Lynne Matellana, of National Fibromyalgia Association, revealed to a round of cheers that the government has allocated money for fibromyalgia research, but that we have to keep after Congress to make sure that it is spent, and is spent properly.  Lynne advises that photos and videos will be available at the website tomorrow.


Invest in your future

I often hear members of my support group say a suggested self-help method is "too expensive".  I'll agree, some things are rather expensive for people on Disability, but you have to do a cost-benefit analysis, rather than just look at the size of the number you're about to put on your credit card.
For example, there was no question that my old mattress needed to be replaced, but what finally convinced me to try the Sleep Number bed was the information that I could use it for 30 nights, and if I didn't like it, return it and owe only the delivery fee.  I'm glad I took the gamble -- after buying it, I was able to work enough additional hours that the bed paid for itself in the first year!
Something that costs $100 a month might look like a huge chunk of your SSDI check, but what if that expenditure produced enough improvement that you could trade your SSDI check for a full-time paycheck?  Even Bernie Madoff would be impressed by a $100 investment that returned $2500!


Today is CFS/Fibromyalgia Awareness Day!

The primary thing that patients want the world to know on Awareness Day is that CFS is a physical, not psychological, condition.
This is not merely a situation in which patients want to avoid the stigma of mental illness, but that thousands upon thousands of research studies have proven that there are demonstrable biological abnormalities, and that those physical problems are very similar to those in more recognized and more respected illnesses such as AIDS, MS and polio.
Counseling and anti-depressants have repeatedly been proven useless against CFS.  It is not, by any stretch of the imagination, a mental illness.  (Although the struggle to cope with major lifestyle changes and ongoing disbelief/derision for your debilitating symptoms can lead to secondary depression, just as many terminal cancer patients become depressed after receiving their diagnosis.)
Most CFS patients can trace their problems back to a specific infectious event.  One day they were happy and healthy, the next day they had a bug of some sort, and they were never the same again.  Mine started with a 105 fever.  I defy anyone to point to a purely psychiatric condition that starts with a prolonged high fever! 
Years later, I learned that the suspect in both CFS and polio was an enterovirus (a stomach bug), and mine definitely was that.  I had all the messy symptoms that come with stomach flu, but the 105 fever was higher than would be expected with garden-variety flu; this was something else, something stronger.
Unfortunately, because it looks so much like any other tummy flu when it happens, most patients don't see a doctor until months later, when it's too late to test for a virus; at that point, all they can say is that at some point in the past you had Virus X, but not whether that's the one you had that started the cascade of other problems that have brought you to the doctor.
What patients really want on Awareness Day is a little respect.  Stop attributing our symptoms to psychological problems or "inability to deal with stress" or laziness.  Stop blaming us for getting sick.  Stop blaming us for staying sick.
I'm still sick because I was refused the medication that could have gotten me back to work – I'd always gone back to work in the past!  Yet, when I told the doctor this was not depression, and that anti-depressants wouldn't help me, he refused to listen.  The real reason I'm disabled is because his ego was more important to him than my well-being; having decided I was simply depressed because I was a middle-aged divorcee, he would not order any medication or testing that would prove that he was wrong and I was right.
Millions of other patients are still sick because no one has found the magic pill that will cure us.  The blame for that needs to be laid at the feet of the pharmaceutical industry, not the patients – most of us lack the technical skills to do that research and have to rely on someone else to do it for us.  If I'd had the ability to do so, I would've done it – not 9 years ago when I finally got so sick that I lost my job, but 21 years ago when I was diagnosed, so that I wouldn't have had to struggle so hard the next 12 years to continue working.


Sunday, May 10, 2009

I'M FINE (what it really means)

Most people don't really want to hear the truth when they ask "how are you?" so you come up with a vague answer like "OK" or "pretty well, considering" or "better than 2 years ago".
I've reached the point where I can say "fine" most days and mean it.  Please don't think that means I'm 100% back to health and will be returning to my full-time career as soon as I can find a job.
Here's what I really mean:
Having finally gotten the right pills that allow me to sleep more than an hour or two at a time, I now wake up feeling like a normal person.  This is a vast improvement over years of feeling as tired as when I went to bed because I'd gotten little or no sleep, and what sleep I'd gotten was poor quality.
Don't be confused into thinking that because I feel normal when I wake up, I remain normal all day. On bad days, a mere 5 minutes of activity is enough to make me stop feeling normal and remind me that I'm still sick.
Getting 4-6 hours of sleep most nights (as opposed to the good old days when I was lucky to get 2) has increased the amount of daily activity I am capable of doing, so that it is now possible to stay within my limits, as opposed to when I was getting almost no sleep and even 3 trips a day to the kitchen for meals was exceeding the amount of energy I had available and thus making me worse on a daily basis.
If you see me out and about, that means it's a good day.  I don't always feel that good.  A few weeks ago, we spent several hours running errands, just to get everything done while the weather was nice; the next day, I looked and felt sick.  For logical reasons, you aren't going to see me out and about on bad days, so unless you come to my house, you will never see what a bad day looks like.  They are still there, you just don't see them.
As long as I stay within my Daily Activity Limit, and practice pacing (work a little, rest a little interspersed throughout the day), I continue to feel pretty good.  I don't feel as good when something causes me to exceed my Daily Activity Limit.  By no means can I match the total activity of a healthy person; that means that although I look good and say I feel good, I'm still not employable.
At this point, I am able to live a relatively normal lifestyle; I just can't accomplish as much in a day as someone with full stamina.  But I am able to run errands, take care of household chores, cook, do a little light cleaning (some tasks are physically beyond me), watch TV, knit, read books...  I may spend a lot of time "on" the bed, because then it's easier to lie down when I need to, but I'm no longer spending most of my time "in bed", too exhausted and/or in too much pain to concentrate on a book or a movie.
While, certainly, there are some CFS patients who are so sick they are entirely bedridden, for most of us, we are at least semi-functional.  Being bedridden is not, and never has been, one of the official diagnostic criteria, though there have always been doctors who refuse to diagnose CFS unless your husband has to carry you into the office because you're too weak to walk (and some who won't even diagnose it then!).
I feel good because I'm able to stop and lie down when I hit my limit.  As long as I pay attention to my limits, take naps after overdoing, etc., I can say I feel "fine", but "fine" should not be confused with "well".