Friday, June 6, 2008

Making Extra Money

I've received an e-mail that some of my creations have sold, so I'll have a little check coming in soon.  :)

If you'd like to buy something I've made, contact and ask what they have in stock.  If you're in the Indiana area, stop by in person to browse.

It's the perfect "job" for a disabled person: you work on your own schedule, from your own home, and don't even have to rely on being well enough to staff a booth at a craft fair on a specific day.  If you have something that meets the criteria of handmade in the USA that you'd like to sell, contact them and tell them I referred you.  I've known the owner for about 20 years, and I'm comfortable letting her have several hundred dollars of my stuff at any given time.

They plan to have a booth at the Gay Pride Festival next month, so if you have something you think is particularly appropriate for that event, send photos/scans/description.

The Slow Movement

'Slow movement' wants you to ease up, chill out
By John Blake
(CNN) -- Edgar S. Cahn is fighting for your right to be lazy.
The slow movement backs random acts of slowness, such as turning off the BlackBerry or spending time with friends.
Other activists might devote their time to reversing global warming or saving the whales. But the 73-year-old attorney is battling to preserve a commodity that he says is more fragile than the environment and more precious than oil -- time.
Cahn is a leader in the "slow movement," a national campaign that claims that speed kills. Its leaders say that Americans are so starved for time, our need for speed is destroying our health, families and communities.
They say we live in a culture in which being overworked has become a status symbol. Cahn created TimeBanks USA, a nonprofit group that treats time as money, to put the brakes on people's high-velocity lifestyles.
TimeBanks members barter blocks of time known as "time dollars." One member may, for example, buy groceries for a stranger in exchange for someone else walking their dog.
"Time is the most precious thing we have," he says. "Every hour you live, you never get back."
Slow movement members don't fit one profile. They're journalists, lawyers, chefs, farmers. Yet they cite the same factors for our inability to slow down: longer work hours, longer commutes and technological advances like BlackBerrys that keep many employees chained to work.
They suggest people combat "time famine" by practicing random acts of slowness: turning off the BlackBerry, cooking unhurried meals with friends, cultivating a garden and taking long walks.
Some have even formed groups to encourage individuals and businesses to save time. They include:
• The Long Now Foundation, a group based in San Francisco, California, was established to provide an alternative to a "faster/cheaper" mind set and promote "slower/better" thinking.
• Take Back Your Time, a nonprofit group based in Seattle, Washington, is leading a national campaign to address time famine by using conferences and teach-ins to wean people off of their need to be busy.
• Slow Food USA is a nonprofit group that offers an alternative to fast-food eating and industrial food production. It encourages members to plan communal meals and use farmer's markets. It has at least 80,000 members in 100 countries.
Cahn, from TimeBanks USA, says he came up with the idea for time banks in 1980 after he suffered a massive heart attack from a frenzied lifestyle that included being a speech writer and the founder of a national legal services program and a law school.
Time, he thought as he recovered, doesn't have any monetary value attached to it. One can't deposit a block of time in the bank or buy a loaf of bread with it. Yet it's essential to have enough of it to live well and make democracy work, he says.
"The market doesn't value what it takes to build community or democracy or to fight for social justice," he says.
The slow movement is not just content with saving people time, though. It's ultimately about shifting people's values, Cahn says.
"The movement is about how we value things other than how fast we can consume and how much we can accumulate," he says.
It's also about changing public policy, other slow movement leaders say.
John de Graaf, national coordinator for Take Back Your Time, says the nonprofit group is calling for legislation guaranteeing at least three weeks of paid annual vacation for all workers, paid leave for all new parents and workplace rules limiting the amount of compulsory overtime.
Companies will actually profit more if they don't overwork employees because they will become healthier and more productive, he says. He points to the robust economies of Western European countries, which treat their workers to more vacation time and shorter work weeks than their counterparts in the United States.

"If you live in Europe after the age of 50, you're only half as likely to develop chronic illnesses like heart disease and high blood pressure as those in the U.S.," he says. "People exercise more, they eat less food and they sleep more."
Slowing down won't only save lives; it'll save democracy, de Graaf says. His group is also pushing for laws that allow people to have election days off.
Democracy can't exist without informed citizens, he says. People need time to pay attention to the news, attend city council meetings and keep elected official accountable.
He hopes both presidential candidates will address the issue of time famine. People can't keep living nonstop lives, he says. Something has to give.
"When you come to the edge of a cliff, the solution is not to run faster," he says. "We have to step back."
* * *
This is a lesson that CFS patients are taught whether they want to learn it or not!
Too many of us, when we start experiencing failing health do try to "run faster", which simply runs us down faster.  You need to slow down.  You need to rest.  Don't wait for a doctor to give you permission to rest, do it for yourself.  Too many doctors confuse CFS (which is helped by doing less) with depression (which is helped by doing more) -- by the time you find a doctor who knows that he needs to give you permission to take to your bed instead of pushing you to take up exercise and go back to work, it may be too late, and you'll never recover.
It's entirely possible that the explosion in CFS cases in the past 25 years has something to do with the mentality that "busy is good".  Where employers once encouraged people to not come back to work until they were well and not contagious, now people are pressured to go back to work after one day of sick leave, and some employers don't even want you to take that one day off.  Would I have CFS if I had taken another week off in 1987 to fully recuperate from the virus?  At this point, no one can say for sure; maybe future research will give us the answer.
But I can tell you that ignoring my body's signals in 1999-2000 has resulted in an enforced slowdown.  There have been days I could not even get out of bed without falling to the floor because I humored a doctor who ordered me to do more; I had to prove to him empirically that daily exercise did not make me well, it made me even worse.
Slowing down is a good idea for everyone, but especially for CFS patients.  Learn to stop and smell the roses, to lie on the couch enjoying the daily sounds of your neighborhood.  You'll feel better because of it. 

Wednesday, June 4, 2008

Karma Strikes Back

Patients have often said that the only way to convince some people of the reality of CFS is for them or a loved one to get it so that they can see first-hand what it’s like. Even without the disparaging remarks and accusations of lying, it’s not a disease you’d wish on your worst enemy, because it’s so painful and debilitating.

Here’s an apology I received recently from someone who for several years gave me untold grief over my attempts to educate people to the truth about CFS. I’ve edited out some identifying information; with all she’s going through at the moment, she doesn’t need for people to be contacting her and harassing her, but the original was forwarded to JoAnn and Nathalie, and they can verify that I haven’t changed any words, or the meaning of the note, simply removed a few sentences, and that they received it with the headers attached to verify that it did, in fact, come from the woman in question.

Karma came back and bit her in the butt.

Dear Karen,

It has finally happened to me....I had a major flare. This flare was so bad that all this weekend I barely had the energy to get off the couch and go to the bathroom. I didn't shower for two days, cook, or do anything but sleep and sleep and sleep for days.

I remember giving you so much shit when you made the same claim and now it has happened to me and the very first person I thought about was you. If this is how you are much of the time, oh my good God!

As a fellow human being I felt obligated to at least make a humble attempt of an apology to you. It will probably mean nothing to you coming from me, but still I felt it was the right thing to do. ...

So, in the attempt at making this apology. I hope you will at least feel validated, if nothing else. ...

If you do or don't accept my apology, I have no expectations at all. I am not trying to disrupt you or your life. I couldn't go through what I just went through for the last several days without making a definitive note of the harsh and ugly way I treated you when you reported the very same thing.

Name Withheld

Another person in the same group argued that CFS could not be as bad as I said, because she knew someone with a CFS diagnosis who was able to work full-time ... oblivious to the fact that I also worked full-time for 12 years after diagnosis until I finally got so sick that I couldn’t continue. (I have always found it amusing that people who don’t work, who haven’t worked in years, accuse me of being too lazy to work when I’m still working despite the difficulties.)

As Brian pointed out, some people with polio can work, some can’t. I know several people who had polio as children: one is in a wheelchair with no use of her legs, one walks with braces and a clearly abnormal gait, and one walks without so much as a noticeable limp and had a physically-demanding job for many years. It’s the same with CFS: some people have a relatively mild case, some are moderate, and some are bedridden, and as time goes on, mild cases can get worse.

In 1987, I was able to work full-time and clean a small apartment, but could not keep up my home business or my social life, most non-work hours had to be spent resting in order to make it through the next day at work. By 2000, I was no longer able to work full-time, even after jettisoning the cooking/cleaning/laundry. A few months later, I wasn’t even able to sit up without feeling like I was going to pass out due to the effects on my Central Nervous System. I got steadily worse because I wasn’t getting appropriate medication; when I finally got the right pills, I slowly started to improve.

And let’s not overlook the fact that just because someone has a CFS diagnosis does not mean that they really have CFS. Some people are wrongly diagnosed with CFS by doctors who don’t realize that it requires more symptoms than mere "chronic fatigue" (things like swollen glands, fever, exercise intolerance, etc.). Without the 24+ hours of post-exertional malaise that’s a hallmark of CFS, they can’t be used as examples of what True CFS patients could do if they tried harder, because they don’t have CFS.

It’s good that I have received one apology, but there are still many people who owe me one for their false accusations.

The one thing to remember when you’re making disparaging remarks about CFS is that there’s no vaccine to prevent it. Some day you, too, might wake up with the flu that never goes away, and learn the hard way that CFS – also known as Myalgic Encephalomyelitis – is neither fun nor funny.

A Proposal that may or may not help pain patients

Apparently, it has been proposed to have a secure online database for doctors and pharmacists only, so that they can check whether patients are making the rounds of doctors getting multiple prescriptions for "scheduled drugs" (i.e., pain pills).

I'm hoping that this will make it a little easier for those of us with legitimate pain to get a legitimate prescription for the pills we need, since the doctor can check and verify that we're not abusing the pills, this is the only prescription for them that we have.

As has been brought up before by someone who worked in a medical office, and is worth repeating here, if your doctor tries to tell you he won't give you narcotics because it requires a lot of extra paperwork, he's lying.  That longer form was done away with.  The only "paperwork" required is that he has to use a special three-copy prescription pad instead of the normal single-copy one.  He writes the exact same information on it, just that there are extra copies for tracking the prescription. 

The pain of fibromyalgia is neurological pain.  NSAIDs are for inflammatory pain.  They won't work.  They're for a different type of pain.  The only thing that works on neurological pain is narcotics/opioids.  Following the rheumatologist's instructions to take Advil gave me an ulcer, but no pain relief; even taken by the handful, Advil did nothing for me, because I didn't need an anti-inflammatory.  (I keep it around for when my arthritis is acting up in winter, but easing the pain in my hands and knees doesn't help the pain in the rest of my body.)

Tramadol is so mild that it's sold over-the-counter in Canada.  For me, it's usually all I need.  If I combine it with a heating pad or a hot bath, I'm functional.  It's a good compromise between my need for pain relief and my doctor's preference for using the lowest-impact treatment, and since I work at home, I can use a heating pad all day or take frequent dips in a hot bath, which I couldn't at an office.

Tuesday, June 3, 2008

CFS Recovery Stories OR There ain't no such thing as "cured"

I was one of the success stories.  For 12 years after diagnosis, I worked full-time.  I had to pace myself outside of work, spend almost all of my non-work hours resting, but I kept working.
And in December 1999, I got a weeklong sinus headache.  Followed by the flu.  And because I had gotten cocky about being able to work despite the CFS, I kept working instead of taking a few days off to get well.
Big mistake.
The sinus+flu combination had taxed my already-fragile immune system, and right at the beginning of flu season when I needed it most.  My health continued downhill through January 2000.  I finally took a sick day in February, when I literally could not get out of bed, but by then it was too late.  My employer was already unhappy with my rapidly-declining productivity and my health was already too far gone, I was fired.  Under ADA, you are not entitled to a job that you cannot perform, so they were legally entitled to do that.
Still foolishly thinking that this was "just the flu", I assumed that I could get back to work if I spent the next week or so sleeping.  Wrong!  I felt better after a week in bed, but as soon as I got up and did anything, I felt worse.
The first doctor I saw was brutally honest, "I don't know much about CFS, and I'm not interested in learning"; he prescribed something that I had already been told *not* to take because of a bad reaction to a related drug.  The second doctor was convinced that all divorced women are depressed alimony-seekers, and while he told me to my face "I want to help you" what he really did was fill my medical records with false statements to lead people to the conclusion that I have chronic depression and refused anti-depressants because I don't want to get well and have to return to work.  When I finally got to another specialist (more than a year after the first one), first he gave me a prescription for something that I already knew didn't work for me, and then gave me a prescription for the same thing as the first doctor, the one I'd been told *not* to take.  When I showed that prescription to a doctor I trust, he asked point-blank "are they trying to kill you?", and repeated the warning that I was not to take anything in that family of drugs, ever -- "if you want to try it, check into a hospital first".  My offer to have a nurse-friend spend the night with me wasn't good enough: yes, she would be able to call 911 if I had another bad reaction, but she wouldn't have the necessary medical equipment to save my life if this reaction was worse than the last one (as repeat reactions often are).  He wanted certain life-support-type machines available within seconds, not at a hospital 6 blocks away.
Since it took years of begging doctors for what I knew to be the right pills, and having them paternalistically pat me on the head with the assertion that what they wanted to prescribe was better for me, I continued to go downhill.  To the point that just walking to the kitchen 3x a day to grab a quick meal was too much, and I had to stash bottled water and cereal bars under the bed so I could stay within my physical exertion limits and at least hold steady instead of continuing to deteriorate.
It wasn't till I got a doctor to listen to me that what I needed was sleeping pills, not anti-depressants, that things turned around.  A couple months after going on the sleeping pills, I started to run a 101 fever.  When it hadn't gone away after a week, I consulted a nurse-friend, who chortled "Congratulations, you have a functioning immune system again!"  The fever stuck around for six months, and when it finally broke, I felt better than I had in ages: my immune system finally had the upper hand over the virus again.  But, as one specialist later told me, by then the physical damage was done; I'd been allowed to deteriorate too far by doctors who thought CFS could be treated with anti-depessants (they've repeatedly been proven useless against CFS), and I would *never* be able to return to work full-time.
I'm determined to prove him wrong, but it will take time.  CFS expert Dr. Murphree ( tells me that for every year of deterioration, you need at least one year of recuperation.  The odds of recovery are best in the first five years, and I was almost exactly five years from the start of the relapse when I saw Dr. Murphree.  Maybe the year on the experimental sleeping pills bought me some time, maybe not, since I spent most of that year sicker than a dog with the fever. 
I can now (most of the time) go out for lunch with a friend without it costing me 3 days of resting up before and 3 days of resting up after, but I still feel it if I try to go out more than 2 hours at a time, or more than twice a week.
The moral of this story is: Don't ever think you're cured and can do whatever you want. 
Even when you think you're in remission, you will never again be able to push yourself as hard as you did pre-CFS, because the threat of a relapse is always lurking just around the corner. It's not an irrational phobia, it's a very real threat.  Don't let anyone tell you that your problem is "fear of exercise" or "fear of work" or "fear of fear" ... there's a virus in your system that is just waiting for another illness to tax your immune system enough for the virus to get the upper hand again.  Taking preventive measures to prevent that is not "fear", it's good old common sense.  Something a lot of the CFS detractors and psychologizers seem to lack.

Responses to NICE Guidelines

Responses to the NICE Guidelines for M.E. and CFS By Patient Organizations In the U.K.

Presented to the
Chronic Fatigue Syndrome Advisory Committee
Department of Health and Human Services
U.S. Federal Government
Washington, D.C.
May 6, 2008

Mary M. Schweitzer, Ph.D.

Recently, the U.S. Centers for Disease Control and
Prevention (CDC) have added a new item to their
website for medical professionals. The addition was
made on the page marked "Treatment Options and
Management Plans," at the following website:

The paragraph praises the "NICE" guidelines and
offers links to the British public health website where
they can be found.

NICE Treatment Guidelines -- NEW!

The National Institute for Health and Clinical
Excellence in the UK developed a new guideline to
improve the diagnosis and management of chronic
fatigue syndrome (CFS) and myalgic encephalo-
myelitis (or encephalopathy) (ME) in adults and
children. The guideline provides recommendations to
help diagnose and manage the condition, aimed at
maintaining, and if possible, gradually extending an
individual's physical capacity.

It also highlights the importance of shared
decision-making between health professionals and
people with CFS/ME, providing therapies suitable to
the individual, and the individual's right to refuse or
withdraw from any part of their treatment plan
without it affecting future care. Read more about the
guidelines :

or download the entire document.

The statement from NHS in Britain suggests that the
guidelines were created and are being implemented
with the cooperation of patients. Nothing could be
further from the truth. In this packet you will find
formal responses from a number of British patient
organizations asking for changes that have yet to
take place.

The greatest concern in Britain - and on the
Continent, where other countries with socialized
medicine are trying to adopt the NICE guidelines - is
that despite the fact that European nations are using
ICD-10, where both M.E. and CFS are coded in the
chapter on neurology, not psychology, the guidelines
have not directed anyone towards a neurological
. Rather, they have been used to emphasize
the favorite programs of British psychiatrists,
Cognitive Behaviour Therapy (CBT) and Graded
Exercise Therapy (GET). You will read about the
problems with these programs in the patient

If the U.S. is going to tacitly adopt, or praise, or
encourage insurance companies to work with,
guidelines created for socialized medicine, the public
should at least be made aware of it. Very few
patients with a "CFS" diagnosis ever get approved for
disability in the United States; consequently, very
few are on Medicare, our own public health.
consequences of guidelines suggested by the CDC
are felt in the private sector, where patients may be
denied private disability, or reimbursement for
testing that the CDC has insisted is irrelevant for the
disease. Please read these statements.

Thank you.


The packet contained the following:

1. The summary presentation to the Health Select
     Committee on NICE, signed by THE M.E.
     CONSORTIUM (NICE stakeholder-ME/CFS
     Guideline, November 2006), SOUTH WEST
     SUPPORT GROUP for young people with long term
     illnesses and their parents, M.E.POSITIVE -EAST

2. The Doris Jones "Executive Summary" of March

3. Response from the 25% group, from their website

4. Simon Lawrence's response, from the 25% website

5. Charles Shepherd's response

6. A statement by Jane Colby about how the NICE
     guidelines are being used against students with

6. The British Psychological Society critique

7. The letter from Malcolm Hooper, Eileen Marshall,
     and Margaret Williams to the BJM

8. NICE guidelines: Garbage In, Gabage Out, by
     Margaret Wiliams

9. Deliberate Deceit or Inexcusable Ignorance, by
     Margaret Williams

Mary Schweitzer

* * *

Again, many thanks to Mary for taking the laboring oar and attending these meetings at great cost to her own health.

Monday, June 2, 2008

Sleep and CFS

Sleep structure and sleepiness in chronic fatigue syndrome with or
without co-existing fibromyalgia.

Journal: Arthritis Res Ther. 2008 May 12;10(3):R56 [Epub ahead of print]

Authors: Togo F [1,3] Natelson BH [1], Cherniack NS [2], Fitzgibbons
J [1], Garcon C [1], Rapoport DM [4]

Pain & Fatigue Study Center, Departments of Neurosciences [1] and
Medicine [2],
UMDNJ-New Jersey Medical School, Newark NJ 07103, USA,
Department of Work Stress Control, Japan National Institute of
Occupational Safety and
Health [3], Kawasaki, 214-8585, Japan, and
Department of Medicine, Division of Pulmonary and Critical Care
Medicine [4], NYU School
of Medicine, New York NY 10016, USA

NLM Citation: PMID: 18474105

INTRODUCTION: We evaluated polysomnograms of chronic fatigue syndrome
(CFS) patients with and without fibromyalgia to determine if patients
in either group had elevated rates of sleep disturbed breathing
(obstructive sleep apnea or upper airway resistance syndrome) or
periodic leg movement disorder. We also determined whether feelings
of unrefreshing sleep were associated with differences in sleep
architecture from normal.

METHODS: We compared sleep structures and subjective scores on visual
analog scales for sleepiness and fatigue in CFS patients with or
without co-existing fibromyalgia (n = 12 and 14, respectively) to 26
healthy subjects; none had current major depressive disorder, and all
were studied at the same menstrual phase.

RESULTS: CFS patients had significant differences in polysomnograpic findings from healthy controls and felt sleepier and more fatigued than controls after a night's sleep. CFS patients as a group had less total sleep time, lower sleep efficiency and less REM sleep than controls. A possible explanation for the unrefreshing quality of
sleep in CFS patients was revealed by stratification of patients into
those who reported more or less sleepiness after a night's sleep (AM
sleepier or less sleepy respectively). Those in the sleepier group
reported that sleep did not improve their symptoms and had poorer
sleep efficiencies and shorter runs of sleep than both controls and
patients in the less sleepy group; patients in the less sleepy group
reported reduced fatigue and pain after sleep and had relatively
normal sleep structures. This difference in sleep effects was
primarily due to a decrease in the length of periods of uninterrupted
sleep in the AM sleepier group.

CONCLUSIONS: CFS patients had significant differences in polysomnograpic findings from healthy controls and felt sleepier and more fatigued than controls after a night's sleep. This difference was due to neither diagnosable sleep disorders nor co-existing fibromyalgia, but primarily due to a decrease in the length of periods of uninterrupted sleep in the patients with more sleepiness in the morning than on the night before. This sleep disruption may explain the overwhelming fatigue, report of unrefreshing sleep, and pain in this subgroup of patients.

[Note: This is an Open Access article. The full text in
PDF is available for free at  ]

* * *

My first specialist told me the first step in treating CFS should be to improve the QUALITY of sleep, which would often reduce the quantity.  You need deep Stage 4 sleep to heal, and most CFS patients drift in and out of light Stage 1 sleep without ever getting to Stage 4.

Some of the older sleeping pills did nothing but render you unconscious so you wouldn't spend the night stressing over how you were going to function at work the next day on no sleep.  Some of fhe newer sleeping pills will actually help you get that Stage 4 healing sleep -- those are preferable to the mere "knock-out drops".

Some doctors don't recognize the difference between quality and quantity, and therefore think that a sleeping pill is unnecessary because you're already spending a lot of time in bed.  They need to be educated that 20 hours of poor-quality sleep is not as good as 8 hours of good sleep, and therefore, you need the newer pills that will achieve the deep sleep that you aren't getting in that 20 hours.

Only when you are getting the deep sleep can your body start to heal itself.  When I have effective sleeping pills, I sleep a reasonable 8 hours and my health starts to improve.  When I don't have effective sleeping pills, I sleep 2-3 hours and my health goes back downhill.  Getting 6-8 hours of sleep per night reduced a lot of symptoms; what used tobe a daily problem is now an annoyance only a few days a week.