Sunday, December 31, 2006

Happy New Year!

In some parts of the world, it's already 2007, but it'll be Old Year here for nearly 15 more hours.

Just like Christmas, a CFSer's New Year's celebration requires some adjustments from the norm.  My "party" involves just one good friend, not a houseful, and I'll spend most of the party lying on the couch. 

We will, every hour on the hour, switch over to CNN to celebrate with another time zone and, frankly, will probably celebrate for the last time with my parents in New York (which is 9 PM my time).

We have a variety of cheese and crackers, chips and guacamole, baby carrots and dip, and a lasagne.  Although I do have a small bottle of champagne in the fridge, which I got as a gift a couple years ago, more likely we'll be popping a bottle of sparkling apple juice at whatever time we decree it to be "midnight".

For New Year's Day dinner, there's already a pot roast in the crockpot (I find it takes 2 days for it to reach perfection). 

Thursday, December 28, 2006

And then the crash

Although I tried not to overdo for the holidays, I apparently miscalculated.  I woke up this morning and it was a good thing that I'd fallen asleep on the couch last night, because I needed to use the back of the couch to pull myself to a sitting position.  Not sure how I would've gotten up if I'd made it to the bed last night.

Getting to the kitchen for breakfast was a long, slow, shuffling ordeal.  My leg muscles were working no better than my trunk muscles.

Tried to read, but my eye muscles weren't working well enough to focus on the page and I had to give up.

On days like this, I'd love to have a muscle biopsy to prove there's something seriously wrong, but since I get no government assistance of any kind, I'm not sure how I'd pay for it.

I did manage to limp back to the kitchen to heat a can of soup for lunch, but I'm not sure I'll make it a third time for dinner.

Tuesday, December 26, 2006

Post-Christmas Shopping

When the rest of the county went to the mall looking for bargains and returning gifts, we went for groceries.  Smart & Final was pretty well deserted, which is why I figured it was safe to venture in there.

Got a package of hamburger, so I can make some casseroles, some chips and sparkling apple juice for New Year's, and did get some half-price Christmas candy.  :)

Our New Year's party tends to begin early -- when it's midnight in London.  Every hour on the hour, we toast again as CNN celebrates in another time zone.  More often than not, we celebrate with my parents in NY (which is 9 PM here) and call it a day.

Having been out for a short time this afternoon, I came home and collapsed on the couch, then fell asleep.  Woke up in such horrendous pain that I nearly passed out from it.  Hours later, I'm still considering whether I have it in me to get up and reheat some leftovers for dinner, or if "dinner" is going to be a package of peanut butter crackers that I keep near the couch for the nights that I can't make it as far as the kitchen. 

That's the reality of going shopping with CFS -- it takes a lot out of you and leaves you basically useless the rest of the day.


Sunday, December 24, 2006

Christmas with CFS

Merry Christmas to all my readers!
Christmas with CFS means something very different from what most people experience.
With the immune dysfunction, I avoid crowds so I won't be sick for the holiday -- it's not uncommon for a simple case of flu to stick around for 3 weeks.  So, all the Christmas shopping has to be done early -- before the stores get crowded, and before flu season starts.  For the same reason, I can't go to church on Christmas -- other people will force themselves from their sickbed "because it's Christmas", and I wind up paying the price for their decision.
With the orthostatic intolerance, I can't be on my feet for hours baking cookies.  The only thing I bake is German Stollen.  It's a yeast dough, so you mix it up, and go lie down for 20 minutes while it rises.  You pay attention to it for a few minutes, and go lie down for 30 minutes while it rises again.  Although the process takes a total of 3 hours from start to finish, I'm only actually working on it for about 15 minutes.
I also can't spend a lot of time upright decorating the tree, or stand on a chair to put the tree topper on.  I'm down from a 7.5 foot tree to a four-footer.  This year, it has a whopping 12 ornaments on it, and someone else put the lights on.  In previous years, I've put the tree away fully-decorated, so that the following year it takes me all of 3 minutes to pull it out of the box and set it up.
I also don't have it in me to put together a big holiday dinner.  For many years already, a friend and I have gone out for Chinese food the night before, and I bring home a variety of appetizers to reheat throughout the day on Christmas.  That's the big celebratory dinner these days.  I don't even cook for myself on Christmas Day, much less for family and friends any more.
I have to skip neighborhood holiday parties because by 7 PM when the parties start, I'm horizontal and too exhausted to get myself there.
Yes, it's Christmas at my house, just like it is at yours, but my Christmas isn't just like yours.  My Christmas is spent mostly lying on the couch listening to music on the radio -- not cooking or socializing or travelling to visit relatives.

Sunday, December 17, 2006

It Sounds So Simple

It sounds so simple when people say it.  "Just do the housework yourself" or "just get a job".

But it's not that simple.  A few weeks after the one-year warranty ran out, my new dishwasher completely stopped functioning.  As in, the water doesn't get anywhere near the dishes; they don't even get damp.  OK, so you do the dishes by hand, no big deal.

Except it IS a big deal.  I was making a concerted effort to stand upright, not bent over, and nonetheless, after washing just a few dishes, I had back spasms.  I was nowhere near done, so I tried to ignore them.  After a few more dishes (hadn't even gotten to the pots yet!), the pain was threatening to make me pass out.  Back to the bed for the rest of the day till the spasms finally abated around midnight.

On several occasions over the past few years, I've attempted to do some volunteer office work.  Same thing.  After sitting upright in a chair for about an hour, the back spasms start, and if I try to tough it out, they get worse.  And that's if I don't get lightheaded first, from being upright. (Dr. Cheney, Dr. Lerner and Dr. Peckerman attribute this to a post-viral heart defect and recommend that CFS patients spend most of their time horizontal.)

If you know of a way to do housework or an office job lying down, let me know.  Otherwise, the simple suggestion of doing these things is something my body won't let me follow through on.


Friday, December 15, 2006

The Reality about Charity

Darcy writes: I don't know why they think everyone with a chronic illness gets all this positive attention from everyone. Most people have pretty much left me alone, not rushed to my aid.

This is another of the common misconceptions about CFS: that people are "enabling" us by providing money and help so that we can take to our beds, thus encouraging us to continue "the sick role" while we "avoid responsibility". Nothing could be further from the truth for most of us.

Certainly, there are those few who are independently wealthy who can hire a houseful of servants, but most of us don’t have that luxury. Spouses and children can’t be in 24-hour attendance; they have work or school, or may themselves have the CFS virus. And that assumes that you’re not one of the 3/4 of chronic illness patients whose spouse bails – then you have no money and no help.

One of the more tragic parts of the CFS story is the number of people who are told by the government that their friends and family should be responsible for taking care of them, but are told by friends and family that it’s the government’s job. So, they quietly fall between the cracks because they’re not well enough to waste energy being The Squeaky Wheel.

And even if you have energy, you run into bureaucracy. It took me 5 years to finally get Social Services out to evaluate me. They agreed that I needed household help, but unfortunately, the law says that if you’re under 65, you cannot get government-paid housekeeping services just on your doctor’s signature. You need a judge to declare you officially disabled. If you are able to earn a mere $850 a month, you’re considered "self-supporting" and don’t qualify for an official determination of disability, but that $850 won’t stretch to cover the barest essentials of life, much less niceties like a weekly cleaner.

Some disabled people are fortunate, in that the charity related to their disability has enough volunteers to send them help. Unfortunately, many disease charities have all to do to raise research money and don’t have volunteers to send you. You may be just as disabled as the gal down the street, but because you have "the wrong disease", you fall through the cracks and get no help, because the charity that provides her assistance only helps those with that specific disease.

There’s another myth that churches are glad to send volunteers. If you haven’t been a regular church-goer, forget it; they only help their own. And even if you have, it’s rare to get volunteers for the duration of a chronic illness. They’re good about sending help for a week or two after the birth of a baby or a surgery, but I personally don’t know anyone in any of my support groups who has gotten a commitment for years. A friend and I contacted a number of churches, and never received a response from any of them. Someone else suggested to me that the religious high schools have a community service requirement; told me to call Brother X and Sister Y and tell them that Mrs. Z had told me to call, because she was sure they would help if they knew I was referred by a student’s parent. Again, I left messages, but never received a response.

In my own case, I was always the instigator. If someone else was sick, I made sure they got cards and phone calls and visits. When I was the one who was sick, no one else picked up the slack, because it had always been "my job" to organize such things. I was too sick to do the work, and it was sort of ridiculous to send myself cards and phone myself! I phoned my friends regularly until I realized that it was entirely a one-sided effort: they never called back if I left a message and if I somehow managed to get them live, they were "too busy" to say more than Hi/Bye. The friends willing to talk longer are those who are themselves disabled, who know what it’s like to be abandoned by healthy friends when you can’t keep up.

Although it’s been suggested that my friends "no longer help me because I wore out their patience with constant demands", the fact is, none of my girlfriends did anything even at the beginning. Zero, zilch, nada. Apparently just inviting them to lunch was too much of a "selfish demand"!

Just as Darcy observes: "people have pretty much left me alone, not rushed to my aid." If I was too sick to come out and play, they weren’t going to change their plans to accommodate me. It has always been made clear to me that if I could get myself over to the far end of the county to watch Johnny’s game, I was welcome to join them; if I felt up to coming along to jet-ski for 6 hours straight, I was welcome to join them. But if I didn’t feel up to doing anything other than talking, they were "too busy" to squeeze that in. I had to accommodate them, not vice versa. They don’t call to chat, they don’t drop in with casseroles, they certainly don’t shove their husbands and children aside to do my housework.

I think the myth was started by people who needed to assuage their own guilt about not helping by convincing themselves that there were lots of other people helping already, so their help wasn’t utterly necessary.

Almost every female CFS patient I know does her own housework as best she can, because there’s no help available from any source. Ironically, studies have shown that the CFS patient who receives as little as one hour a week of household help has a better chance of recovery than one who must do all the chores herself.

Monday, December 11, 2006

Article in this morning's paper

This story is taken from Sacbee / News.

Tired all the time No tests can yet detect chronic fatigue syndrome, which is probably why the medical establishment took two decades to recognize it as a serious ailment. But its victims can vouch for being ... By Dorsey Griffith - Bee Medical Writer
Published 12:00 am PST Monday, December 11, 2006

The yuppie flu. A hypochondriac's excuse. A drain on the Social Security disability system.

Chronic fatigue syndrome has been called a lot of things the past 20 years. Mostly, it has been a stepchild of an illness, maligned or misdiagnosed by doctors, pooh-poohed by employers and neglected by drug makers.

That is beginning to change. The federal government last month launched its first awareness campaign about CFS. The cause is bolstered with new research and millions in additional funds dedicated toward finding a cause and possible cure.

"This isn't hooey," said Dr. William Reeves, chief of the chronic viral diseases branch at the federal Centers for Disease Control and Prevention. "This illness ... was thought to be a bunch of upper-class, yuppie, white women who were whiners. But there is a substantial body of solid, scientific literature accumulating."

Although symptoms can vary among CFS sufferers, their illness is typically marked by aches, fatigue, memory loss and confusion, and insomnia or unsatisfying sleep.

In the parking lot of a Mercy medical building after the annual CFS support group holiday potluck, the impact of the illness was evident. As members prepared to leave, one lay prostrate in her van sound asleep, trying to muster the energy for the drive home less than 10 miles away.

Although adrenaline fuels the spirit of the group on this occasion, members describe an illness that disrupts every aspect of their lives.

"A few days ago, I felt like I had a 100-pound anvil inside me," said Suzy Parker, a former ranch hand and horse trainer from Auburn now relying on disability benefits. "We miss the mingle of a work world. This party is the highlight of my social life."

"When I wake up, I feel like I've been running a marathon," added Jennifer Cox, 29, of West Sacramento. "I feel like Jacob Marley, like I've been carrying chains all my life."

Although researchers have not pinpointed a single cause for chronic fatigue syndrome, they know that at least 1 million Americans have the illness, and that it affects men, women and to some extent children -- regardless of race, ethnicity or economic status.

"Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease," said Reeves, of the CDC. "The others will die from their diseases, but those with CFS are no less disabled."

No blood test or X-ray can detect chronic fatigue, but documented changes in the brain structure, immune system, central nervous system and genetic makeup of CFS patients provide potent clues for unraveling its mysteries.

Those afflicted with CFS are relieved to see that the medical establishment is beginning to believe that their suffering -- long thought to be imagined -- is real.

"We, as people who are at the bottom of the food chain, are at their mercy," said Roseville resident Mike Riley, who has CFS. "But it's probably the most seriously the federal government has ever taken the disease."

Health officials in the United States first took interest in the condition in 1985, after a cluster of people in Lake Tahoe's Incline Village came down with a mysterious illness that featured headaches, sore throats and prolonged fatigue.

Similar outbreaks were reported, including one in Raleigh, N.C., about the same time.

"The entire North Carolina symphony came down with a flu-like illness and several members never recovered from it," said Dr. Charles Lapp, who runs the Hunter Hopkins Center in Charlotte, a CFS clinic, and sits on the federal CFS advisory committee.

Although mononucleosis was suspected, research determined that the virus that causes mononucleosis, Epstein-Barr, was not the sole cause for the patients' long illnesses.

The CDC officially named the malady "chronic fatigue syndrome" in 1988. But the name would be little help to those affected, who continue to suffer in the absence of adequate medical care and lingering skepticism.

Frustrated by the general lack of empathy, people with chronic fatigue often resort to doing their own research on the Internet, and those desperate enough seek unproven therapies.

"I've been fired by doctors," said Arlene Rubb, a 58-year-old Rocklin woman who believes her illness was triggered by an aerobics class and made worse after a car accident in 1982. "We are too hard to treat. We don't fit in a box."

A former hiker who ran a group home and worked as a bookkeeper, Rubb is now disabled. She takes nine medications, including morphine for pain and a stimulant for energy during the day. She requires oxygen while she sleeps, which she does in a reclining chair in her living room.

Rubb has lost a lot of mobility and has limited stores of energy. She can barely walk the 50 yards between her home and mailbox. She gets exhausted just talking on the telephone; her neck muscles are so weak that her head hangs down, her chin resting on her chest.

She said she could not manage without the help of her husband of nearly 30 years, Rick Rubb, and others who shuttle her to doctor appointments and pharmacies.

"It's humiliating," she said of the debilitation which, over the years, dashed her dreams of a college education and weighed on her relationships with friends and family.

"I was always a very independent person, and I have reached the height of dependence."

Like most people with CFS, Rubb suffers mentally, too.

"I always had a good memory," she said. "I never had to study in school. Now, I won't drive at certain times. I get lost sometimes, right here in Rocklin."

Dr. Frederick Herman is a Granite Bay physician whose practice welcomed many CFS sufferers before a diving accident forced him to retire his license in early 2005. He said his own battle with fibromyalgia, a related illness, helped him understand patients such as Rubb.

"Physicians are always frustrated by illnesses they can't immediately cure," he said. "If you have an ear infection, an ingrown toenail or pneumonia, you can fix that and go on. You are never trained to just treat symptoms and be a comfort to the patient."

Part of the CDC's awareness campaign aims to change that, said Reeves, with the introduction of a CFS diagnostic tool kit and a push to get medical schools to teach the subject.

The federal government also can point to a growing body of scientific evidence to help sway physicians who still doubt the illness is real.

Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and longtime CFS researcher, cites, for example, some genetic abnormalities in people with CFS. He said he believes the illness requires a genetically vulnerable immune system which is then triggered by certain injuries or infectious agents.

"The immune system becomes engaged in a constant, months and yearslong low-grade war against this foreign infection," he said.

Reeves said the central nervous system -- the brain and spinal cord -- clearly plays a role in chronic fatigue syndrome. He said physical or emotional stress, commonly cited as a condition preceding CFS onset, activates a part of the nervous system involved in the immune system and body's use of energy.

"Do we have a rapidly increasing idea of the pathophysiology of CFS? Yes," he said. "Do we have something amenable to a curative treatment? I am hoping, but I don't have anything now."

For Arlene Rubb and others like her, that means the daily struggle will endure, and the necessary adjustments that make life bearable will continue.

"It has changed everything," she said, but as time goes by you learn how to accept it," she said. "It's the way it is."

Go to: Sacbee / Back to story

Why is this blog?

Why are we here?

There’s recently been criticism in the comments to this blog that someone came here looking for information on fibromyalgia and all she found was personal experiences. But that’s not the reason this blog is here – there are many good websites where you can find medical information about CFS/fibro.

This blog is here so that people can understand the day-to-day reality of living with these diseases, and get a better picture of what it is that we have to deal with: beyond the classic misconception that CFS is just "tired" or "lazy".

Because those of us who live with it, know that you can "tough it out" through tired. We’ve been successful hard-working people, committed athletes, even Olympians – we know about being tired and about working through it, and have done that many times.

What you cannot do is push through when you simply collapse on the floor. All of the stories I hear about people who were forced to leave their jobs contain one of two elements: either they could no longer perform their jobs because of the cognitive/memory dysfunction (an accountant who couldn’t remember how to put together a simple income statement) or because of total physical collapse – the physical inability to do the work. I physically couldn’t lift a file from the floor to my desk, or carry it to the file cabinet, or lift it into the file cabinet – muscles which a few weeks earlier were capable of moving furniture were suddenly too weakened to lift a 5-pound file without dropping it. With my shoulder locked in the down position, it was physically impossible to put anything on a shelf or use the top two drawers of the file cabinet ... the drawers where we kept the active files.

Someone with one of the "acceptable" neuromuscular diseases would get praise for having at least tried, even if they didn’t succeed. Only a CFS patient gets condemned for having failed. Somehow, the compassion that extends to other diseases doesn’t come along with CFS, even when the symptoms are similar.

This blog is here so that people can see that I *did* "get my lazy ass off the couch" to go somewhere, and had to ask a complete stranger for a ride because my legs would not support me one step further. This blog is here so that I can share the days when I walk to the kitchen to prepare lunch, and my knees buckle when I get there, leaving me to eat whatever is stored low enough that I can reach from lying on the floor, until I have enough energy to stand up again. This blog is here so that I can share the frustration of trying to put things away and dropping every single item on the floor in the process of lifting it to its destination. (And to recommend that the CFS patient give away all your glassware/china and replace it with unbreakable plastic cups and plates, so you can drop the stuff and not have to clean up shards. You also may want to get a sippy cup so that you can drop it and only have to wipe up a few drops, not the whole cup of liquid.) This blog is here so that people who assume that I’m just "too lazy to do housework" can understand that doing a single load of laundry takes all week, as the up-and-down bending triggers back spasms so severe that I have to crawl back to bed and endure the spasming pain for hours before I can undertake the next step the next day, and the entire process of doing a load of laundry puts me a week behind on the dishes and mopping.

This blog is not a cheery story of triumph over disability, because Modern Medical Science can do nothing to help me; the only pills that helped the symptom had such terrible side effects that taking the pills made me even more disabled. This is the reality of the day-to-day struggle to deal with a misunderstood disabling disease that garners no respect and little help, and, more importantly, subjects the patients to verbal abuse from people who don’t understand that "fatigue" is merely the tip of the iceberg.

Although one of the theories about CFS has been to encourage patients to just push through the fatigue (and among those who believe it is depression "exercise will give you more energy"), that’s just not the way it works. Researchers trumpeted their "proof" that CFS patients could exercise just as much as healthy controls ... until they re-examined their data and found that after four days of keeping up with the healthy people in the group, the CFS patients relapsed. They wrote a chastened letter to the journal correcting their conclusion. And, in fact, this is the anecdotal evidence in support groups, too – for 3 or 4 days, patients can push themselves to keep up with family and friends on vacation or to attend a CFS conference, but invariably, after 4 days, the patients wind up in bed, admitting that they were "running on fumes" and it was sheer willpower that kept them going on the fourth day.

Hardly the ringing endorsement of the notion that a CFS patient could keep going if they’d just push themselves a little harder. In fact, validation of what CFS patients have talked about for years – the Push/Crash Syndrome. At the beginning of the illness, every CFS patient succumbs to the temptation to push themselves to do a little more on a good day, catch up on the chores, until you learn that pushing on a good day leads to a week or two of bad days. Slow and steady is more productive in the long run than push/crash.

This blog is here to educate those who believe that a CFS patient lives a pleasant life of leisure, where the only symptom is having to regularly indulge in naps. To a busy working woman, being able to nap whenever you please sounds heavenly. Except when that busy working woman is a CFS patient who gets fired for sleeping at her desk, as many of us have.

In fact, my CFS is accompanied by flu-like symptoms ... there are times I spend the whole day in the bathroom. That’s not pleasant, and having to struggle to my feet and hurriedly scamper to the bathroom despite lightheadedness that threatens to have me faint en route certainly isn’t leisurely. Other patients (such as best-selling author Laura Hillenbrand) have constant vertigo and are therefore completely confined to bed. Trust me, it’s not as much fun as it sounds. Neither is six months with a 101 fever my idea of fun, or being able to eat only one bland food for weeks on end because everything else comes back up.

I’d trade you your job for my so-called life of leisure. I guarantee, within a week or two, you’d be begging for your health and your job back. It’s no fun having to constantly calculate "if I cook a healthy meal, I may be too exhausted to bathe" and frequently having to do without dinner because by the end of the day your hands are too weak even to get the foil wrapper off a cereal bar.

The problem is, once I have a job and health, I'm not going to be willing to give them back to you.  My goal for the past nearly-seven years was to get healthy and back to work, DESPITE uninformed doctors whose misguided treatment only made me worse.

Friday, December 8, 2006

CFS and MS

Excerpts from an article by a former physician who has M.E./CFS



By S. Anderson, M.D.

... research has found the cause of CFIDS/ME and it is the same as multiple sclerosis (M.S.)

How does one diagnose M.S.? A medical history is taken, a physical that usually produces no abnormalities that jump out at a physician, blood tests to exclude anything else it may be, neurological tests and even an MRI (magnetic resonance imaging) may be taken. In other words, it is diagnosed the same way that CFIDS/ME is! The regular blood tests come out normal. Slight neurological abnormalities may be noted such as allodynia which is sore or tender skin or Babinski's reflex.

Early signs of M.S. are often mistaken for other disorders including stress, a transient ischemic attack, a tumor, or a vitamin B-12 deficiency and misdiagnosis is common such as vasculitis (inflammation of the blood vessels), Lupus or Lyme Disease. Indeed, these are all common misdiagnoses found in CFIDS/ME and both M.S. and CFIDS/ME patients are commonly told to see a psychiatrist in the beginning! ... In M.S., all parts of the nervous system can be attacked so the symptoms can vary just as they can and do in CFIDS/ME.

Among the symptoms [of M.S.] listed are primarily "fatigue", followed by muscle weakness and numbness, pain, vision and speech problems, cognitive decline, and bladder and bowel dysfunction. These are all familiar to all those with CFIDS/ME.

CFIDS/ME is not M.S. but it may well be another form of M.S. and may be found to be a more severe subset of M.S. since those with CFIDS/ME generally are known to suffer daily much more than patients with M.S.

* * * * * *

If CFS and MS have essentially the same symptoms, then why do MS patients get sympathy and respect, while CFS patients are verbally abused and told to get back to work? The answer is, better PR. There is no doubt in anyone’s mind nowadays that MS is a "real disease". Meanwhile, for years the media have engaged in a campaign to discredit CFS as depression or psychosomatic, aided and abetted by the silly name Chronic Fatigue Syndrome imposed by CDC to minimize another tragic epidemic too soon on the heels of AIDS.

CDC put out PSAs five weeks ago, finally acknowledging that CFS is "real". Yet the only time I have seen those PSAs on either of the two stations I watch most (CNN and NBC) was a snippet during the news on the day they were released. Not one word about "CFS is real" in our local newspaper. Hardly a sufficient press campaign to undo 20 years of slurs.

Perhaps if the word gets out about the similarities between CFS and MS, we'll get more respect. 

Wednesday, December 6, 2006

CFS is not Fibro -- Part 3

Excerpt from an interview with Dr. Cheney on the DFW CFIDS support group website:

Post-Exertional Fatigue Indicates a "Q" Problem

Next, the NJ team looked to see if there were any symptoms that were 100% observable in the group of disabled cases, but not in the others. They found that there was only one symptom (among the loooong list of CFIDS symptoms) that was seen in 100% of the patients with the Q problem. Only one. Post-exertional fatigue. That is, when you push yourself physically, you get worse.

What distinguishes CFIDS from FM? Post-exertional fatigue. Patients who have FM, but not CFIDS, can exercise–it helps them. FM patients do not have a Q problem. MCS patients do not have a Q problem. [Unless they also have CFIDS.] They do have other issues that overlap with CFIDS. Martin Pall's conceptual framework allows us to lump these people all together (FM, MCS, GWS, CFIDS). However, Q is what separates them. CFIDS patients have a big Q problem, and post-exertional fatigue is the one symptom that correlates with Q.

Post-exertional fatigue is the number one symptom reported by people with ICM. Among the disabled CFS patients [the severe group], 80% had muscle pain, 75% had joint pain, 72% memory & concentration problems, 70% unrefreshing sleep, 62% generalized weakness, 60% headaches, 60% lymph node swelling, 68% fever and chills, and, 50% had sore throat. Though some symptoms were certainly more common among the disabled patients, the symptoms varied–with the exception of post-exertional fatigue. They all had that.

This suggests that it is not so much the symptoms that are disabling. Rather, "the symptoms are reflecting an interaction (or a nexus) between Q, and how you compensate for Q. Depending on the nature of the compensation, which is individually distinct, you will get an array of symptoms that is individually determined. Just like this: ten patients with MS will not have identical symptoms. Any more than ten AIDS patients, or ten cancer patients, or ten of anything." Why? Because the disease process–which they all have–will manifest differently in each person. The specific symptoms will arise out of factors unique to each person; those factors will determine how the disease plays out in each.

"Within the non-disabled [CFS] group they saw pretty much the same thing–it's just that the percentages were a lot lower. For example, fever and chills were found in only 5% of the non-disabled. The highest percent was post-exertional fatigue seen in 60%. But 40% of the CFIDS patients who were not disabled did not have post-exertional fatigue, but did have CFIDS."

"The reason for that is, of course, if you look at the original case definition, post-exertional fatigue–that is exercise worsens the syndrome, effort-related exacerbation, push-crash phenomenon–is not a major criteria, it's one of the eight minor criteria. It's possible not to have that and still meet the case definition. But all disabled patients have that, and 60% of non-disabled have that." [It's possible to not even have post-exertional fatigue and still have CFS. However, all disabled CFS patients have post-exertional fatigue, as do 60% of the non-disabled.]

"More importantly, all disabled CFIDS patients, all of whom have post-exertional fatigue, have low "Q" and are in heart failure."

* * * * * *

Clearly, the experts aren't buying into the theory espoused by some of our commenters that someone with fibro knows exactly how a person with CFS feels, nor that the person with CFS can push themselves in the same way as a fibro patient.

Test results are different in the two diseases (documented in Jodi Bassett's excellent article on  They may have similar symptoms, but CFS also has symptoms in common with MS.  (NCF-NET has recent research showing that the same virus may be implicated in both MS and CFS.)  That doesn't make CFS the same disease as MS, far from it; it just means they have some symptoms in common, just like CFS and fibro, or CFS and AIDS.

Those with CFS cannot exercise without relapsing; I've proved that empirically time and again over the past 19 years.  I finally accepted that cleaning my house properly was going to land me in bed for a while, and that simply wasn't a good trade-off -- my goal is to get better and return to work, not repeatedly make myself worse and go to the hospital.

CFS and "chronic fatigue"

In RCTN, Caryn writes: keep out of something you have no frame of reference for.

That's the best advice I've heard this week. If your only frame of reference for CFS is that "it has something to do with fatigue", then KEEP OUT OF IT.

There is far more to CFS than mere "fatigue". To tell a CFS patient "I'm tired, too" simply proves that you're unaware of the extent of the disability caused by CFS.

And then there are the people (both doctors and laypeople) who confuse "chronic fatigue" with CFS. Mark Twain said the difference between the right word and the almost-right word is like the difference between lightning and lightning bug, and the same is true here.
CFS is not "chronic fatigue". It's a Central Nervous System dysfunction with innumerable symptoms which are far more disabling than the fatigue. Many of these are observable symptoms -- not something you have to take the patient's word for. Fever is visible, so is vomiting, fainting, clumsiness....

Some doctors, who could not, or would not, acknowledge the difference between "fatigue" and CFS, perpetuated the hoax that the symptoms were all subjective and there was no proof of illness. Other doctors compiled lists of symptoms and tests that proved there was a problem.  Some doctors perpetuated the hoax that "such a wide variety of unrelated symptoms, it has to be hypochondria." But neurologists proved that every one of the symptoms can be caused by Central Nervous System dysfunction.

People who don't know what they're talking about where post-viral CFS is concerned would do themselves a huge favor to stop talking and start listening. They might learn a few things about the disease instead of continuing to repeat false information.

Monday, December 4, 2006

CFS vs. Fibro - Part 2

Dr. Yunus is a renowned fibromyalgia researcher.  The hard-copy article apparently included charts showing how the symptoms differ between CFS and fibro, but those charts were not included in the online version.  Your local hospital's medical library may be able to help you find the original article with the charts.  If you find an online version with the charts, please add a comment with a link to that version.

As Dr. Yunus notes, symptoms are not as severe in fibro as in CFS.  This has led some people to theorize that fibro is the mild form of the disease and it progresses to full CFS over time, while others think they are not the same disease at all.  Jodi Bassett notes that there are divergent lab tests, and the people who have been given a dual diagnosis have the test results applicable to CFS, not those for fibro. 

Excerpts from:
Chronic Fatigue Syndrome and Fibromyalgia Syndrome:  Similarities and Differences by Muhammad B. Yunus, MD, University of Illinois College of Medicine at Peoria, Peoria, Illinois

The published reports have demonstrated apparent similarities between these two common syndromes, yet it is also clear that these syndromes are not identical.

Clinical Features

     It is clear that these features overlap considerably between the two syndromes.  However, it appears that several features are quantitatively, and perhaps qualitatively, different (Table 3). While data on cognitive impairment in FMS is limited, clinical experience would suggest that symptoms related to such an impairment are not as common or severe in FMS as they appear to be in CFS.   ...  Although fatigue is present in 80 to 90 percent of patients with FMS, it is overall less debilitating in this syndrome than in CFS.

Immunologic and Other Laboratory Findings

    Abnormal immunologic findings are very common in CFS, leading to the nomenclature "chronic fatigue and immune dysfunction syndrome."

    Hematologic abnormalities, including complete blood count and erythrocyte sedimentation rate, are absent in FMS and variable in CFS. 

    A host of infectious agents, including EBV, measles virus, cytomegalic virus, enteroviruses, human herpesvirus 6, retroviruses, and Borrelia burgdorferi, among others, have been implicated in CFS. Antibody titers to Epstein- Barr virus were not significantly different among patients with fibromyalgia from those in matched normal controls

    Cerebral blood flow imaging by SPECT (single photon emission computerized tomography) and PET (positron emission tomography), as well as topographic brain mapping with evoked responses using BEAM (brain electrical activity mapping) have been reported to be abnormal in a large majority of patients with CFS, showing a pattern different from normal controls and those with depression.

Pathophysiological Mechanisms

    Fatigue, the overwhelming symptom in CFS, is most likely to be central in origin, although secondary changes in muscles due to deconditioning may further aggravate this symptom. (Mental or physical stress, poor sleep, depression, and infections are other aggravating factors of fatigue).  Many of the neuropsychiatric features of CFS may be explained by limbic dysfunction (I prefer the term "dysfunction" to "encephalopathy," since such a dysfunction may occur due to neurochemical aberrations, and not necessarily due to anatomic lesions or pathology), as has been suggested by Goldstein.

it is clear that neither CFS nor FMS is a psychiatric illness


    CFS and FMS share common characteristics, but some features are more prominent in one syndrome than the other.

Tuesday, November 28, 2006

Who qualifies as "disabled"?

There's been some criticism over the years that if I'm working, I'm clearly committing fraud by applying for disability.

Here's the official word from a lawyer:

To be eligible for Social Security disability you have to be unable to
engage in any substantial gainful activity by reason of any medically
determinable physical or mental impairment that can be expected to
result in death or that has lasted or can be expected to last for a
continuous period of not less than twelve months.

The key words for you are "substantial gainful activity."  Work that
earns less than $860 a month is not generally considered to be
substantial gainful activity.  Of course, if you were actually able to
work more hours you would not be disabled, but if you are working at
less than the substantial gainful activity level because your disability
prevents you from working more, you can still be found to be disabled.

"Continuous period of not less than twelve months"     Check -- I've been off work since February 2000

"medically determinable impairment"    Check -- several doctors have found objective orthopedic problems that would keep me from working, quite aside from the CFS; there are abnormal blood tests as well; CFS is (under SS99p) considered a "medically determinable impairment"

"work that earns less than $860 per month"    Check -- there have been a few months that I have reached that, but the effort always caused a relapse, proving that I could not "maintain employment" as required by the law.  The question is not whether you can get a job, the question is whether you can actually work at it successfully.  My attempt to go back to a law office part-time resulted in a total collapse after just three days, thus proving to the satisfaction of the doctors that I cannot "maintain employment".

There are no rules that say you cannot work part-time, earning less than $860 a month, while applying for or collecting SSDI.  They have, however, established that to be the level at which you are "self-sufficient" and no longer need government help.  Working 6 hours a week leaves me well short of the $860.  Working 10 hours a week (the maximum before I relapse) puts me a little above it, but after subtracting business expenses, I'm still below it.

In fact, SSDI encourages people to try going back to work to see how it goes, hoping that they'll find they can.  Unfortunately, every time I've pushed it to12-15 hours a week (the barest minimum for a "real job"), I've wound up back in bed, proving through experimentation that I really can't go back to work successfully, as defined by the law.

There are other requirements such as having contributed a minimum amount of "insurance premiums" toward your benefits.  Since I worked full-time for 20 years, not a problem for me; I'm well over the minimum.  Someone who worked part-time or took time out to raise a family might not have enough credits to qualify.

The courts are mindful that you might be able to do small amounts of work interspersed with rest periods at home that would not carry over to performing satisfactorily in the work place.  They recognize that employers do not give you unlimited sick days, and have ruled that needing to take off even one day a week to rest is enough to make you disabled.  They have stated flat-out that "work when able", as required by a CFS patient, is not a "reasonable accommodation" under ADA. 

So, I have no problem, under the law, reconciling my apparent ability to work with my claim to be disabled.  Under the law, I am disabled, even though I do work as much as I can.

Monday, November 27, 2006

Sloth or Industriousness? You decide.

Slothful?  Hardly.  While the rest of the country thought it was their God-given right to have a four-day holiday weekend, I worked every day of the "long weekend".  I had a series of transcripts that had to be delivered by Monday morning, so I couldn't take the weekend off like most.  I did take a couple hours out to do fun stuff (like watch a favorite movie), but that didn't reduce the number of hours that I had to work over the weekend ... just took some of the work out of normal business hours and pushed it till 10 or 11 at night.

Anyway, I find it rather amusing that someone who was out of the workforce for more than a decade would dare to call someone with a 20-year career (after a series of student jobs, including having started two businesses while still in my teens) who even now runs several businesses "slothful". 

I was never a "kept woman" -- I always worked, usually as the sole breadwinner of the family.  I know Lynn can't say that, because she was unemployed for 12 years, with someone else paying all her bills for her.  No man, other than my father, has ever paid any of my bills.

Even now, I work as many hours as the doctors allow.

The day Lynn turns up documentation that she has worked for pay as many hours in her life as I have, I might admit to being lazier than she is.  But since I often had 2 or 3 jobs at a time before I got CFS, and worked a fair number of 100-hour weeks as a paralegal doing trial prep, I rather doubt that she will ever in her lifetime work as many hours for pay as I have.  Because while she took 12 years off, I have yet to take off more than a couple months at a time, usually when I was too sick to work -- not because I was too lazy or had someone else to support me.

Even now, I am working.  Maybe not full-time, but working, and earning a good hourly paycheck.  Probably more than Lynn ever earned per hour -- or ever will.

Tuesday, November 21, 2006

What CDC Says about CFS

After 20 years of denial, CDC has admitted that CFS is "real".  These are excerpts from the recent press conference in which they announced the official government stance that this is a very real, biological, disabling disease.  You can read the whole thing at

Dr. Julie Gerberding, head of CDC "We are committed to improving the awareness that this is a real illness and that people need real medical care and they deserve the best possible help that we can provide."

Dr. Willian Reeves of CDC: "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."

Reeves again: "the best predictor for CFS was intensity of the initial infectious disease. The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis."

Harvard's Dr. Anthony Komaroff: "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."

Komaroff continues: "First, abnormalities of the brain. It's hard to study the brain in the living human being. Invasive techniques like a brain biopsy are reserved only for people with life- threatening illnesses. But over the last 20 years, the number of non-invasive techniques to look at the brain has grown enormously and here's what we're learning.

"First, brain hormones. The brain has hormones produced in two major centers: the hypothalamus, pituitary gland. And a whole bunch of studies show that that hormone system is different in patients with chronic fatigue syndrome than in healthy people, people with depression and other illnesses.

"Brain imaging studies, particularly MRI, or magnetic resonance imaging, scans and nuclear scans of various types, have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain. In many patients, cognitive function is impaired. And finally, the autonomic nervous system, which controls blood pressure and pulse and other things, most studies find to be abnormal in this illness.

"Now, none of these nervous system abnormalities is constant or permanent. But when they're there, they change a person's life. And it's entirely plausible that the abnormalities that have been seen on these various neurologic testing techniques could explain the symptoms of this illness.

"What about the immune system in chronic fatigue syndrome?

"Many studies have found that by several criteria the immune system appears to be in a state of chronic activation, as if it were trying to fight against something foreign.

"The research described by Dr. Reeves on looking at gene expression studies, for example -- and this is now true in several different laboratories around the world, looking at different patients -- the genes that control the activation of the immune system are abnormally expressed in patients with this illness.

"Dr. Klimas and other investigators have shown that different cells within the immune system are abnormal either in number or their capacity to function."

Dr. Nancy Klimas, noted researcher: "Historically, it's been the lack of credibility in this illness that has been one of our major stumbling blocks to making progress.  Well, today there is evidence of the biological underpinnings, as Dr. Komaroff described. And there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."


QUESTION: You've cited quite a bit of research that validates that CFS is actually a real disease.

I'm wondering: Why is there still such a level of skepticism out there in the medical community? Is it simply a lack of awareness among health professionals? Or are there still some areas or some gaps in the research that raises questions that need to be addressed that contributes to that skepticism?

MCCLEARY: Dr. Komaroff?

DR. KOMAROFF: I think there are an awful lot of skeptics I've met who really just haven't read the research literature, don't even know that there are 4,000 peer-reviewed published papers out there.

And I think that's probably the biggest factor, combined with the fact that those people, sort of, took a stand early on as to what they believe and have been reluctant to back off in the face of the evidence they've not made themselves aware of.


Clearly, it is now official that anyone who doesn't believe CFS is a very real, disabling disease needs to read the literature that proves -- to the satisfaction of the US government -- that the patients are not faking, the doctors who believe in it are not quacks. 

The real quacks are the doctors who, for the past 20 years, have ignored every one of those 4000+ research studies proving objective, documentable abnormalities in patients who have CFS -- true CFS, not the symptom of "chronic fatigue", which is another thing entirely.

Dr. Bell's list of symptoms, known in 1993 already:

exhaustion, headache, malaise, memory loss, muscle pain, difficulty concentrating, joint pain, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness and/or tingling in extremities, fainting spells, light-headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities...

Although these symptoms will not show up on a blood test, many of them are "objective" in the sense that an observer can see for themselves that the patient fainted, the patient is awake all night, the patient is gaining weight without changing their food intake, the patient's lymph nodes are palpably swollen...

In other books, there are long lists of blood tests which also objectively prove that there is something very wrong.  As Dr. Bell notes "the CBC is not an overall portrait of health."  Yet many doctors wrongly assume that if your CBC is normal, there's nothing wrong, and don't bother to do the follow-up tests for things that CBC doesn't check. 

All this has been known for years, but some hide-bound doctors refused to consider anything that conflicted with their personal theories that were often based in misogynism more than science.  Now that even CDC has admitted that CFS is real, those doctors will have to do some serious soul-searching about why they have been so committed to the idea that CFS is not real.

Oddly enough, some doctors who dispute the existence of CFS have no trouble in accepting a very similar collection of neurological symptoms adding up to Multiple Sclerosis, for which there also is no specific blood test.

What the EXPERTS say about CFS


CFS represents the final common pathway for multifactorial disorder with a limbic system encephalopathy causing autonomic dysfunction and subtle neuroendocrine derangements. – Jay Goldstein, M.D.

CFS is a debilitating illness involving symptoms and abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic-pituitary-adrenal axis. – Dr. Katrina Berne

The name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated scientists. Their deliberate intention was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. – Hillary J. Johnson

The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment.– John Herd

Historically, illnesses are attributed to temperament when science lacks, or refuses to seek, answers.– B.F. Synhorst, M.S.W.

Attribution of illness to ... unconscious motivation is inaccurate, unfair and insulting. – Dr. Katrina Berne

This is not a "benign" disease. The loss to the minds and bodies is inestimable. – Michael Goldberg, M.D.

Avoid the labels "somatizer", "hypochondriac", "neurotic" and "crock". All symptoms have origins and should be taken seriously.– Dr. Katrina Berne

"Just learn to live with it" is not an acceptable approach to pain management.– Steve Fanto, M.D.

Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run. – Devin Starlanyl, M.D.

When these conditions are vigorously and appropriately treated at their onset, much pain and dysfunction can be prevented. – Devin Starlanyl, M.D.

Just because the doctor may not be familiar with your medical condition does not mean it isn’t real.– Devin Starlanyl, M.D.

It is a sorry state when patients must be responsible for the education of their doctors, but that is where we are.– Devin Starlanyl, M.D.

CFS is characterized by extreme exhaustion lasting 6 months as well as biochemical abnormalities

It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.

Dr. Paul Cheney found that in dual chromatography analyses, many CFIDS patients actually had more derangement of the brain, on a biochemical level, than Parkinson’s or Alzheimer’s patients.

Dr. Sheila Bastien, who studied a group of educated patients, was stunned to realize that patients who initially appeared very lucid had suffered tremendous drops in IQ.

Nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years "hysterical paralysis".

The incidence of CFIDS is now higher than that of lung cancer, breast cancer or HIV infection in women.

It’s stupid to call it Chronic Fatigue Syndrome. It should be called the forever dead syndrome.–Keith Jarrett, jazz pianist and CFS patient

Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

Dr. Daniel Peterson’s Medical Outcome Study revealed that no other set of patients had ever measured so poorly. CFIDS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.

This disease is actually more debilitating than just about any other kind of medical problem in the world. – Dr. Leonard Jason

When asked on CNN how many of his CFIDS patients had fully recovered in fifteen years, Dr. Peterson unequivocally and chillingly stated "None".

According to Dr. Komaroff, 4000+ research studies have identified objective physical/organic abnormalities in CFS patients

40% of CFS patients studied by a Chicago group were completely disabled by the disease. Nearly all of these said they had been denied Social Security benefits.

Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven").

Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value. – Sheila Bastien, Ph.D.

I remember thinking that if I were testing nothing but Alzheimer's patients, then I would say "This group isn't very impaired." But they were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions. – Sheila Bastien, Ph.D.

There are many well accepted disorders that lack objective physical findings.  – Kevin P. White, M.D.

We have little understanding of disease mechanisms for many well accepted disorders, such as polymyalgia rheumatica, migraine headache, and trigeminal neuralgia. And we have very few effective treatments for disorders such as scleroderma and ankylosing spondylitis. Yet none of these disorders comes under the same intensely zealous scrutiny  ...   all symptoms are, by definition, subjective. – Kevin P. White, M.D.

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell

The apparently disinterested CDC essentially turned its back on the devastation in Incline Village and elsewhere. On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention –– based on the correspondence they exchanged over a period of months –– was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10

 Same book, page 13, David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest. ...The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name.

Nancy Klimas, M.D., at 11/3/06 CDC Press Conference: "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."


Monday, November 20, 2006

CFS is Not Fibro

Since I've had some comments lately from people with fibromyalgia (but not CFS) that they can do things that I cannot, and therefore they assume that I'm not doing these things because I don't want to, let me provide some quotes from an article compiled by Jodi Bassett showing that these supposedly similar diseases manifest in very different ways:

Myalgic Encephalomyelitis (a/k/a CFS) vs Fibromyalgia by Jodi Bassett

Do M.E. and Fibromyalgia really have as much in common as some people claim? The reality is that the similarities between the two illnesses are minimal and superficial at best but their differences are truly profound. Even if they do share one or two symptoms is this really significant when in so many much more important ways they are so VERY different and have so very little in common?

Dr Darrel Ho_Yen of Scotland, (a well respected M.E. researcher and virologist) was published in the British Medical Journal in 1994:  "... the management of the two conditions is different. Patients with (ME/CFS) should be advised not to increase their activities gradually until they feel 80% of normal, whereas patients with fibromyalgia may benefit from a regime of increasing activity. (BMJ 1994:309:1515)."

Consultant rheumatologists who have sufficient experience with both syndromes have observed clinically that in FM, the muscle pain is helped by gentle stretching and exercise, whereas in ME/CFS, exercise makes muscle pain worse.

Jodi also details some radical differences in test results that prove that CFS is not the same as fibro.  

There is a vast difference between not doing something because it "might" cause you pain, and not doing it because your muscles refuse to respond when you command them to do it.  "Paralytic muscle weakness" is one of the neurological symptoms in CFS that is not usually found in fibromyalgia (which is primarily characterized by abnormal pain levels, though the muscles still work properly). 

It's not a matter of "wanting to", but of physical ability.  For example, there have been plenty of times when I sense I'm about to be sick.  I certainly don't "want to" get it all over myself and the couch, and create a huge clean-up job.  But after trying a dozen times to stand up so that I can get to the bathroom, and with no one else in the house to help me get up by pulling me upright, I'm simply stuck where I am because my muscles are paralyzed ... they will not respond no matter how desperately I command them "get up, I must get to the bathroom NOW".  Fortunately, I keep a trash can next to every place I sit, so if I can turn my head, there's not much mess to clean up.

A member of one of my online support groups has explained Paralytic Muscle Weakness in very telling terms -- if her house were to catch on fire, she would have to wait among the raging flames until a firefighter came to carry her out, because her muscles would not respond even to this emergency situation.  Surely no one would think she's staying in bed because she WANTS to be burned to a crisp?

I also have orthopedic problems resulting from years of intense physical activity.  I have been told not to lift over my head; that means I can't put the groceries up on the kitchen shelf.  When the inspector ordered me to put things in the cupboards that I had been storing on the counter where I could easily reach them, I had to go to the doctor several times a week to get my dislocated shoulder put back in, and each time, the doctor scolded me "you know better than to do that"; I do, but the inspector didn't care about doctor's orders. 

I also faint (another neurological problem not commonly seen in fibromyalgia).  For safety reasons, the doctors don't want me standing on chairs or ladders to put things up into the cupboards unless there is someone else standing right there who is physically strong enough to catch me if I fall.  There are serious medical reasons (and doctor's orders) not to do this task myself, but when I've asked other people to do the job, they just dump the bags on the floor and tell me "do it yourself -- I don't know where it goes".  Um, try putting the vegetables next to the other canned vegetables and the soup next to the other canned soup -- this is not rocket science.  What it is, pure and simple, is people who are hired to do whatI NEED done, who refuse to do what they're being paid for, because it's not what they want to do.

I'm under doctor's orders not to carry things for orthopedic reasons.  I also have neurological balance problems (not commonly seen in fibromyalgia) that make it hard enough for me to get myself safely down the stairs without carrying a box that might unbalance me even further.  Again, I hire people and tell them to carry boxes to the basement for me, and they give me excuses instead of cooperation. 

"I can't -- my suitcase is on top of the boxes", that's not someone who really wants to get the place cleaned up ... that's someone who, having gotten the free room-and-board she wanted, now sees no reason to follow through on the promises that got them, just like the hired cleaners who demand payment upfront to make sure I don't defraud THEM, and then refuse to do what they're asked, thus defrauding ME; I can't refuse to pay them -- they already have my money. 

The hallmark of CFS is "exercise intolerance".  The more you do, the sicker you get.  This is not, by any means, the same as fibromyalgia, where more exercise makes you feel better.  It has been proven that CFS patients have a "daily activity limit" and that exceeding that limit puts them into relapse.  Yet, people who have fibromyalgia without CFS, and don't know that the experts recommend a CFS patient stop before they reach "their all", think that we have the same condition they do, and tell us to exercise like they're supposed to. 

I've tried exercising more ... it makes me sicker.  That's how we know it's CFS and not depression, and that's how we know it's CFS and not pure fibro: CFS has this unique reaction to exercise that manifests differently from the reaction to exercise in every other so-called similar disease.  Research has proven that this is not a figment of the patients' imagination -- there's a biological reason why overused muscles rebel.

After one week of taking a walk every day (which was supposed to work wonders for my arthritis), I was back in bed with Paralytic Muscle Weakness.  As my support group member said, if the house caught on fire, I'd have to wait for a fireman to carry me, because I couldn't get out of bed on my own.  Eventually, I remembered reading that a paraplegic had a rope tied to the foot of the bed to pull himself up from lying down, and byusing the bedspread as a rope, I was able to "sit" propped up on pillows despite the muscles in my lower body not cooperating. That hasn't happened since, because I learned my lesson and don't push my muscles beyond their limit. 

In fact, I feel pretty good now that I have established where my limits are and don't exceed them.  That's the key to coping with CFS -- do as much as you safely can, but stop before your body rebels.  An extra 5 minutes of exertion could cost you a week in bed; it's just not worth it.  As much as I hate spending 23 hours a day semi-horizontal, it's better to have that one hour to do some light housework and cooking than to push myself and have to spend 24 hours a day in bed.

On November 3, 2006, CDC held a press conference announcing that "CDC is real", and that "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."  

Those words make it clear that the official government position is not that CFS is laziness or unwillingness to work -- the official government position is that CFS is a severe, debilitating medical condition, and neither the disease nor the patients should be insulted any longer. 

It's well-known that classic CFS begins with a flu-like illness, a virus that never goes away -- fibromyalgia is not normally related to a virus.  Right there, we can see that they are very different diseases.  CDC's press conference continued, "The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis."  That's not fakery, that's virology.

Dr. Anthony Komaroff, Harvard researcher, said that day "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."  I can tell you from 12 years post-diagnosis of trying to imagine myself well, that I never succeeded in getting rid of all thesymptoms.  I worked full-time, but had little energy left for Quality of Life -- most of the things I used to enjoy doing had to be set aside as unnecessary drains on the limited amount of energy that was required just to keep working full-time.  Dr. Komaroff confirms this "in the last five years a number of studies have shown that there probably are abnormalities of energy metabolism in patients with this illness" which cause the lack of energy.

Dr. Nancy Klimas, who has treated thousands of patients in addition to doing research, chimed in at the CDC press conference with "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."

Dr. John Greensmith has noted that if a child is faking an illness, they will feel better on school holidays and weekends.  For 12 years, I spent most of my weekends and holidays from work on the couch, resting up so that I could get through another week of work.  I didn't go sightseeing, I didn't hit the holiday sales at the mall, I didn't go to the movies like my co-workers ... I rested so that I could keep working.  I stopped playing volleyball and going hiking, and spent my weekends on the couch with needlework -- a night of dancing would have cost me several days off work later in the week.  As much as I love to dance, as the sole support of the family, I could not risk my job to do it.

This is not a disease of someone who lays on the couch 24/7 because they hate to exercise.  Many of the Incline Village patients were avid skiers, and most of the Truckee High girls basketball team were felled by the virus.  We were dancers, we were marathoners, we were Olympians.  The truth doesn't fit the assumption that people with CFS love being couch potatoes. 

Too many of the patients were competitive athletes, too many of the treating doctors saw patients who felt a little better and tried to go back to their training regimen; the doctors actually treating the patients knew that the problem was not exercise-o-phobia, as postulated by some people who never actually treated a CFS patient. 

I went from being able to hike 20 miles a day over hills to needing a half hour nap to recuperate from the 10-foot walk to the bathroom, so that I could make it the 10 feet back to the bed.  A doctor who asked the right questions would instantly realize that this was not a patient who is looking for an excuse to lie on the couch and watch TV; unfortunately, too many doctors don't ask the right questions because they "know" women don't want to get sweaty and ruin their make-up and curls.

It's been my experience that the people who assume you're too lazy to exercise are those who themselves hate to exercise.  A doctor who himself loves to run will understand immediately that you don't give up the Runner's High for anything in the world.

And the people who assume you're simply too lazy to work are generally those who themselves are looking for any excuse to be stay-at-home wives.  Never in a million years could I explain to them that the adrenaline rush of being a litigation paralegal is an addiction you don't give up easily.  And they don't seem to grasp that without a husband's income to fall back on, my working is the difference between a very enjoyable upper middle class income ($50,000+ for one person) and below poverty level, where every penny has to be accounted for.

If you're the sort who's always looking for ways to get out of having to work, you'll never understand that having a job can be an immense pleasure, and having that job taken away from you is immense torture.  Like most CFS patients, I would give ANYTHING to return to my career, but with no treatment or cure for CFS, all I can do is sit and wait.  And, as I did 6 years ago: create a job that fits my physical limitations so I can still get some of the pleasure of working, even if it's not full-time.

Friday, November 17, 2006

Calm before the storm

Starting next week, I'll have a ton of work coming in every week for the rest of the year.  But this week there was very little work, so I took the opportunity to get some long-postponed chores out of the way.

We took two big boxes of professional clothing to the thrift store -- dresses and suits that could have been Seanette's if she had ever gotten the basic housecleaning caught up enough that I could ask her to spend a couple hours doing something non-essential like helping me clean out the closet.  She chose not to do the basics, so she lost out on the opportunity to have a full office-job wardrobe for free.  And has only herself to blame.

Stubbornness and slothfulness can be costly in the long run.  You never know what bonuses your employer has in mind for a job well-done.

Now I'm going to spend the weekend enjoying a last burst of stitching, because once the work starts coming in, there won't be much time for that.  Fortunately, I'm almost done with my Christmas presents.

Wednesday, November 15, 2006

Guilty Until Proven Innocent (Part 2)

Also see my post of 7/11/06 is Mary's version of the same rant. 

According to Mary's research:

There's a widespread national myth that people are "faking it"

I understand that Connecticut spent over a million dollars to uproot all
those fakers in their system, and only found six. Real cost efficient. You
would think those economists who like to argue that it isn't worth the cost
to eradicate that least little bit of pollution would also maybe
occasionally argue that it isn't worth the cost (both human and
bureaucratic) to be so fixated on that last cheater somewhere that:

a. The system spends more than it saves by finding them; and

b. Real people with real disabilities, and their real families, suffer.

It's even worse around here -- the government is doing a thorough investigation of a number of high-level police personnel who "mysteriously" became disabled just before retirement.  Apparently, they get more money for disability retirement than they do for regular retirement.  But that's not the case for the rest of us.  Because I was deemed unable to continue working at age 42, I lost 25 years of what would presumably be my highest earning capacity.  Not only will my disability benefits (if and when I ever get them) be only about 30% of what I could be earning as a paralegal, but my retirement benefits go down with each year that I'm not earning good wages. 

There simply IS no "secondary gain" for the average person in applying for SSDI instead of continuing to work.  You're losing money -- lots of money -- every year that you don't work.

Yes, there are a rare few who simply don't want to work.  According to Mary's statistics, a whole 6 people in the state of Connecticut.  Extrapolate that to a couple hundred in the entire US.  Meanwhile, most of the million CFS patients have been denied benefits.  The "cost" to the economy of hundreds of thousands of people with not one cent of income to contribute to the economy far outweighs the savings of denying benefits to a few hundred liars.

But I can tell you from many years of working in the legal field, evaluating injured people, that the real fakers are usually outed.  At some point, they'll tick off the wrong person, who will report that the wheelchair-bound can walk for 12 hours at Disneyland, or the person who claims a severe back injury was seen moving furniture, and the faker will be charged with criminal fraud.  End of payments.

No one doing surveillance on me could possibly claim I'm faking.  I can do light gardening for about 5 minutes and then have to go lie down ... exactly what I've reported I'm able to do.  I go shopping and sit down in the middle of the aisle to rest ... exactly what I've reported I'm able to do.  There's no surveillance tape, and will never be any surveillance tape, showing me spending hours gardening or housecleaning or dancing, because, quite frankly, more than a few minutes of any of that leaves me gasping for breath and on the verge of fainting.  Go ahead, take a video of me out for a walk ... it'll prove that it takes me 1/2 hour to walk 1/2 mile, and I stopped to rest at least once every block.  EXACTLY what I've reported.

Like 99% of Disability applicants, I'm telling the truth.  My former employer says I can't work effectively.  Half a dozen doctors have made the diagnosis and those who were specifically asked to evaluate disability say I cannot work more than a couple hours a day.  I have orthopedic limitations on both shoulders (no reaching, lifting, carrying) that preclude even a secretarial job, and am limited to typing half an hour before the tendinitis pain starts (which definitely precludes a secretarial job) ... EXACTLY what I've reported.

But because there is no CFS-specific blood test, the abnormal test results have been ignored.  The doctor-imposed restrictions have been ignored.  The judge's ruling is made purely on prejudice against the name of the disease and not a full understanding of the ways in which the neurological effects affect my ability to work.

There ARE lies being told in my case, but not by me.  Lies by doctors who claim I'm "self-diagnosed" and "haven't worked since 1988" and "there are no abnormal tests".  Lies by the judge who invented a husband who supports me and my "choice" not to work.  Everything I say can be proven.

Friday, November 10, 2006

CDC says CFS is Real


Hopefully all those doctors who have been saying for years that we are just lazy or crazy will eat crow now and admit that they have been wrong. 

Friday, November 3, 2006

Watch the PSA (or read the transcript)

If you know anyone who works at a radio or TV station, please be sure that they are aware of these.


Thursday, November 2, 2006

Well, I'll be!

I never thought I'd see the day ... CDC admits that CFS is "real".  <swoon>

You can watch the segment, or read the transcript, at

Tuesday, October 31, 2006

The Aftermath

I managed to make it to the CFS seminar on Saturday, and (thanks to two days confined to the couch in preparation) actually lasted through the whole 3.5 hours, but haven't felt well since.  I was alternating between sitting in the chair and lying on the floor (and the hard floor isn't exactly the best place for my fibromyalgia), thinking that somewhere, there is someone who will point to the fact that I "sat" through this seminar as proof that I could go back to work, not realizing that I had to spend half of the time lying down, which would not be acceptable in an office setting.

The seminar was interesting, but I have yet to type up my notes.  They'll be posted to the CFSfacts website when they're done.

There is a new ad campaign starting this weekend.  The kickoff will be with an interview on NBC Nightly News on Friday.  If you miss it, you can watch it online at later that evening (looks like they archive shows for a week).

Friday, October 20, 2006


Went out to run an errand this morning and we got broadsided, on my side of the car.  My door was jammed shut (though Brian did finally manage to wrench it open).

I swear his car has a target painted on it.  This is the third time in two years that it's been damaged ... once while it was parked outside his office, not even being driven.  Never his fault.

Since she hit my door, I'm the one who's battered and bruised.  Trying to figure out if the pain in my wrist is from something I did, or from the accident.  This really is not the day for me to have to rest my wrist -- I have work to do.

For today, I'm treating the pain with a heating pad and chocolate.  I'll decide tomorrow if I need the chiro to look at the back.

And, of course, this couldn't happen on the side where I'm already supposed to be getting the shoulder x-rayed.

Wednesday, October 18, 2006

Both sides of the story

Seanette writes at

funny how said problems keep her from working or cleaning house

Let’s tell the truth. I own a business. The person who was not working, not even applying, was Bob.

For orthopedic reasons, I am not to do certain things, which makes cleaning impossible. I hired an agency, and got none of the services I paid extra for. She apparently spent hours wiping down an already-clean counter.

After agency cleaners told me they're not allowed to do the things I needed done, I "hired" Seanette/Bob to do what the agencies wouldn’t.  They didn’t accomplish more than a couple items on the list, and much of what they did was done in a way to ensure they either wouldn’t have to complete the job (put Tupperware away with seals on, so that only two containers fit where I had previously had four or five, nested) or wouldn’t be asked to do it again (spraying RoundUp not only on the toxic vines, but also on my rose bushes).

State Labor Code assigns a value for room and board, for husband and wife roughly $1200/month. At $20/hour, I should have gotten 60 hours work a month. Everything on my lists could have been taken care of with no more than 3 days concerted effort by two healthy people.

along with supposed chronic fatigue syndrome.

It’s not "supposed", it’s officially diagnosed since 1988.

It supports her professional victimhood to insinuate that I’m pretending to be sick in order to make her do my chores. They received adequate compensation, worth $1200/month, and since they were compensated, it matters not one bit whether I can or cannot do the chores that I hired them to do. I hire friends to work in my business, and they certainly don’t consider themselves put upon when they are paid for doing work that I "could" do myself.

Game plan was for us to help get the house shoveled out, which proved an impossibility when it was already overflowing with stuff

They saw the condition a week before. If they thought it would be impossible to clean, they could have refused to move in.

(since we had a car and she doesn't drive, she considered chauffeur service to shop part of the deal)

Despite their admitted financial problems, several times a week THEY wanted to go shopping, and because they didn’t know their way around town, they asked me to navigate. I bought everything I needed in one trip. A couple days later, THEY needed to go back, and I went with them just to get out of the house.

The only shopping I remember instigating was going to the grocery store to buy the things they like to eat. They were allowed to buy anything, even expensive things that I never buy for myself, including expensive energy drinks by the case. Does that sound like they were being taken advantage of?

she kept undoing anything that was done (she'd even manage to reclutter walkways as fast as I'd clear them

During their tenancy, I stayed mostly in my own room.   How could I be recluttering a part of the house I basically wasn’t using?

The first person to clean the dining room brought me a bunch of mail she found under the table. All addressed to them. Another envelope with a note tucked under the seat cushion. Two healthy people who couldn’t be bothered to put their trash in the trash can a couple feet away. They threw more stuff on the floor than I did. All MY trash went in the trashcan.

I get a text message at work from her cell phone. "PLEASE CALL", all caps (not typical).

"Not typical" because for months I told her I could not send text messages to her new phone. Just one week before, she confirmed that the text message that bounced back was never received. If I’ve been telling her for months that I cannot text her, how does she leap to the conclusion this is a text message?

I'm about 15 miles away and do not have the car.

Which is precisely why it makes absolutely no sense for me to have contacted her in an emergency. There were other people who could get here faster, with a car. This logic totally escapes her.

I call the local police ... and ask them to have someone check on her, giving the medical picture and the info about the unusual text message.

Described to the police by Seanette as the "Secret Emergency Code". Again, we had had a number of discussions about this over the prior six months. She was fixated on having a code, and I repeatedly told her I could communicate more information faster via voice mail. I never agreed to a code and had no idea what the code was when the police asked. The police could not for the life of them figure out how any rational person could interpret "please call <my number>"as "call 911" and asked "is she some sort of kook?" (their word)

Crucial information was left out. I called her at 10:17 and she didn’t call back till 10:55. Had she told the police this, the neighbor could have told them I left her house at 10:50. This critical information would have made a difference in the police response was withheld so she could insist they break in to "rescue me". 

The police were led to believe I never leave the house, the only reason for me to not answer the phone/door was medical emergency. Seanette knows that I go to the doctor, to lunch with friends, go shopping, and was babysitting for neighbors. All that was concealed.

Once the police had ALL the facts, not just her lies, there was discussion of filing charges for making a false police report.

A bit later, I get a call from then_friend herself, going nuclear on me because the health department was called in by the police after they broke in and saw the place (turned out she was having lunch with her boyfriend).

Turned out, at the time she called, 10:55 AM, I had been at a doctor appointment, and he requires all cell phones to be turned off.

She knew that I was seeing a doctor, but didn't tell the police that there was a reasonable explanation why I wouldn’t be home. The only place they would have gotten the impression I'm 100% housebound was from her, because the neighbors see me out and about.

As far as "going nuclear", the policeman standing four feet away heard none of the conversation except when I raised my voice to relay to him the answer to his question, that the "Secret Emergency Code" was "please call".

The truth is, it was Seanette who went ballistic because I dared to tell her that I didn’t appreciate the expensive mess she had caused, and Seanette who slammed down the phone on me.

It was quite clear from that conversation that what Seanette wanted was a headline "Clever Heroine Saves Friend’s Life". For someone who was supposedly so concerned about my wellbeing, her own words prove she’s lying ... at no time during our conversation did she ever say anything about "thank God you’re OK". She was more concerned with trying to elicit praise.

Allegedly, she'd left voicemail (my cell carrier informed me when I asked about this that it's not possible for an attempted voicemail to transmute into a text message),

Again, Seanette’s version of the facts is not what she was told. I planned to leave voicemail but somehow wound up at the option to leave a numeric page. 

was bitching about how I'd even known about the call while at work (so why'd she call then, anyway? She knew my schedule)

Doesn’t this sentence contradict her whole argument? If it was a medical emergency, why wouldn’t I have wanted her to know immediately "while at work"? And if I knew she’d be at work without a car, why would I be stupid enough to contact her to deal with a medical emergency? This excuse makes absolutely no sense.

I knew she rarely, if ever, had the car at work and it takes her over an hour to get here by bus. No one in their right mind would call someone an hour away to deal with a medical emergency requiring immediate attention. But she’d like you to believe that I am that stupid, hoping you lack the critical thinking skills to figure out the fallacy of her explanation.

In fact, there was someone less than 50 feet away, with a car, who could have responded to any medical emergency within seconds.  Another neighbor is home sporadically throughout the day, and only a few feet further away. There were people closer, with keys to the house, more logical to call in a crisis.

not only was I spending the holiday weekend cleaning her house but that I was paying all financial costs.

As any moral person would have offered to do, to mitigate the damages caused by their mistake. Even after being told by several mutual friends this was "the right thing to do", Seanette refused.

Instead, I had to spend the holiday weekend (and many weeks thereafter) cleaning – which a healthy person could have largely set to rights over a single weekend – and pay for weeks in a motel, and hire help to do what I could not, and fees/fines, AND practically land in the hospital.

I *could not* deal with the berserker rage she was unloading.

"Rage" that none of the neighbors or the police standing near me heard. The police had to ask me what was said becausefrom four feet away, they didn’t hear my end of the conversation.

(apparently, she didn't bother to pay the city's fees

Anyone want to see the receipts? The documents prove who is lying here. But she wouldn’t get that sympathy a professional victim craves if she told the truth that I paid the bills but asked her to take responsibility for her screw-up.

I couldn't get the place shoveled out in the two months I was there

Let’s get this straight. This is a small house, 880 square feet, with 6 rooms. Two months, 60 days, averages out to 10 days per room. Two healthy people should have been able to do the job in a couple days. Even if there were boxes stacked floor-to-ceiling in every square foot of the house, it would not have taken 10 days per room to carry them to the basement. In fact, the room with the most boxes only had about a dozen.

The independent witness – the one Seanette desperately tried to stop from testifying by lying about him – clarified that when they moved in, the house was in pretty good shape. A couple items of heavy cleaning were needed, things the agency cleaners were not permitted to do, and some boxes needed to be moved to the basement, but it was nowhere near the pigsty Seanette portrays.

The witness testified that the condition of the house deteriorated significantly while they lived here. The living room was clean and entirely usable when they moved in. After each shopping trip, the piles of bags got higher, because all the purchases (except what needed to go in the fridge) were simply dumped on the love seat, until it overflowed, and then dumped on the couch. Neither of them made any effort to put anything away, or carry the bags to the correct room so I could put it away.

After living here 2.5 months, they were still claiming that they "don’t know where it goes". College-educated people cannot figure out that canned goods belong on the kitchen shelf with the canned goods? Maybe they ARE that stupid ... they moved my extra canned goods from the kitchen to the dining room, apparently believing that was more convenient.

(she even screamed at me for throwing out some very stale crackers with a charming hint of mold in the taste while retrieving same from a garbage can that ISTR even had used cat litter in it at the time)

MY recollection is that I had opened a package of cookies a day or two before, which certainly were neither stale nor moldy, and I retrieved them from a wastebasket with only clean paper in it.

If you want to talk about "screaming", Seanette, let’s discuss that charming episode where you were politely asked to stop throwing away the receipts I needed to do my business taxes, and you ran screaming from the room, shrieking that I should stop criticizing you, and slammed the door. Your own husband confirmed that I asked quietly and politely and that you over-reacted to a reasonable request. You sulked because I wouldn’t apologize for making a reasonable request in a reasonable tone of voice that you stop throwing away my financial records, an act that would get me in trouble with the IRS.

marital stress, serious financial stress, her verbal abuse

Yes, let’s talk about stress and verbal abuse. Before you moved, you were specifically told that it was OK to give my phone number to your friends and relatives, but that I did not want to get any calls from your creditors.

Almost immediately, I started getting phone calls from your credit card companies, including one woman who called 8 or 10 times a day, and screamed at me that I was lying when I said that I was not Mrs. Blaylock. I took all sorts of verbal abuse from that woman, because neither of you wanted to talk to her, for days on end being called a deadbeat and a liar for bills that weren’t even mine. It took my going all the way to the president of the company before anyone bothered to confirm that I was telling the truth that both the address and the phone number are registered to a last name other than Blaylock.

And that was just one of many companies calling and disturbing my peace and quiet, because you made it possible for all your creditors to get my phone number.

the plaintiff has a history of conveniently being "too ill" for scheduled legal proceedings.

The plaintiff appeared for her deposition, willing to go forward as long as possible, and the other lawyer decided that the plaintiff was too ill to give good testimony. Hardly as manipulative as you make it out to be, since the decision was made by the lawyer.

I know from her own statement (relating to another piece of litigation of hers) that she'll do this on purpose out of sheer malice for the other party, so it won't surpriseme if she does this to me a few times.

The only malice involved is by you, Seanette. You were given ample opportunity to make amends, to volunteer to chip in toward the expenses of this fiasco, and you repeatedly refused to do anything to fix the problem you caused. Then you made threats that if I didn’t do what you wanted, you’d call the other lawyer and volunteer to sell her your (fictionalized) testimony. Meli called you on your first threat as soon as you made it, and warned you that there could be legal consequences to your actions.

the plaintiff being a professional victim

If you want to see a professional victim, look in the mirror.

Only you could somehow twist 2.5 months of free room and board in exchange for a few hours of chores into victimization.

And after you created an unnecessary, expensive fiasco, you even twisted that into victimization, because I dared to say "I don’t appreciate this".

You come up with a really imaginative story to explain yourself, but it’s full of logical flaws that cause people to question your sanity and intelligence.

I don't want a confrontation, I just want this to go away

This could have "gone away" the day you made that phone call if you had just agreed to do what you could to undo the damage you’d caused.

In fact, this could have "gone away" at the courthouse the other day if you had simply said "I’m really sorry, I did something really stupid." Instead, after the judge ordered that both sides had to talk in the hallway to try to settle, you walked away and refused to comply with that court order.

if I cough up over $2000 I don't have

What makes you think that I have $2000 to pay for your mistake?

After claiming that you were so concerned for my wellbeing that you had to have the police break in, you demonstrated complete lack of concern for my wellbeing by whining to Nathalie that you were being driven to bankruptcy and the mental hospital, and never did respond to her when she pointed out that you were doing the same to me.

then there's her paranoia about her ex_husband showing up (no evidence that he has any interest in doing so that I'm aware of)

Bob locked the front door – he’s absolutely positive he did – and went in another room. He heard the door rattling, and when he checked, the door was unlocked.

On another occasion, Seanette teased me about my compulsiveness in double-and triple-checking the front door to be sure it was locked before I went to bed. The next morning, the door was unlocked.

And, oddly enough, once the ex’s driver’s license with this address on it expired and he could no longer get a new key, the locks were changed and the door has NEVER been inexplicably unlocked again.

Reach your own conclusion about whether this is "paranoia" about an ex who has "no interest" in coming around, or whether the facts add up to a reasonable inference that someone was unlocking the door.  She has to make you believe that I’m the one with the screw loose so that you won’t analyze HER actions too closely.

that I never lifted a finger when I was staying there (also totally false

That’s true, it’s totally false that I said Seanette "never lifted a finger". What I said was that very little was actually done, and that the net result was a deterioration in the condition of the house.

on the day we moved out, that house was, while still squalid, in the best shape I ever saw it, before or since

The house was in pretty good shape the first time you saw it, in 2001. The house was in much better shape when you moved in than when you moved out. (See comment to 11/1/05 blog post from the witness that Seanette tried desperately to prevent from testifying.)

It went downhill after you moved out because you had put stuff in front of EVERY cupboard, drawer and closet, to ensure I could not put anything away on my own. Just as previously, the hired cleaners wouldn’t move those boxes for me, the agency rules don’t allow it.

I'm getting a battle I didn't want and don't need. (sigh)

My health didn’t need the stress either, not the stress of being evicted from my own home, and not the stress of having to sue you to try to get you to do the right thing and chip in toward the costs incurred because of you.


That's called blackmail, hun. Blackmailers KNOW that people don't want confrontation, that's how they choose their victims.

Yes, let’s talk about blackmail and extortion. I promised them 2 months free room and board in exchange for cleaning, with the option (my decision) to extend the agreement if things were going well. I wasn’t satisfied with the amount of cleaning being done, so I didn’t extend it.

I immediately got all sorts of guilt trips that they had nowhere to go and manipulation trying to convince me that, after living on my own for years, I was unable to live alone and would die without them here.

What they didn’t tell me until I made it clear that they were going to move out regardless, was that their church would pay their rent. They wouldn’t have been homeless if I hadn’t invited them to move in.

After the phone call to the police, Seanette made statements that a mutual friend interpreted as "threats". I have never made threats to her.

The most telling proof that this was not as accidental as she wants you to believe is that a few days before, she stopped by here to borrow $80, and said something about making ME "shovel out this place" A couple days later, voila, she figured out how.

If your names weren't on the lease, or tenancy agreement while you lived there, how can you be responsible for her tax affairs?

Despite Seanette’s lies to make you believe it's my taxes, the bills they were asked to pay were the actual fees/fines for this fiasco caused by her lies. If the professional victim admitted that the original bill was over $1200 which I negotiated down to $300,  she wouldn’t get the sympathy she so desperately wants.

Why should I pay for violations that were a result of chores they were asked to do and didn’t (e.g., they were told to move a pile of boxes in front of a window, which the inspector cited as blocking a fire exit – why would I have screamed at them for moving boxes they were TOLD to move?) 

she hasn't tried phone calls in over a year

So, where’s the claimed harassment?

Oh, wait! That destroys your attempt to play professional victim.

noisily opening container of food and snacking during the wait (eating was, of course, banned).

Plaintiff popped a mint into her mouth. Hardly "snacking", except if you need to tell lies so that your online friends will give you tons of sympathy for putting up with the horrid, nasty person who treated you so badly that when your two-month "lease" was up you couldn’t wait to ... bully her into extending it for years.

(DH and I are going out of our way to behave calmly and respectfully)

You were ranting that my witness shouldn’t be allowed to testify because "lawyers aren’t allowed in Small Claims court". When we clarified that he was a paralegal, you embellished on your lie, claiming that he’s a lawyer with his own practice.

The judge could have easily checked to prove that you were lying, if he hadn’t ruled against your outburst by pointing out that no lawyer would risk being disbarred for lying in a Small Claims case. This was the most laughable part of the whole day, the judge and court personnel reacting to your desperate attempt to keep out the testimony of the one person with nothing to gain or lose by telling the truth. Even after the judge told you that there was no reason he could not testify as a witness, you kept trying to convince the judge that he shouldn’t be allowed to speak.

**I have to think that if*—*at this point*—*he was still entertaining any possibility of finding against us, that he would have given us further opportunity to explain ourselves.

At that point, the judge had seen the desperate lengths you’d go to to prevent the truth from coming to light, and probably had had enough of your lies. The documents proved that you’ll twist the truth: e-mails in 2004 discussing that you were to clean the house, and e-mails from 2005 in which you denied that you agreed to clean.