Received from CFIDS.org:
Send greetings of the season to your friends and family and help provide hope and encouragement to everyone affected by CFS.
Visit http://www.cfids.org/cfidslink/2005/seasonal-cards.asp to learn more about these unique cards that support the fight to end CFS.
60% of the purchase price can be considered a tax-deductible donation.
Created exclusively for the CFIDS Association of America, the watercolors featured on the cards were painted by Hallie Kretsinger. Now a high school junior, Hallie first began feeling the effects of CFS when she was in the fourth grade.
Karen speaking: I ordered these cards, and received them just a few days later, so it's not too late to place your order. There's no sentiment in them, so they're appropriate to Christmas, Chanukah, Midwinter ... just rubber-stamp, handwrite or computer-print a label with your choice of greeting.
HAPPY HOLIDAYS, whichever one you celebrate!

2000 research studies prove CFS has physical origins

Biology of chronic fatigue gains focus - The Boston Globe     

      For years, many doctors and others dismissed people with Chronic Fatigue Syndrome as depressed, lazy, or just plain whiny.  Now, a slew of research -- more than 2,000 scientific papers by some counts -- is suggesting that chronic fatigue is not a psychiatric illness, but a nasty mix of immunological, neurological, and hormonal abnormalities.

      Several types of brain scans, for instance, have found different patterns of blood flow to certain regions of the brain in patients with chronic fatigue, and other studies have shown that patients have difficulty in thinking and processing information, and are unable to do several mental tasks at once.  ''There are objective brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe," said Dr. Anthony Komaroff, a chronic fatigue expert and editor-in-chief of Harvard's Health Publications, a division of Harvard Medical School.
    .
      Judy Foreman is a freelance columnist who can be contacted at foreman@globe.com. 
      © Copyright 2005 Globe Newspaper Company.

Hopefully, this puts to rest once and for all the notion that CFS is just depression, laziness, unwillingness to work, or any of the other things I've been accused of.   I have had "off the charts" blood test results, which cannot be faked. 

Certainly no one in her right mind would give up a job paying $50,000+ a year in order to live at the poverty level.  That's the thing that most people don't get -- disability benefits aren't enough to live on unless you have an employed spouse, which I don't, or can live with your siblings/children (which I don't have).  They have the notion that people on disability can afford, on their own income, to take vacations and hire household help, etc., etc.  In fact, most people on disability can't even afford their medications without financial assistance from friends or family.  Horrifying, isn't it?  People on disability are urged to get back to the work force, but if they're single, they have no way of paying for the physical therapy or medication that would allow them to do that.

It's not a life of leisure, it's a life of constantpain and penny-pinching.  With as good a paycheck as I earned most of my life, the government expects me to pay for housing, utilities, groceries, medical care and prescriptions on the equivalent of minimum wage.  Yes, you read that correctly.  All the things that healthy, employed people cannot manage to pay from their minimum wage paycheck, PLUS hundreds of dollars a month for prescriptions, for a wheelchair if you need one, for a housecleaner if you need one, for a car because you can't walk far enough to take the bus....  This is something that needs to be understood by all the people who think that there's any benefit from going on disability; the money isn't that good -- you'd have to be incredibly lazy to think that subsisting on a quarter of your former income is better than working and being able to afford to pay your bills.

Friends and Cities

I've been told (by people living in small towns) that if I cannot get help from my friends and neighbors, it must be because I have demanded too much from them already.  It is simply beyond the ability of small-town people to understand that life in a big city isn't the same as life in a small town.

Here's the proof that the problem is society, not me: From the San Diego Union Tribune
http://www.signonsandiego.com/uniontrib/20051106/news_mz1h06alone.html
"In large metropolitan areas, where neighbors often remain strangers, preparing communities to pull together during emergencies is a challenge. ... In his 2001 book "Bowling Alone: The Collapse and Revival of American Community," Harvard sociologist Robert Putnam concludes that civil society is deteriorating as Americans withdraw from families, neighbors and civic groups."

"Networks of friends today are connected by telephone and the Internet, said Larry Lyon, a sociology professor at Baylor University. There is less need to get to know the people next door. Thirteen percent of those polled here in 2001 said they never spoke to their neighbors, compared to about 9 percent nationally, said Kelly."

This, in fact, matches my experience while living in San Diego, and also while living in Sacramento.  I once lived in an apartment complex for five years and never knew the names of any of my neighbors: they came home from work, went into their apartment, and never came out.  Since they left for work and returned from work at different times than I did, I had no opportunity to cross paths with them.  If I did meet up with them at the mailbox on a weekend and try to start up a conversation, they reacted with suspicion, because, in the big city, we've all been taught to be leery of strangers.

As far as willingness to help someone, 20 years ago, a co-worker was having a difficult pregnancy, and was ordered to bed for the duration.  I couldn't get any one of our co-workers to volunteer to help clean her apartment, or even bring her a casserole.  They were all "too busy" to go a few miles out of their way to drop off some food. One or two muttered that they were glad that she was confined to bed, so they wouldn't have to buy her a baby shower present. 

10 years ago, a much-beloved co-worker had a stroke and was bedridden for 5 years.  In that 5 years, only 2 people from the office went to visit her; I went more often than the other person, who went only once.  After the first greeting card circulated by the office manager, the only time she got a card was if I sent it.  Everyone wanted to know "how's Ginger?," but no one could be bothered to make the call to find out; they were willing to wait for her to call us.  So, it doesn't for a minute concern me that none of my friends from work will offer to help, because they wouldn't lift a finger for Ginger, either, and I know how much they loved Ginger.  Their refusal to help me has nothing to do with my personality, and everything to do with theirs.

One of the neighbors, who loves to garden, offered to do my front yard for the enjoyment.  But she won't do anything else to help; the front yard affects their property value, but the back yard and inside the house don't.  With half a dozen police cars out front, and the police asking all the neighbors if they'd seen me, the whole block was aware that I needed help with housecleaning, but no one offered to help, or even to give me the name of a good cleaning lady. 

Even when I was going out to go to work every day, I could go weeks without seeing any of the neighbors; as sociologist Putnam describes, they isolate themselves in their houses instead of issuing a standing invitation to coffee klatsch.

A women's magazine recently ran an article about a group of friends who stepped in to help when one of them had a medical problem.  The response I received to my e-mail indicated that, in fact, the magazine had gotten far more comments from people saying "I wish" than from people who'd had a similar level of help from friends.  So, I'm not alone.

Those of you who live in small towns where people still connect with their neighbors, thank your lucky stars, and pray that this trend doesn't come your way.

Obviously, my detractors are not interested in learning the truth by reading the comments posted here by people who know me IRL. They've made up their minds about how I am, and don't want to find out they're wrong.

They also don't want to know that I meet (actually, I far exceed) the Ninth Circuit Court's definition of what constitutes "disability". (In Reddick v. Chater, it was made clear that needing to take one day off each week to rest meant she was disabled. I rest more than that.)  There's no legal requirement to be 100% bedridden to be disabled; there IS a legal requirement that you cannot work five consecutive eight-hour days, which I cannot. There IS a legal requirement to "maintain regular attendance", which I cannot.  The Ninth Circuit has been quite clear that "work when able" is NOT a reasonable accommodation under ADA -- you must maintain regular attendance.

I've also been told by a lawyer that I can't ask to be allowed to work at home, or lying down at the office, because that's also not what the ADA says must be offered to me.  So, the people who have legal training and have read what ADA requires employers to provide say that I am officially disabled. The opinions of people who can't tell whether I'm typing this lying down (which I am, because I'm having dizzy spells again) that the ability to type means that I am able to work, are meaningless until ADA is amended to say that the accommodations I need to be able to work are available to me.

The fact that I can work from home a few hours a week does not equate to the ability to work in an office 40 hours a week, any more than the ability to walk two blocks means that I am physically capable of running a marathon, or the ability to pick up a 7-pound cat makes me a champion weightlifter.  Even if I participate in NaNoWriMo, which requires writing about 1700 words a day, that proves only that I can type for half an hour a day, not that I can type as much as would be required in an office job.

Unfortunately, one doctor had the notion that because he had a one-page typed letter from me, I was not legally disabled.  He didn't know who typed it; obviously, if someone else had typed it, it didn't prove I could work.  He didn't know if it took 5 minutes to type or all day; obviously, if it took me all day to type one page, that doesn't prove that I can do enough work to keep an employer satisfied.  All he knew was that I was not 100% bedridden, and without knowing that the LAW says that's not required, he wrote a letter saying that I'm not disabled.  His treatment is most notable for the tests he DIDN'T do -- the ones that would have shown physical abnormalities.  When those tests have been done, they've been positive -- one was described to me as "off the charts".   That one shows infection or inflammation, and heart problems, things that can't be cured with counseling or the anti-depressants being forced on me over my objection that multiple psych evaluations over a period of years have shown no depression.

The judges keep going back to his falsified medical records (he wrote down what he wanted to hear, and not what I told him) and his misunderstanding of what's legally required for a disability determination, and ignoring the other doctors who've given me a slew of restrictions and limitations, done tests that were positive, so that they -- like my detractors -- do not have to admit that CFS is a real, physical, disabling disease and not something that can be overcome with counseling, positive thinking, and forcing myself to get up and do things.  

In fact, forcing myself to get up and do things makes me worse.  Following doctor's orders to exercise my way back to health, I walked every day for a week and got steadily worse until I wound up back in bed, having undone all the progress I'd made.  Just as research has shown will happen if it's really CFS and not depression or fibromyalgia.  

That research report is available at http://www.dynamic-med.com/content/pdf/1476-5918-4-10.pdf  Succinctly, "while our CFS subjects were able to increase their daily activity, they were unable to reach daily levels similar to sedentary controls. ... our daily exercise program was accompanied by a worsening of CFS symptomology." 

I need your help, please!

I need your help, please!

The Disability judge will not believe that I am disabled because I do not have weekly cleaning help, but Social Services says that I cannot have cleaning help until I am awarded Disability benefits.  Catch 22.

In pursuing this with Social Services, I'm informed that In-Home Support Services (IHSS) is a Federal program, the rules are made by the Federal government, and the only way to get help is to get the rules changed.

Because there is no blood test specifically for CFS/fibro, and because the tests which demonstrate real physical problems are only available in a few places in the US (often too far for seriously ill patients to travel), it can be as much as ten years from the time a CFS/FMS patient applies for Disability and the time they are finally approved.  Meanwhile, if they don't have friends or family to help, they may find themselves in the same position as I -- being evicted for being too disabled to clean and too poor to hire a professional cleaner (who may be unwilling to do anything but dusting).

Although the government believes your friends, family and church should help you, I can tell you from numerous conversations with others that I am not the only disabled person who has been refused help from those sources.  They believe that you should be able to get government help.  Everyone points the finger elsewhere, but no one actually does anything useful.

So, I'm asking you to please do something useful.  Please write to your Congressperson and Senators (and if you don't have one because you're outside the US, write to my Senators, Dianne Feinstein and Barbara Boxer) and urge them to revise the IHSS rules so that evaluation of the need for supportive services takes place immediately when SSDI is applied for, and not as much as ten years later when SSDI is finally approved.  My situation proves that in that ten years that CFS/fibro patients are waiting for SSDI, they need support services -- they can't wait years to have their house cleaned or meals prepared or assistance with bathing. 

CFS/fibro are real diseases with physical causes.  One expert in both AIDS and CFIDS has observed that a CFS patient feels every day as badly as an AIDS patient in the last few months of life.  Unfortunately, because CFS was ahead of the technological curve in the 1980s, many disability judges still have the perception that it's fakery, and believe that the person can work, and will return to work if their application is denied.  (Trust me, over the past nearly-six years, I have made repeated attempts to work, and after 2-3 days was already too exhausted to get out of bed.  If I could work, I would, but the doctors say that I cannot, and so does my experience.)  I've run into a series of disability judges who refuse to accept the doctors' statements, because doing so would require them to change their minds about the veracity of CFS as a physical (not psychological) disability. 

As Dr. Starlanyl says, if all blood tests are normal, it may simply mean the correct tests have not been done.  In preliminary results of a poll being run by CFIDS.org, fully HALF of CFS patients have never had their fatigue professionally evaluated.  A Functional Capacity Evaluation wasn't done, their doctors didn't even ask questions about the level of their fatigue.  The problem isn't that the fatigue doesn't exist, it's that no one is putting test results in the medical records to support the patient's claims.

Although IHSS seems to believe that right up until the day you are ruled disabled by a judge, you are capable of taking care of yourself and your home, and magically, overnight, become incapable because you're now eligible for assistance, this is not the case.

Please don't let one more CFS patient be thrown out of a dirty house she can't clean herself -- write that letter to Congress today, urging that In Home Support Services be provided as soon as they become necessary, so that judges will not make the same erroneous determination, that I do not receive IHSS because I do not need help.  Although he would like to believe that I have the ability to do all the cleaning myself, which would prove that I also have the ability to return to work, my current situation proves that I don't have the ability to clean -- what I have is the inability to get needed help ... not from friends, not from family, not from churches, and not from government.