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3.  Patients And Doctors - Rocky Relationship
The simmering distrust of the medical system — and the doctors who work in it — are the topic of my Well column this week, as well as a new Well video. NR commented in The New York Times: "Doctors are drug pushers plain and simple, prescribing to us drugs that are to “prevent” something, with no evidence they can do that. When they do treat illness, again, they are primarily prescribing drugs that have been lightly tested and heavily marketed in a very small segment of the population."
Tara Parker-Pope, The New York Times

4.  Law Professor Debunks Munchausen Syndrome By Proxy Myth
Dr Bill Long publishes the Munchausen Syndrome By Proxy (“MSBP”)/Factitious Disorder By Proxy (“FDBP”) Guide for Judges, Lawyers and Parents. By arguing that it is consistent for the sufferer of the 'syndrome' to be an outwardly caring mother, one who eagerly seeks medical advice and affirms the medical staff, prosecutors can leap over a sometimes yawning evidentiary gap and help the state pry the child away from the parents.
Dr Bill Long

* * *

The same illogic has been used to prove that CFS patients are hypochondriacs -- we actively seek the medical help that will achieve our goal of getting back to work and other activities, and that quest for return to health is turned against us as "doctor shopping".  Well, maybe if the first doctor would know what he's doing and get us back to work, we wouldn't need to consult dozens looking for the one who recognizes that CFS is nothing like depression and doesn't respond to the same drugs.

 

Tiredness turned me into a total zombie

Thanks to Jill Pigott for letting us know about this story in the Worcester
News, "Tiredness that turned me into a total zombie" (30 July 2008).

My letter here

http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3807

suggests that whoever called M.E. "tiredness" has never experienced the difference between the two.

If you want to reply to the letters page, the e-mail address is
letters@worcesternews.co.uk

Cheers
John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith

 

http://www.mefreeforall.org/Display-news.216.0.html?&cHash=f40b2baea5&tx_ttnews[backPid]=107&tx_ttnews[pS]=1217425154&tx_ttnews[tt_news]=2388

(Excerpt)

He was shaky, feverish and weak.

He struggled to keep his balance and even crawling into bed was an effort.

Joe now describes himself as being like a battery that cannot recharge.

He said: “It was just a wipe-out, like having continuous flu. Your head just feels under pressure – you can’t even do a crossword. You don’t want the radio on or the TV. It’s almost like a vegetable state, quite zombie-like. It did feel a bit like a living death.
...

Other symptoms were poor shortterm memory and he struggled to find words to express himself even though he was extremely emotional at times.

There was a continuous ache at the front of his head and aches also developed in his knees and elbows and cramp in his toes, feet, calves and leg tendons.

His throat was constantly sore and his headache often left him feeling physically sick. Even getting out of his pyjamas was a colossal effort.

* * *

Anyone who thinks that CFS is simply "tiredness" has not read the diagnostic criteria.  There's a long list of neurological symptoms (in a prior blog post) that prove it's neither "simple fatigue" nor "depression" -- it looks enough like another, more respected illness, for a number of patients to have been mistakenly diagnosed with "atypical MS".

Perhaps if we could all get on the same page with what symptoms we're talking about when we say "CFS", it would solve some of the problems.  However, the biggest problem is that you can't understand the depth of the bone-crushing fatigue until you've experienced it yourself, to know that it really is not possible to just get up and keep going at that stage.  At some times, I've gotten out of bed and simply crumpled to the floor too weak to stand, or gotten out of bed and passed out ... that's not caused by staying up too late the night before.

Staying on the Job

http://www.mefreeforall.org/Display-news.216.0.html?&cHash=2750d7f0ee&tx_ttnews[backPid]=107&tx_ttnews[pS]=1217425154&tx_ttnews[tt_news]=2398

The moral of the story about Linda Czarnik, who has Chronic Fatigue Syndrome, yet manages to hold down a job as a bartender in a banquet hall (Staying on the job, Asbury Park Press, New Jersey, USA, 30 July 2008) - albeit on reduced hours, with the blessing of her employer - is that, since Linda can do it, anyone with CFS, who does not stay on the job, is an idle malingerer and a sponger on the rest of society.

Well, her story may be one that seems to end happily (if not ever after) but it will be outnumbered many times over by others in which the struggling employee tried to soldier on, did collapse, even after praying for strength, were made worse by it, didn't have such a sympathetic boss, couldn't manage on half wages anyway, are now unemployed, dependent on charity, in despair ... or dead. And that is immoral.

Yours sincerely

Dr John H Greensmith

ME Free For All. org

 

Staying on the job (Asbury Park Press - Asbury Park, New Jersey, USA, 30 July 2008)

BY: DAVID P. WILLIS

(EXCERPTS)

Having a chronic illness or medical condition doesn't mean your work life is over.

Most people who have a disability want to work, Joffee said. Of the Americans with disabilities between the ages of 18 and 64, 32 percent are working, she said, citing figures from the National Association on Disability. Of those who are not working, two-thirds wish they were, she added.

"We all want to be productive," said Dr. Charles Hayne, a family practitioner in Freehold Township. "We all have a basic need to see an accomplishment in whatever we do every single day. I think that is a basic humanquality."

There are no hard-and-fast rules about being able to keep working on the job, said Hayne, of Medical Associates of Freehold. It depends on several factors.

"The major factors are the condition itself and how debilitating it might be and the nature of the individual's employment," Hayne said. 

"There needs to be a combination of meticulous management on the part of that patient's physician and also some understanding on the part of that individual's employer to try to make the workplace less stressful for that individual," he said.

Laws protect people with chronic illnesses at work.

In New Jersey, workers can't be dismissed for having a chronic medical condition unless they can't do the job and another reasonable accommodation can't be made, said Stephen Leone, a Toms River lawyer.

People should try to figure out how agreeable their employer has been to others, Messner said.

Toms River resident Linda Czarnik's boss allowed her to adjust and cut down her hours as a bartender at a banquet hall after she was diagnosed with chronic fatigue syndrome.

Chronic fatigue is an illness that affects at least 1 million Americans. It involves a loss of energy and stamina, among other symptoms, according to the New Jersey Chronic Fatigue Syndrome Association.

Her faith helped to make the job work. "When I stood at work and I thought I was going to collapse because it took so much effort to stand, to move, to breathe, to balance  . . . I can't tell you how many times I was like "Dear God, please let me get through it,' " she said.

She said she was fortunate because she had an understanding boss. "I was really blessed."

Czarnik worked from 1991 to 2004, cutting down her hours as needed. "I did not want to succumb to no work," she said. But when she started to make mistakes on the job, she realized she had to go on disability.

People who have to leave their job can try to find something creative to do within the limitations of their illness, Joffee said.

Copyright © 2008 Asbury Park Press

tinyurl.com/6y67hl

* * *

And there is the key: "an understanding boss". 

In 1987-88, I had an understanding boss who was willing to let me come and go as needed, because he didn't want to losea valued employee.  In 2000, it was the employer's decision -- not mine -- that I could no longer work.  It was not my work ethic that changed, but the employer's loyalty ethic to me.  Different employer, different priority.

As Joffee says, most of us who are on Disability wish we were working.  But we can't find an understanding employer willing to hire us.  Employers are always happy to point a finger at the disabled and declare that they should be working and not collecting government benefits, but they want the competition to hire us, so that their own firm doesn't have to pay higher health insurance premiums or take the risk that we're "an accident waiting to happen".   Until someone mandates that every employer must hire one person off SSDI, it's simply not going to happen.

There are laws that protect the disabled IF they are able to do the job.  But some of us can't do the job.  I can work from bed, but commuting exhausts me, and I cannot sit upright for long because I'll pass out.  I spent several years trying to talk employers into letting me work from home, and getting only excuses why it wouldn't work (some of which were valid). 

Fortunately, I had a computer, internet access, and a saleable skill, so I could employ myself when no one else wanted to take a chance.  But I'm not doing the same job I used to have, and my clients don't know the extent of my disability because I don't meet them in person.  But for someone whose only skill is bartending or cleaning hotel rooms, they can't do that via computer.

The end of the story is that even with determination and an understanding boss, the time came where Linda had to go on Disability. 

And the same is true for most other CFS patients: the time comes when even the most understanding employer can no longer work around your limitations and you have to apply for Disability.  For me, and for Linda, that time came after 13 years of working through the pain, and jettisoning everything else in my life in order to keep working full-time (because there are essentially no part-time paralegal jobs).  But instead of getting a newspaper article written about my dedication to my job, I get only "slings and arrows" from people who can't understand why I didn't keep working.  (Though no one has actuallyoffered me a job, only criticism for not having one.)

And I get no credit for starting my own business, either. 

I'm not collecting SSDI or getting food stamps or Medicaid.  As long as I was applying for jobs (which I was, though no one was willing to hire me when they saw my symptoms), I was legally entitled to Unemployment; when that ran out in Summer 2000, that was the last cent of goverment assistance I got.  Although I am legally entitled to SSDI, I'm not getting it because the judge thinks any employer should feel lucky to get someone with my experience and qualifications, regardless of my symptoms. 

Biological abnormalities separate CFS from Depression

How biological abnormalities separate CFS from depression

JAAPA. 2008 Mar;21(3):19-23.

Erdman KM.

Baylor College of Medicine PA Program, Houston, Texas, USA.

PMID: 18432043 [PubMed - indexed for MEDLINE]

Full text is available for free at:

http://jaapa.com/issues/j20080301/articles/cfs0308.htm
PDF format:
http://jaapa.com/issues/j20080301/pdfs/cfs0308.pdf

Anyone who doubts my assertion that CFS is most definitively not depression should be encouraged to read this article! 

EXCERPTS:

"care must be taken as well to avoid the overdiagnosis of depression in patients who have unexplained physical symptoms. Although comorbid depression is a common emotional response to any chronic illness, some patients with CFS are not clinically depressed. These patients are poorly served when depression is the only diagnosis they are offered."

"Many clinicians, unaware of the volumes of evidence pointing to a physiologic etiology to CFS, may be overdiagnosing depression by default."

The CDC recently declared, “There is now abundant scientific evidence that CFS is a real physiological illness. It is not a form of depression or hypochondriasis. A number of biologic abnormalities have been identified in people with CFS.”6

CFS and depression share certain symptoms, but many others, such as sore throat, lymphadenopathy, arthralgias, myalgias, and postexertional fatigue, are not typical of psychiatric illness. In addition, patients with CFS generally do not have the usual depressive symptoms of anhedonia, guilt, and lack of motivation.12-14 The fatigue of depression seems to be motivation-related and milder than in CFS. When tested, depressed persons score highest on feelings of low self-esteem manifested as self-criticism and feelings of worthlessness and guilt, but CFS patients score highest on physical symptom-related points such as pain, sleep disruption, and lack of energy.15 People with depression tend to be withdrawn and without a sense of hope, whereas people with CFS are typically more proactive about seeking treatment, are hopeful for recovery, and often join support groups and lobby for research funding.16 Striving for improved quality of life is uncommon in depressed persons.

HPA axis abnormalities, including hypercortisolemia, elevated urinary free cortisol, and exaggerated cortical response to corticotrophin, appear in persons with depression.19 In patients with CFS, however, the opposite appears to be true. CFS patients have lower plasma cortisol than do controls and have a reduced response to corticotrophin. In a direct comparison study, depressed patients had the highest levels of circulating cortisol, normal controls had lower levels, and CFS patients had the lowest levels.20 Urinary free cortisol (UFC) excretion was significantly higher in patients with depression than in healthy comparison subjects, and UFC excretion was significantly lower in patients with CFS than in the comparison group in a 1998 study. The CFS patients who had comorbid depressive illness retained the profile of UFC excretion of those with CFS alone, which suggests a different pathophysiologic basis for depressive symptoms in CFS.21

A comprehensive review of neuroendocrine studies in 2001 also confirmed HPA abnormalities in CFS patients.22

* * *

In fact, CFS shares more symptoms with MS than it does with depression, and some patients have been diagnosed with "atypical MS".  Unfortunately, too many doctors hear "tired" and tune out everything else because they've already leapt to the erroneous diagnosis of depression.  Anti-depressants have repeatedly been proven useless against CFS; the only thing that works is anti-virals.

I know there are people who will complain that I overdo this topic, but I'm going to keep beating this horse until every doctor, nurse, psychiatrist, etc. out there repeats after me "CFS is not depression.  The symptoms are different.  The treatment is different."  Only then can I stop lecturing on this crucial subject.  My health was permanently damaged by doctors who didn't know that -- I will not tolerate anyone else suffering the same way.

Entering Relapse

 

There are those who think the problem in CFS is simply laziness, an unwillingness to get a job.

 

They should be here today.  Last week, I took a gamble on going out one day more than I usually do ... I felt pretty good at the beginning of the week and thought I could push it.  And now I'm in relapse.  I spent most of Sunday in the bathroom; I'm running a low-grade fever; I feel physically drained: anyone who didn't know that my diagnosis is CFS would probably give me an amateur diagnosis of "the flu".  Only someone too closed-minded to see past the stigma of the CFS diagnosis could possibly look at the objective symptoms I'm having this week and continue to insist that I'm not sick, just lazy.

 

It should be pretty obvious that if just leaving the house for a couple hours 3 days last week makes me this sick, I cannot possibly be expected to survive a 5-day workweek.  Several times in the past 8 years, I've tried it, and failed.  It's not just that I "think" that I can't work, but that I have proved it repeatedly: every time I have tried to work more than 6-10 hours a week, I have wound up relapsing, with lots of objective symptoms that demonstrate I'm not imagining things, the relapse is for real.  (You can argue with my statement that I can tell I'm entering relapse because I start having weird dreams and nightmares, since the only person who can see my dreams is me, but you can't argue with the thermometer or what I'm doing in the bathroom.)

 

Fortunately, I've been down this road often enough to know that if I'm a good girl and stay in bed for a few days, I'll feel a little better.  Maybe when my friend is here next week I can go out to lunch (but I don't think I'll be up to the outing we originally had planned).  But the house isn't going to be thoroughly cleaned for his arrival, because trying to do that would land me in bed for weeks, and affect my health for months.  I simply will not do anything more physical this week than walk from the bed to the front door to pick up the newspaper, and then back to the bed, because severe restriction of physical activity is the only way to stop this downturn from cascading downhill.

 

A friend did bring me a hot lunch today, thinking (correctly) that if it was delivered hot, I'd eat, but if I had to make the effort to heat food (even a TV dinner) I probably wouldn't feel up to it.  I do have a couple boxes of SlimFast next to the bed, so I'm not going to starve.  I'm just not going to be eating my veggies like I should!  (This is why I have super-deluxe vitamins.)

 

Reading what I'm writing in e-mails or talking to me on the phone, you have no idea whether I'm in bed or upright, and this is a lot of the problem with blogging about CFS.  People imagine what they want to see.  Some have imagined that I'm able to do absolutely everything, including hiking in the mountains, and simply choose not to work, because they don't have the visual image to contradict their impression of what CFS is.  That laptop computers enable people to write e-mails and blog posts while lying fully horizontal in bed doesn't cross their minds until I hit them over the head with it that they have never seen me to know what I do all day ... it's strictly their imagination filling in the blanks of what I do in between posting, and most people's imagination is limited to what they themselves experience.  They get out of bed, sit at a desk to answer their e-mails, and spend the whole day on their feet, so it never crosses their mind that someone else may have to spend most of the day lying down because standing up makes them pass out.

 

 

Willful, Reckless and Irresponsible

JEFFREY TOOBIN, CNN SENIOR LEGAL ANALYST: If people at the hospital put false information in medical records, prosecutors could use that as evidence of just how willful, reckless and irresponsible their behavior was, perhaps amounting to manslaughter.

July 8, 2008, "The Situation Room"

http://transcripts.cnn.com/TRANSCRIPTS/0807/08/sitroom.03.html

It is illegal in this state (and probably in most others) to falsify medical records, yet many CFS patients find false information in their records, whether because the doctor "thought" he heard them say what he wanted to hear to support his diagnosis or because he "willfully, recklessly and irresponsibly" wrote down false information.

In my case, it was statements to justify discrediting the CFS diagnosis that I had received from a CFS researcher (and confirmed by a rheumatologist just a couple months before). By saying I was "self-diagnosed" (instead of acknowledging that my diagnosis was from someone who wouldn’t mistake CFS for anything else) and fictionalizing a long history of taking anti-depressants, the doctor was able to create support for his desired diagnosis of "post divorce depression".

If I hadn’t gotten the records to prepare for a Disability hearing, I never would have known what lies were told about me. Fortunately, the subpoena also brought us copies of the handwritten notes taken during the appointment, and those notes prove that what the doctor dictated for the official records was not what he wrote down as I was giving my medical history. The handwritten notes are accurate; he "willfully, recklessly and irresponsibly" doctored them up after the fact because he didn’t want to accept that there could be anything except depression wrong with a middle-aged divorcee.

He did the same thing to a friend who doesn’t have CFS. As soon as it came out that she was divorced, he diagnosed depression as the root of all her health problems, and refused to do anything to treat those problems except to prescribe anti-depressants.

She saw me in the time frame I was seeing him, and didn’t think I sounded in the least depressed, so she’s not buying that the doctor had any evidence to support his statements that I was "just depressed" other than his own fantasies that middle-aged divorcees can’t get dates and therefore drown their sorrows in excessive eating. Just because he wouldn’t date anyone over 20 or over a size 2 doesn’t mean that either of us was sitting home alone and lonely; we were both dating very nice men who were an improvement on our ex-husbands. Men who are more interested in intelligent women than in brainless barely-legal beauty queens.

I’ll say it for the umpty-umpth time in this blog: ANTI-DEPRESSANTS HAVE REPEATEDLY BEEN PROVEN BY RESEARCHERS TO BE TOTALLY USELESS FOR CFS. Depression and CFS have radically different symptoms and test results. There are, unfortunately, still doctors who think they’re the same thing, or refuse to accept that CFS is a legitimate physical condition at all. Eventually, their "non-compliant patient" who "refuses to get well" either completely loses faith in doctors and refuses to ever see one again (like Sophia Mirza) or hears about a new doctor who does listen and try to help. If your doctor refuses to prescribe anything but anti-depressants and/or counseling, it is in your best interest to run away. The life you save will be your own!

Get a Job

From this morning’s paper:

Only 5% to 10% of the general population can be considered "self-actualized artists" said Matt Bedwell. The folks at Southside Art Center on Elder Creek Road, where Bedwell is a program director, are no different. The are adults with developmental disabilities who paint, sculpt, weave and make music. But not all the do stands out as art. Only a few of the individuals produce work that clearly is. Sal Perez is one. Much of his work is based on the traditional Mexican Catholic iconography. Perhaps his best works are his ceramic interpretations of the traditional Virgin de Guadalupe. His explanations of his work are slow and halting because of his disabilities, but his engagement with clay is clear. Angelina Torrente is a prolific painter with repetitive motifs. Her "cats" are boxy and humanoid, with bold stripes. To some, they may be childish, but her authoritative use of color and line seem professional. Oddly, she sometimes adds "Get a Job" to her paintings. Because they receive SSI payments, they can’t actually earn a living with their art, but it is sold at New Visions Gallery in Country Club Plaza, and they get a cut, to spend as they wish.

http://www.sacbee.com/city/story/1101343.html

* * *

It’s not in the least "odd" that someone who is disabled adds "get a job" to paintings. I can’t even begin to count how many times I’ve been told to "just get a job" by people who think that the only problem is that I haven’t tried hard enough.

The goal of most disabled people is to get a job. But the goal of most businesses is to keep expenses to a minimum. If hiring a disabled person is going to increase their insurance cost, they’re not interested. I’ve had potential employers tell me to my face "you’re an accident waiting to happen", and other disabled people have reported hearing the same thing as an excuse not to hire them.

I’ve even applied to organizations that help the disabled get jobs. One told me I had the wrong disability, they only help the mentally retarded, not the physically disabled. Another sent me a letter that boiled down to "good luck getting anyone to hire someone as impaired as you are." That’s when I stopped wasting my limited funds on stamps; if even they wouldn’t hire me, then no one will. Even the people who make a career of placing the disabled in jobs told me to give up hope.

Yet, according to the judge deciding whether I get Disability benefits or not, I could get a job if I only tried harder. He’s convinced that people would be beating down my door trying to hire someone with my qualifications and experience, if I’d only send out some applications. And, in fact, when I was sending out applications, I got nearly every interview I applied for. The problem was, when I showed up for the interview, so did my symptoms; it was apparent to the employer that I was not a healthy person, and the interviews focused primarily on my obvious disabilities and not on my abilities. Let’s be realistic, no one is going to hire someone who admits that she’s only able to do a fraction of the work of the other candidates for the job. It doesn’t matter how much experience and how good her qualifications – unlike "of counsel" lawyers (rainmakers), paralegals are not hired to rest on their laurels, they’re hired to work hard 8+ hours a day. Some days, you don’t get a chance to sit down ... much less lie down before you pass out or take a 3-hour nap to have the energy to get through the afternoon.

The problem is not that disabled people need to be told "get a job" but that an employer needs to be told "you must hire him/her". And, in the opinion of a former State Voc Rehab placement counselor, they couldn’t find a placement for me because I’m not well enough to work.

My SSDI checks – if I ever get them – will be less than a minimum wage paycheck. I’d like nothing better than to get a job (with medical insurance!) but the reality is, no one wants to hire someone who can only work 6-10 hours a week and can’t tell them in advance what days she’ll be well enough to come in.

And the same goes for most disabled people. They would love to get a job with good medical insurance, but something about each disability makes employers wonder if they can do the job as well as a non-disabled person, and even though it’s illegal to discriminate against someone because they have a disability, employers will find other reasons to hire someone else. No two résumés are exactly alike, and they’ll find something on the other person’s that differentiates her from you: you may never need to speak Chinese on the job, but it’s something she has that you don’t that allows them to say that she was the better candidate. (Because, you never know, some day they might get a client who only speaks Chinese.)

Surviving (or not) on Minimum Wage

Surviving (or Not) on Minimum Wage

http://abcnews.go.com/Business/story?id=5441487&page=1

If people cannot survive on minimum wage, then how are they expected to survive on disability benefits, which are even less?!

In addition to all the things the young, healthy stereotypical minimum wage worker pays for, disabled people need to pay for all manner of medical care (you can’t get Medicaid till you’ve been on SSDI for two years), prescriptions (which I’m told Medicaid doesn’t cover), and personal assistance (I need a house cleaner, and I’m not allowed to drive due to uncontrolled fainting spells so I also need help with errands). Some people complain about the fact that our local bus fare has gone up to $2 (and is going up again); they don’t realize that Paratransit costs even more per ride.

The last I heard, our local waiting list for subsidized housing is ten years long. That’s no help for someone who is disabled and unable to work NOW; if you ask among the homeless population, you’ll learn that a lot of them are disabled and living in the streets because rent – even shared – is more than they can afford from their disability checks.

My late best friend, who was disabled after only a few years in the work force, was getting about $300 a month; another gets only $645 a month and tells me that she would only get $10 a month in food stamps which is not worth the wear and tear on her body to stand in line at the welfare office to apply. Like me, neither of them had the benefit of a husband to help with the bills that their disability check doesn’t cover. One was blessed with a mother who had enough money to pay her rent; the other has lost her parents and thus begs and borrows from friends and relatives every month.

Even my SSDI check, if I ever get it, would be less than a full-time minimum wage paycheck, and I worked for 30 years, most of it near the Social Security tax cut-off, which means my check is about as big as it’s gonna get for anyone. When I first sucked up my pride and applied 8 years ago, I did the math, and the check was about $200 less than my essential monthly bills; it wasn’t enough to make ends meet, but it would slow the drain on my savings account so it would be that much longer before I had to ask friends and relatives for help. At this point, everything having gone up substantially except the amount of SSDI I’d be getting, I’m afraid to do the math and find out how much the shortfall would be.

If you’re believing the talk show hosts who rant about people too lazy to work living the high life on SSDI, you’d better do some research into how much you’d be getting, and figure out if you’d be able to make ends meet on that pittance. Unless you have a husband with a really good job, or are independently wealthy, my guess is you can’t. http://www.ssa.gov/planners/calculators.htm can tell you how much you’d be getting each month if you became disabled today.

Yes, I have a friend on SSDI who goes on an annual winter vacation to somewhere warm ... because her mother pays for it rather than have her suffer extreme pain in the cold. I have a friend on SSDI who goes to expensive concerts ... because friends pay for her tickets in return for favors she does for them throughout the year. Those things aren’t in the budget if your only household income comes from SSDI.

More common is a local lady I met at a craft fair. Knowing how long these items took to make, I was stunned by the low prices on them: barely more than the cost of the kit to make them. She acknowledged that her goal was simply to break even. Several years earlier, someone had given her a $50 gift certificate to Michaels, and she used that to start her "business". If she put a higher price on her crafts, she wouldn’t sell them, and wouldn’t be able to afford more craft supplies to entertain herself for the next year. She loves to craft and can’t afford the supplies from her SSDI checks, so she sells for break-even prices only because it’s preferable to not being able to do any stitching at all.

Private Funding Opportunities for CFS Research

I'm not set up to take donations for this blog, but I would urge my readers to make donations to support research.  With CDC/NIH giving True CFS short shrift, and polluting their research pools with psychiatric patients who don't actually have CFS, the bulk of the useful research into post-viral CFS has been paid for with private dollars.  Your contribution can help get a million Americans the cure that will allow them to go back to work.

[As Craig points out, there is no online donate button at the CFS Research
Foundation website.  But one can donate online  at
http://urlcut.com/donatetocfsrf  
Here i.e.
http://www.cafonline.org/apps/charities/charityprofilelink.aspx?MainId=64337&SubId=146003&Source=CAF&CharityName=CFS+Research+Foundation .
There are, of course, other groups in the US, UK and around the world raising
money for research. Tom]
------------------------------------------------------------------------------------------------------


http://www.cfidsreport.com/News/08_Privately_Funded_CFS_Research.htm

----------------------------------------------------------------------------------
Private Funding: Opportunities for assisting CFS Research are Numerous and
Diverse
----------------------------------------------------------------------------------


(Craig Maupin at http://www.cfidsreport.com ) - April 2008 - When people think
of medical research, they often think of government agencies. In the United
Kingdom, the Medical Research Council (MRC) funds a large amount of medical
research. In the United States, the Centers for Disease Control and the
National Institutes of Health also fund medical research. Most mainline
advocacy for chronic fatigue syndrome (CFS) has often focused on increasing
the funding levels at these agencies.

Yet, government funding is only a small portion of the total research monies
spent on medical research. As of 1995, the top twenty-five charitable
foundations for a variety of diseases in the United States funded a healthy
total of 1.2 billion dollars of grants (ref: aaas.org). In the United Kingdom,
the Association of Medical Research Charities estimates that its members spent
roughly £791 million on medical research in 2006/7. These private efforts have
produced remarkable results. Privately funded research has delivered a
staggering number or research breakthroughs, from breakthroughs for diabetes,
to Parkinson's Disease, to cancer.

Chronic fatigue syndrome is developing a network of foundations and charities
focused on privately funded research. Unbound by politics or agency
directives, these foundations are free to pursue a wide variety of research
projects for CFS. In fact, many advocates believe that privately funded
research is a must, if understanding of the biology of CFS is going to
progress. According to Dr. Neil Abbott of ME Research UK, biomedical research
for CFS, a predominantly woman's illness, will be unlikely to occur in the U.K
without private funding. Abbott says that Freedom of Information Act requests
have yielded evidence that the MRC rejected 30 biomedical applications for CFS
research.

The good news is that opportunities for families, friends, and communities of
those who suffer from CFS to fund private research abound. Several foundations
in both the United Kingdom and the United States are dedicated to CFS
research, focusing on identifying biomarkers and scientific understanding of
CFS. In fact, these foundations are now considered by many clinicians,
advocates, and researchers alike to be involved in the cutting-edge of CFS
research.

The CFS Report has compiled a list of foundations that sponsor private
research. These foundations have contributed to strides in CFS research.


1. The CFS Research Foundation -- The CFS Research Foundation is best known
for funding the research of a multidisciplinary team led by U.K research Dr.
Jonathan Kerr, but they have been around since the early 1990's, funding a
wide variety of projects. M Kerr's team, to date, has already produced
remarkable results. In April 2008, Kerr published the first-ever study looking
at the complete genetic picture of people with CFS. He found a distinct
genetic profile for CFS, as well as 7 unique subgroups that merit further
investigation. The choices made by the foundation's scientific advisors and
directors have, thus far, been excellent.

The CFS Research Foundation has a simple, yet well-conceived, website
(http://www.cfsrf.com ). At their site, information is presented on how
donations can be made to fund Kerr's research, as well as any other
applications for CFS research that the foundation may receive. The Foundation
lists its scientific advisors and directors. Any research findings that result
from their grants are also posted. The donation forms are not geared toward
assisting U.S. or international donors, and the foundation currently lacks the
ease of online giving through credit card or Paypal.


2. ME Research UK. The United Kingdom is also home to our second research
foundation on our list, ME Research UK. ME Research U.K not only funds
research, but they actively stimulate interest in CFS research within the
scientific community by disseminating information and holding conferences. The
foundation benefits from wise, savvy and consistent leadership.

ME research UK has a website full of information on CFS/ME and their efforts.
http://www.meresearch.org.uk/  The website also features many ways for donors
to donate, featuring secure online donation in international currencies.



3.   The Whittemore Peterson Institute - Our third foundation hails from the
United States, where announcement by the Nevada legislature of a new research
center in the heart of Nevada's Reno countryside produced waves of optimism in
the CFS community in 2007. The research institute, headed by philanthropist
Annette Whittemore, whose daughter suffers from CFS, aims to provide funds for
new research and stimulate interest in CFS among physicians and researchers.
Well-known CFS clinician Dr. Daniel Peterson and a docket of advisors assist
the foundation in steering research into productive areas of inquiry. The
Whittemore Peterson Institute has a website that features easy donations by
credit card or Paypal in denominations of U.S. dollars. The link of for the
Whittemore-Peterson Institute is as follows. http://www.wpinstitute.org/



4. The HHV-6 Foundation -- Based inSanta Barbara California, the HHV-6
Foundation was founded in 2004 by Annette Whittemore and Karen Loomis to
"encourage scientific exchange between scientists and to provide pilot grants
for promising scientific and clinical research". The foundation is focusing
its efforts on developing better tests for HHV-6, a virus that may play role
in CFS. Their website, http://www.hhv-6foundation.org , offers complete
information on HHV-6, their directors and scientific advisors, and relevant
research. The site also features a online donation form, featuring easy
donation via Paypal account.



5. The CFIDS Association of America - Final on our list is the CFIDS
Association of America. The CAA has mostly been known for its political
advocacy, requesting increases in funding from federal agencies charged with
medical research. However, the CAA recently hired Dr. Suzanne Vernon, formerly
of the Centers for Disease Control, to head up a privately funded research
effort in the U.S. However, at this juncture, little is known about Vernon's
philosophy toward CFS, and the Association's past support of the CDC's
stress-based model for CFS is controversial. However, should advocates see
research funded by the CAA that falls outside the typical research funded by
the CDC, the CAA could be a revived player, given Vernon's stature, abilities
and contacts. The website for the CAA is www.cfids.org.

Favorable Ruling for the Worker

Favorable ruling for the worker in this US Supreme Court Erisa LTD Case:

http://www.scotusblog.com/wp/wp-content/uploads/2008/06/06-923.pdf

JUSTICE BREYER delivered the opinion of the Court.

The Employee Retirement Income Security Act of 1974
(ERISA) permits a person denied benefits under an employee
benefit plan to challenge that denial in federal
court. 88 Stat. 829, as amended, 29 U. S. C. §1001 /et seq./;
see §1132(a)(1)(B). Often the entity that administers the
plan, such as an employer or an insurance company, both
determines whether an employee is eligible for benefits
and pays benefits out of its own pocket. We here decide
that this dual role creates a conflict of interest; that a
reviewing court should consider that conflict as a factor in
determining whether the plan administrator has abused
its discretion in denying benefits; and that the significance
of the factor will depend upon the circumstances of the
particular case. See /Firestone Tire & Rubber Co. /v. /Bruch/,
489 U. S. 101, 115 (1989).

Goodbye Full Accessibility (ADA changes)

Good-Bye Full Accessibility - Information Bulletin #250 (6/08)

In 1990, the disability community, Congress, state officials and businesses made numerous compromises to obtain the passage of the ADA. Despite these compromises, then President Bush, disability leaders and Congress trumpeted the eventual full accessibility of public and private facilities. Sometime in the future, people with disabilities would achieve equal opportunity with nondisabled and full accessibility would be achieved. Since 1990, we have seen some progress - curb cuts are now more the norm; ramps provide access to some stores and businesses (definitely not in everyone); some public swimming pools, playgrounds, and governmental buildings provide a degree of accessibility (often begrudgingly); sports venues are more accessible.

However, by and large, neither the governmental entities (Title II of the ADA), nor private business entities(aka public accommodations) (Title III of the ADA) have taken the initiative on their own and said "oh, Congress has made disability a civil right, and we will do the right thing and make our facilities and programs accessible."

Rather, progress has been slow, often requiring disability advocates to take the initiative and demand governmental and business entities to comply with the 1990 law and not make more compromises. The process is slow because disability advocates may not exist in a community, or they get frustrated that change is difficult.

On June 17, 2008, the Department of Justice issued proposed rules to the ADA's federal regulations which, if adopted, will significantly undercut the original 1990 compromises and will impose numerous regressive restrictions. Many of the proposed rules will ensure that full accessibility will be, at best, postponed indefinitely. These proposal rules, together with all the background information, cost estimates, commentaries etc., total about 1000 pages!

This Information Bulletin will address only the Title II requirement of "program accessibility ... when viewed in entirety" and the Title III requirement for removal of "readily achievable" barriers from existing facilities.

Here are two proposed changes: Title II - Section 35.150(b)(4) and (5). The current "program accessibility" regulation requires a public entity's programs and services be accessible, when they are "viewed in their entirety."

Re the proposed rule "Existing play areas and recreation facilities." If a public entity has "multiple play areas as part of its program," for program accessibility "only a reasonable number but at least one of such play areas would be required to undertake structural modifications to provide access for individuals [i.e., children] with disabilities." The "reasonable number but at least one" rule applies also to swimming pools and state parks. Does DOJ forget that "program access" for the past 18 years already implicitly required "at least one"accessible facility, or the program in its entirely would not be accessible? With the proposed rule, wouldn't public entities shoot for the minimum - one, regardless of the changes that might make many or all of the play areas accessible? DOJ asks if the "reasonable number, but at least one" is workable, or should DOJ provide a list of factors that a public could use to determine how many of the existing play areas or swimming pools to make accessible.

Folks - these are our children with disabilities! DOJ asks if play areas should have a "safe harbor from compliance with the applicable requirements in the 2004 ADAAG." This means that some play areas that might be in compliance with local standards could be exempt from ADAAG standards that presumably require greater accessibility.

Does anyone think DOJ would have proposed a "safe harbor" to end discrimination based on race? gender? How can there be a "safe harbor" that perpetuates discrimination?

Doesn't DOJ remember that in the late 1980s the U.S. Department of Transportation proposed a rule that a public transportation program would have a "safe harbor" if 3% of its expenditures went for accessibility. The disability community, and the Third Circuit recognized in its ADAPT v. Skinner decision, recognized that limiting accessibility and integration to "safe harbors" are an anathema to civil rights, the same as Congress and President Bush in 1990.

Related to the problem of a "safe harbor" is the DOJ question "what is the 'tipping point' at which the costs of compliance ... would be so burdensome that the entity would simply shut down the playground?"

The ADA is a civil rights statute that is supposed to ensure for disabled folks the equal opportunity and the same benefits as nondisabled people. But let's get real! Does anyone know of any public entity in the entire country that has closed down any public playground or swimming pool becauseof inaccessibility? DOJ wants to hear if "existing play areas less than 1,000 square feet should be exempt" from accessibility requirements. This size was chosen because of an assumption that such small areas represented 20% of the play areas located in public schools. Great! Disabled children in those schools could be effectively kept off the play areas, presumably like they are being kept out of mainstream classrooms. Every small neighborhood tot lot would be exempted. The rule making asks if 50% of monkey bars, sliding boards, and other "elevated play components" in playgrounds should be exempt from accessibility. DOJ asks if "additional ground level play components" should be substituted for the "elevated play" components.

Title III - Section 36.304. The current regulation requires removal of barriers in public accommodations when it is "readily achievable" to do so. It is important to remember that the existing federal regulations require removal of barriers only when it is "readily achievable" - which on a caseby case basis ensures that only reasonable modifications will occur. "Safe harbors" will exempt from barrier removal even those situations that are "readily achievable" to be made accessible.

A small business will receive a "safe harbor" if it spends in a given year one percent of its gross revenues on barrier removals. Advocates who have been frustrated since 1990 asking businesses to "remove barriers" by building a ramp or making a bathroom accessible, now will have the fun of arguing about a businesses "gross revenues" in a given year (what, Mr. Businessman, is your basis for accounting?) and the costs of any alleged barrier removal the business claims it has made. Should advocates ask if the business took a tax deduction or received a tax credit for the barrier removal? If it claims it did, should the advocate take their word or request to read their 1040s? Then come back the next year and start the entire process again on another inaccessible element. And we thought it was difficult to get a ramp with the existing regulations.

The proposed regulations also question whether to fully enforce the Access Board's guidelines for stages, auditoriums, witness stands, assistive listening systems, golf courses, service animals, golf cars, mobility devices, auxiliary aids, captioning, video interpreting services and other areas.

You have 60 days to submit comments. All comments must be sent by 8/18/2008. Refer to Documents ID DOJ_FRDOC 0001-0025 (Title III, Public Accommodations) and DOJ_FRDOC-0001-0026 (Title II, Governmental Programs). You can find these documents at the following web address, as well as submit your comments on-line by going to http://www.regulations.gov.

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com  with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com  or call 215-627-7100.

Facing Life's Traumas to Help Others

Reply to an article about Lynne Garnham, who has written a book after being
diagnosed with M.E. as well as long-standing stress-related illnesses (link
below my signature).

I am concerned that, the way this is written, it will be assumed that M.E.
ALWAYS a stress-related, or psychiatric, illness.

If anyone has the energy to reply, you should go to the online form here
http://www.peterleemail.co.uk/contactus.aspx
tick the box for Editor and make sure you say it is a letter intended for
publication.

Cheers
John
drjohngreensmith@mefreeforall.org

*Peterlee Mail Letters*.

Lynne Garnham is a very exceptional example of a person who has been
diagnosed with M.E. (*Myalgic Encephalomyelitis*) on top of her
long-standing stress related illnesses of anxiety and agoraphobia (*Facing
life's traumas to help others, Peterlee Mail, 17 June 2008*).

The vast majority of people with M.E. started with a viral infection, like
glandular fever, chicken pox or pneumonia; or had a vaccination such as TB,
hepatitis, or polio; or were poisoned by some chemicals, perhaps in the
environment, or due to crop spraying but they did not have a history of
psychiatric illness.

It must not be assumed, therefore, either: that M.E. has a psychiatric
cause, or that M.E. causes symptoms of any psychiatric illness, for example,
clinical depression.

So, while a process of deconditioning, in which Lynne faced her fears, may have helped her (though it doesn't work for everyone), it would not be suitable for M.E. sufferers - what fear have they to face? - and it is illogical to hope that Cognitive Behaviour Therapy (CBT), developed for treating people with psychiatric illnesses, such as anxiety and depression,
will be of any value to them.

There is no evidence that CBT has any lasting benefit, without relapse, for people with M.E. Contrary to the conventions of research, trials are still
going on while CBT is already recommended, a practice that would be quite
unacceptable, for example, in drugs testing.

The more intelligent, scientific, approach would be to properly publicly fund biomedical research, to better understand the cause of M.E. in the hope of suggesting an appropriate treatment, instead of adopting CBT as a panacea, as this government has done because it is fashionable and cheap, albeit unproven and generally ineffective.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

Facing life's traumas to help others (Peterlee Mail, 17 June 2008)

http://tinyurl.com/4nv2yf

 * * *

Too often, erroneous psychiatric explanations are given for the symptoms of CFS.  I started my first business at 14, have always worked, yet was written off by one doctor as "you resent your husband making you work".  His solution was that I stand up to my husband and tell him that I wanted to quit.  No amount of telling the doctor that I had no intention of quitting and wanted him to make me well so I could continue to work had any effect.  As far as he was concerned, I was mistaken if I thought that the "flu" I had in February was responsible for the symptoms I was having in November -- he knew that my symptoms were entirely caused by an argument with my husband. 

A dozen years later, the same symptoms that were supposedly caused by being married were now related to being divorced and would go away if I could just find someone to marry me.  Again, the statement that I had a flu-like illness, and was diagnosed by a virologist, was discounted because it was easier to diagnose a psychiatric problem and hand out anti-depressants than to search out the evidence of a post-viral neurologic condition.

If anti-depressants and psychotherapy are enough to get you back to work, you don't have CFS.  It's that simple.

CFS is not caused by disliking your job or fear of exercise.  It is demonstrably caused by a virus (see prior post on the Viruses Conference), and the only two drugs that have shown any promise in treating it are both anti-virals.

However, there are plenty of doctors who will erroneously diagnose any case of chronic fatigue as CFS, unaware that there are specific diagnostic criteria ... it's more than just feeling tired.  And therein lies the problem -- they issue a misdiagnosis, treat the patient for whatever is actually wrong (depression, blood pressure, thyroid, etc.), and then tout that they have cured CFS when their treatment is successful.  But then the CFS experts who know that their patients have True CFS try the same treatment and it doesn't help, because it's not the right treatment for what their patients have -- it's the right treatment for thyroid or depression or celiac disease.

In the early days of CFS, there was a doctor who got nationwide media exposure for his innovative method of treating CFS patients with medication for low blood pressure, and the suggestion was made that we could do the same at home by increasing our consumption of salt.  Well, even swallowing salt by the spoonful did not cure my problems, and when the CFS experts went to try it on their patients, they found that some of the certified post-viral CFS patients already had high blood pressure and did not need drugs to raise their blood pressure to normal levels. 

Conclusion: this doctor misdiagnosed his patients, mistakenly calling LBP "CFS" so that he could cure them and get his 15 minutes of fame.

Patients' Presence Counts (and other NICE case info)

PATIENTS' PRESENCE COUNTS: NICE - AUTUMN JUDICIAL REVIEW.

Dear All,

The 17 July 2008 UK High Court decision on the NICE ME/CFS Guideline
Judicial Review is a major breakthrough. From the very bottom of my heart:
thank you to all who worked quietly and diligently behind the scenes, gave
of their time, energy, money and support and thank you very much to those
who enabled me to be there. We have a long way to go and a lot to do in a
short time before we have a shot at achieving success but: hope is now
restored. Whilst outcomes are of course not guaranteed, for the first time
in the UK, even though it is on narrow points of procedural law and not on
wider medical science issues, we at long last have the prospect of a fair
hearing before an institution with real power to act in our favour.

Now the really important bit for the hearing itself... the first thing both
counsel and our solicitor said yesterday was they felt the fact that the
court had been full of patients had a significant impact upon the outcome.
Justice Cranston clearly expressed compassion towards ME patients generally
as well as the litigants in particular. Again, this morning, I have been
contacted by our solicitor to say that patient support prior to the hearing
and in the public gallery was crucial. I believe therefore that it is
absolutely imperative our solicitors now try to secure a courtroom with a
large public gallery and we/you all work to absolutely pack it with
well-behaved (that part is very important) and informed patients and carers
for both days of the autumn hearing. If patients cannot attend then send a
relative or friend in your place. Even if so many people attend that some
have to wait outside in the hall this will send an absolutely invaluable
message to the Judiciary, press and beyond. We simply have to let the
establishment know that we will not go away and we will not stop struggling
until we get proper science, proper medicine, proper care and nothing short
of justice.

PLEASE can folk start organising to attend the hearings now? Spread the word
as widely as possible within the ME community and friends and family. It is
impossible for me to be involved much in this aspect of things myself as I
have to focus on matters legal. Why not consider organising discounted
block-booked overnight accommodation at a nearby travel-lodge or student
residences: perhaps with a coach or two to ferry folk from accommodation to
the court on both days? This is highly doable and would be self-financing by
the individuals. The importance of this hearing cannot be overemphasised.
Please therefore; someone or some team of individuals please get organising!
I know it is a lot to ask but we have got to garb this opportunity one
hundred per cent.

We will let you know dates, times and room number as soon as we know them. I
am afraid that the Royal Courts of Justice building is not particularly
disabled-friendly but I managed to get around in a wheel chair and we should
not be put off. Please, please, please DO go to the hearings if you can and
if you cannot please send someone in your stead. Information regarding court
location, access and services can be found at the web address below.

Many thanks and very best wishes to you,

Kev Short.

http://www.hmcourts-service.gov.uk/cms/list_admin.htm

[Permission to Repost].
- - -

NICE JUDICIAL REVIEW & MEDIA COVERAGE.

Dear All,

I have been advised not to give media interviews prior to
completion of the NICE Judicial Review hearing this autumn. Advice
that I am more than happy to take and all media enquiries on NICE/JR
etc should be directed to our solicitor, Jamie Beagent, at Leigh Day
& Co (see below). I would be most grateful therefore if any of you
are contacted by the media for my personal contact details that you
do not give them out and instead direct the media to the solicitors.
I have been repeatedly contacted by the local BBC. I have also had a
local newspaper reporter knocking on my and my neighbours' doors last
night and wish to avoid this as I have a lot to do and am struggling.

jbeagent@leighday.co.uk
Leigh Day & Co, Priory House, 25 St John's Lane, London,EC1M 4LB.
Tel: 020 7650 1248/020 7650 1240 / Fax: 020 7253 4433 /DX 53326
Clerkenwell
http://www.leighday.co.uk/

Many thanks and best wishes,

Kev Short

- - -

A summary of proceedings that took place in the High Court on Tuesday 17 June 2008 is available in the news section of the ME Association website:

http://www.meassociation.org.uk/content/view/590/70

The news section also contains press items covering this important legal case.

- - -

Jamie Beagent (our solicitor) and (separately) Ian Gibson MP et al were interviewed on: BBC Radio Norfolk:
'Breakfast with Stephen Bumfry'.  Programme: 7am to 10am, Thursday 19 June 2008.

Unfortunately this radio item on ME/NICE JR is not in one block but is scattered throughout the programme.

The main piece is at:
0:20:34-0:29:26 (approx) (Kev Short and Doug Fraser's solicitor, Dr Ian
Gibson MP and a producer (?)
on the program whose nephew has it - E-mail from him read out).

https://download.yousendit.com/75E3CC9025578384

Tom Sheridan, Power broker for those without a voice

Source: The Hill
Date:   June 11, 2008
Author: Roxana Tiron
URL:
http://thehill.com/business--lobby/powerbroker-for-those-without-a-voice-2008-06-09.html


[Business & Lobbying]

Powerbroker for those without a voice
-------------------------------------

Before he took calls from Bono and counted Sen. Edward Kennedy (D-Mass.) as
a friend, Tom Sheridan was a New York social worker getting his feet wet in
Washington with a tough decision to make.

A nascent AIDS advocacy organization in the late '80s asked Sheridan three
times to start the first AIDS lobby in the United States. Sheridan, who at
the time was not openly gay and feared the stigma associated with the job,
repeatedly said no. He turned to his grandmother, a devout Catholic, for
advice, expecting that she would reassure him of his decision.

He didn't count on Mother Teresa.

The famous humanitarian had recently opened an AIDS hospice in D.C., and
Sheridan's grandmother reminded him of this during their conversation. "If it
is good enough for Mother Teresa, why wouldn't it be good enough for you?"
she said at the time. Sheridan listened to his grandmother's wisdom and took
the job with the AIDS Action Council , representing a turning point in his
career as a master coalition builder for social causes.

"There is a great passion he has about doing the right thing," said Rep. Rosa
DeLauro (D-Conn.), who met Sheridan more than 20 years ago during Walter
Mondale's presidential campaign. "He wants to give a voice to people that do
not have a voice. He is indefatigable."

AIDS now is just part of Sheridan's portfolio. Sheridan opened his own firm
in 1991, after several years of what he calls the "best and worst job," at
the helm of the infamous AIDS lobby - a coalition of 140 organizations named
NORA, short for National Organization Responding to AIDS . Sheridan to this
day recalls the job as being "emotionally and physically draining." By 1990,
he was going to at least three funerals a week. He had come out, but felt he
needed a break.

At 30, Sheridan quit the AIDS lobby and spent a month in Africa, climbing
Mount Kilimanjaro, a lifelong dream. When he returned, Sheridan - who was
instrumental in passing the Americans with Disabilities Act (ADA) and the
Ryan White CARE Act - decided that he would never again take on one single
issue.

The Sheridan Group now has a varied portfolio including: the American Cancer
Society; the Chronic Fatigue and Immune Dysfunction Syndrome Association;
Oxfam; and Bono's Debt AIDS Trade Africa (DATA) organization, as well as the
ONE campaign to end global poverty.

Sheridan does not take naturally to stars. The first time Bono called him,
Sheridan thought he was talking with American rocker Jon Bon Jovi. He asked
the Irish legend why a singer from New Jersey would take such an interest in
Africa.

Unfazed by Sheridan's pop culture faux pas, Bono convinced him of his
dedication to the cause. Bono reached Sheridan through Bobby Shriver. Sen.
Edward Kennedy, Shriver's uncle, recommended Sheridan for the endeavor.
Kennedy had worked closely with Sheridan on the ADA legislation and other
health-related issues.

"A lot of celebrities use Washington to distract from other things,"
Sheridan, 47, said in an interview at his office far from K Street. He calls
the area NoMa (North of Massachusetts Avenue) -- his own "New York-ism" for
the still up-and-coming neighborhood by the Washington Convention Center.
"The issue is not getting served, but the celebrity is served by the issue,"
he added. "Bono was not looking to distract the public."

Bono, Sheridan said, comes to Washington several times a year without fanfare
and walks the Capitol hallways armed with facts and concrete results of
previous congressional funding or help. "You can't be an advocate for the
world's poorest people and not show a little humility," Sheridan said of
Bono, who more often than not travels to the Hill without a posse.

Sheridan is now working with singer Ricky Martin on another challenge: human
trafficking and slavery, an issue less talked about, and without an actual
advocacy organization behind it. The Ricky Martin Foundation launched a
campaign against human trafficking, but without Sheridan's experience the
effort may not easily attract political capital. "We are doing for them what
we did for the AIDS lobby: We are building a coalition," Sheridan said.

Those who know Sheridan say that coalition-building is his forte. "Tom is a
tremendous strategist," said Dan Smith with the American CancerSociety
Foundation. "Tom is a master coalition builder; he has a wonderful gift in
trying to find common interest in people."

Sheridan's rise to fame in the non-for-profit community could not have been
more coincidental. Sheridan started out as a social worker in New York with
responsibility over a group home for mentally disabled adults. He quickly
realized that not even zoning permits could be obtained without political
astuteness and decided to go to Washington, the heart of politics.

He started with the National Association of Social Workers in his early 20s,
where he was in charge of setting up a political action committee. He later
joined the Mondale campaign for two years, earning $15 a day. After Mondale's
defeat, Sheridan lobbied for the Child Welfare League . There, he learned
about "border babies": infants born to mothers with HIV who were dying, or
who themselves had HIV. The New York foster care did not know how to manage
these children at a time when everybody was "desperately afraid of the
virus."

Through Sheridan's lobbying, Congress passed legislation to create specialized
foster care programs and high incentives for foster parents willing to take
these children. It was considered the first piece of legislation ever to deal
with AIDS.

Sheridan downplays the significance - sticking with the strategy that got the
law passed. Sheridan underplayed the AIDS issue at the time to get lawmakers
to support it. Ultimately, he made the issue about hospitals and hospital
support, he said. That was enough for the fledgling AIDS community. The rest
is history.

"He brings a fighting spirit and a caring feeling to the people of the
movement he is representing, in a more personal and committed [way] than in
any other original lobbying or formal setting," said Kim McCleary with the
Chronic Fatigue and Immune Dysfunction Association.

McCleary describes Sheridan as an underdog, representing issues that may not
have a chance of being heard. "It's like the David-and-Goliath struggle," she
said. And like David, Sheridan always wins.

--------
(c) 2008 The Hill

Sleep Problems and Thalamic Size

http://www.immunesupport.com/library/showarticle.cfm/ID/8914



Positive relationship between sleep
problems and thalamic size in patients
with Chronic Fatigue Syndrome


Source: American Psychosomatic Society 65th
Annual Meeting, May 2007


by T Lutgert, et al.

ImmuneSupport.com

06-09-2008


[Note: The thalamus is a right and left pair of brain
structures.]


Chronic fatigue syndrome (CFS) is characterized by
disabling fatigue of unknown etiology. Sleep quality
is poor in CFS patients. The thalamus is a key
subcortical structure in sleep disorders and certain
cognitive functions previously shown to be impaired
in CFS patients. We investigated the association
between subjective sleep quality and thalamic size
in CFS.


Twelve right-handed otherwise healthy CFS patients
[patients] and 12 age-, gender-, and handedness-
matched healthy controls completed the Jenkins
Sleep Questionnaire summing up responses on four
items asking for

a) difficulty in initiating sleep,
b) awakening during the night,
c) awakening during sleep with difficulty maintaining
     sleep, and
d) awakening exhausted in the morning despite
     having slept as usual.


Thalamic size was determined by MR-based
volumetry.


Logistic regression revealed that sleep problems
significantly predicted CFS status (OR = 2.66, 95%
CI 1.11-6.38), whereas total thalamic volume and
thalamic size of either side did not.


More sleep problems correlated with greater total
thalamic volume in patients (r=0.62, 95% CI
0.07-0.88, p=0.032) but not in controls (r=-.034,
p=0.30).


In addition, more sleep problems also correlated with
right thalamic size in patients (r=0.70, 95% CI
0.21-0.91, p=0.012) but not in controls (r=-.080,
p=0.81).


The strength of correlations between sleep problems
and total thalamic volume (p=0.028) and right
thalamic volume (p=0.046), respectively, differed
between patients and controls.


We found a positive relationship between more sleep
problems and thalamic volume in CFS patients
compared to non-CFS controls.


The finding provides a basis for further studies on a
possible role of the thalamus in sleep complaints
and fatigue of patients with CFS.

Source: Abstract 1664 from American Psychosomatic
Society 65th Annual Meeting, Budapest, Hungary May
7-10, 2007. (From a pdf of all abstracts, only some
of which have been published, at
http://www.psychosomaticmedicine.org/misc/2007APSabstractsforjournal.pdf ,
by Lutgert T, von Kanel R, Remonda L, Wiest R,
Kiefer C, Begre S. Departments of General Internal
Medicine, Neuroradiology and General Internal
Medicine, University Hospital, Berne, Switzerland.

Dr. Leonard Jason on CFS

Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by AVG AV
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Quotes from below:


*....There is a movement developing around the
world of people using different terms,  and some
are using the term M.E./C.F.S.

The C.D.C. and the CFIDS Association are  two of
the last large organizations in the United States
who have not come aboard....*

``

*....So if your case definition is imprecise and you
blur the categories, and that brings into it people
who dont have the illness, you ultimately have
problems with estimating how many people have
it. ...*

``

*....If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So
what happens is that people say, We cant find
anything, it must be psychogenic....*


~jvr


````````



From: Jill McLaughlin <mclaughlinjill@cox.net>


http://www.nytimes.com/2008/05/30/health/healthguide/esn-chronicfatigue-expert.html?scp=1&sq=chronic+fatigue+syndrome&st=nyt  



New York Times



Expert Q & A




Learning Firsthand About
Chronic Fatigue Syndrome


By DAVID TULLER

Published: May 30, 2008


Leonard Jason is a professor of psychology at
DePaul University in Chicago and the director of
the universitys Center for Community Research.
He is on the  Chronic Fatigue Syndrome Advisory
Committee to the federal Department of Health
and Human Services and is a board member of the
International Association for CFS/ME, an
advocacy group.


Leonard A. Jason, Ph.D



Q: What is it about chronic fatigue syndrome that
makes it so challenging for  many people patients
themselves, doctors, family members?


A: Fatigue is a universal human experience, and in
fact most people are very hard-working and feel
fatigued a lot of the time. And severe fatigue is one
of the most common complaints that people bring to
their physicians. Because so many people have
general fatigue and continue to function, they think,
Whats that? Thats not a disease, its just a fact of
life. So theres a perception both among medical
personnel and the lay public that its something that
you push yourself through, you deal with it. Theres a
tendency to think, Well, youre stressed out, get
some better sleep, take some antidepressants.

With heart disease or cancer or AIDS, you have an
immediate feeling from your family, your work
associates, your friends, that this is something we
need to be sympathetic to, we need to make
accommodations for. Whats strikingly different
about this illness is that the majority of people not
only have to deal with a particularly debilitating
health problem, they also have to deal with the
stigma and societal reaction and disbelief and
illegitimacy, and that is crushing. Your work
colleagues say youre malingering, medical personnel
say theres nothing they can find so they'll refer you
to a psychiatrist, and your friends begin to complain
that youre never calling them, you've rejected them.
So this person is in the whirlwind of a terrain of
disbelief that is probably in some ways unique.




Q: Has the perception of C.F.S. changed over the
years?


A: I spend a lot of my time giving talks to audiences
of people I dont know, and I feel its very different
today vastly different than 20 years ago. At that
time, no one had heard of it and there was almost
universal disbelief. Today, that is much, much less. I
dont mean to suggest that there is no skepticism
remaining. Its still present. But it is my opinion that
the people who are skeptical havent really looked at
the literature. Its easy to nurse your skepticism
when you havent really bothered to look.


Q: How much would you associate the skepticism
with the name chronic fatigue syndrome, which is
used in the United States, instead of names like
myalgic encephalomyelitis or myalgic
encephalopathy, which are more common in other
countries?


A: The name is unfortunate. Its a terrible name,
because fatigue is the focus and that is differently
experienced by people who are healthy than by
people who have this illness. I do think if we called
bronchitis or emphysema chronic cough syndrome,
youd probably have very little respect for those
people, but a  name thats more medical sounding
changes peoples perceptions.

When you have a more medical-sounding name,
youre saying the illness is not something fluffy, to
be downplayed and ignored, and health care
personnel think of it as more serious, more
debilitating. I hope there will be a new name, but
the problem is you dont change names lightly, even
bad names, because people  come to recognize an
illness by a name. I think changing it will confuse a
lot of people, so it better be a new name that has
broader acceptability among  patients and
researchers.

There is a movement developing around the world of
people using different terms,  and some are using
the term M.E./C.F.S. The C.D.C. and the CFIDS
Association are  two of the last large organizations
in the United States who have not come aboard.



Q: There are many people who think C.F.S. is just a
form of depression. Whats the connection between
the two?


A: The fast answer is, if you want to do a quick
diagnostic test, you could say, If you were well
tomorrow, what would you do? And the person with
C.F.S. would  give you a list of things that they want
to get back to in their life, and the  person with
classic depression would probably say, I dont know.
Eighty percent of people who have depression have
fatigue, but its not their most serious complaint.
They might have sleep problems, and some
cognitive  problems that are common, and they can
end up being brought into the case definition for
C.F.S.

Some people with this disease do have depression.
If you  basically have a person who says they were
feeling pretty good, now theyre sick, and then they
get depressed, they could have depression as well as
the illness. The real critical problem is when you
have a person who has solely depression and does
not have this illness, but has fatigue. So if your case
definition is imprecise and you blur the categories,
and that brings into it people who dont have the
illness, you ultimately have problems with
estimating how many people have it.



Q: Why does the estimateof how many people have
the illness matter?

A: This all goes back to case definition. If it includes
people who dont have the illness, some might say
that at least there are advantages to that because
it gives C.F.S. higher rates and more attention. So if
there are millions of people with this illness, it might
make the policy people take it more seriously. I think
one needs to be wary of that, because if you do
research with this broader group of people, and some
of them dont have the illness, and the  question is
what is the biologic data, how do you interpret that?
If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So what
happens is that people say, We cant find anything, it
must be psychogenic.



Q: You were diagnosed with C.F.S. many years ago.
How did that affect you?

A: That triggered my interest. I got C.F.S. in 1990
after having mononucleosis, and ended up having to
leave my work for about a year and a half. I said to
myself, Well, gee, if this is affecting me like it is, I
should try to do some research. I knew a little bit
about it, beforehand, and then I started reading  the
literature.

The epidemiology done by the C.D.C. was
atrocious. What I read was that this was  an
extremely rare disorder that affected less than
20,000 people, that it was  primarily psychological,
that it affected primarily upper-middle-class
people, that it had a case definition that was put
together by consensus and not by research
methods, and that it had a name that was pretty
trivializing. The prevalence research was very
poorly done. The tests they were using were
inappropriate and had a real bias for psychiatric
morbidity. I realized that one  needed to do basic
work in diagnostics and basic work in
epidemiology. I looked  at it and said, Hey, Ive got
enough work here for the next decade. It was a
real work opportunity for me.



Q: How did you recover?


A: I would say that it was a very slow process. I had
the good fortune that most  people dont have, in
that I had resources. I was a tenure-track professor
with a good income who had people rooting for me,
and nobody every questioned me or said youre
making this up, or its not serious. Everyone knew I
was a very hard worker, and they wanted me back.

How many people who get sick with this have that
opportunity? So they made it possible for me to build
myself back up. I had  benefits and a full salary. I
had a work setting, and a friendship setting and a
support setting that most people dont have. Most
people, the first thing that happens is they lose their
job, and then they dont have enough money. Im still
somewhat careful about how much I do and what I
commit to. I think of myself as being 70 to 80
percent back, not 100 percent.





Publish date: 5/30/2008

Copyright 2008 The New York Times Company

Don't be a victim of medical errors by Elizabeth Cohen/CNN

 

http://www.cnn.com/2008/HEALTH/07/17/ep.surgical.errors/index.html 

Solid numbers are hard to come by, because most states don't require doctors to report surgical errors. To make sure you're not the next victim, you might have to get pushy, like my husband did.

"You need to be that thorn in their side," said Dr. Samuel Seiden, an anesthesiologist who's co-author of a study on surgical errors. "You will catch things. You might also frustrate the nurses, but you have to look out for yourself."

 

5. Train someone to be your advocate

Don't just bring a friend or family member to your surgery; train them to advocate for you. You're likely to be anxious and a little addled before the surgery (not to mention asleep during it), so you'll need help.

So, how did my husband know to follow Tip No. 4, before he had the chance to read his lovely wife's column? He says it was just common sense -- and his submarine training. When you give an order in a submarine, the other person repeats it back to you, and then you repeat the order again. In engineering lingo, it's called creating a "closed loop."

* * *

Many medical errors are a result of miscommunication. 

I'd say maybe my problems wouldn't have happened if I had followed this advice and asked the doctor to repeat back to me what he thought he heard but, in fact, the handwritten notes taken during the appointment are accurate, indicating that he heard exactly what I said about my prior diagnosis.  It's the typed notes that introduce the false/erroneous statements -- the doctor didn't like what he heard so he did some creative writing in order to support the conclusion he wanted to reach, and hoped that noone would ever go back to the original handwritten notes to see where he twisted my words.

Similarly, the doctor who prescribed something I already knew didn't help is contradicted by his own report, which says on page 1, that I had already tried that and it didn't help.  It wasn't miscommunication, it was definitely an error in the doctor's thought process.  Although he wrote down what I said at the beginning of the appointment about things that I'd already tried, he wasn't actively listening so it didn't sink in that what he usually prescribes to patients with my symptoms had already been tried without success.

Read Dr. Groopman's "How Doctors Think" -- an indictment by a doctor of the medical culture, which should be required reading in every medical school in order for the students to be aware of how medical errors come about, and how to prevent them.

Unfortunately, doctors are human and humans make errors.  Equally unfortunately, some of those errors occur despite the patient giving the doctor all the necessary information to get it right, because the doctor has already leapt to a conclusion and isn't really paying attention to anything the patient says.

As Dr. Seiden says, you have to nag until you're sure that the doctor has in fact correctly heard what you said.  If the doctor doesn't know how to differentiate CFS from depression and treats you for the wrong one, he's not the one who's going to pay the price with a lifetime of pain and disability.  It's YOUR life and health that's on the line; if he makes a mistake, it doesn't affect him at all.   You can inconvenience him for a few hours with a deposition in a malpractice lawsuit, but his malpractice insurance will pay the judgment, not him.  Since you're the one who will suffer, you must take responsibility for doing everything possible to ensure that the doctor has given you the correct diagnosis and the correct medication for that condition.      

Be a Difficult Patient and Get Better Treatment

http://www.cnn.com/2008/HEALTH/07/03/ep.patient.heroes/index.html

 

'Empowered' heroes' hard lessons now help others

Story Highlights

Empowered Patient salutes heroes who embody the spirit of health empowerment

Personal struggles inspired them to create foundations, Web sites to help others

Dr. Andrew Weil: "It is the 'difficult' patients who often have the best outcomes"

By Elizabeth Cohen

CNN Medical Correspondent

ATLANTA, Georgia (CNN) -- When you think about health advice from Dr. Andrew Weil, you probably think of herbs and vitamins, a good diet, and plenty of exercise.

Many leaders in the patient empowerment movement have been ordinary people, not health professionals.

And all of that is true. But Weil has one more prescription: Become an empowered patient.

"Disempowerment," he says, is all too common among patients, and "adds to their distress and is an obstacle to recovery."

Weil advises: "Do not be passive. Remember: It is the 'difficult' patients who often have the best outcomes."

This week's Empowered Patient celebrates six people who have taken health matters into their own hands. Armando and Victoria Nahum lost a son to a hospital infection and overcame their grief to start a campaign to help others avoid the same tragedy. Gilles Frydman watched his wife battle cancer and started a listserve that's been used by over half a million people to share valuable advice about fighting cancer. A pharmacist, tired of seeing the same medication errors at his hospital, left his job to start a national campaign to stop medical mistakes.

Susannah Fox, a lead health researcher at the Pew Internet & American Life Project, says many of the leaders in the patient empowerment movement have been ordinary people, not health professionals. "When your life is on the line, or when your child's life is on the line, nobody's going to be more motivated to get to the truth than you," she says.

Maybe, she says, it's just because the Fourth of July holiday is upon us, but Fox thinks of patient empowerment as a particularly American movement. "It seems very American to have citizens who change the world for the better," she says.

* * *

This is why I blog ... to encourage others to be "difficult" empowered patients who refuse to accept inaccurate psychiatric labels, medications proven to be useless, and shoddy treatment.

Because I did not get the right treatment in the crucial early days of this relapse, I've been told the deterioration was too severe and I'll never recoverenough to return to the career I loved.  But because of all the false statements in my medical records, I can't get approved for Social Security Disability benefits, either.  I was too sick to stand up to the doctors, and really should have asked one of my friends to come with me to argue on my behalf that the doctor was making false assumptions about me, and demand that the doctor give me the expert-recommended treatment I asked for, and not something that made me even sicker, or even pills that I'd been told not to take because of a prior bad reaction to a related medication.  (I finally accepted that prescription, though I didn't fill it, because I simply didn't have the energy to argue any more.) 

My doctors got away with a lot that I wouldn't tolerate otherwise simply because I was too sick to wage protracted arguments with them; it was easier for me to go along with what they wanted to do, and prove it was useless by trying it, than to debate with them that I already knew anti-depressants wouldn't help me because I'm not depressed.  At the beginning of every appointment, I asked for sleeping pills, and at the end, I'd be too exhausted from simply getting to the appointment to argue when the doctor yet again gave me something else. 

If I can spare one patient the same fate, it's worth the time I spend blogging.

Get the facts, stand your ground (or have a friend/relative stand your ground for you), and don't settle for anything less than the correct treatments for what you have.  This is not about the doctor's ego, it's about your health.

Trials/Tribulations/Opportunities of CFS Research

ME/CFS costs the US economy $25 billion dollars a year in economic losses and yet receives amongst the lowest amounts of research funding of any disease. Do you want to know why?

Check out Part II of Dr. Ken Friedman's three part
interview on ME/CFS. In Part II, this father of a FM/CFS patient,
researcher, advocate, author and former federal advisory committee
provides some blunt and at times rather surprising answers about how we
got to this situation plus his view of the opportunities present.


You can access this interview at
http://phoenix-cfs.org/InterviewFriedmanResearch.htm

Subscribe to Phoenix Rising at
http://phoenix-cfs.org/PhoenixRisingsubscribe.htm

More on UNUM

For those of you who are fighting for your private disability benefits, take hope!  Here's another big verdict in favor of the little guy: 

Unum’s appeal backfires in Nev. (Worcester Telegram & Gazette, 4 July 2008): ME Free For All

 

 

“This company has been subjected to unprecedented scrutiny from the courts, the media, and government regulators, all of whom have found it improperly handled claims,” Friedman said. “The verdicts are going to keep on coming until it changes its ways.”

Drugs, Placebos and Perceptions

http://www.sacbee.com/107/story/1060018.html

Dr. Wilkes writes "ethics professor Howard Brody believes there is a more global explanation for Hoffman's truism. He explains that most medicines exert a powerful placebo response. So, for example, let's say you take a group of people with real and substantial pain – patients who have just had abdominal surgery or broken a large bone – and you give half of them a placebo (sugar pill) and the other half a new drug. Neither group knows what they are receiving. About a quarter of those who receive the sugar pill report significant pain relief.

Does this mean they are faking their pain? Of course not. It means that the mere act of taking a pill is enough to alter their brain chemistry so that it perceives less pain. This "placebo effect" has been known for centuries. Ironically, the effect of placebo seems, in part, due to the patient's beliefs about the pill, but part of the outcome emanates from the doctor.

When a patient trusts and respects the doctor, this effect is transmitted to the power of a pill (be it a real chemical or a sugar pill) so that the effect of the medicine is far greater the more a patient trusts the doctor. Once the public loses trust in a pill or treatment, the pill loses its effect. So when a doctor gets pumped up about a new medicine, say as a result of attending a drug company-funded class or a meeting with a drug company's representative, and conveys this excitement to the patient, there is a higher likelihood of a positive effect from a pill even if the pill is ineffective."

* * *

It's been noted that there is no placebo effect in CFS patients.  Much of the problem is that we no longer trust doctors; we've been lied to and mistreated so often that we don't automatically believe what they're telling us.

I do tend to be skeptical about new medications, and rightly so, because so many didn't help at all.  When I was in the clinical trial for the experimental sleeping pill, I could tell the first night of a new packet of pills whether these were the real thing or whether they were placebo.  The real thing put me to sleep, placebo didn't do a thing.  And this was a doctor I did come to trust!