Thursday, June 12, 2008

Why do some people not get better?

This week's feature article at the CFIDS & Fibromyalgia Self-Help website is
"Why Do Some People Not Get Better?" It is written by well-known CFS/FM
physician Dr. Charles Lapp. Dr. Lapp is Director of the Hunter-Hopkins Center in
Charlotte, a medical clinic that specializes in treating people with CFS and FM.

Our website contains more than 150 articles on topics such as coping strategies,
pacing and support. In addition, there are many patient success stories and
information for family and friends. Founded in 1998 as a 501(c)(3) non-profit
organization, we have conducted more than 200 self-help courses. Our classes are
offered over the internet.

Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program  

* * *

Some people don't get better because their doctors are very good at ignoring the evidence they don't want to hear that the patient has something other than what the doctor wants to diagnose.  Dr. Groopman addresses "diagnosis by stereotype" in his book How Doctors Think, and confirms that doctors do that all the time. 

Treating something the patient doesn't even have while leaving the real problem untreated is guaranteed to make the patient's health worse.

There is a place beyond anger

From: Greg Crowhurst [email protected]

There is a place beyond anger

Greg Crowhurst

9th June 2008

There is a place beyond anger. While my wife sits,
hunched in pain, while there is nothing I can even
make her to eat, while she sits tormented by noise,
by movement, in silence, Andrew Dillon, Chief
Executive of NICE, through my MP, Norman Lamb,
writes to me. He says:

"Our guidance does not recommend CBT/GET for
those with severe ME/CFS, instead it recommends
activity management administered by phone,
email  or in person, to be reviewed regularly and

Activity management - oh, so that is what she needs?

"Activity management", as recommended by NICE, is
based upon the three  principles of:

      * prioritising
      * planning and
      * pacing.

Where, I wonder, would Mr Dillon begin ??

No matter, do you know what my wife's response
would be why not read it on:

"You probably cannot imagine what it is like to be
trapped in a cycle of never ending opposite:

Where rest leads to increased dysfunction. Where
sleep leads to a complete ceasing of your body's
ability to move and an agony of increased pain.
Where touch, noise, communication, even tenderness
are experienced as an assault on your physical and
mental processes.

If you want to engage with people with severe ME
then try imagining a world that responds completely
the opposite way to your intention, where exercise
leads to inability and increasing disability
. Get your
sleep under control; Control the pain; Pace your
energy; Just relax your muscles; these things are

Linda Crowhurst: Get Over It.

NICE's recommendation that people with severe
CFS/ME "should be offered an individually tailored
activity management programme as the core
therapeutic strategy, which may: "draw on the
principles of Cognitive behavioural therapy and
Graded exercise therapy (, is extraordinary,
and has led to the guideline being condemned by
many patient groups.

Thereis a place beyond anger:

1. when the psychiatric lobby are reported declaring
that ME no longer  exists.

2. when I hear that Action for ME are calling for
more, and better trained "therapists".

3. when I wrote to my local group, ME Support
Norfolk, and asked  them to tell me exactly what
they are doing for the severely affected  and they

"This question cannot be answered directly, since
"the severely affected" is an abstract concept."

I am an artist. Yesterday I painted my rage: my eyes
are tight shut, my brow knotted up, as if in agony,
my mouth wide open in a teeth-bared scream.

There is a place beyond anger, where I sit, for hours
and hours, every day, just holding my wife, when I
can. Trying to ease her physical torment.

What hope is there of getting proper medical tests
and treatment or validation for this severely
disabling, multi-dysfunctional, neurological disease,
when these are the attitudes and views of the
people who represent ME to the world ?

When severe ME sufferers are alone and off the radar?

* * *

Someone once said "depression is anger turned inward".  You are not to blame for your CFS; don't get mad at yourself.  Turn your anger outward, at the doctors and The System who choose to believe, despite all the evidence, that this is just a psychiatric problem.  Put your anger to good use with activism, blogging, letter-writing, etc.

Only by patients getting the word out that there are 5000+ international research studies showing physiological abnormalities in CFS will people learn that it's not just depression or laziness ... it's a very real disease with much in common with polio and MS.

Tuesday, June 10, 2008

ME in the comics

Today's Comic

Blogging for Jobs

A former employee of Yahoo blogged about being fired and wound up with a new job.

I’ve been blogging for several years, and although I’ve received offers to blog for free on other sites, I haven’t gotten any paid work as a result of this blog.

I have applied for some paid blogging jobs, but – maybe because CFS is a controversial topic that they don’t want to be affiliated with – nothing has come of those applications.

Like so many things, it’s not what you know, but who you know. And nowadays, I associate mostly with other patients – if they knew about a paying job that could be done from bed, they’d take the job themselves.

I do everything that they tell you in job-hunting classes – get your name out there, show people that you know your subject, etc., but with a readership that is primarily patients (who aren’t in a financial position to hire me) with a few detractors (who are here to make fun of me, make fun of CFS, and verbally abuse me for not working full-time, without ever doing anything to help), this probably isn’t the best place to blog about looking for work.

Monday, June 9, 2008

Disability and Disability benefits

There are always claims that people commit Disability fraud, although statistics have shown it’s not as prevalent as skeptics believe. Several years ago, one state launched an expensive investigation, with the end result that only half a dozen people in the entire state were disqualified. Disability benefits being the pittance they are, the state’s savings on their benefits will not even come close to offsetting the cost of the investigation.

The "massive fraud" that the government expected simply didn’t exist, and part of the reason is that it is impossible to make ends meet on Disability benefits – I’d be getting near the top of the range, yet even my SSDI benefits would amount to less than a full-time minimum-wage paycheck. And the media do regular assessments that minimum wage is not enough to live on, so obviously, SSDI benefits amounting to less than minimum wage are not enough to live on – especially when you also need to pay medical and pharmacy bills that the average minimum wage earner doesn’t have.

One of the things that you need to look at is whether there’s an ulterior motive. I know someone who claimed she was disabled and quit her job during the divorce, at the precise point where she could get lifetime alimony if she claimed to be permanently disabled; a few months later, she wouldn’t have been able to re-open the case to get alimony (and, oddly enough, after the divorce was final, mutual friends never again saw any sign of disability or heard anything about the symptoms that she’d claimed were "so bad that she could never work again"). Conversely, although one of my doctors made snide remarks about divorcees wanting alimony, the facts show that I was working full-time at the point that alimony was determined, and therefore signed away all my rights to ever ask for alimony – even permanent disability would not allow me to request alimony from that husband after I signed that waiver. Don’t confuse him with facts, his mind was already made up; that the law didn’t allow what the doctor assumed to be my goal was immaterial.

A Disability applicant who has a spouse with a good-paying job is more likely to have an ulterior motive than an applicant who is self-supporting. My SSDI benefits will not be enough to pay the bills, and there’s no one else’s salary to make up the difference. Add up your basic bills and decide what you would jettison if you had to get by on a total income of $1000 or less per month. (And if you’re currently getting health insurance through your employer, remember to add into your budget a couple hundred a month to continue that policy, because you won’t get government health care until you have been on SSDI for two years.)

There’s no "secondary gain" for those of us who live alone: no one does the chores, no one pays our bills, no one coddles you so you can stay in bed all day. If I want someone to do my chores, I have to pay them ... and how many minimum-wage earners do you know who can afford to hire a housecleaner and a gardener every week?

Sure, a life of not having to go to work sounds good to most people. But when you look at the financial realities, a life on SSDI is not as enjoyable as you think. One of my friends gets $645 a month. She’s constantly having to beg and borrow to get by. Her TV died a few years ago and she can’t afford to replace it. Her car conked out and sat in the driveway for months till a male friend offered to fix it in exchange for a home-cooked meal; she’s not sure what she’s going to do when the car gives up the ghost for good. My late best friend got about $300 a month from Disability: Mama paid her rent, Mama bought her car; Mama paid her pharmacy bill. If Mama hadn’t gotten a nice inheritance to be able to afford all those extra expenses, my friend would’ve been living in the streets. Financially, either of them would be much better off with a minimum wage job, except that neither of them is physically able to get to work every single day as required to remain employed.

Too many people judge Disability applicants without looking at the facts. Are there people out there who have spent a lifetime avoiding work? Absolutely. But if someone (like me) has a reputation as a "hard worker" who usually had 2 jobs, or a job and a home business, then the word "lazy" doesn’t apply. I’ve been told that State VocRehab would not be able to place me in a job due to my doctor-documented restrictions and limitations, and multiple SSDI VocRehab experts have said I’m unemployable. If no one else was going to hire me, I hired myself, because I can’t not work. It’s not in my nature to sit around doing nothing.

The real question is, what does the Disability applicant actually do all day? If the person is able to do hard physical labor (say, gardening) for hours every day, or goes to the mall for hours every day, or attends multiple exercise/dance classes each day, then perhaps they aren’t really disabled and should be reported for investigation. But if the person only goes out for a couple hours once or twice a week, and spends most of their time resting, then the fact that they can occasionally spend a few minutes gardening, or an hour going to the grocery, doesn’t mean they’re not disabled – there’s no requirement that you have to spend 100% of your time lying down in a darkened room, only that you are not able to "sustain employment", i.e., you don’t have it in you to work five 8-hour days every week. Even someone who spends many hours a day lying in bed reading books is not necessarily "employable", if they’re confined to bed and cannot get to an office or sit at a desk, VocRehab will say they’re not employable and won’t help them look for a job (though if you come to VocRehab with a valid work-at-home possibility, they may be persuaded to buy you the necessary equipment). Even if you can get to a workplace, you need to be able to meet productivity goals – if your healthy colleagues are able to make 100 widgets per day, you won’t be employed for long if you can only do 30.

Anyone who doubts my claim that I spend most of my time resting rather than doing things is welcome to stay with me for a couple of weeks to confirm that what I say is true. I’m sure that there’s been surveillance placed on me over the years, and that the surveillance has confirmed that I pop out the front door for a moment in the morning to bring in the newspaper and a moment in the afternoon to bring in the mail, and other than that, most days I don’t leave the house.

The issue isn’t whether I can do a little something a few hours a week, but whether I can work enough hours to keep a "real job", and the answer to that is No, as proven by every time I’ve tried to go out several days in a row, or tried increasing the number of hours I work in a week.

Most people who apply for Disability benefits would rather be working. Don’t fault them because employers won’t hire them; with a very few exceptions (like drug abusers or daredevils), we didn’t bring our disabilities upon ourselves. I’m disabled because someone I don’t know gave me their virus bug; the only way I could have prevented it would have been to lock myself in my apartment for the duration of flu season to make sure no one shared their germs with me. A lot of people are injured in accidents that were simply a matter of being in the wrong place at the wrong time

A healthy diet and regular exercise will help keep you well, but they are not a surefire guarantee that you will never become disabled.

How reliable is that research result?

Latest response in a series of letters to the Times of Malta, following two
excellent companion articles for M.E. Awareness Week. I suggest, for conext,
you view all 6 replies here

If you wish to join in, the e-mail address is [email protected]

[email protected]

*The Times of Malta Letters*.

What Albert Cilia-Vincenti finds "strange" and "doubt-instilling"
and treatment of ME sufferers, Letters, 6 June 2008*) about Rebecca
Sultana's response to Professor Bassant Puri's work with VegEPA for M.E.
sufferers (*Research into ME, Letters, 30 May 2008*), I call healthy
questioning of experimental results and, not strange, but a familiar method
of the research scientist.

Her curiosity is particularly pertinent in a field with too much ignorance,
misinformation, subjective opinion and, regrettably, some exploitation,
impeding progress to a better understanding of the physical cause of
M.E. (*Myalgic
Encephalomyelitis*) and, perhaps, a cure.

Remarkably, all three of us think VegEPA is worth a try and may have some
beneficial effects but whereas Albert, unreservedly recommends buying pots
of it and Prof. Puri's book, Rebecca is more cautious and I will remain
unconvinced until his work has been, independently, repeated again and

In any research, the onus is on the researcher to prove their hypothesis by
rigorously testing it, in order to show that their results are valid
(actually measure what they say they are measuring) and reliable (will be
consistently reproduced if the experiment is repeated over and over).

For those not familiar with the language or methodology of research, think
of the researcher's job as that of the prosecutor in a legal case. The
defendant is innocent until proved guilty, no matter how things may seem, to
any individual onlooker, before the trial starts. Likewise, the hypothesis
remains untested and deserves a fair trial.

The defence is there to ensure that the prosecution does not make any
crucial mistakes, whether accidentally or, deliberately, to sway opinion in
one favoured direction. The defence certainly does not have to make any
concessions, nor do the more neutral dispassionate observers in the public
gallery have to take anything on faith. In the same way, peer researchers,
those with an interest in the outcome of the work and the general public are
not only entitled but should be encouraged to scrutinise every detail of the

Just as it is the job of the prosecutor to prove their case "beyond
reasonable doubt", so the researcher must say that, if this experiment is
repeated 100 times, the probability that they will get the same result is 95
times (that is, 95% or p<0.05) or, better still, 99 times (p<0.01).

If the prosecuting lawyer has a very strong case, you can't shut them up;
they will pile up every piece of evidence they can find to make their case
the strongest possible. Similarly, with the researcher: The strength of the
results, in support of their hypothesis, is like that of a wall they have
built. The more robust they believe it to be, the more likely they are to
invite you - even challenge you - to take a sledgehammer to it. It is when
they discourage you from merely leaning on it that you should, quite
rightly, question its construction and how useful it is for the purpose.

The strength of confidence in the results of studies is important because it
is on the basis of these that we may follow the recommendation to take, or
decline, a particular treatment, which may have serious long-term

Yours sincerely
[email protected]
Dr John H Greensmith
ME Free For All. org

* * *

One thing that we have found repeatedly over the years is that those researchers who want to prove that CFS is psychiatric in nature will load up their studies with patients who actually have depression, some even going so far as to say that certain symptoms that are not shared will disqualify you from being a research subject, in order to not have their "CFS" research contaminated by True CFS patients.

The original diagnostic criteria for CFS required depression to be ruled out before making the diagnosis, so it's obvious that the diagnostic criteria were being ignored when researchers started using patients with current depression in order to make pronouncements about CFS.

Cort Johnson is particularly good at ferretting out "CFS" researchers who ignore the diagnostic criteria in order to reach the results they want to reach.

Sunday, June 8, 2008

Patients as active as normals

Thanks to Miss Tigger for finding this one!

Women's Health in the News

Fibromylgia Doesn't Mean Inactivity, Study Finds
Tuesday, February 8, 2005
Most patients moved around as much as healthy controls

TUESDAY, Feb. 8 (HealthDay News) -- Many people with fibromyalgia and other chronic pain conditions can be active without experiencing increased pain, says a study by researchers at the University of Michigan (U-M) Health System and the Uniformed Services University of the Health Sciences in Bethesda, Md.
The study included 38 people with fibromyalgia, chronic fatigue syndrome or both conditions, and 27 healthy subjects in a control group. Rather than relying on the study volunteers' self-reporting of their activity levels, the researchers conducted round-the-clock monitoring of the subjects using high-tech devices that track daily movement.
"When you ask people with fibromyalgia about their level of function in terms of activity levels, they'll report a lower function than almost any other group," senior author Dr. Dan Clauw, director of the U-M Chronic Pain and Fatigue Research Group and a professor of rheumatology at U-M Medical School, said in a prepared statement.
"The surprising thing that we found was that their average level of activity was about the same as someone who didn't have fibromyalgia," Clauw said.
However, he and his colleagues did find that those with fibromyalgia, chronic fatigue syndrome, or both, spent much less time doing high-level activities than those in the control group.
According to Clauw, the results suggest that fibromyalgia patients report poor physical function and increased pain after activity because they report only intense activities that do cause them higher levels of pain. They don't report -- and may not realize -- that they manage some level of activity without suffering increased pain.
"We've probably been thinking about fibromyalgia incorrectly. This group was impaired, but they weren't impaired in the waythey though they would be. This is good news for fibromyalgia patients," Clauw said.
The findings could lead to changes in the treatment of people with chronic pain in the muscles and soft tissue, he noted.
"Exercise and activity are essential to the well-being of people with fibromyalgia. Our research shows that higher activity is not, in fact, leading people to increased pain, and it could be used to show patients that they can be active," Clauw said.
The study appears in the current issue of Arthritis & Rheumatism.
SOURCE: University of Michigan, news release, Jan. 2005

* * *

There you have it, folks.  People with fibromyalgia are not lazy ... they're moving around enough, they just aren't doing the things that will make them feel worse.

I know what I can do, and what I can't.  That I won't do a lot of yardwork (because I know it makes me sicker) doesn't mean that I'm not doing as much as I can within my limitations.  My problem is the strict time limit on physical exertion.  I can go to the grocery store, but I cannot put everything away the same day -- that exceeds my limit.  If I stretch out a load of laundry over a few days, I can manage it without landing back in bed. 

The people who criticize me for not doing enough are not working themselves to the point of exhaustion -- they're looking at the number of hours I spend on work and chores, where I'm looking at the percentage of energy used.  You can bet that they would never dream of spending so much of their energy working that they collapsed into bed without taking their work clothes off, or doing without dinner because they didn't have the energy to chew.  Yet, this is what they expect from me.