Happy National Invisible Chronic Illness Awareness...
More on Negative Effect of Exercise on CFS
I'll take Potpourri for $400, Alex....
What's in a Name? (2) Musings by Dr. Bell
Telethon Thoughts
A lawyer speaks on applying for Disability
Happy National Invisible Chronic Illness Awareness Week!
Happy National Invisible Chronic Illness Awareness Week! Tell everyone you know so that we can join forces to support each other.
Here's the latest article from the Fibromyalgia and CFS site at BellaOnline.com.
Chronic Invisible Illness- Yes, We Have A Voice
96% of chronic illnesses are invisible. Fibromyalgia and chronic fatigue syndrome are among them. Read this article to see what one woman has done to make invisible illness-visible.
http://www.bellaonline.com/articles/art52854.asp/zzz
Tags: chronic illness, invisible, CFS, fibromyalgia
If you have widespread pain, you and your doctor may wonder if you're
experiencing fibromyalgia symptoms. But determining whether you do
indeed have fibromyalgia symptoms isn't an easy process. It's not
uncommon to spend years going from doctor to doctor and undergoing
tests for conditions as varied as arthritis, depression and multiple
sclerosis before reaching a fibromyalgia diagnosis.
The fibromyalgia diagnosis process can be frustrating. Here's a look
at why it may take so long to go from fibromyalgia symptoms to
fibromyalgia diagnosis and what you can do to make the process more
efficient for you and your doctors.
Read the complete article at
http://www.mayoclinic.com/print/fibromyalgia-symptoms/AR00054/METHOD=print
Tags: fibromyalgia, diagnosis
READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk
1. Japanese Researchers Announce ME/CFS Graded Exercise Harm.
Lourdes Salvador writes in the American Chronicle: "Researchers in Japan noted that patients with chronic fatigue syndrome (CFS) report substantial symptom worsening after exercise and took an interest in the specific time course of the worsening. There was no cognitive or psychological benefit to the exercise, yet patients became more fatigued and suffered physical decline." Links to the recent activities of the CDC and the National Institute for Health and Clinical Excellence (NICE) on this issue are republished.
*Note that exercise is beneficial for those with fibromyalgia only.
And this longer version from Dr. John Greensmith:
http://www.americanchronicle.com/articles/viewArticle.asp?articleID=36333
Most people with chronic illnesses, such as chronic fatigue syndrome (CFS), fibromyalgia (FM), and multiple chemical sensitivities (MCS), have been offered well meaning advice, such as joining a club, getting some exercise, and getting out more. These infuriating, but well meaning, suggestions often
leave the chronically ill individual feeling misunderstood. After all, would it be appropriate to tell an paraplegic to have fun by going dancing? Of course not!
Well meaning friends often believe that chronic illness is psychological and victims just need to get out and have fun. Or, they may believe that the victim would not be tired if they got in shape. Or worse, they think the illness is affecting the chronically ill person at a psychological level and believe that to be the reason why the ill person does want to go out more
often. In reality, those with chronic illness are quite adept at pacing themselves to avoid exhaustion. What friends fail to realize is that exertion is exertion, regardless of work or play. Now science has stepped in to provide evidence of this.
Researchers in Japan noted that patients with chronic fatigue syndrome (CFS) report substantial symptom worsening after exercise and took an interest in the specific time course of the worsening. They investigated the influence of exercise on the subjective symptoms and cognitive function of 9 female CFS patients and compared them with 9 healthy women. An exercise test was conducted and monitoring of vital signs, cognitive function, and psychological status was performed from one week prior to exercise until two weeks after exercise.
Physical symptoms in the CFS patients did get worse on the fifth day. However cognitive and psychological status remained constant. There was no cognitive or psychological benefit to the exercise, yet patients became more fatigued and suffered physical decline.
Regardless of pleasure or pain, exertion is exertion. Pleasurable exertion holds the same fatiguing capability for the chronically ill as unpleasurable exertion. And there are no psychological benefits to boot. The next time we recommend to a CFS patient to get out more, have fun, and exercise, it might be best to think twice and opt for a quiet home movie that won't make the
person sicker and more discouraged instead.
Yoshiuchi K, Cook DB, Ohashi K, Kumano H, Kuboki T, Yamamoto Y, Natelson BH.
A real-time assessment of the effect of exercise in chronic fatigue syndrome. Physiol Behav. 2007 Jul 24.
Copyrighted (c) 2007 Lourdes Salvador
Doctors LOVE to blame CFS on "deconditioning", and flat-out refuse to listen when the patient reports having been in excellent shape with a daily exercise routine. Some CFS patients were Olympic-calibre athletes when they got sick; how much more conditioned could they have been? Yet, just like the rest of us, 24 hours later, they were too sick to get out of bed.
It doesn't matter if I'm dancing (which I love) or exerting myself to do housework. The end result is the same -- my symptoms get worse.
Tags: exercise, CFS, therapy
Posted by CFS Facts at 11:40 AM 3 comments:
If you think your doctor is a real pain, you may be right. Fibromyalgia patients who believe their doctors are serious about treating their symptoms may improve both physically and psychologically, research shows. Read more about this study on our Latest News page. www.fmnetnews.com
Karen Lee Richards' career as a writer and patient advocate grew out of
her determination to learn more about her own illnesses. Karen first
became ill in 1989, but it would be seven more years before she finally
received an accurate diagnosis. As she began to talk with other
fibromyalgia and chronic fatigue syndrome (aka myalgic encephalopathy)
patients, Karen discovered that her experience was not unusual. At that
time it was taking an average of approximately five to seven years for
someone to be diagnosed with one of these illnesses. Understanding the
frustration, fear and anguish patients go through during those years of
not knowing what is wrong with them, Karen decided to do whatever she
could to raise awareness about FM and ME/CFS. Read more: http://www.healthcentral.com/chronic-pain/c/5949/profiles/?ic=4020
Fortunately there is much good biomedical research being done by leading
research doctors and scientists, such as Jonathan Kerr and John Gow in the
UK and Sue Vernon in the USA, which shows that ME is caused by an
up-regulation of the immune system, often following an infection. A
definitive test for the illness cannot be far away and a treatment that
helps to modulate the immune system will then follow, but this may take
time. For more information contact reMEmber on 01273 831733, email
[email protected] or see www.remembercfs.org.uk
Bill Kent secretary
The Chronic Fatigue Society
Hyde is adament that a SPECT scan be done before a diagnosis of ME
is given. This is because MEis a brain disorder, not a fatiguing syndrome.
Medical Procedures Often Required to Diagnose, Treat Brain Injuries
SPECT Scans
A SPECT scan (single photon emission computed tomography) is a nuclear
medicine study that measures blood flow and activity levels in the brain.
Because the SPECT scan provides information about how the brain works, it
is an excellent diagnostic tool for persons with brain injuries.
In the 1970’s and 80’s, the use of SPECT studies was nearly eliminated due
to the development of the Standard MRI and CAT scan with their superior
resolution for delineating tumors, cysts and blood clots. Yet despite their
clarity, MRI and CAT scans could offer only images of a static brain and
its anatomy; they gave little or no information on the activity in a working brain.
In the last decade, it has become increasingly recognized that many
neurological and psychiatric disorders are not disorders of the brain’s
anatomy, but problems in how it functions. And now, thanks to new
multiheaded cameras and the advancement of computer technology, SPECT
images of today can see into the deeper areas of the brain with far greater
clarity and show what CAT scans and MRIs cannot - how the brain actually
There are other sophisticated brain studies besides the SPECT that measure
brain function: the functional MRI (fMRI), the PET scan and the
quantitative EEG. However, the SPECT scan has several advantages:
First, the largest amount of data available to date on how the brain works
has been documented using SPECT scans.
Second, the process is simple and the results immediate.
Radioactive isotopes are bound to a substance that is readily taken up by
the cells in the brain. A small amount, injected by IV, locks into the
brain in just one minute. The whole procedure including the scan takes
only about fifteen minutes. Also the person being scanned does not have to
lay immobile “in camera” throughout a SPECT procedure. This allows the
scan to take photographs of the person’s brain in a variety of states (e.g.
at rest or after performing tasks that will stimulate certain parts of the brain, etc).
SPECT scans, which cost around $1000 per scan are also less expensive than
fMRI or PET scans and are usually covered by insurance when brain injury is
present. Due to cost, ease of use and availability, the SPECT scan is often
the diagnostic tool of choice for securing images of brain function.
When evaluating the scan, physicians are usually alerted that something is
wrong in one of three ways:
1) they see too much activity in a certain area;
2) they see too little activity in a certain area; or
3) they see asymmetrical areas of activity that ought to be symmetrical.
Using this information along with a detailed clinical history, it is
possible to pin-point trouble spots affecting a person’s biological,
psychological and social makeup so that appropriate intervention can be
In brain injury where cognitive issues may be complex, the scan can
help differentiate between two problems with similar symptoms. Multiple
problems, once identified, can be addressed in the context of an over-all
One benefit of using a SPECT scan in brain injury is that it helps persons
with brain injury and their families know what they are dealing with. Seeing
areas of deficit in black and white encourages compassion and a valuable
reality check about problems that are unlikely to be “fixed.”
Yet when the scan reveals abnormalities that have the potential to improve,
that information offers hope. A game plan based on the results of the scan
can help in discerning what “next step” is possible. The findings may also
provide the support needed to secure additional services through insurance
that such a step would require.
When looking for a person, clinic or facility to provide a SPECT scan, some
things to consider are:
- How much experience do they have with SPECT scans? Someone who does
ten or twenty scans a year is not going to be as astute in picking up
abnormalities as someone who does hundreds.
- Do they administer a clinical history using professional (preferably
masters-level) personnel? Because the clinical history information is used
in conjunction with the scan to determine diagnosis, competent evaluators
are critical .
- Is there an end product? The value of the SPECT cannot be fully realized
by just documenting the underlying physiology of the person’s brain function.
A plan that looks at biological, psychological and social solutions to
address the problems is the other half of the equation. Using an integrated
approach, a qualified doctor should be able to identify problem areas (such
as in executive function and impulse control) and recommend appropriate
medications and therapies known to be effective in changing abnormalities
or deficits in brain activity.
- Who interprets the results, determines the diagnosis and develops the
plan? The physician or assistants? The benefit of the plan to the person
and the family will directly relate to the experience and qualification of the
person/s directly involved in the process. Can the doctor or clinic refer
the person to neurologists, neuropsychologists and therapists who understand
this integrated approach and are willing to work with the plan?
The good news for persons with brain injury is that technology is available
to help with better diagnosis, and that may make possible more
appropriate and effective treatment(s).
Daniel Amen is a board certified child and adult psychiatrist, brain
imaging specialist, and the CEO of Amen Clinics, Inc. in Newport Beach and
Fairfield, California and the new clinic in Tacoma, Washington. Dr. Amen
has pioneered the use of brain imaging in clinical psychiatric practice and
is a nationally recognized expert on the relationship between the brain and
behavior. His clinics have the world’s largest database of functional brain
scans for neuropsychiatry. He has won writing and research awards from the
American Psychiatric Association, the US Army and the Baltimore-DC
Institute for Psychoanalysis.
http://www.birf.info/home/library/med-procede/med-pro-spect.html
The Brain Place is a website giving in-depth information on SPECT scan
technology including abstracts, brain maps detailing location/function,
case studies, and history.
Dr. Amen's book, 'Change Your Brain, Change Your Life', is a layman’s
guide to understanding the brain, how it works, and how to change it.
The text includes medication helpful in addressing specific symptoms.
http://www.westpress.co.uk/displayNode.jsp?nodeId=145786&command=displayContent&sourceNode=231644&home=yes&more_nodeId1=145795&contentPK=18233872
ME GUIDELINES A STEP FORWARD BUT NOT ENOUGH
Date : 29.08.07
Sufferers of ME are angry that the Government's health watchdog has failed to
recognise the debilitating condition as neurological.
The National Institute of Clinical Excellence (Nice) has issued new guidelines
to doctors on how they should treat Myalgic Encephalomyelitis.
The guidance, which has taken three years to compile, says healthcare
professionals should take the illness seriously.
But it does not support the World Health Organisation's view that it is a
neurological condition.
Instead, Nice advocates psychotherapy treatment or exercise programmes that ME
sufferers say do not help the illness, which affects 240,000 people in the UK.
The affliction, also known as chronic fatigue syndrome, causes a range of
symptoms including tiredness, malaise, headaches, sleep disturbances,
difficulties with concentration and muscle pain.
Dr Esther Crawley, an ME specialist who is based at Royal United Hospital,
Bath, and helped to draw up the Nice guidelines, said: "ME causes symptoms of
varying severity and can be debilitating in children and young people.
"We frequently see children who are very severely affected and unable to get
out of bed.
"These guidelines should ensure that people who are severely affected have
their diagnosis and care supported by a specialist, and have access to
treatment."
It is hoped the guidelines will ensure that doctors take ME seriously.
Nice admits "uncertainties" about diagnosing and managing the condition have
"exacerbated the impact of ME" on patients and their carers in the past.
In the new guidelines, doctors are told to develop an individualised
management plan for each of their patients.
But Dr John Greensmith, 54, from Bristol, is concerned about Nice recommending cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments.
He says patients get little benefit from CBT - and GET can be dangerous.
Dr Greensmith was diagnosed with ME 19 years ago and runs the support
organisation ME Free For All.
"The GET programmes can push ME patients too far and they can end up in a
wheelchair or bed- bound," he said.
"CBT is a psychological approach for people with depression so it makes the
assumption that ME is psychological.
"There is no evidence that either treatment works.
"But I think the report is positive in that it recognises the patient.
"More money needs to be put into research - that is fundamental. They need to
go back and look at it again." For 16-year-old Amy Baldwin, pictured, every
day is a battle to get out of bed.
But since she was diagnosed with ME eight years ago, Amy has faced accusations
that the aches and pains in her arms are psychological.
Her parents have been accused of being over-protective and imagining things,
and doctors even said Amy was suffering from 'school phobia'.
Amy missed so much schooling because of her illness that her parents decided
to educate her at home from the age of 10.
"When I have a bad day I feel very sick and have aches all the time in my arms
and legs," she said. "It's very restricting.
Amy's mum Sally, 46, said: "She was always very poorly and would sleep a lot
and complain of aching arms and legs.
"But it wasn't until I did some research myself and got in touch with the ME
Action Line that I got the information and a diagnosis when she was eight
years old.
"We were fobbed off by the doctor and teachers, who said it was school
phobia."
Amy has now earned a place at the City of Bath College to study for a media
diploma.
For more information on ME, log on to www.mefreeforall.org
Identity and coping experiences in Chronic Fatigue Syndrome: A
synthesis of qualitative studies.
Journal: Patient Educ Couns. 2007 Aug 13; [Epub ahead of print]
Author: Larun L, Malterud K.
Affiliation: Norwegian Knowledge Centre for the Health Services,
Norway; Department of Public Health and Primary Health Care,
University of Bergen, Norway.
NLM Citation: PMID: 17698311
OBJECTIVE: To provide insight into patients' and doctors' experiences
with CFS.
METHODS: We compiled available qualitative studies and applied
meta-ethnography to identify and translate across the studies.
Analysis provided second-order interpretation of the original
findings and developed third-order constructs from a line of arguments.
RESULTS: Twenty qualitative studies on CFS experiences were
identified. Symptom experiences and the responses from significant
others could jeopardise the patients' senses of identity. They felt
severely ill, yet blamed and dismissed. Patients' beliefs and causal
attributions oppose the doctor's understanding of the condition. For
the patient, getting a diagnosis and knowing more was necessary for
recovery. Doctors were reluctant towards the diagnosis, and struggle
to maintain professional authority. For patients, experience of
discreditation could lead to withdrawal and behavioural disengagement.
CONCLUSION: The identities of CFS patients are challenged when the
legitimacy of their illness is questioned. This significant burden
adds to a loss of previously established identity and makes the
patient more vulnerable than just suffering from the symptoms. CFS
patients work hard to cope with their condition by knowing more,
keeping a distance to protect themselves and learning more about their limits.
PRACTICE IMPLICATIONS: Doctors can support patients' coping by
supporting the strong sides of the patients instead of casting doubt upon them.
www.worstpills.org
Tags: CFS, exercise, therapy, counseling, CBT, GET, psychological, neurological, immune
http://www.immunesupport.com/library/showarticle.cfm/ID/8304
Dr. David S. Bell, MD
A Dream Team in the Making:
The Heart and Soul of the ME-CFS Movement
by Kristy Katzmann
ImmuneSupport.com
A profile of David Bell, MD - part of a series
highlighting the accomplishments of ME-CFS New
Name Implementation Committee (NNIC)
Dr. David Bell, MD, is a renowned specialist in
pediatric ME-CFS with a private practice in
Lyndonville, New York. He serves on the Board of the
International Association for Chronic Fatigue
Syndrome/ME (IACFS/ME), and in recent years was
appointed chair of the Chronic Fatigue Syndrome
Advisory Committee, which advises the Secretary of
Health and Human Services. Dr. Bell was one of the
first doctors to recognize ME-CFS as a legitimate
medical condition, and has spent more than 20 years
dedicated to patient care and the ME-CFS cause.
In 1985, David Bell, MD, was an established
pediatrician with his own successful practice in
Lyndonville, New York, when his life unexpectedly
took on new meaning. A mysterious illness ripped
through his rural community affecting an
unprecedented 216 people, 16 of whom were
children. “It was fairly striking. At first it looked like
mononucleosis, but we tested them for that and it
was negative,” Dr. Bell recalls. “I assumed they were
going to get better, but then they never did.”
“We studied (the kids), we referred them, we called
the Centers for Disease Control, we sent them to all
sorts of infectious disease specialists, and no
satisfactory answer was ever forthcoming,” he says.
Determined to find answers, Dr. Bell began his
life-long work with this devastating illness, now
known as ME-CFS, by doing his own extensive
medical work-ups on the affected children.
What he found shocked the medical community. His
diagnostic testing concluded that Epstein Barr Virus
(EBV) was not the cause of the outbreak, and
therefore debunked the widely held belief at the time
that EBV is the cause of ME-CFS. “While EBV can still
be a trigger, the illness has evolved into a
post-infectious phenomenon,” explains Dr. Bell. He
continues his “1985 Lyndonville Outbreak” study
today, making it the longest running continuous
ME-CFS follow-up study ever conducted.
Whether ME-CFS chose him or he chose ME-CFS is
unclear. What is clear, however, is Dr. Bell’s
dedication to ME-CFS patients and their difficult
plight. “I can remember one moment where it sort of
fell into place. In the initial outbreak there were
several children who I sent to an infectious disease
specialist, and the report came back that they were
hysterical, that they were nuts…I knew these kids
weren’t nuts,” he says. “That was the first time it
ever hit me so clearly that there was a complete
misunderstanding of this illness.”
According to Dr. Bell, this gross misunderstanding is
largely due to the name (Chronic Fatigue Syndrome)
itself. “I feel that (the name) disrespects patients
and is one of the reasons that the illness is not
taken seriously, and this is a very serious illness,” he
says. “This is a major, major problem, and one of the
worst things about it is the name.”
Ever since its inception in 1988, the name has
wreaked havoc within the patient, medical, political
and public communities. Issues such as disregard,
disrespect, lack of credibility, inadequate medical
treatment and ignorance run rampant. “This is the
reason why so many adults refuse to acknowledge
that they have Chronic Fatigue Syndrome. They don’t
know whether they’re sick or they’re crazy, and they
don’t want to talk to anybody about it because it’s
such a threatening subject,” Dr. Bell says.
So why is the name itself so crucial to the ME-CFS
movement? Dr. Bell believes it boils down to one
thing: respect. “If the illness becomes recognized
appropriately, (patients) will start getting the
respect of their family and of their primary care
physicians. They will start being treated with dignity
which is a very important step,” he explains. “As
soon as patients with this illness are treated with
dignity, it will remove one huge burden from their
shoulders.”
While most everyone can agree that the name needs
to be changed, fierce debate persists when deciding
on the most fitting name for this illness. Although he
has suggestions of his own, Dr. Bell backs the use of
the name ME-CFS (Myalgic Encephalopathy-Chronic
Fatigue Syndrome). “I think going to ME-CFS is a
fairly good first step, but I still think that it needs to
go even further than that,” he says.
Dr. Bell stresses the use of the acronym “ME-CFS”
because it satisfies many different parties, while
also providing an umbrella term that can be further
differentiated down the line. Although he says both
“Encephalopathy” and “Encephalomyelitis” are
medically correct, he thinks a universal consensus is
necessary for progress to be made. He supports the
move to “Myalgic Encephalopathy-Chronic Fatigue
Syndrome,” and is optimistic that others will get on
board to effect positive change.
But the name, in Dr. Bell’s opinion, is not the only
obstacle standing in the way of progress. He
believes that the perception and clinical treatment of
ME-CFS are also major roadblocks. In his new book,
Cellular Hypoxia and Neuro-Immune Fatigue, Dr. Bell
offers a new focus. “The area that I feel is becoming
more important in the research, is that instead of
(ME-CFS) being isolated to a single organ, it’s found
in practically every cell of the body. This is a disease
of cellular energetics, of cellular energy production,”
explains Dr. Bell. “That toxic feeling you get is a
cellular issue.”
His excitement is evident as he talks about this new
strategy and its boundless possibilities. “If in fact
this is correct, then it has very direct implications for
treatment, which would be absolutely huge,” says Dr.
Bell. “We are doing some things here in the office
that I’m very excited about, but it’s much too early
to say that they’re working.” It’s a massive
undertaking, but one he feels is essential to making
progress. “At first I thought, it’s too complicated, I’m
too old for this. But now I’ve gotten very excited and
I expect to spend the next 10 years of my life
reading (about it).”
Although it is a journey he never could have planned
to take, Dr. Bell is immensely grateful for his work
with ME-CFS and remains unfailingly dedicated to the
cause. His voyage has been ripe with surprises,
struggles and rewards, and he wouldn’t have it any
other way. “I’ve learned an incredible amount of
medicine I never would have learned the same way,”
he says. “If a person is interested in something, and
they’re willing to just keep plugging away at it, then
good things can happen,” says Dr. Bell.
“Whether or not that’s going to happen in this illness
for myself or for any of the other people who have
been doing it remains to be seen, but it’s an
important lesson of life - everybody needs to take on
a project that’s good for themselves, and good for
the world, and then stick with it for the long-haul,”
Dr. Bell explains.
In the end, amidst his mountains of research and
stacks of writing, with hundreds of lectures and
interviews under his belt, one thing matters more
than anything else to Dr. Bell: his patients. “Perhaps
my greatest contribution has been that I have stuck
by (my patients) for a long time,” he says. “Even
though I haven’t been able to remove all of their
symptoms, I’ve never lost faith in those particular
people. I’ve never given up on them, and that’s the
only thing that I feel really proud of.”
Tags: CFS, CFS/ME, ME/CFS, Chronic Fatigue Syndrome, David Bell
Jerry Lewis points out that the Ford Foundation gave Jonas Salk $500 million, and 18 months later, he had polio beaten.
Unfortunately, most of the research funds for CFS are raised in $2 and $5 increments from patients; the government allocates a minuscule amount for CFS research, and at least twice, has been found to be diverting that money to research other diseases instead. Even when the study purports to do research into CFS, the patient pool is often filled with people who have depression or some other non-CFS source for their fatigue, and thus provides no information which is useful to those of us who have the original, post-viral type of CFS.
By some estimates, CFS costs the US economy $25 BILLION a year in lost productivity; we don’t get even 1% of that in research funding ... if my math is correct, we get one-quarter of one-tenth of one percent of that from the government. And then the patients get blamed because without research finding a treatment or a cure, we can’t go back to work and are forced to apply for Disability benefits. Most health conditions get worse without proper treatment; in the years that I was begging doctors to read the research and give me the pills that would help, I deteriorated steadily. I’ve been improving since getting the right pills, but I’m still a long way from being well enough to work.
Loving and supportive families are shown on the telethon – where are those where the spouse bailed out, leaving the patient to cope alone? The fact is, three-quarters of marriages affected by chronic illness break up; the ones on the telethon are the minority. Most patients don’t have a wife to fuss over us; if we want dinner, we have to cook it ourselves, and if we’re too sick to get to the kitchen, we do without. My ex-husband made it quite clear that he "didn’t get married to cook and clean", and any time he had to do it, he complained to anyone who would listen -- without mentioning that the reason he had to do chores was because after working a full-time job, and walking home from the bus stop because he couldn’t be bothered to drive me home from work, I was exhausted and often collapsed even before making it to the bedroom. He was firmly convinced that I got sick solely to inconvenience him, but stayed married to me because I was working and he was not.
The pitches for funds make it clear that the MD Association provides funds for braces, therapy, etc. This leads people to believe that all associationshelp out financially. Unfortunately, because most of the funding for CFS has always come from the patients, the various CFS associations cannot even fund all the research they want to do, much less provide help directly to the patients. There’s no summer camp for CFS kids; if you need a wheelchair, either you or Medicaid pays for it (or you don’t get it); if you can’t afford the medical bills, you either do without or go bankrupt. Our association can’t spare the money to help out the patients because they don’t have it, either. And almost 100% of our volunteers are patients and their already-overworked caregivers; when a patient reports needing help with housework or building a wheelchair ramp, there is no one physically able to give them that help.
Eons ago, I did a lot of volunteer work for a lung condition that took the life of a friend’s kid sister. Frustrated with raising money in small amounts, a few coins at a time in a collection can, I asked "why can’t we have a telethon?" thinking we could raise big bucks fast, and it was explained that their kids weren’t on crutches or in wheelchairs. It simply wasn’t as compelling to watch their kids sitting on a couch and say "these kids are sitting on the couch because they can’t breathe well enough to run around and play".
And CFS has the same problem: if we’re sitting on a couch, we look healthy and garner no sympathy. Those who are so afflicted that they need wheelchairs are too sick to make the trip to a TV studio. Most days, I could make the trip to the studio, but the exertion would have me falling asleep sitting up the rest of the day; hardly riveting television. The average overworked American would look at us dozing off and think enviously "it must be nice to be able to take a nap in the middle of the day", without understanding that this is not a choice, it’s more like narcolepsy in that you absolutely cannot stay awake when you’re hit with a sudden wave of exhaustion.
Because it’s a virus, it sometimes afflicts entire families. Unlike Muscular Dystrophy, the cute child with CFS can’t count on having a mother who’s well enough to drive them all over the state to be a Goodwill Ambassador – mom could well be a CFS patient herself.
What could our CFS researchers do with $500 million in one fell swoop? That’s more money than has been spent in the US on CFS research intotal over the past 25 years. Maybe they, too, could solve the problem in 18 months. Even just a vaccine to prevent more people from getting the virus would be a step in the right direction. Though we haven’t given up hope that, with enough funding, someone can find a cure to get even the long-term patients back on their feet.
$500 million is just 1/50 of the annual cost to the economy of having a million Americans out of work. If you put it in that perspective, it’s a pittance; less even than one year of income taxes on the lost productivity. And would mean so much to so many who would love to have their lives back.
Tags: CFS, disability, SSDI, telethon, fundraising, Jerry Lewis, polio
Posted by CFS Facts at 5:04 PM 22 comments:
Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating Attributions for an illness based upon the name: Chronic fatigue syndrome, myalgic encephalopathy, and Florence Nightingale Disease. American Journal of Community Psychology, 30, 133-148.
Dr. Jason’s study sent CFS patients for medical care using a variety of names for their condition. He found that different names engendered different treatment: those using a name that sounded more serious were treated more respectfully than those who used the silly name mandated by CDC.
I could’ve told him that. In 1988, shortly after I was diagnosed with CFS, another woman at church was diagnosed with MS. With one exception, our symptoms were exactly the same: the symptom where we differed was one which occurs in one disease but not the other, and is why each of us got the diagnosis we did, but her "extra" symptom was no more disabling than my "extra". Immediately, a group was organized to clean her house; when I begged off from helping because I was barely able to clean my own house, I was called "lazy". No one offered the slightest bit of help to me; the silly name of the disease indicated to them that I wasn’t really sick despite almost identical symptoms and severity.
She immediately quit her job and petitioned for lifetime alimony; I continued working as many hours as I could manage. Again, I was the one who was called "lazy". Excuuuuuuuuuse me? The one who’s working is lazy, and the one who decided to quit because working was a little difficult is nominated for sainthood? What’s the difference? Oh, yeah, she has a recognized dread disease with a medical-sounding name, and I have something with a silly name that doesn’t sound in the least disabling.
In short order, doctors and the media started abbreviating CFS to "chronic fatigue". This casual inaccuracy added to the notion that this was just a minor problem that could be overcome with a little gumption, and that no virus or disabling symptoms were involved. People who didn’t see the extreme effort put forth by patients just to get through a day at work could convince themselves I simply needed to try harder and whine less; my co-workers, who watched me nearly pass out when I stood up, stumble into walls and file cabinets, wander around the office in a fog, ask ridiculous questions like "Janice, where on my keyboard would I findthe letter P?" – they knew this wasn’t something that could be fixed by ordering me to put more effort into it, and they didn’t hear any whining. When I left the office at 5 PM, they worried whether I would make it home safely because it was so obvious that I was completely drained. I could not fake what they were seeing (and hearing from the next stall in the ladies room).
The boss who kept ordering me in the middle of the day "get in the car, Honey, I’m taking you home" thought it was obvious I didn’t belong at the office, and I was nagged that I could not continue to accept a diagnosis of "nothing wrong" when there was clearly something very wrong. He knew me to be someone who willingly worked evenings and holidays and weekends and took on extra work beyond my own; no one was ever going to convince him that I was "too lazy to work". But the people who never worked with me – people who have never been within 100 miles of me – claim to know my work ethic better than my boss, because they’ve been blinded by the disparaging name Chronic Fatigue Syndrome.
John Herd observes "The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment." If I were writing this blog from the perspective of an MS patient struggling to work part-time, there would be kudos in the comments for not giving in to the disability; but because I call the same collection of symptoms "CFS", commenters falsely accuse me of not working at all because they perceive CFS patients to be lazy.
Johnson says "nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years ‘hysterical paralysis’." In other words, if I’d been writing 100 years ago from the perspective of an MS patient, the comments would be the same as they are now, accusing me of being a lazy faker and disputing any claim of objectively demonstrable abnormalities. Amazing how a little time and medical evidence changes perspectives. 100 years from now, someone will find this blog in internet archives and marvel at the ignorance shown by those who vehemently disputed the validity of a recognized neurological disease that’s as disabling as MS is now recognized to be.
Politics, Science, and the Emergence of a New Disease: The Case of Chronic Fatigue Syndrome Jason, L.A., Richman, J.A., Friedberg, F., Wagner, L., Taylor, R., & Jordan, K.M. (1997). Politics, science, and the emergence of a new disease: The case of chronic fatigue syndrome . American Psychologist, 52, 973-983. http://www.cfs_news.org/jason.htm "This article examines this controversy by exploring how the establishment of diagnostic criteria and the design of early epidemiologic studies led to inaccurate and biased characterizations of CFS."
Therein, Dr. Jason observes "Given physician skepticism about CFS and consequent antagonism between CFS patients and the traditional medical establishment, many CFS patients have dropped out of the medical care system." One of the problems with that skepticism is that it has led to biased researchers using biased selection criteria to pollute the patient pool in research studies in order to prove what they want to believe; the result has been that patients who actually have depression are used to prove that CFS is depression.
However, despite the skeptics’ belief that CFS is simply a form of depression, Dr. Jason writes "Several studies, however, clearly differentiated CFS from depression. For instance, CFS patients show more alpha electroencephalographic activity during non-REM sleep, but this is not seen in dysthymic or major depressive disorder (Whelton, Salit, & Moldofsky, 1992). Bakheit, Behan, Dinan, Gray, and O'Keane (1992) found up-regulation of hypothalamic 5-hydroxytryptamine receptors in patients with postviral fatigue syndrome but not in those with primary depression. Lutgendorf, Klimas, Antonini, Brickman, and Fletcher (1995) found that CFS patients with greater cognitive difficulties had more abnormalities in their immune system." (Dr. Berne’s book has a two-page chart of the objective differences between CFS and depression. To those open-minded enough to consider the facts, it’s incontrovertible that CFS is not the same as depression; objective test results are vastly different, as is patients’ reaction to anti-depressant medication.)
My initial diagnosis (before CDC mandated the new name) was Post Viral Syndrome. That name makes it real clear that the sole cause was the severe virus I had in February 1987 and there’s no psychiatric explanation possible. Years later, the virus and virologist were excised from my medical records because they were inconvenient to that doctor’s desired diagnosis. He couldn’t diagnose post-divorce depression if I had the same symptoms even before I got married, so, voila, if I never had the virus, I couldn’t have post-viral symptoms. But he couldn’t rummage through my files at home to make the documents disappear that prove I’m telling the truth about my original diagnosis, and he couldn’t change the records of the specialist who confirmed my original diagnosis. And he doesn’t know me very well if he thinks that I’m so mousy that I’m afraid to get a job and afraid to speak out publicly when I see lies and injustice; that’s what I was trained for. Nor am I cowed into submission by the mere fact that he is a man. I am not awed by white coats, and I have no respect for those who think wearing one authorizes them to patronize and intimidate those who come to them for help. If I’m paying for a service, I expect the service provider to treat me with dignity, not like someone beneath contempt. (If I’d ever been as abusive to law office clients as doctors were to me, I would’ve been unemployed in an instant.)
Dr. Kevin White, Rheumatologist and Epidemiologist muses "Why do those who belittle the concept offer virtually nothing more of an argument than their own feeble versions of "common sense," while repeatedly ignoring a huge and ever-growing body of evidence supporting its legitimacy?" In the case of CFS, it goes back to the silly name, and the staunch refusal of CDC to approve a name change, or even to reinstate the old name Myalgic Encephalomyelitis, which is still in use in every other English-speaking country except this one. The commenters here offer nothing more than ad hominem attacks; they say the statements here are inaccurate but offer no facts to contradict them, and misrepresent/misquote what has been said in an attempt to bolster their baseless argument. They feel they don’t need to read the research because they already know everything they need to know.
Doctors even plead "common sense" for discrediting in CFS patients the exact same symptoms they willingly admit are typical of MS and post-polio. Their prejudice blinds them to the total illogic of stating "that’s impossible" in response to symptoms they unquestioningly accept in other diseases. The best attempt any of my doctors made when they were called on it was "well, that’s different", but then couldn’t explain how it’s different. My common sense tells me that what’s really impossible is a valid explanation for their stance that Sheila’s symptoms are normal for post-polio but mine are unimaginable, when I’m describing the same response to the same thing.
Or, for that matter, for the stance of anyone whose head is so far in the sand as to deny the existence of 5000 research studies worldwide proving irrefutably that CFS/ME has a biological origin and is absolutely not psychological in nature. Call it fakery or psychiatric all you like – the overwhelming evidence proves you wrong, and some day in the not too distant future you will be forced to eat the very words you wrote here. If it were known by any other name, you’d already be too embarrassed to dispute the facts.
The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell
Tips for Winning a Fibromyalgia or CFS Disability Case...and...What actually happens at a Social Security Disability Hearing?
(EXCERPTS)
by Jonathan Ginsberg, Attorney, Atlanta, Georgia* Fibromyalgia.com
Jonathan Ginsberg is a Social Security Disability case lawyer specialized in representing patients with chronic illnesses such as Chronic Fatigue Syndrome and Fibromyalgia. He maintains a "Social Security Disability" website offering resources from disability lawyers all over the U.S., plus a blog and radio program where patients may submit questions and receive professional responses. Though he uses examples from FM cases here, the concepts apply equally to CFS and other "invisible" disabilities.
Tips for Winning a Fibromyalgia [or CFS] Disability Case
In a disability case, you need to prove one thing - that you are not able to work. If you remember nothing else about Social Security disability, remember that your capacity for performing work is the only thing that matters to a Social Security judge. Your ability to perform an easy job - the main issue Your underlying medical condition -- FM, [CFS], or any other medical problem, is only important to the Social Security Judge if your symptoms limit you from performing a job 8 hours a day, 5 days a week.
What is the Judge thinking?
There is a perception that Social Security disability cases based on Fibromyalgia [or Chronic Fatigue Syndrome] are difficult to win. It is true that some judges have a problem acknowledging a medical syndrome (not a "disease") that cannot be detected by a blood test and that can have a wide range of symptoms. (See the clinical definition of Fibromyalgia as set forth by the American College of Rheumatology, at http://www.nfra.net/Diagnost.htm ) Judges are people, and they tend to discount complaints they hear again and again.
As you may know, Fibromyalgia often produces other identifiable symptoms, including loss of balance, digestive problems, irritable bowel syndrome, slurred speech, vision problems, depression, swelling, memory loss, cognitive loss, fatigue, sleeplessness, etc. You might find it helpful to read a Judge’s decision in a Fibromyalgia case. (The file at http://www.4socialsecuritydisability.com/Fibro%20decision.pdf offers two of my recent favorable Fibromyalgia decisions from the Atlanta Office of Hearings & Appeals.)
The first case involved a 38-year-old woman with an extensive job background who suffers from Fibromyalgia as well as numerous gastrointestinal and other complications. Note that the Judge focuses on my client’s work history and that she is very credible because she has been seeking a medical solution to her problem.
Deciding on a start-date for your disability
I also have found that many of my Fibromyalgia clients were ambitious and hardworking in their careers and jobs. Subconsciously or otherwise, many Judges realize that few claimants would trade the money and job satisfaction of a challenging career for the fixed income offered by Social Security disability. I therefore usually encourage my clients to testify about:
* What they did before they stopped work,
* How they tried to hang on, even while fighting increasing levels of pain and fatigue,
* And how they would greatly prefer their former way of life.
Note: The comments and opinions expressed here should not be considered legal advice, as every Social Security Disability case is different and depends on your individual case information. Further, the author makes no warranty, express or implied, about the accuracy or reliability of this information. You should not act or rely on any information without seeking the advice of an attorney or qualified non-attorney representative.
What Actually Happens at a Social Security Disability Hearing? by Jonathan Ginsberg, Attorney - Atlanta, Georgia*
The Vocational Expert
In most cases, the Judge will call a Vocational Expert (also called a VE). * The VE may be a job placement professional, a professor, or a vocational rehab counselor. * The VE’s job is to classify your past work and describe for the judge the skill level of your past work (unskilled, semi-skilled or skilled) along with the exertional level called for in this job (sedentary/sit-down, light, medium, or heavy). * The judge needs this information to determine whether your claimed impairment would prevent you from returning to your past work and whether you have acquired any skills that would transfer to less demanding work. * Vocational experts will be familiar with a publication called the Directory of Occupational Titles - which is a book published by the U.S. Department of Labor that describes the physical and mental requirements of all jobs that exist in the United States.
What you must remember when testifying
The most important things for you to remember when testifying are as follows:
* Tell the truth.
* Be specific - instead of saying "I can’t walk very far and I can’t lift very much," say "It’s about 25 yards to my mailbox. When I get to the mailbox, I have to stop because my knees hurt so bad and my chest hurts. When I come back, I have to support myself on a fence so I won’t lose my balance" "As far as lifting, I tried to lift a gallon of milk about a month ago, but I could not hold it, even with both hands, and it fell and spilled all over the floor."
* It is very important that you remember and practice being specific. It has been our experience that you will be nervous, and that at a hearing, it will be hard to think about how much you can lift, how far you can walk, etc. Practice ahead of time!
* Be very descriptive when describing pain. Don’t say "it hurts a lot." Instead, say "when I get a migraine, I can’t do anything. I feel nauseated and sick. I turn off the lights, lie in bed with a cold compress on my forehead, and try not to think at all. It usually takes my medicine about an hour to kick in - even that does not help - it just puts me to sleep."
* If you need to stand up and walk around, do so. Judges don’t mind if you have to stretch out. This is especially important if you testify that you can sit without interruption for no more than 15 minutes, then sit still at your hearing for an hour.
* Say "yes" or "no," not "uh-huh" or "huh?" or just nod or shake your head. Remember that your hearing is being tape recorded.
* Don’t curse.
* Dress neatly - you don’t need your Sunday best, but you should avoid blue jeans and T-shirts.
* Bring your bottles of medicine - the Judge may want to see them.
* Your attitude during your testimony is important. Remember that your Judge sees claimants every daywho want benefits. Your attitude ought to be "if I could work I would work." Describe for the Judge what you did and how you enjoyed being productive and useful. Don’t tell the Judge that you are "disabled" - that is his job to decide.
After listening to your testimony, the Judge will then take the Expert Witness testimony and ask questions of the Expert Witnesses. Your attorney will also be given an opportunity to ask questions of the Expert Witnesses.
* Jonathan Ginsberg is a practicing Social Security attorney in Atlanta. This material is reproduced with kind permission of the author from his "Social Security Disability" resource website - http://www.4socialsecuritydisability.net. © 2007, Six Point Advertising and Marketing LLC. In addition to his website, Mr. Ginsberg maintains a blog (http://www.ssdanswers.com) where patients may submit questions and receive professional responses; and an Internet Social Security Disability radio program featuring Q&A and interviews "about winning case strategies and forthcoming changes to the disability adjudication process."
Tags: SSDI, fibromyalgia, disability, employment