Saturday, August 2, 2008

Laziness vs. CFS

http://www.time.com/time/health/article/0,8599,1827106,00.html

Is there a laziness gene?

(excerpts)

Based on some intriguing preliminary studies in animals, J. Timothy Lightfoot, a kinesiologist, and his team at the University of North Carolina, Charlotte, suggest that genetics may indeed predispose some of us to sloth. Using mice specially bred and selected according to their activity levels, Lightfoot identified 20 different genomic locations that work in tandem to influence their activity levels

Lightfoot, who originally wanted to coach college basketball and is himself an avid athlete, began studying activity levels as a way to try to figure out why, given all we know about the overwhelming health benefits of physical activity, so many people still choose not to exercise.

Exercise-prone mice put in a good 5 to 8 miles per day (the equivalent of an average man running 40 to 50 miles a day) vs. 0.3 miles per day for inactive mice. While the exercise wheels of the activity-prone mice would turn all night, some of the sedentary mice devised ingenious ways to avoid activity.

"When we used to talk about activity, it was whether or not people decided to be active," says Lightfoot. "Now it's clear that there's an inherent drive as to whether one is active or not active."

Exactly how that drive plays out in the body is still a mystery. There are two theories, Lightfoot says: Genes may affect either the way muscles work — perhaps causing them to use energy more efficiently and preventing fatigue — or some higher-order biochemical circuit in the brain, such as levels of the neurotransmitters dopamine or serotonin.

* * *

We’ve all known people who are too lazy to get off the couch, and then there are CFS patients, many of whom were avid athletes (both casual and Olympian) before they got sick, and would love to return to their previous level of activity. As Lightfoot says, "an inherent drive" to be active.

Had you asked my hobbies in 1982, 5 years before the virus, I would have told you dancing, playing volleyball, playing softball and taking long walks/hiking in the nearby mountains. I walked 3-4 miles a day on weekdays and 10-20 on weekends. Stitching was something I did on lunch hours and buses, places I couldn’t dance or play volleyball, and reading was only when it was too dark or rainy to be outdoors.

Had you asked my hobbies in 1992, 5 years after the virus, they would have been sitting on the couch stitching, sitting on the couch reading, and sitting on the couch watching other people play baseball. My personality hadn’t changed, but my health had – there was a Volleyball Café between the bus stop and my apartment, which was taking sign-ups for evening leagues, but by the time I got to their driveway, I was so exhausted from working an 8-hour day that I didn’t have it in me to walk through the parking lot to get to the café to sign up ... much less to actually play. I thought about it every day for a couple of years, and every day it was the same thing: "I’m not sure I have enough energy left to walk the 2 more blocks home without resting, I certainly am not able to play volleyball for an hour."  That's the "inherent drive" to be active, despite the illness that left me unable to be as active as I once was.

Had you asked my hobbies in 2002, 15 years after the virus, I would have told you my hobbies were lying squarely in the middle of the bed, flat on my back, hoping that I would not pass out, and praying for the screaming tinnitus to stop before it drove me to suicide. I couldn’t sit up to stitch, I couldn’t concentrate enough to read, and I kept the TV tuned to the talking heads on CNN because music of any sort (even the almost imperceptible background music of a movie) was too often in a key that clashed with the ringing in my ears. I hadn’t stopped thinking "I’d love to take a walk and go exploring", but the simple fact was, if I got off the horizontal I very quickly got dizzy and frequently passed out.

This is the difference between CFS and depression: people with depression have no desire to be active; they’re perfectly happy to stay on the couch. People with CFS want to get up and go out and do the things they used to do, but their bodies don’t cooperate. There’s the constant frustration of that "inherent drive" to be active, and the reality that if you stand up from the couch, you’re going to come to on the floor.

People’s personalities don’t change. Avid athletes don’t one day decide to become couch potatoes, and overachievers don’t overnight turn into sloths. The hard-charging businessman who escapes the rat race often starts training for a different kind of race, having been the best in his field, he now wants to best a field of world-class marathoner. The top lawyer, having made his millions, sets out to be a top-selling novelist. But, barring some outside force, like post-viral paralytic muscle weakness, avid athletes don’t take to their beds like delicate Victorian ladies. It’s just not in their nature.

Yet, despite the large number of CFS patients who were avid athletes, and the observations of CFS experts like Dr. Bell that patients tried to go back to their athletic endeavors and relapsed, the myth still remains that CFS patients are merely lazy and all they need is a kick in the butt to get off the couch and back to work.

Hopefully this genetic research proving that some people are born lazy and some are born active will quash that myth once and for all, and those of us who were once athletic and are now disabled will not have to listen to the rantings of those who think we've simply become lazy.

Friday, August 1, 2008

Ampligen (one of two drugs effective against CFS)

FDA accepts antiviral drug AmpligenR for review as first-ever ME/CFS
(`chronic fatigue syndrome') therapeutic

ImmuneSupport.com

07-08-2008

July 8 – After 30 years in development and testing, the
experimental "antiviral/immune modulatory" drug AmpligenR has been
accepted by the FDA for review as potentially the first prescription
drug approved in the U.S. for treatment of ME/CFS – specifically for
certain patients with severe ME/CFS.

Delivered intravenously, typically twice weekly over a year or more,
AmpligenR (AMPLified GENetic activity) has been available in Belgium and Canada for ME/CFS and HIV treatment since 1996.

AmpligenR (polyI:polyC12U) - still allowed only in specific clinical
trial settings conducted under U.S. governmental authorization - is
termed "a nucleic acid drug," designed to "modulate" the body's
immune system.
Its mechanism of action in ME/CFS "is not entirely
clear," but it is thought to act on two enzyme systems so as to help
the immune system destroy viral RNA and speed the death of virus-
affected cells. In particular it may "downregulate" an anti-viral
pathway which research suggests has become "upregulated" in certain
ME/CFS patients (the 2-5 Synthetase/RNase L anti-viral pathway).

The drug's maker – Philadelphia-based Hemispherx Biopharma, submitted
a New Drug Application to the FDA in 2007, and had been asked to
answer a series of questions. The FDA's acceptance of the drug for
safety/efficacy review was based on receipt of the requested data.
The maker reportedly suggests it is also researching oral delivery of
the drug.

A "Who's-Who" of the world's leading ME/CFS specialists have
participated in AmpligenR trials over the years.
---

To: All
From: Mike

At the last support group meeting (July 6th) we briefly discussed the
two new drugs approved by the FDA for the treatment of Fibromyalgia
(Lyrica and Cymbalta). I mentioned my feeling that the approval of
those drugs for FM pain made a huge difference in the perception of
the public and the medical community that Fibromyalgia was a real and
serious condition.
There is no similar FDA approved drug for the treatment of ME/CFS.
The one drug closest to approval is Ampligen. The article that I
posted says that Ampligen was "accepted" for study of efficacy and
safety by the FDA.
The process of getting approval by the FDA for a new drug is long,
expensive, and painstaking. Ampligen has been studied and tested for
over 30 years. Partly that's because the drug company making Ampligen
is very small and has a "checkered" history. They've almost gone
bankrupt a few times and they've never had success getting any drug
approved previously, that I know of.
Having said that, Ampligen is now on the FINAL step to getting FDA
approval.
They've done the clinical trials, they've submitted an NDA
(a NEW DRUG APPLICATION), they've done everything the FDA wanted them
to do, to this point.
Now the FDA has to look at the results of the clinical trials done by
the drug company and decide if Ampligen is superior to placebo,
effective in treating CFS, what potential side effects there are, and
then render a verdict. This could still take months, but after 30 years we have never been this close to a drug approved specifically for CFS.
Mike
---

Ampligen, if approved by the FDA, would be a very expensive drug. I
think someone (Karen?) at the support group meeting said it ran a
couple thousand dollars per dose. That would still be the going rate
if it got approved by the FDA, so it's doubtful that many insurance
companies are going to jump to cover the cost of the treatments.


It is true that once a drug gets FDA approval, more doctors will feel
comfortable prescribing it to patients. If the drug begins to show
positive results, and doctors increasingly prescribe it, the cost of
the treatments will often go down. (Simple supply and demand, the
drug company doesn't have to charge as much per dose if they can sell
more of the doses.)

I don't think the average CFS/ME patient would be able to obtain
Ampligen at first. But I do think if the drug were to receive FDA
approval, that would be a huge psychological boost to patients with
this illness. As we've learned, the path to respect is slow, and once a drug is approved specifically for CFS it's another step to respectability. After all, how can there be a drug for an illness, if there's no illness? It MUST be REAL. RIGHT?

Keeping my fingers crossed.
Mike
* * *

According to "Osler's Web" (page 538) in 1991 Dr. Peterson observed "There's not a chance the Food and Drug Administration is going to approve this drug.  How can they approve a drug for a disease the NIH says doesn't exist?"

Dr. Cheney predicted they would delay approval as long as possible.  "They don't have the guts to kill it, because the patients will kill them.  But they don't have the guts to approve it, because Straus will kill them."

Straus is gone now, so maybe now, after decades of delays and excuses, we can finally get the best available drug to treat CFS.

As Mike points out, it's currently dreadfully expensive.  However, a lot of CFS patients were in good-paying careers before they were struck down.  If the government were willing to pay for me to get it for the first year or so, until I have enough improvement to go back to my former career, I would then be earning enough to cover the cost myself until retirement age.   Unfortunately, our government being pennywise and pound-foolish, I suspect that they would rather do without the next 20 years of my paying taxes on that good income than to pay the upfront costs of treatment that might get me back to work.

Speed of Mental Operations in Fibromyalgia

Speed of Mental Operations in Fibromyalgia: A Selective Naming Speed Deficit.

J Clin Rheumatol. 2008 Jul 17. [Epub ahead of print]

Leavitt F, Katz RS.

From the Department of Behavioral Sciences; and Department of
Internal Medicine, Section of Rheumatology, Rush Medical College, Chicago, IL.

PMID: 18636019


OBJECTIVE: Abnormal processing of information in fibromyalgia may
hold clues to brain abnormalities in this illness.
The purpose of
this study is to examine the speed of mental operations in people
with the fibromyalgia syndrome (FMS) under the pressure of time. The
central question addresses whether FMS is associated with processing
speed deficits across a spectrum of speeded tasks.

METHODS: Sixty-seven patients with fibromyalgia with a history of
memory complaints and 51 controls presenting with complaints of
memory loss completed 10 timed cognitive measures of processing
speed. Controls were patients with memory complaints who did not have FMS.

RESULTS: The majority of FMS patients (>70%) performed within 1
standard deviation of the norm on 7 or more of 10 speeded measures.
However, more than 49% of FMS patients tested as impaired (>1.67 SD
below normative mean) on 2 specific validated speed tasks (reading
words and naming colors). Compared with controls, the number of FMS
patients showing impairment was 2.0 times greater for reading speed,
and 1.6 times greater for color naming speed. A mean time delay of
203 milliseconds was recorded for reading words and 285 milliseconds
for naming colors in the FMS impaired sample. A 203 milliseconds
delay in reading words represents a 48% (203/417) time increase over
the normal time for reading the same stimulus word.

CONCLUSION: Abnormalities in naming speed are an unappreciated
feature of FMS. Selective deficits in naming speed in association
with otherwise well preserved global processing speed set patients
with FMS apart from controls with memory complaints. Clinicians would
be wise to specifically request adding a rapid naming test such as
the Stroop Test to the cognitive battery; to document cognitive
dysfunction in FMS patients who otherwise appear to test normally,
despite often intense complaints of memory and concentration
difficulties that can affect job performance and increase disability.

* * *

Dr. Sheila Bastien has also identified a neuropsychological "signature" for CFS, which is very different from the test results for depression.  If you're applying for Disability, your attorney may want to read the sections of "Osler's Web" relating to Dr. Bastien's testing to verify that your test results are what they should be.

Fibromyalgia on CNN.com

http://www.cnn.com/2008/HEALTH/conditions/07/14/hm.fibromyalgia/index.html

(excerpts)

Lieberman believed it is related to a disordered sleep pattern and poor exercise. "It appears to be more of a neuro-chemical process," he said. "In other words, there really is no inflammation in patients with fibromyalgia."

Getting a proper diagnosis can sometimes be just as frustrating as finding out what's behind the disease.

"Fibromyalgia is to some extent a diagnosis of exclusion," Lieberman said. "There are lot of things it can be confused with such as thyroid disorders, metabolic disorders and certain rheumatologic inflammatory conditions."

"Sometimes fibromyalgia is used as a wastebasket term if a patient has pain and they don't know what it is from," he said. "It is frequently misdiagnosed. In fact, it is overdiagnosed and it is underdiagnosed."

The doctor is quick to point out that even with proper medication and adequate exercise, fibromyalgia has no cure.

Although Lieberman said some of his patients report the symptoms tapering off in their mid-50s and -60s, others are faced with years of managing the condition.

* * *
One of the problems faced by fibro patients is that they have routinely been sent to rheumatologists, who know everything about inflammatory conditions like arthritis, and try to treat fibro the same way.  Except that fibro is non-inflammatory, so NSAIDs won't do anything except give you an ulcer.

CFS, like fibro, is both under-and over-diagnosed.  There are doctors who think every case of "fatigue" is CFS, and others who diagnose every case of CFS as depression.  It's critical to get your diagnosis confirmed by an expert, so that you're not taking the wrong pills that won't help you (and may make you worse).

Empowerment from Online Support Groups

Note: The full text of this article is available
for free at
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2483925  .
_______________________________________________________________________________



Self-reported differences in empowerment between lurkers and posters
in online patient support groups.

J Med Internet Res. 2008 Jun 30;10(2):e18.

van Uden-Kraan CF, Drossaert CH, Taal E, Seydel ER, van de Laar MA.

Institute for Behavioural Research, University of Twente, PO Box 217,
7500 AE Enschede, The Netherlands.
c.f.vanuden-kraan@utwente.nl

PMID: 18653442


BACKGROUND: Patients who visit online support groups benefit in
various ways. Results of our earlier study indicated that
participation in online support groups had a profound effect on the
participants' feelings of "being empowered." However, most studies of
online patient support groups have focused on the members of these
groups who actively contribute by sending postings (posters). Thus
far, little is known about the impact for "lurkers" (ie, those who do
not actively participate by sending postings).

OBJECTIVE: In the present study, we explored if lurkers in online
patient support groups profit to the same extent as posters do.

METHODS: We searched the Internet with the search engine Google to
identify all Dutch online support groups for patients with breast
cancer, fibromyalgia, and arthritis. Invitations to complete an
online survey were sent out by the owners of 19 groups. In the online
questionnaire, we asked questions about demographic and health
characteristics, use of and satisfaction with the online support
group, empowering processes, and empowering outcomes. The online
questionnaire was completed by 528 individuals, of which 109 (21%)
identified themselves as lurkers.

RESULTS: Lurkers (mean age 47 years) were slightly older than active
participants (mean age 43 years, P = .002), had a shorter disease
history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and
reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P =
.004). No significant differences were found in other demographic
variables. Posters indicated visiting the online support groups
significantly more often for social reasons, such as curiosity about
how other members were doing, to enjoy themselves, as a part of their
daily routine (all P < .001), and because other members expected them
to be there (P = .003). Lurkers and posters did not differ in their
information-related reasons for visiting the online support group.
Lurkers were significantly less satisfied with the online support
group compared to posters (P < .001). With regard to empowering
processes such as "exchanging information" and "finding recognition,"
lurkers scored significantly lower than posters. However, lurkers did
not differ significantly from posters with regard to most empowering
outcomes, such as "being better informed," "feeling more confident in
the relationship with their physician," "improved acceptance of the
disease," "feeling more confident about the treatment," "enhanced
self-esteem," and "increased optimism and control." The exception was
"enhanced social well-being," which scored significantly lower for
lurkers compared to posters (P < .001).

CONCLUSION: Our study revealed that participation in an online
support group had the same profound effect on lurkers' self-reported
feelings of being empowered in several areas as it had on posters.
Apparently, reading in itself is sufficient to profit from
participation in an online patient support group.

Distrust of the Medical System (well-earned, I say!)

http://www.nytimes.com/2008/07/29/health/29well.html?th&emc=th  

July 29, 2008

Well

Doctor and Patient, Now at Odds

By TARA PARKER-POPE

A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.

The relationship is the cornerstone of the medical system —nobody can be helped if doctors and patients aren’t getting along. But increasingly, research and anecdotal reports suggest that many patients don’t trust doctors.

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.

The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of "what your doctor won’t tell you" books promising previously withheld information on everything from weight loss to heart disease.

The Internet is bristling with frustrated comments from patients. On The New York Times’s Well blog recently, a reader named Tom echoed the concerns of many about doctors. "I, as patient, say stop acting like you know everything," he wrote. "Admit it, and we patients may stop distrusting your quick off-the-line, glib diagnosis."

Doctors say they are not surprised. "It’s been striking to me since I went into practice how unhappy patients are and, frankly, how mistreated patients are," said Dr. Sandeep Jauhar, director of the heart failure program at Long Island Jewish Medical Center and an occasional contributor to Science Times.

He recounted a conversation he had last week with a patient who had been transferred to his hospital. "I said, ‘So why are you here?’ He said: ‘I have no idea. They just transferred me.’

"Nobody is talking to the patients," Dr. Jauhar went on. "Everyone is so rushed. I don’t think the doctors are bad people – they are just working in a broken system."

The reasons for all this frustration are complex. Doctors, facing declining reimbursements and higher costs, have only minutes to spend with each patient. News reports about medicalerrors and drug industry influence have increased patients’ distrust. And the rise of direct-to-consumer drug advertising and medical Web sites have taught patients to research their own medical issues and made them more skeptical and inquisitive.

"Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified," said Dr. Robert Lamberts, an internal medicine physician and medical blogger in Augusta, Ga. "When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want."

Others say the problem also stems from a grueling training system that removes doctors from the world patients live in.

"By the time you’re done with your training, you feel, in many ways, that you are as far as you could possibly be from the very people you’ve set out to help," said Dr. Pauline Chen, most recently a liver transplant surgeon at the University of California, Los Angeles, and the author of "Final Exam: A Surgeon’s Reflections on Mortality" (Knopf, 2007). "We don’t even talk the same language anymore."

Dr. David H. Newman, an emergency room physician at St. Luke’s-Roosevelt Hospital Center in Manhattan, says there is a disconnect between the way doctors and patients view medicine. Doctors are trained to diagnose disease and treat it, he said, while "patients are interested in being tended to and being listened to and being well."

Dr. Newman, author of the new book "Hippocrates’ Shadow: Secrets from the House of Medicine" (Scribner), says studies of the placebo effect suggest that Hippocrates was right when he claimed that faith in physicians can help healing. "It adds misery and suffering to any condition to not have a source of care that you trust," Dr. Newman said.

But these doctors say the situation is not hopeless. Patients who don’t trust their doctor should look for a new one, but they may be able to improve existing relationships by being more open and communicative.

Go to a doctor’s visit with written questions so you don’t forget to ask what’s important to you. If a doctor starts to rush out of the room, stop him or her by saying, "Doctor, I still have some questions." Patients who are open with their doctors about their feelings and fears will often get the same level of openness in return.

"All of us, the patients and the doctors, ultimately want the same thing," Dr. Chen said. "But we see ourselves on opposite sides of a divide. There is this sense that we’re facing off with each other and we’re not working together. It’s a tragedy."

well@nytimes.com

* * *

Too many doctors have only themselves to blame.

As Dr. Jerome Groopman wrote in "How Doctors Think", they often leap to conclusions after hearing just a few symptoms, and then ignore any evidence that they are wrong.

In 1988, I received a diagnosis from a virologist. That diagnosis was later confirmed by another specialist. Yet, in 2000, a PCP who was bound and determined to see a depressed divorcee convinced himself that both experts were wrong and he was right.

Had this doctor been honest with me upfront, that he does not know the first thing about the condition I was previously diagnosed with, I would have gone to someone else, no harm, no foul. Instead, he strung me along for months with empty promises that I'd get the tests I wanted and the referral to the specialist "next time" -- his ego was more important to him than my health. Now, because of him, I cannot work full-time, but I am also precluded from getting Disability benefits.

His best defense was "nothing you said made sense" ... which is true: nothing that I said made sense in the context of post-divorce depression because I was not describing depression. I was describing a post-viral neurological condition. But he'd already made up his mind what he was supposed to hear, and discarded all the puzzle pieces he was given that would have produced the correct diagnosis.

Thursday, July 31, 2008

The Latest from One Click

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.

 

Wednesday, July 30, 2008

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. 

Tuesday, July 29, 2008

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.