Saturday, July 11, 2009

Not all in the mind, after all

PERMISSION TO FORWARD, RE POST AND USE IN NEWSLETTERS
News item alert

Title: Yuppie Flu isn't all in the mind after all (Kent Messenger, 3 July
2009)

Newspaper version only, not online:

(Short but punchy article)

Supporters of people suffering from Chronic Fatigue Syndrome - once dubbed
"Yuppie flu" - have been given hope by a new study which for the first time
states that the condition is a physical illness.

Members of the West Kent based Grace Charity have distributed the document
on Myalgic Enchepalomyelitis (ME) to GP surgeries throughout Kent, thanks to
funding from one of its patrons, former Bishop of Maidstone Graham Cray.

The groundbreaking document by two doctors from Canada gives a clinical case
for the condition and guidelines for GP's on how to diagnose and treat it.

Catherine Ashenfelter for the Grace Charity said "This booklet gives a new focus, a new direction. You cannot ignore the science."

--------------------------------

Any letters in response should be sent to e-mail address
eveningnewsletters@archant.co.uk
messengernews@thekmgroup.co.uk
that is messengernews at thekmgroup dot co dot uk

making it clear that you intend it for the letters page.

Note: To click the links to any letters in response and, from there, any
subsequent responses, as well as to the original article, it is necessary to
be registered with ME Free For All.org (Details for new subscribers below)

To read a letter from Dr John Greensmith
click here http://www.mefreeforall.org/July-2009.1348.0.html#c7559

I know that at least two people intend to reply but please do try to boost
these numbers, especially if you are a fan of the Canadian guidelines. This
is in a UK newspaper but is equally relevant the world over.Please do send a
letter in reply if you can manage it to the e-mail address given above as
the more of us who submit one, the greater chance of at least one getting
published.
Or just laugh your head off with our joke of the day
here http://www.mefreeforall.org/Joke-of-the-Day.378.0.html


Cheers
John

Friday, July 10, 2009

Schwarzenegger's fraud allegation tough to pin down

 
The governor claims 25% fraud in In Home Support Services (caregiving that keeps disabled people in their own home at a fraction of the cost of nursing homes).  However, it appears that he picked that number out of thin air.
 
The Legislative Analyst's Office says "I've never had anyone tell me where that number comes from".  The Bee reports "The 25% figure is the only estimate for fraud cited in a document from the Governor's Office outlining savings he believes could be achieved through anti-fraud measures."  District Attorney Jan Scully admits the 25% number "has not been documented", and "suggested it may be based on surveys that detected a rate of 25% fraud in a different type of social program". 
 
"Frank Mecca, executive director of the County Welfare Directors Association -- counties directly supervise IHSS -- said he doubts the figure.  'We don't know anyone who thinks there is a 25% fraud rate in this program,' he said."
 
* * *
Why don't they assume a 25% fraud rate in government contracting?  In doctors' Medicare billings?  In wealthy people's tax returns?  Why is it always the poor and disabled who are accused of fraud, while the big money goes uninvestigated?
 
It's because the poor and disabled are not politically well-connected.  We don't make huge campaign contributions that blind elected officials to our faults.  They protect their "friends" and donors, and sacrifice the people who really need help.
 
In order to get IHSS, you must have been declared disabled by a judge; it's not something you can get just by asking for help.  The caregiver is usually a family member who has given up their career to care for the patient (would you quit your $3500 a month job to earn $1200?).  The number of hours the caregiver is permitted to claim payment for is usually far less than they actually work.  This is thankless work, including changing diapers and cleaning sh** off the patient, which most people would not do for the $8-10/hour caregivers are paid.  These people are on call 24/7 and rarely (if ever) get a day off.  They don't get to say "I'm not bringing you a drink of water because I'm off the clock" or "can changing your diaper wait till I'm officially on duty at 8:30?"
 
The alternative is to take all the people who are getting IHSS and put them in nursing homes at three times the cost.  That's not the most efficient use of taxpayer money.
 
But, from his perch in millionairedom, it's easy for the governor to demand the program be decimated or even shut down entirely with his claims of 25% fraud.  He will always be able to afford to hire help with his own money.  But someone who became disabled at a very young age, or who worked in low-paying jobs, does not have the financial wherewithal to do that, and has to rely on a government program.
 
If you became disabled and therefore lost your income, could your family also withstand the loss of your spouse's income to quit and care for you?  Probably not.  That's the situation these families are in, and they should not be scapegoated with unsubstantiatable claims of 25% fraud.
 
It's easy to say "not me", but I was doing everything right: daily exercise, healthy diet, didn't drink/smoke/use drugs, when I got sick.  If it happened to me, it could happen to you.
 
 
 
 
 

CFS on Stage

This play needs to be performed in every city!
 
 
Source: Provo Daily Herald
Date:   July 9, 2009
Author: Amber Foote
URL:    
http://heraldextra.com/entertainment/article_651ce8a5-8e5d-598f-af48-eef6d05c5f34.html
Ref:    http://ssstanding.blogspot.com


Husband's chronic fatigue threatens his marriage in new play
------------------------------------------------------------

It's difficult to find happily ever after in marriage when your spouse
sleeps all day and the only dreams coming true are the ones that float
off his pillow. That's the dilemma facing Grace Arden in the play
"Standing Still Standing," a joint production of Bluelight Stage and
Leilani Productions. The show is being presented by New Play Project
at Provo Theatre Company tonight through July 27.

"Standing Still Standing," written by local playwright Melissa Leilani
Larson, is a story about love and life, and finding that elusive
happiness in marriage even amid turbulent times and unexpected
challenges. For Grace's husband, Ben Arden, who has chronic fatigue
syndrome, it's a trick just to stay awake.

"When Ben was a junior in college," said William McAllister, who plays
the character of Ben Arden, "he got bit by a tick." In a comic book,
the bite might have turned Ben into a superhero, but in the real-life
world of "Standing Still Standing," it merely resulted in his being
stricken with CFS.

"It's an incurable illness that leaves Ben exhausted all the time,"
McAllister said. "He's been asleep for most of his married life, and
it's had a toll on his relationship with his wife, Grace."

The Ardens, who live in Seattle, have been married for three years and
are financially supported by Grace -- who is ready to wake things up
in their marriage and move on with their life. Since much of Ben's
time is spent snoozing, however, his visions of Billy Joe, the Pope
and other unexpected guests who pop into his dreams are the most
lively part of his existence.

Grace is sick and tired of the status quo. Ben is also sick, but
mostly just tired. Both of them want more out of life, but whether
their futures will be shared or separate is an open question.

"Grace is ready to move forward and buy a house and have kids," said
Landon Wheeler, director of "Standing Still Standing." "Ben doesn't
know if he can make those commitments, because he doesn't know what
each day will be like with CFS. Both Ben and Grace want a happily ever
after, but have made other things their priority and have forgotten to
put each other unselfishly first."

The question for the unhappy couple, ultimately, is how committed they
are to maintaining their marriage.

"We are at a point where we need to make some choices," McAllister
said of the couple's relationship. "Do we go on living like we have
been the last three years? Do we stay together, or do we decide to
take the easy way out and split up?"

"Standing Still Standing," Wheeler said, deals with real-life issues
and real people, while bringing humor to a challenging situation.
Humor, and a thought-provoking message about life, love and not just
finding, but choosing, happiness.

"This show works," the director said, "because it doesn't beat you
over the head with its message. The writing is subtle and natural and
speaks on many levels. You can take multiple things out of the show,
depending on where you are in your life."


If you go

'Standing Still Standing'
When: Performances nightly at 7:30 p.m. tonight through July 27 on
   Thursdays, Fridays, Saturdays and Mondays; matinees at 2 p.m. on
   Saturdays
Where: Provo Theatre Company, 105 E. 100 North, Provo
Tickets: $12/adults, $10/students and seniors
Info: http://newplayproject.org

--------
(c) 2009 Provo Daily Herald

ME Sufferers plead for Research

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
  >>>>> Help ME Circle <<<<
>>>>      10 July 2009        <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

Dear Readers/Friends,

This is probably one of the last *Help ME Circle*'s for
the coming time. Since many months my pc works
terrible. I have to restart several times a day. And now
he is so bad, that I can only work in 'safe mode'.

I have to reinstall XP, which is much work, that I hate.
With of course the hope that this will solve the
problem.


Apart from this: my bulletin cost me so much time
and effort, that I have let slide all my personal affairs
for many years. Which causes of course all kind of
bureaucratic problems - One example is that I have
to make my tax declaration for 2006, 2007 and
2008.



It is possible that I come back one or two times; but
for security I want to thank meanwhile all the people,
who sent me so many heartwarming letters of thank.

And I want to ask apologies for the many people,
who sent me questions or important remarks, which
I couldn't answer. I really can't do more, then I did.
Forgive me please.


With tulips from Amsterdam,


~jan van roijen


```````````



http://bit.ly/ZXe3E



WalesOnline


Health News



Me sufferers plead for
research into their illness


jul 8 2009

by staff reporter, south wales echo


me is one of the most
misunderstood illnesses.


Ceri isfryn spoke to three sufferers whose
dreams have been shattered by the
condition

can you imagine not sleeping for 48
hours, then running a marathon with a
hangover and a dose of flu?

That's how it can feel to have ME.



Myalgic encephalomyelitis, or chronic
fatigue syndrome, causes long-term and in
some cases debilitating exhaustion which
is rarely relieved by sleep.

The first symptoms are often similar to flu,
but they do not go away and, in many
cases, may become worse.

It is estimated that 250,000 people in the
uk have the condition. Anyone can develop
it, although it appears to be more common
in women, who make up 75% of cases.


Someone who knows full well the impact of
the condition is ex-flautist eleanor dent,
who tutored young musicians at the royal
welsh college of music and drama.

However, since developing me
six-and-a-half years ago, she has been
unable to play her flute or work at all as
she doesn't have the mental or physical
energy to do either.


Eleanor lives with her husband john and
two teenage children in heath, cardiff.
Eleanor gets frustrated as her husband has
to do all of the household chores while also
holding down a full-time job as a project
manager with the vale of glamorgan county
council.


"my muscles are too weak to even use an
iron, so I have to pay somebody to come
in. If I do too much housework, I make
myself ill and it takes days to recover."


i can just about walk 100m once a week if
i'm lucky, but some weeks I can't even
manage that."

i'm 49, yet I feel at least 30 years older
because of me."


remarkably, there is no diagnostic test
available for the illness on the nhs. As a
result of this, eleanor has never been
referred to a consultant and she cannot be
prescribed any drugs other than basic
painkillers.

She is angry at the government for not
providing more funding for me research.


"i've been writing to my mp for the past
six years to no avail. I've given up."

eleanor noted that there are great
similarities between the symptoms of me
and ms, yet the difference in research
funding between the two is vast.


imagine showing all of the symptoms of
ms but having none of the care facilities
or drugs. As it stands with me, you have
to die before you get a proper diagnosis"



another sufferer whose life has been
destroyed by me is 24-year-old michelle
penny of dinas powys. She been
housebound for the past 10 years as a
result of her illness.


Michelle has to rely on her mother to do
the simple tasks that non-sufferers take for
granted, such as washing, dressing or
eating.

"on days when I feel particularly unwell, I
can't get showered or dressed at all and I
spend the day quietly lying on the couch"

"on better days I can get up slowly,
shower and dress with help. This can take
up to two hours to achieve and I usually
need a rest afterwards. I then have lunch
and go back to bed, where I spend the rest
of the day"


despite the severity of her condition,
michelle no longer receives any care or
support from the nhs, except for a
repeat painkiller prescription which dates
back to 1999.

As a result she says she finds it difficult to
claim benefits
as she has no medical
backing for her claims.


"i don't think there is enough support
from the nhs. There is no cure for me but
showing a patient a little understanding
by aiding with benefit claims would be
helpful."


her education has also been badly affected
by the disease and she claims that the
options available to those who can't
physically attend lessons or lectures are
extremely limited.

my goal is to go into teaching but due to
the amount of time that I missed from
school, I left with no qualifications. I have
managed to sit four gcses by following
e-learning courses from home.


"one day, when I am well, I will hopefully
finish my studies but at the moment my
me is too severe and as I am physically
unable to go to college or university there's
little I can do."


michelle's entire teenage life has been
lost to the illness. She no longer speaks
to anyone who she went to school with
and describes the illness as a very
isolating one.


She said that it didn't help that
several teachers accused her of
laziness when she was initially
diagnosed, and she was bullied at
school for missing so many
lessons.



Jane colby, the executive director of the
young me sufferers and former
headteacher believes that wales is one
of the areas which displays a high level of
widespread injustice in schools that do
not recognise me as a serious physical
disease.

She also feels that there is insufficient
practical support being offered by the
government.

"money which has been spent by the
government has been unwisely allocated.
Clinics have been set up which are mostly
focused on psychological treatment
instead of practical support. Such clinics
have even supplanted much better
services that already existed."


the deputy chief medical officer for wales,
professor mike harmer, said:

"we recognise that further work needs
to be done and the establishment of the
seven new local health boards later this
year will provide more opportunities to
drive forward services as they are
responsible for the commissioning of local
services."


like michelle, sharon price is also an me
sufferer who has had to deal with a drastic
change of lifestyle.

At 17 she was an international welsh
gymnast who aspired to compete at the
commonwealth games. She is now 35, and
her life has been radically changed by me.


"life is tough, day in, day out. It is
relentless, you never get a day off for good
behaviour and there is always a price to
pay for doing things
, so I try and achieve a
balance of doing as much as I can without
overdoing it."

although she is able to teach languages
part-time and has her own company,
languages for living, she can work only
limited hours a day and suffers with what
she describes as:

"burning, screaming pain in her neck, back
and shoulder".


Sharon has found that the only thing that
eases her pain is acupuncture and
chiropractic treatment – both of which she
must pay for herself.

"i don't receive any government financial
assistance and I never have. You are very
much left to your own devices with me and
it can be incredibly isolating.


"it is bad enough that a quarter of a
million uk citizens are putting up with this
serious, chronic illness day in, day out,
but it is even more heartbreaking living
with the knowledge that there is very
little biomedical research going on in the
world to try to understand me and to try
to find a cure to relieve the suffering".


"when is the government going to
stop ignoring us and fund some
biomedical research into this
disabling, complex condition?"




do you know how it feels to be utterly
and completely without hope

to watch the well through jaded
windows passing by each day

while you are walled alive inside a home
you would escape from

if you could, though you have not
committed any crime,

incarcerated indefinitely, no parole,
appeal or pardon?

Not one prison visitor ever calls, no social
worker, education officer,

welfare woman, surly screw, committee
member, doctor, nurse or shrink.

Do you know the helpless, heartless
moment when the politicians

send polite replies to your appeals for
help? 'we know. We sympathise.

We're sorry. We will do our best. the
years go by. You write again.

we know. We sympathise. We're sorry.
We will do our best.' they don't.

The nhs will tell you: 'we are wonderful.
We help so many people. We're
improving.

We've improved. We're winning. We
have reached our targets. we don't care

is what they should be saying. not for
you. You are nothing much to us.

You are a bafflement, a nuisance, an
embarrassment, a perplexing puzzle.

Failure is not good for our pr. Your
condition undermines our success rates.

We shall continue to ignore you, though
you mushroom and envelope us.

Beware complacence. Here we come,
dragging wasted bodies to your
threshold,

whimpering sotto voce through your
letterbox, hauling heavy limbs

to immolate two hundred thousand
corpses in a beacon blazing brightly

you cannot fail to see, you ministers, you
medics, bureaucrats, despisers

of our frailty, you excuse-makers, you
children with your clumsy, clammy,

hammy hands clasped tightly on your
ears. Make a wish, oh me people,

that every smarmy, slimy, scheming,
selfish politician might suffer

as we do and have done, will do five, 10,
15, 20 years,

a lifetime, without hope, so we can smile
and sigh and shrug our shoulders

and close the door, ignoring them in turn,
until they're dead.




Eleanor dent
 


* * *
There are many similarities between MS and CFS/ME.  Both are neurological diseases and CFS is sometimes diagnosed as "atypical MS".
 
Yet, in the US, MS receives $250/patient in research funding and CFS receives $1/patient in research funding -- much of that misspent.  CDC audits have found money allocated to CFS spent instead on research into other diseases having nothing to do with CFS, and much of the budget has been spent trying to prove we're merely depressed or otherwise emotionally unstable rather than looking into the neurological problems and the virus that causes them. 
 
No matter what research proves about CFS, Reeves is there, braying donkey-like, that patients are simply unable to handle a little stress.  Trust me, we did not rise to the top of our professions because we are emotional basket cases; personally, I thrive on stress, I loved the adrenaline rush of my career in litigation.  Then I had a severe virus and was never the same.  Dr. Fujioka of the renowned Scripps Institute points out that we've known for years that a virus can re-program the body; something Reeves apparently never learned when he got his medical credentials (apparently out of a CrackerJack box).
 
Replacing Reeves probably would not get us a larger research budget, especially in these troubled economic times, but would ensure that the pittance that we receive is spent on research that provides some help to patients rather than trying to prove it's all in our heads.  I don't know about Reeves, but my head has been examined six ways from Sunday, and no one with the proper credential has ever found anything wrong -- MDs who took Psych 101 make an amateur diagnosis, but those with training and licenses patiently explain to me why that diagnosis is wrong. 
 
(For example, if you have legitimate concerns about something based on facts, that is not "anxiety", it is a "reasonable precaution".  Someone with sudden fainting spells who chooses not to cross a high-speed high-traffic road is not suffering "anxiety" or "phobia" but is exercising reasonable safety concerns when she tells the doctors that she cannot go for a walk alone and has no one to walk with her to ensure that she is not run over if she faints in the middle of the street.  Nonetheless, this is how it was portrayed in the medical records by doctors -- like Reeves -- who refused to accept that they needed to seek out a physical reason for the problem instead of making unwarranted psychiatric diagnoses that saved them having to research/read/think.)

Thursday, July 9, 2009

Another Case of Fraud

Another $5M Medicare fraud sweep today in California. 
 
To put that in perspective, it would take the average disabled person over 400 years to collect that much in Disability benefits.  Yet, it's the victims, disabled people who are continually suspected of fraud and threatened with loss of their benefits for occasionally being able to leave home to go to the pharmacy or some community activity (aha!, you can't be disabled if you're able to leave the house once a week for an hour or two!), while doctors and medical corporations get away with millions in fraudulent claims. 
 
Trust me, the average Disability check is less than a minimum wage paycheck.  You have to wait two years after being approved for SSDI before you can get Medicare.  No one in their right mind would quit even the worst job in order to spend the rest of their life below the poverty level.  There may be people committing fraud to get union disability benefits that pay nearly 100% of their prior paycheck, but it just doesn't pay to pretend to be disabled if all you're getting is SSDI (which is about 1/3 to 1/4 of your prior paycheck).
 
Similarly, In Home Support Services caregivers are paid as little as possible, and their hours are severely limited (typically less than they actually spend giving care) but because many of them are "employed" by family members, there are constant claims of fraud and over-reporting work hours, while a blind eye is turned toward the big bucks fraud of charging the government for medical procedures never performed or medical equipment never delivered.
 
Putting an end to Medicare fraud by doctors and corporations would save the government far more money than rooting out the handful of people who are questionably collecting SSDI.  But it's the poor disabled people who are always suspect and the rich-getting-richer who are considered above suspicion.
 
It's time for the same parity to exist in this field as has just been demonstrated in criminal court, where zillionaire Bernie Madoff was given a sentence of 150 years.  On a dollar-for-dollar proportionate basis, that's still a lot less than the average purse snatcher, but at least he didn't get off scot-free, or with a penalty of paying a fine of a fraction of his ill-gotten gains.  Let medical providers who commit fraud be sentenced to life in prison.  Someone recently suggested a convicted doctor could spend his sentence providing free medical care to his fellow inmates; an admirable suggestion, which would save the State the cost of hiring a doctor.

 
 
 
 

CFS on the Radio Saturday/Sunday

In a message dated 7/9/2009 3:10:18 P.M. Pacific Daylight Time, cfidslink@cfids.org writes:

CFS AND SENIORS TO BE THE TOPIC ON NATIONAL RADIO SHOW "A TOUCH OF GREY"

Take a break this weekend to tune in to "A Touch of Grey:  The Talk Show for Grown-ups," which will feature Connecticut internist Dr. Morris Papernik in a segment about CFS.  Host Carole Marks will talk with him about the illness and how it affects the over-50 crowd on Saturday, July 11, from 10 - 11 p.m. (local time) on WABC 77 out of New York City .
 
The show will be repeated on KRLA-AM 870 in Los Angeles on Sunday, July 12, from 12 - 1 p.m. (local time). 
 
"A Touch of Grey" also airs on more than 50 stations around the country - check your local broadcast outlets to see if it's carried in your area (we've been unable to obtain a list of stations).  If not, you can listen online at http://www.atouchofgrey.com/audioshow.html (the show will be archived in two weeks).
 
We continue to promote CFS in media outreach across the country.  We'll keep you informed as other opportunities to check out local coverage are confirmed. You can view all the media coverage of CFS as it occurs by visiting the Spark! campaign web site at http://www.cfids.org/sparkcfs/media-coverage.asp.

 

July Lyndonville News from Dr. Bell

 
DAVIDSBELL.COM

 

You're receiving this newsletter because you signed up for email updates at www.DavidSBell.com.  If you no longer wish to receive this newsletter, please inform admin@davidsbell.com.

If you are unable to view this newsletter in your mail program, you can view it online at:  http://www.DavidSBell.com/LynNewsV6N1.htm.

For a print-friendly version of this newsletter, visit:  http://www.DavidSBell.com/PrintLynNewsV6N1.htm.

 

Introduction

Time flies. And it seems to be speeding up with increasing age. It has been over a year since the last Lyndonville News, and on several occasions I had tried to abandon it completely. Like most people, I blame all this on the stress.

It has been four years since I decided to "retire". It has been 35 years now, time for a change. I dearly love my patients in Lyndonville and I hope they will knock on the door of my house when they have questions. But I can no longer run an office and fight with insurance companies whenever I want someone to get an x-ray. So I put the practice up for sale for $1. And now, four years later, for the first time in over thirty years I am free!

But it was a struggle. Physicians are leaving upstate New York like lemmings going somewhere urgently, and no one wanted a solo practice way out in the countryside. But finally, a wonderful and altruistic organization called Oak Orchard Community Health Center out of Brockport took it over. It took a few years and we were able to settle on fifty cents rather than the one dollar asking price, but it was worth it. I am free at last! Well, I am now an employee for Oak Orchard. Two to three half days a week, as long as I promise not to diagnose anyone with CFS. Also, the time is carefully computerized so I cannot talk with anyone for more than 12.23 minutes.

There is one problem with the clinic, however. Everything, all the records and labs are computerized, and it is very difficult. Have you ever tried to carry on a conversation with a teenager playing a computer game? Well, it's going to be like that when you talk to your doctor from now on.

Actually I have a plan. Now that I have lots of free time I am going to be bored. So I plan to do a few things: a) legal work for patients who have been badly injured by the system just because they got sick, b) write some more books, c) put out a few issues of the Lyndonville News again, and d) really start studying CFS for the first time. I may see a few patients with CFS now and then and really go to town. I haven't worked out the details yet. But I promised a few kids that I would never abandon them, and I mean to keep this promise. We'll see what happens.

 

Literature Review

While it is not really breaking news, I wanted to put out this edition of the Lyndonville News to talk a little about the Myhill/Booth/Mclaren-Howard study. This study published a few months ago examines the bottom line in energy production, ATP production and utilization. In my opinion it is likely to be a landmark in the future. As noted before, there have been many studies looking for and finding oxidative stress in patients with CFS. However, this study looks at the end product of energy metabolism in five ways, using three separate measurements. The results of these studies show variations in individual metabolic profiles, but only one out of 71 patients were similar to healthy controls. Thus there is heterogeneity in CFS, but the overall result is reduced energy production. In other words there are likely to be different ways that energy production is compromised in CFS patients.

Their tests relied on the long history of testing for oxidative phosphorylation, and as such should be reproducible. They tested for availability of ATP in neutrophils, ATP fraction complexed with magnesium (the fraction which is available for energy), the efficiency of oxidative phosphorylation, the ability to transfer ADP into the mitochondria for utilization, and the ability to transfer the ATP into the cytosol where it is utilized. Abnormalities were seen in each area, but there were differences between patients in which area was abnormal. To neutralize this heterogeneity, each test was given a numeric factor, and the results were added together for a numeric "ATP profile". It was in this overall profile that patients differed from controls.

Another important variable used in the analysis was to compare the mitochondrial function with an overall activity profile, the Bell Ability Score (see appendix). The purpose of this was to see if there was a relationship between reduced ATP production/utilization to illness severity. There was a clear with a P < 0.001. This paper offers one method of subgrouping patients with CFS based upon the variables tested.

As with all other encouraging notes on the research on CFS, I caution patients not to get their hopes up. While this is another "diagnostic test", it does not immediately open up doors to successful treatment. But it does point the way to distinguishing specific "types" of CFS, if only this were pursued. Myhill S, Booth N, McLaren-Howard J. Chronic fatigue syndrome and mitochondrial dysfunction. Int J Clin Exp Med 2009;2:1-16

 

Old-Timer's Section

I have always enjoyed the old timers in my practice. I will miss them badly as I retire. An old timer is a patient with CFS who has seen it all come and go. They take the successes and failures in stride. They have given up trying to convince their skeptical relatives they are ill. They do not even mind the insults from the short-sighted, inadequate, and misinformed physicians they see for their bone density tests and cholesterol screening. They cope so well that it no longer requires special planning. A few are bitter.

But a few have come into acceptance. They would not mind a cure or even a good treatment or two, but they are no longer depending upon it. What is amazing to them is that they felt that they were dying for the last thirty years, but they haven't died. What's more, they may not die anytime soon. This is the old joke about CFS - "There is good news and bad news: the good news is that you are not going to die anytime soon, and the bad news is that you are not going to die anytime soon."

The old timers have put it into perspective. The government is not going to do much about CFS, their doctors are not going to read articles about it. But there are worse things in the world. No one much cares about the genocide in African countries; few care about the wars we are fighting to get the weapons of mass destruction that don't exist; few care about the homeless in the richest country in the world. The old timers watch and the time passes. Some of them don't even feel sorry for themselves because of the lot that fate has been cast for them. Some of the old timers are lucky.

 

Patient's Observations

I was fascinated by the clinical notes in the last issue Lyndonville News clinical. The comment regarding the 2 types of CFS is the sort of observation that could seem obvious to clinicians, while still being overlooked in empirical research, and even obscuring many studies' results. As a side-note, I've read a lot of scientific CFS literature since being diagnosed myself, and I haven't come across anything as thought-provoking as your Faces of CFS. I wonder if many CFS researchers are skeptical about case-studies because they may seem non-scientific; however, such detail, I think, is very productive.

What particularly interested me about the notion of a frazzled subtype is the potential role of epinephrine in CFS. Some recent studies have found propranolol useful in treating CFS and FM. This treatment struck me as a little counter-intuitive; that is, what doctor would be cruel enough to deny adrenaline to patients who can't get out of bed? If propranolol ends up being very useful, you can see why it might have been overlooked.

But I think there are a couple of general and specific connections between epinephrine and CFS symptoms, which play out in the literature on propranolol. Propranolol's effect on POTS is well-documented, but the drug probably also boosts immune functioning, reduces inflammation in certain circumstances, regulates sense and pain perception, eases digestion (particularly of carbs), and increases the threshold for exertion. Epinephrine's negative effect in these areas could fuel a self-reinforcing cycle, like Pall's NO/ONOO cycle. Moreover, anecdotal risk factors for CFS, like long-term exercise and type A personality, probably involve increased epinephrine.

Lastly, it's also curious to think about propranolol in terms of all the obtuse research that favors psychological treatment. This is because epinephrine can be consciously controlled to a small degree by, for instance, self-awareness and breathing slowly. However, if the long-term benefits of psychological treatments ultimately lie in teaching patients to control epinephrine release, then propranolol would be much more effective.

 

Another Note From a Patient Having the 2 Day Exercise Test

The first day of the exercise test: I had some symptoms of a migraine the first afternoon but was able to ward it off with coffee and Tylenol™. I was more tired than usual, and quite sore. I got a massage, stretched and relaxed.

The second day of exercise. Immediately on completion of the test I was affected cognitively and so tired I did not feel I could safely pick up and hold my 2-year-old son. I napped as my husband drove us home, and that afternoon I had a full-fledged migraine and was bedridden. I was very fuzzy minded, and I had trouble speaking. I was not capable of driving 10 minutes the next day to drop my son at daycare, so my husband had to take another day off work.

The day after the second exercise test I had a saline drip. I was still in a total fog, and felt so exhausted that I thought I would topple over at any minute. Although the migraine had resolved, I could barely find the words to speak simple sentences, and I had trouble raising my eyes to make eye contact. Upon receiving the first saline drip, I could feel a significant difference about halfway through the 1 liter bag. My mind was returning! I was still extremely tired and my pain level had not changed much. But the saline helped with almost immediate improvement in cognitive functioning.

I did receive a second bag of saline the next day but I did not notice further recovery. Altogether it took two weeks to return to my previous state, my "normal." I hope this helps others who wish to brave the test.

____________________________________

Contact: If you wish to contact Dr. Bell, e-mail to lynnews@davidsbell.com; very few inquires are answered, but comments are welcomed.

To Subscribe: If you wish to either subscribe or unsubscribe to the Lyndonville News, go to http://www.DavidSBell.com/DSBJoin.htm and enter your information. The e-mail subscription is free.

Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

____________________________________



http://www.rttr3.com/
David S. Bell/Lyndonville News
www.DavidSBell.com
1276 Waterport Road
Waterport, NY 14571
USA

 



 

Sunday, July 5, 2009

The difference in having PR

Yesterday marked the 70th anniversary of Lou Gehrig's "luckiest man" speech as he faced terminal illness with the disease now named for him.  Every major league baseball team honored Gehrig yesterday, showing highlights and having someone read the text of the speech.
 
Everyone knows about ALS or "Lou Gehrig's Disease", so it was a real shock to me to learn that only 30,000 Americans have it.  Compare that to a million with CFS -- 33 times as many patients and 1/33 as much public familiarity.  Most people can tell you at least a few symptoms of ALS, but most people (and many doctors) still think that CFS is either depression or overwork; they have no clue about the other symptoms that can make the fatigue pale by comparison. 
 
What's the difference that causes this disparity in awareness?  ALS has a famous name attached to it; CFS does not.  Supposedly Cher and Blake Edwards had it in the 1980s, but neither of them has stepped forward to take a lead role in getting attention and research funding.
 
Without a famous patient willing to be the public face of CFS, it wouldn't matter if we had a hundred times as many patients; we'd still be more obscure than the diseases that have a higher profile despite having fewer patients.
 
Who will step forward?