New Blog URL

Since AOL is shutting down the blog function at the end of this month, we've transferred the blog posts to:

http://cfs-facts.blogspot.com/

Be sure you change your bookmarks so you can visit us there.

NCF Website Updated - New Articles/Research

The website of The National CFIDS Foundation, Inc. has been updated.   Four
articles (of over 30) were selected to go onto the website from the summer 
edition of The National Forum as members have already received the  fall edition
of the newsletter.  The Memorial List has also been updated as  well as the
newest published medical journal article that has proven that  the assay for
ciguatera is a biomarker for autoimmune diseases.  This  newest research found
that chronic fatigue syndrome was an autoimmune  disease as well as Gulf War
Syndrome and prostate cancer.

Gail Kansky
President, National CFIDS Foundation, Inc.
http://www.ncf-net.org

103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535

More from One-Click

 One More Nail In The Coffin
A New York Times editorial echoes our decade old refrain: "We've long feared that the integrity of medical research is being eroded by conflicts of interest and manipulation of scientific data." In sharp contrast, we bring to your attention an important editorial by Dr. Nassir Ghaemi in the American Journal of Psychiatry (March 2008). Though Dr. Ghaemi has received funding from drug manufacturers, he pulls no punches about the adverse effects of antidepressants.
Vera Hassner Sharav, AHRP

* * *

As Dr. Yunus says, doctors manipulate the data to say what they want it to say.

The best experience I've had with any anti-depressant was the one I could say had no effect whatsoever, positive or negative.  Most of them simply made me sicker.  It wasn't the drug I needed, but it was what the doctor wanted to prescribe -- it was easier for him to slap a "depression" label on me than to accept that a specialist had called it CFS and read up on what to do for that.  You spend a lot of the day in bed, you must be depressed, NEXT!

It's been said that the reason doctors don't like to deal with CFS patients is because it's too difficult for them to deal with someone who doesn't get well.  However, enough of us have improved with proper treatment that I don't buy that.  No, I will never be "cured", but with the right medication, I could've gotten back to work in a couple months.  I'd done it before; I intend to do it again.

The real problem is, CFS is an enigma and will challenge everything you've learned about disease and medication (many patients have the opposite reaction to pills -- I've more than once been awake all night after taking a sleeping pill, and fallen asleep minutes after taking a handful of No-Doz).  It requires more "thinking outside the box" than most doctors are willing to do.  Much easier to slap an inaccurate psych diagnosis on the patient, hustle her out the door, and hope that you offended her enough that she'll go inflict herself on another doctor.

Doesn't it just figure?

AOL assures us that we can "easily" transfer our blogs to a new location, click here. 

So, I click here, and get taken to a log-in page.  Since I don't have a blog there, I try to create a new account, but it says my e-mail already exists in their system.  OK, so I try to log-in at the page that directs me to, which tells me that I can't log in because they have no record of my e-mail existing in their system.   Grrrrrrrr.

OK, finally out-stubborned that, got logged in, created a blog, and can't find the link I'm supposed to click to import this journal.  Hmmmm.

Finally found a link to Help, Importing AOL Blogs.  Which says click here -- OK, maybe the problem is that I came in through the wrong link, and you've got to come in through this door to get the Import link.  Go through all the rigamarole of setting up a second blog, and the word Import does not appear on that page in the spot where it appears in the picture on the Help page.

Go back, re-read Help, Importing AOL Blogs.  It says you can also do it through the Advanced Settings page.  Great.  Click on Advanced Settings ... it tells you how to set up a blog there to be hosted elsewhere, but the word Import doesn't appear on this page, either.  Not only where it's shown in the picture, but nowhere.

Click through a few million more Help pages till I finally find a link to Known Problems.  This tells me what to do if my AOL blog does not complete the import process, but still does not do me one bit of good in starting the import process!

Click around some more, there's a Google Group specifically for this purpose, but all the posts deal with the process stopping midway, none of them tell me how the bleep I'm supposed to start the process.

So, an hour and a half later, I still have not been able to do the automatic transfer that AOL says is "easy".  Haven't even found the magic button to push to start it.

To which I have only one thing to say:

Thank God this is a temporary fix and in a couple months we'll be doing all this in-house at CFSfacts.org, where I do not have to deal with this <steer manure> ... I'll have my very own webmaster to deal with it for me!

The only good news is, I am doing this now, and not 8 years ago when I could only use the computer for 5 minutes an hour, and can now think clearly enough to understand the instructions, and to grasp that the problem is not that I'm failing at the task because I don't comprehend the instructions, but that the instructions are telling me to click on something that doesn't exist. 

8 years ago, I would've been totally exhausted and so frustrated with my inability to understand how it's done that I would've screamed and thrown the computer through the TV.  At least now I know the problem isn't me, because I'm absolutely positive that the word "import" does not appear on any of those pages in any of the places the pictures show it to be.  You can't click what's not there, and this time I'm not missing the word because of the mental fog.

So, in that way, I've come a long way in 8 years, thanks to finally getting the sleeping pills I needed instead of the anti-depressants that made me sicker.  But the joy in knowing that I'm finally improving is overcome by the frustration of having wasted an hour and a half of my limited functional time trying to do the impossible by following inaccurate instructions.

And incredibly annoyed that it appears that instead of just being able to click one button to transfer all these posts to a new blog, as AOL assures will work with this one particular blogging site only, I am, in fact, going to have to waste several workdays manually saving each and every post so we can put them all up at CFSfacts.org when we re-launch.

Nothing is ever as easy as computer geeks make it sound, and I am quite sure that they will figure out some way to blame it on the user that their system is not displaying the correct page with the correct buttons.  

 

LATER

AOL claims that this is simply a matter of Blogger's system being overwhelmed with transfers, which doesn't explain why I can't even find the Import button to click and be told it's not working.

I did find a place to go to ask questions:

http://groups.google.com/group/blogger-help-aol-import

Since you've already created a google identity to set up your Blogger account, it's fairly easy to join the group so you can ask (or complain).

Later

8 hours after starting the supposedly "quick and easy" process of transferring this blog to google, I have given up.  The only answer to be had is that I must be doing something wrong in the transfer process, when, in fact, I can't even find the place to start the process -- I can't be inputting my URL wrong when there's nowhere on the page to put it!

Google has never impressed me.  I use altavista and GoodSearch and find lots of things that google doesn't.  Their Usenet feed qualifies merely as "better than no Usenet at all".  And now their promise that I can just click in one spot and automatically transfer my blog to their site has proven to be yet more empty promises from them, more incompetence, yet more reason to have my blog on my own website with my own Web Guru there to not only answer questions but do the work for me when I get frustrated.

8 hours and a couple hundred webpages/clicks/links later, and I am no closer to getting this blog transferred over, or getting any answers from a live person.  There is nowhere that you can e-mail google from the Blogger site.  I would urge all my fellow bloggers to boycott Blogger, since it's the most useless piece of crap excuse for a website I've ever seen.  The pages that seem to promise you can contact them, simply result in an endless loop of clicking on page 1 to get to page 2 and clicking on page 2 to get taken back to page 1.  THIS IS NOT CUSTOMER SERVICE!

8 hours after I first started trying to report it to google, 7 hours after I reported it to AOL, there is still NO "status" and NO "known problems" on this subject.  All I get in trying to search the site is returned to the same Help page that shows where I should be looking for the word "import", and when I go to my blog, the word is not where it's shown in the picture.  You're supposed to be able to do it through Advanced Settings, but it's not there, either.  I've cleared my cache, removed my cookies, and the problem still remains, that the webpages that are loading on my computer do not have the magic word anywhere on them.

I hope every AOL member who's been caught up in this loop of unhelpfulness sues Google/Blogger for every hour that's been wasted.  Not at the $15/hour you're paid, but at the $75/hour your employer bills your time to the clients.  Maybe that will get their attention at how much time of how many people has been wasted trying to do the impossible.  You can't click on a link that's not there.  And if the link is not there, it does not help to blame the user for doing something wrong on their end.

Google/Blogger are the biggest bunch of idiots in Silicon Valley if they think this is going to impress me to keep my blog there.  As soon as my website's up and running, I'm gone, and it'll be MY website that gets the ad revenue for the page views.  I flatly refuse to use any google product ever again because this experience was the last straw in a long history of disappointments.  And I hope that they've set up a news tracker that tells them when their name hits the web, so that some live person there finally reads what I would've said to them if only I could've found a link that actually led me to an e-mail form. 

NOTE: instead of saying it to google privately via an e-mail, I've posted it on the web where the whole world can see it.  Not quite the way any business wants a customer service problem to be handled.  But they're google, they don't have to give a damn.

10,000!

As I write this, the page view counter has just clicked over to 10,000.

While that's not 10,000 unique visitors, it is still a lot of people who have been educated by this blog.  Some may be patients who benefited from the new research information, others may be people who thought CFS was just fatigue and got a real education in the truth about this misnamed and misunderstood condition.

As we prepare to move the blog to a new home, I want to thank all of you, and hope you'll continue to read when we're back online at www.CFSfacts.org in a few months.  The plan is to finally have everything in one place: the history, the new research, the blog, and a networking area where you can find service providers who understand CFS.  For example (she said, in a moment of blatant self-promotion), who better to edit your article about CFS than a CFS patient?

I'm told that it will take a couple of months to buy back our URL and get up and running, but we WILL get that website up again.

Reno Conference - Schedule - MARCH 2009

9th International IACFS/ME Conference: 
Developing Interdisciplinary Collaborations
Peppermill Resort, Reno, Nevada


March 12th

One day patient conference plus clinician workshops

Patient Conference

Curriculum Include Sessions On:

New Developments in Possible Causes of ME/CFS
New Research on What Helps People Cope with ME/CFS
Latest Research on the Pathophysiology of ME/CFS
Advances in Assessing ME/CFS
New Developments in Pharmocologic Treatments
Clinician Workshops

Will also feature for the first time workshops on:

How to Apply for Grants
Treating Sleep problems among ME/CFS patients
Treating the presumed primary mechanisms in ME/CFS
Behavioral Assessment and Treatment of ME/CFS
How to deal with pain
The Impact of Genomics on Public Health


March 13th

Scientific Conference – Developing Interdisciplinary Collaborations

Invited Address - Professor Yasuyoshi Watanabe, Osaka City Medical School, Osaka, Japan

Following the address by Professor Watanabe there will be two concurrent sessions going on though out the day.  For each paper session, following all the papers, there will be a discussion among panel members about the presented research.

Curriculum Includes Sessions On:

Pharmacologic Treatment Advances
Non-Pharmacologic Treatment Advances in Pain, Fatigue, and Sleep
Virology
Research Neuroendocrine Advances
Networking Lunch - Offering an opportunity for participants to network and talk about possible interdisciplinary studies and what they could discover.

Poster Sessions include:

Virology
Neuroendocrine
Pharmacologic Treatment Advances
Non-Pharmacologic Treatment Advances in Pain, Fatigue, and Sleep


March 14th

Scientific Conference – Developing Interdisciplinary Collaborations

Difficult clinical cases Session - will include a panel with some of the major ME/CFS MDs

Paper Session Curriculum Includes:

New Developments in Epidemiology
Latest Research in ImmunologyAssessment Issues from Biological to Behavioral
New Developments in Pediatric ME/CFS

Poster sessions include:

Epidemiology
Immunology
Assessment Issues
Pediatrics
Genetics,
Brain functioning
Past Presidents Luncheon - Lunch with past presidents of our organization.

Awards Banquet – presentation of the Perpich Award, the Junior Investigator Award, and the Clinician Award (as well as several new awards).


March 15th

Scientific Conference – Developing Interdisciplinary Collaborations

Curriculum includes Sessions On :

Genomics
Research Developments in Genetics
Advances in Brain functioning
International Collaborative efforts

Networking Lunch - Offering an opportunity for clinicians to network and talk about assessment and treatment issues.



Copyright 2008 by IACFSME  · Terms Of Use · Privacy Statement

http://www.iacfsme.org/

Calgary Conference THIS MONTH - newspaper article

http://www.canada.com/calgaryherald/news/reallife/story.html?id=547ca895-9f4d-4dcb-bc3d-f293370c9fc9

CALGARY HERALD

Tired of being misunderstood

As a major conference on chronic fatigue
syndrome and its related conditions prepares to
hit town, we look at the effects this often
devastating illness can have -- and the hope for
those who are dealing with it.


Michele Magnan, Calgary Herald
Published: Thursday, October 09, 2008

Q&A with Dr. Alison Bested


Dr. Alison Bested is one of a handful of Canadian
doctors who specialize in myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and related conditions such as fibromyalgia and
multiple chemical sensitivity.

We spoke with Bested, a Toronto-based
hematological pathologist and co-author of Hope and
Help for Chronic Fatigue Syndrome and Fibromyalgia
Second Edition (Cumberland House, 2008, $20.05),
about ME/CFS, how it's diagnosed and how it's
treated.


- What is ME/CFS -- is it considered a disease?

Disease means there is a specific entity known to
cause it. (That isn't the case here, so this is
considered) a syndrome, and is defined by a list of
criteria. The criteria (include) disabling, pathological
fatigue. People go for a walk and they might stay in
bed for the next three days -- there's this element of
post-exertional fatigue. They also have sleep
problems. They're not getting the deep sleep that
everybody needs in order to feel better. They often
have pain, which can be in their muscles and joints.
They also have brain fog, poor short-term memory,
they can't focus, they cannot multi-task and they
can't pull up words, so they feel stupid. (Symptoms
also include) chronic sore throats, feeling
off-centred, cold and dizzy all the time, heart
palpitations and irritable bowel syndrome.

It's extremely complicated, which makes it so
difficult to be sorted out by doctors, unless they
recognize this whole picture.


- How are ME/CFS, fibromyalgia and multiple
chemical sensitivity related?

They are all distinct, but the reason we lump them
together is we think they're environmentally linked,
in the sense that people are affected by their
environments more than (with) other conditions.
Usually ME/CFS is post-viral, while fibromyalgia is
more commonly related to physical trauma, like a
motor vehicle accident or a multiple head and neck
trauma, and then the pain spreads. Multiple chemical
sensitivity can start on its own, for example if you
have a history of being in a sick building, where
there's little ventilation and chemicals from the
office such as toner or paint. It starts as an exposure
problem that generalizes.


- How broad is the problem?

Ten million people in North America have ME/CFS or
fibromyalgia and only 20 per cent have been
diagnosed. (Those who are undiagnosed) think
they're lazy and crazy and are going out of their
minds. They're such desperate people.


- Can you please explain how ME/CFS occurs?

Chronic fatigue syndrome is a really complex
condition and most often it happens in middle-aged
women, often after some sort of infection. For
example, it usually happens in the winter months,
which is flu season, when someone can't get better
after the flu or something. A woman will often say, "I
can't even get up to make myself a bowl of soup.
What happened to me?"

The illness can be mild, moderate or severe, and
anybody can get it. Children can get it, men can get
it, and you can get it at any age. The majority of the
time, though, there is a history of something that
starts the ball rolling.


- So how do you begin to treat the condition?

It's a total picture because there's not just sort of
one specific therapy that will help everybody. We
look at the treatment in terms of the SEEDS of
health.

The "S" stands for sleep, "E" for the environment, "E"
for exercise, "D" for diet and "S" for support. The
place to start in terms of treatment is sleep,
because most of them have non-restorative sleep.

Look at your sleep hygiene -- things like going to
bed at the same time, having a dark room and the
right temperature and relaxing into sleep.

Potentially getting into medications (will help).
Unfortunately, there's no one drug that will give you
the deep restorative sleep. But in the meantime, at
least it gives the brain and body a break.


- How do people deal with the pain?

This is where the diet comes into play. A lot of the
people who have been ill haven't been preparing
meals, so they may need Meals on Wheels or have
someone feed them. They need to get away from
fried, fatty foods. Have some protein, vegetables
and starch at each meal, and supplement with a
multivitamin.

We almost always use an omega-3 fish oil for cell
repair and omega-6 to help the brain repair. Those
are the basics. (You also) need to look at how they
think about their pain, how it affects them, how they
can react. You have to help them deal with that, and
part of that is looking at the entire pain modality.

Ideally, you try to get them up slowly and mobilized
as they can tolerate. Sometimes they have so much
pain you may have to intervene with pain
medication.


- What's the long-term outlook for people who suffer
with this?

I have seen full recovery. (People will) be able to
work full-time and to have a full social life, but
they'll be back with a difference, because now they
will be mind-body aware. They'll be back, I think,
even better.

When people fully recover, now they know their
body's limits, so they know not to go beyond them
and they learn not to crash. Also, it depends on how
long they've been sick initially. I think the most
important thing is getting a diagnosis.

- Because there are no lab tests or easy ways to
identify ME/CFS or the related illnesses, what can
people do if they think they might have ME/CFS?

The best advice is if you have questions, read the
book. If you think it applies to you, you can take it
to your doctor and ask. Get some help. We don't
want people to treat themselves.



mmagnan@theherald.canwest.com

- - -


An Inside Look at Chronic Fatigue

As a high school sprinter who competed at the
provincial level and a top student with scholarships
to attend university, Russell Jasper had big plans for
the future.

And then, in May of Grade 12, Jasper contracted the
mononucleosis virus.

But instead of going away, as mono typically does in
four weeks, his symptoms lingered.

For a full year, his doctor told him it was just mono
and that he would get over it eventually.

That was five years ago, and Jasper's disabling
fatigue has only worsened.

Diagnosed with myalgic encephalomyelitis, which is
the British name for chronic fatigue syndrome (known
as ME/CFS), the now-23-year-old is housebound.

He has lost 50 pounds in the last few years.
Seemingly simple tasks such as walking down the
stairs, washing his hair or even speaking are
exhausting for Jasper, who spends much of his time
upstairs in his parents' southwest Calgary home.

"I don't really do anything anymore," he says softly.
"I stay upstairs in my little room."

Susan, Jasper's mother and the vice-president of the
Myalgic Encephalomyelitis/Fibromyalgia Society of
Alberta (ME/FM), has fibromyalgia herself and stays
home to take care of both Russell and her
21-year-old daughter Katie, who also suffers from a
milder form of ME.

She says she is looking forward to the upcoming
ME/CFS conference in Calgary because there is a real
need for more information. And she has seen
first-hand how these conditions can be
misunderstood by the public.

"It's like (my kids) have had every aspect of their
lives ripped away from them," she says.

For more information about the illnesses and the
society's work, visit mefmalberta.org.

For more information about the conference, see
sidebar on Page E2.



- - -


The Calgary Conference


Looking to know more about myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS)
and other fatigue-related illnesses?

You may want to check out an upcoming conference
co-ordinated by Dr. Ellie Stein, a Calgary-based
doctor with CFS.

The event is geared towards both health
professionals and people who suffer with ME/CFS and
related conditions such as fibromyalgia.

"There's a really dire need for the average family
physician to learn how to treat the illness," she says.

Family physicians, general internists,
rheumatologists and psychiatrists are invited to
participate in a two-part educational lecture series.

The first lecture, called Diagnosis and Assessment of
Patients with ME/CFS, will be held on Oct. 24 from 1
p.m. to 4:45 p.m. in the Dr. Clara Christie Theatre at
the University of Calgary.

The second lecture, called Clinical Management of
ME/CFS, will be held on Nov. 7 from 1 p.m. to 4:45
p.m. at the U of C's Libin Lecture Theatre.

Researchers and clinicians who work with a variety of
chronic fatigue conditions are invited to a research
symposium on Nov. 8 from 9 a.m. to 4:30 p.m. at
the U of C's Libin Lecture Theatre.

People with ME/CFS and related illnesses, their
families and the general public are invited to attend
a public lecture on Nov. 9 from 1:30 p.m. to 4:30
p.m. at the Libin Lecture Theatre. Experts will share
updates on research and provide tips, as well.

Tickets to the public lecture cost $30 per person or
$15 per low-income person. For more information
about or to register for any one of the events, visit
cme.ucalgary.ca, or call Dr. Stein's office at
403-287-9941.




© The Calgary Herald 2008
       

From One Click

FDA Food Supplements Deaths Claims Are False

(OMNS, October 9, 2008) "Dietary supplements cause 600 'adverse events'", reported USA Today on 22 Sept, 2008. The FDA refused to disclose exactly which supplements allegedly were causing problems. According to national statistics compiled by the authoritative American Association of Poison Control Centers, there is not even one death per year from vitamins. By comparison, FDA acknowledges that prescription drugs resulted in 482,154 adverse-event reports in the year 2007.
Press Release, Orthomolecular Medicine News Service

* * *

Speaking strictly for myself, I've had a lot of adverse reactions to prescription drugs.  The worst that ever happened with vitamins was when they were touting Niacin for pain relief, I took enough to cause something resembling a hot flash.

Most vitamins list the ingredients on the side, so if you're allergic to soy, wheat, dairy, etc., you can pick a brand you won't react to.  Who knows what's in prescription drugs?  They usually won't tell you. 

There's one family of drugs where I had a bad reaction to one and was told by that doctor and several pharmacists to never again take anything in that family.  I've at least twice been given prescriptions for other drugs in that family; the first one, I didn't notice before leaving the doctor's office and the pharmacist flatly refused to fill it.  The second time, I did notice, and the doctor repeatedly insisted "it'll be fine" because he couldn't be bothered to change the prescription.  Two days later, I showed that prescription to a doctor I trusted, who asked "are they trying to kill you?" and told me that the only way I was to take that medication was in a medical facility with the correct high-tech equipment to save my life -- the second reaction is often worse than the first.

So why did I get those subsequent prescriptions?  Either because the doctor wasn't aware that those drugs "react as a class" or because he was too lazy to wrack his brain to think of something else that would work besides the one he always prescribes.  And, in fact, the drugs that actually helped me not only weren't in that family, but weren't even intended for the same purpose -- I did not need anti-depressants because I wasn't depressed, I needed either sleeping pills and/or pain pills so that I could SLEEP.

Karma

What goes around, comes around, and we have seen several instances of people who disputed the existence and/or severity of CFS symptoms either coming down with CFS themselves, or coming down with something with similar symptoms.

In my own life, I have seen someone I know online get kicked in the butt by karma. She had a fibro diagnosis before I knew her, and vehemently disputed that my symptoms could be as severe as I said they were ... right up until she had a flare that landed her temporarily in the same condition that I had been describing. The whole time she was on the couch, she mentally did penance for calling me a liar.

So the question comes down to, what did I do so horribly wrong in my life that it seems the only person I can count on is me? I take some comfort in the assertion of a Buddhist acquaintance that this can be a carryover from a previous life, it doesn't necessarily mean that it's something I did in this lifetime.

Invariably, when it's something that I have complete control over, say meeting a deadline for work, I have no problems. The only thing that success is dependent on is my own willingness to work hard and do a good job. But as soon as I have to rely on someone else – such as a professor giving grades or a co-worker providing his/her share of the work done right on time – that's when the problems start. My career plans were torpedoed by a professor who had a reputation for not giving fair grades to women, no matter how hard a woman worked, she would never get more than a D; it had nothing to do with a personality conflict between him and me, because he did it to all the women. At the office, the assumption was made that Good Old Responsible Karen would pick up the slack and either do both halves of the work or re-do the slapdash job done on the half the other person was contributing. In my last few months at one office, I was constantly writing CYA memos to the office manager, all on the same subject “he procrastinated until I'm given one hour to do a three hour project, and when it's not done on time, which is impossible, I don't want to be blamed for it”.

When I hire people to work around the house, invariably they do half the job: I may be sick in bed, clearly not able to do much, and they come to me at the end of their shift feeling quite smug that they were clever enough to come up with the idea that “all that stuff you told me to put away, I found a box and put it in for YOU to put away!” Which is not the way that I ever did my work ... I always went above and beyond what was expected of me. So clearly, that's not karma for what I did in this lifetime, where I have always (even as a youngster) had a reputation for being over-responsible. And it's particularly annoying that I ask people to do something simple and they can't (or won't) do even that right, to the best of their ability.

I have always joked that my ability to move furniture that outweighs me stems from the fact that “all my life, there has never been a man around when I need one.” And it's true – the men in my life have always made sure they're around when I'm baking their favorite dessert, but if I mention over breakfast that I will need them to carry some boxes or help me clean behind the fridge, they disappear to points unknown while I'm in the bathroom and don't come back till after midnight.

And so it has gone with my CFS. I would have been well and back at work in a few weeks if I had had a prescription pad and could have gotten the pills I asked for the first time I asked for them. Instead, I dealt with a bunch of quacks who flatly refused to do the tests I asked for or provide the prescriptions I requested. I got worse and worse, to the point that I was only able to lie on the couch doing almost nothing, because my success at going back to work was entirely dependent on my being able to rely on someone else to do their job properly.

If I had known that I was going to need the skill in later life, perhaps I would have majored in something that would allow me to go into the lab and do my own research to find a cure for CFS. But there again, I have to rely on other people to do the work for me, and because I have to rely on other people, I've been sick for 21 years without hope for a cure. Elaine DeFreitas gave government researchers everything they needed to confirm her work, and despite detailed instructions on how to do it correctly, they (apparently intentionally) did it wrong, then simply stated the virus she found could not be replicated in their lab, instead of copping to it that it couldn't be replicated because they failed to follow the instructions.

The one thing that has kept me going through all this has been the thought that karma's going to come around and bite these people in the butt. Once I left the office, the irresponsible people were left to fend for themselves, and got reprimanded because I was no longer there to perform miracles and clean up after their sloppy work. Maybe my quacks won't get CFS, maybe they'll get something else equally chimerical that no one believes their symptoms are real.

But meanwhile, just like when things were turned in late at the office, I'm the one who winds up getting blamed for it: doctors just love to blame the patient for not getting well when, in fact, the real problem is that the doctor isn't prescribing the right pills. At the first appointment, I told him what the experts/specialists had diagnosed and told him what to prescribe for it – with all that information handed to him on a silver platter, how can it be my fault that he made a wrong diagnosis and didn't give me the right pills? Yet, I'm repeatedly blamed for not miraculously curing myself when the doctors were doing everything wrong.

Again, it has nothing to do with a personality conflict between me and the doctor, because I hear the same “blame the patient for your mistakes” stories from other patients. One, who had made the rounds of doctors trying to find a diagnosis, then went back to the same doctors to tell them what they had missed, and every one of them put the blame on him for “not accurately describing the symptoms” or “not being assertive enough” in insisting that he really was physically ill and not just depressed. In some cases, his assertiveness stopped just short of punching out a doctor who clearly wasn't listening, so I don't know what more he could have done. I ran into the same thing: I knew what symptoms differentiate CFS from depression, and made sure to mention all of those so that I would not be misdiagnosed with depression. When I complained afterward, he insisted it was not his fault for jumping to the immediate conclusion that a divorced woman must be depressed, and then refusing to be swayed from that wrong diagnosis – it was my fault because “nothing you said made sense”. Which is true: nothing I said made sense in the context of depression because I was deliberately making sure to mention the symptoms that would make it clear I didn't have depression. But it was easier to blame me than to change his mind.

Give me a prescription pad so that I never have to rely on another doctor, and I'll fix my own health problems, to the extent that they're fixable. But as long as I have to rely on someone else to write my prescriptions, I refuse to take the blame for not getting well as fast as other people think I should.

Once I have told them “this is my diagnosis and this is what the specialists recommend for it”, I've done my part. Them doing their job correctly should not depend on whether they think I'm likeable or any other reason than having a good work ethic and taking pride in their work. If you got into medicine for the money, you're there for the wrong reason – go do something like autopsies where the patient doesn't care. Unfortunately, too many doctors, when put on the spot, aren't honest: they know the answer you're looking for is “I went into medicine to help people”, so that's the answer they're going to give you, even when their later actions prove that helping you is the furthest thing from their minds.

I wasn't a big believer in karma until I saw how often it did come around on those who in one way or another made my life a living hell.  My personal belief system is that God is trying to lead me to something.  For example, I was not a particularly patient child; I learned a lot of patience from repeated bouts of bronchitis that kept me in bed 6 weeks at a time.  And all the times that other people have proven themselves irresponsible and unreliable has taught me that I cannot and should not rely on other people: the only person I can rely on is myself, because relying on others just gets me into trouble.  After dealing with a couple of professors who based my grades on my gender and not my actual work, I questioned whether I really wanted to continue at school where I'd have to deal with them, and concluded that I would be happier away from them.  And after dealing with a series of doctors who were not particularly interested in helping me get well, only in not having to discomfit themselves by having to change what they think about divorcees and about CFS, I concluded that self-help is the only help I can rely on.  I'm mostly back to things I can buy at the Natural Foods Co-Op without a prescription.

Being a bad patient may save your life

Being a bad patient can save your life

http://www.cnn.com/2008/HEALTH/10/02/ep.evan.handler.patient.advocate/index.html

By Elizabeth Cohen
CNN Medical Correspondent
 
(CNN) -- You probably know Evan Handler as Harry Goldenblatt, Charlotte York's husband on HBO's "Sex and the City," or as Charlie Runkle, the agent for David Duchovny's character on "Californication." What you probably don't know is that he's a passionate patient advocate, based on his experience being treated for leukemia in the mid- and late-1980s.
 
Actor Evan Handler, currently appearing in "Californication," defied statistics and survived leukemia.
 
In many ways, Handler is the ultimate empowered patient. "I learned that I must always remain in control, double-check everyone's work, and trust no one completely," Handler wrote of his approximately eight months in the hospital. "I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions."
In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself.
Handler survived when statistics said he shouldn't have. He endured round after round of chemotherapy, one infection after another and a bone marrow transplant. In this conversation with CNN Medical Correspondent Elizabeth Cohen, Handler discusses firing your doctor, tattooing medical directives on your stomach and the importance of not doing exactly what you're told.  Watch more on what you might gain from being a 'bad' patient »
Elizabeth Cohen: Were you a "bad" patient?
Evan Handler: The irony of "bad" patients is that they actually do better for themselves. ... There were hundreds and hundreds of instances where my being a "bad" patient saved my life.
Cohen: You write about how nurses tried to give you drugs to which you'd had "horrendous adverse reactions" even though doctors had explicitly written in your chart you shouldn't have those drugs. A friend of mine had a similar problem, and we decided maybe he should have hung a sign around his neck with a list of the drugs he wasn't supposed to get.
Handler: That doesn't sound like a bad idea. [A doctor once told me about] a registered nurse who had a "Do Not Resuscitate" order tattooed on her abdomen. She said she felt it was the only way her wishes would be respected.
Cohen: You write about how you became "a criminal of sorts" by forging your doctor's signature on authorization slips so your bloodwork would be done by a lab that ran the tests more quickly. Were you afraid you'd get caught?
Handler: Nothing bad is going to happen to you if you don't do exactly as you're told. They weren't going to put me in jail. I worried about getting caught only because then I wouldn't be able to do it any more.
Cohen: You describe your first doctor as being nasty, hostile and disrespectful. He yelled at your father for calling him on the phone with a question about your care. He yelled at you when you were in the middle of chemotherapy and came to see him with a rash and a fever because the fever was only 100 degrees. Did you wait too long to fire him?
Handler: Oh, yeah. Doctors had told me that I would be endangering my care if I switched doctors, but that advice was criminal. Look, the only way to change things is through the marketplace. Recently I needed to have something in my mouth looked at. The doctor performed a biopsy without lidocaine -- just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor, and if you have the energy, tell them why you left.
Cohen: When you were being treated for leukemia, you were very, very sick. You said sometimes you were barely conscious. How'd you keep up the stamina to keep double-checking everyone's work?
Handler: I was lucky to be able to maintain my strength and do it as long as I did, and my girlfriend at the time, Jackie, was willing to sit by my side and advocate for me, and she was very skilled at doing it. You wonder, how many people die from illnesses because the strength to keep up vigilance runs out? 

 

Call for Papers for March Conference

Call for Papers 9th International IACFS/ME Conference Developing Interdisciplinary Collaborations: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses March 12-15, 2009 Reno, Nevada (Lake Tahoe area) DEADLINE extended to November 1st The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) invites potential presenters to submit abstracts for our next biennial meeting, which will be held in Reno, Nevada, March 12-15, 2009. Integrative conference themes will focus on fatigue, pain, sleep, pediatrics, cognition and brain function in Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses (e.g., cancer fatigue). In addition, different segments will address advances in assessment and treatment (from biological to behavioral), as well as new developments in immunology, virology, and neuroendocrine research. There will also be lectures and professional workshops on “newest clinical protocols”, “what genes can teach us” and “CFS state of the science / art; where does the research go from here?” Papers will be reviewed by the Conference Planning Committee for selection as an oral lecture, short oral presentation, or poster presentation. Attendees to IACFS/ME conferences are primarily biomedical and behavioral professionals, including clinicians, academic researchers, and educators. Papers should reflect this level of experience and expertise. It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists. Abstracts selected will be published in the conference syllabus. Abstracts Abstracts must be non- commercial and focus on one or more of the areas indicated above. Abstract format: one page maximum in length (single spaced, 12 point font, one inch margins), listing all authors with presenting author first in bold, affiliated institution(s), and these headings in the text: Objectives, Methods, Results and Conclusion. Include at bottom of page: presenting author’s full name, academic credentials, and mailing address with city, state or province, zip or postal code, country, and E-mail address. Standard Submission Process Please E-mail abstracts (as Microsoft Word attachment or in body of e-mail) to greg@iacfsme.org no later than November 1, 2008. Presenting author will be contacted in November 2008 and advised if submitted abstract (s) or short oral presentation, the presenting author will be required to provide a Curriculum Vitae and complete necessary forms as directed in order to comply with AACME requirements for accreditation. Authors will be advised of the date and time of their presentation. If selected as a poster presenter, presenting author will be provided with specifications for presentation and display. Submission of Rapid Communications (Posters Only) Using the same abstract and submission requirements above, potential presenters may submit a poster abstract by January 15, 2009. Accepted Rapid Communications posters will be published in the conference program. Questions: Regarding papers or the submission process should be directed to IACFS/ME Administrative Office, Attention: Greg Fillmore; E-mail: greg@iacfsme.org Phone 847-258-7248 Learn the benefits of membership! Join IACFS/ME Visit www.iacfsme.org The International Association for CFS/ME 27 N. Wacker Drive Suite 416 Chicago, IL 60606 admin@iacfsme.org Open Letter to IACFS/ME members and fatigue-interested professionals Dear IACFS/ME Member: I am hoping that the March 2009 IACFS/ME International Meeting to be held in Reno, Nevada (USA) will be our best meeting ever! The breadth and depth of presentations, literally from around the world, will afford each of us an opportunity to discover new facets of CFS/ME and related illnesses. Just as importantly, this international meeting will afford us an opportunity to discuss our interests with colleagues and friends, and to learn of the interests and experiences of colleagues previously unmet. The IACFS/ME International Meeting also affords us an opportunity to increase the breadth of scope of CFS/ME research by piquing the interests of young investigators and investigators to-be. What better place to introduce graduate students or a younger colleague to the opportunities of CFS/ME research and complex issues that need to be addressed than at this meeting? Please consider bringing a graduate student or younger colleague to the March 2009 International Meeting. More senior investigators will benefit from discussions with individuals whose training is somewhat different from theirs and perhaps have different approaches to research challenges. Younger investigators and graduate students will benefit from the experiences of mature colleagues who have worked on various aspects of CFS/ME and may spark a new interest in those who are at the beginning of their careers. In short, make the March 2009 International Meeting more robust and more stimulating by encouraging a younger colleague or graduate to join us and participate in our biennial event. I am looking forward to seeing the two of you at the meeting! Sincerely, Kenneth J. Friedman, Chair of Membership IACFS/ME

* * *

Literally, if it kills me, I plan to be in Reno for this conference.  It's two hours up the freeway, a little longer by Amtrak, and will give me a chance to talk to the doctors about things that I'd like to see researched, and how much money needs to be raised in order to get that research done.

GOOD NEWS!

I've been advised that the registration on the CFS Facts URL has expired, so now we can buy it back and get it back online!

Rome was not built in a day, and neither will this be, but I do have two good computer minds working on a solution to transferring this blog to that site in its entirety.  So, even if we're not up and running there before this blog is removed by AOL at the end of the month, check back with CFSfacts.org regularly until you see that we are up and running.

And hopefully, once I'm blogging on a site where my webmaster can track IP numbers, a certain group of constantly abusive commenters will be proven to be one person and her sock puppets and we can expose her by name.  Or maybe the fear of being exposed and sued will stop the attacks.

The Latest from NCF

www.NCF-net.org is adding a page to its website with relevant patents.

Did you know that in the early 1990s, Elaine DeFreitas found a retrovirus in the blood of CFS patients?  Her tell-all CFIDS Associated Virus (CAV) patent will be one of the first that NCF posts.  In plain English, anyone who says CFS is all in your head is almost 20 years behind the times!

There's also a patent for a neurasthenia virus, which produces leukemic cell types (a connection NCF is now researching) and one for a stealth virus/ciguetera toxin.

The truth about CFS is out there, and it's not what CDC wants you to believe.  There are plenty of websites that have the truth, which comports with the patients' experiences, that the problems "all started with a virus".  The incidence of mental illness in CFS is no higher than in the general population.

Anyone who wants to dispute whether CFS is a real, physical illness, needs only to read these patents.  Doctors who have seen actual CFS patients (as opposed to those who have only read about it or seen patients who were misdiagnosed) have repeatedly observed that they're sicker than late-stage AIDS patients.  Autopsies have proven we're not imagining things ... there's inflammation of the brain and spinal cord that can explain all the symptoms.

I don't care who tries what sort of torture to get me to change my story, I will continue to tell the truth: I was happy and healthy until one day in February 1987 I collapsed with a 105 fever and what appeared to be stomach flu, and I've never felt completely right since.  Researchers have found enterovirus (i.e., stomach flu) in the blood of CFS patients.  It adds up for me.

 

Hmmmm

ProHealth.com reports:

Study Confirms Pain is the Cause of Osteoarthritis, Not the Symptom
Pain transmitted along nerves to the spinal cord stimulates inflammation that travels back to the joint - BUT interruption of the cross-talk allows the joint to heal. Existing drugs accomplished this in animal trials.

Bodily Pain Frequently Unrecognized & Misdiagnosed Sinusitis Symptom
Georgetown experts conclude pervasive bodily pain is a frequent, unrecognized symptom of sinusitis not dealt with in medical training and severe enough to be misdiagnosed as fibromyalgia, arthritis, ME/CFS, or depression.

Politics (sort of on topic, but not entirely)

Since it’s political season, let’s talk politics. I’m sure what I’m about to say will infuriate both sides.

I think we should be tough on crime. ALL crime. The guys who lined their pockets while running Lehman Brothers, AIG, etc. into the ground should be doing hard time. No, not sharing cells with murderers at San Quentin, but not at some country club, either. At the other end of the economic spectrum, illegal immigrants should get a one-way ticket home, paid for by fines on their employers; don’t just dump them a mile over the border in Tijuana where they can beat the Immigration agents back to downtown San Diego, but take them back to Central or Southern Mexico (or the major airport nearest wherever they came from originally).

Doctors who cause serious injury should be sentenced under the same guidelines as any criminal who causes Great Bodily Injury: earlier this year, I worked on a case where a criminal got 25 years for rendering someone permanently disabled. Why shouldn’t my doctors serve that same amount of time for leaving me permanently disabled? Oh, I’d give them some special privileges that the shooter didn’t get – they would spend their sentence working in the prison’s sick bay instead of making little rocks from big rocks – but they’d wind up paying for their malpractice in the same way I’m paying for their malpractice: by losing their ability to earn a living and their ability to come and go as they please.

I also think that we need to be more charitable to our brothers and sisters who have fallen on hard times. When a company shuts down, such that it’s readily determinable that people did not become unemployed through anything they themselves did wrong, let’s offer them "living wage" unemployment benefits and for a longer period, say 12 months instead of 6. And if an entire industry goes under, making it harder for people to find work in their field, make it 18 months. There are not many people who will choose to collect $1500 a month ($8.66/hour) for the full 18 months when they’ve been offered a job paying $3500 a month ($20/hour) with medical/dental and other benefits.

It’s been repeatedly determined that it’s impossible to survive on minimum wage, yet some of our disabled are expected to scrape along on less than half that pittance! Again, a tiered system should be put in place: those who are permanently disabled or temporarily 100% disabled should get enough to reflect that they cannot work part-time to supplement their benefits – someone who is only partially disabled is allowed to earn about $900 a month without losing their benefits, so someone who absolutely can’t work should get that extra amount to reach income parity with the partially disabled.

I can understand the logic of avoiding potential fraud by making disability benefits less than a minimum wage paycheck, but let’s be reasonable. Make it $50 or $100 less per month, not $500 or $800 less. Someone who became disabled through no fault of their own should not be reduced to sleeping in the gutter because their disability check is less than the rent/utilities on a studio apartment. (In this area, the waiting list for subsidized housing is about 10 years.)

And, on that subject, how many disabled people could go back to work with proper treatment? Penny wise and pound foolish, some treatments are denied as "too expensive" when it’s even more expensive to keep the person on Disability benefits for years than to front the money necessary to get them back to work. For example, Ampligen, which has been shown to work for CFS, costs $20,000/year. Although other countries have approved it, the US has not. And it’s been insinuated to activists that even if it were FDA-approved, government health care programs would not pay for it because it’s too expensive. Which, in the long run, makes no sense. Pay for the first year of what patients have called a miracle cure, so that I get well enough to return to work, and I’ll earn enough to continue paying for it myself. And I’ll be paying taxes, too. Or refuse to help patients bootstrap themselves and they’ll never go back to work because after years off work, they don’t have $20,000 to pay for the first year of treatment themselves.

It’s also been determined by several of our Congresspersons who tried it that it is impossible to eat well on the amount provided by food stamps. A friend who was temporarily not working after surgery had a choice: follow the doctor-recommended diet that would get him healthy enough to return to work, and run out of food after the first week of the month, or eat the things the doctor specifically told him to avoid because they were cheap and he could stretch his food stamps to eat for the whole month.

We can make sure that our less-fortunate are able to eat a healthy diet by allowing them to spend more each month on food, which should result in spending less on medical care. If anyone is concerned about them spending their additional food stamps unwisely, then set it up like the WIC program, where only certain items are on the approved list. Give them coupons that are good only for milk/cheese (including the lactose-free varieties for those with allergies), only for fresh produce, only for lean protein.... and in the quantities indicated on the government’s food pyramid. Don’t tell people they should eat 3 ounces of lean protein, but then provide them only with enough food stamps to buy the cheapest, fattiest cuts of meat. Don’t tell them to drink 3 glasses of milk if the food stamps will only cover the cost of 1 glass a day.

Now that grocery stores have computerized cash registers, and food stamp usage is also computerized, it should be easy to conduct spot checks – occasionally ask someone to produce a specific receipt ("we see that you spent $65.11 at Safeway on September 15, please mail in that receipt or sign here to authorize us to obtain a computer printout from Safeway") and offer nutrition counseling if it’s noted that the person regularly spends most of their food stamps on unhealthful foods.

And let’s talk medical insurance. Ideally, the for-profit insurance companies would be gotten out of the picture so that insurance is available to EVERYONE, not cherry-picking the healthy and leaving the sick/disabled uninsured (or offered insurance only at premiums that far exceed their income). No more of these policies, like the one I now have, that take your money every month and quibble over paying for anything at all, but real medical insurance that covers every doctor visit, every test, every prescription. Those who can afford it would pay for it much the same as they do now, with deductions from their paychecks – employers who had been paying for the insurance would be expected to increase their employees’ paychecks to reflect the expense which is no longer on the employer but on the employee. Those with incomes below a certain level would pay on a sliding scale, say 5% of their income, whether that income is earned, pension, SSDI or self-employment, but receive the same basic policy as those who can afford to pay more.

This is the richest country in the world, why can we not provide our citizens something that is provided even in some Third World countries? Granted, the local witch doctor in the backwoods of some of those countries is no Sloan Kettering, but he’s also more medical care than many of America’s poor and disabled can currently afford, and their citizens who can make it to a hospital are cared for, not first asked "how do you plan to pay for this?" and then threatened with lawsuits and homelessness while still too sick to work in order to pay the bill.

How do we pay for this? Charity begins at home. Dip into the amounts spent on foreign aid – only when every one of our own citizens has what they need, should we feel that we have money to spend improving the quality of life in other countries.

Medicare won't pay for Medical Errors

Medicare Won't Pay for Medical Errors
By KEVIN SACK
Medicare will stop paying hospitals for the added costs
of treating patients who are injured in their care.
http://www.nytimes.com/2008/10/01/us/01mistakes.html?th&emc=th

* * *

Although the "policy" will be that the patients aren't to be charged when Medicare won't pay, I suspect some doctors/hospitals will find a way to get around that and add insult to injury by suing patients to personally pay the additional bills that Medicare refused to pay.  It's already quite common to blame the patients for not getting well, so why would they not take that attitude out of the doctor's office and into the courtroom?

And what about those like me, who need lifelong medical care as a result of malpractice?  Will Medicare (or a private insurer with the same policy) only refuse to pay the particular medical group responsible, or will every doctor in the country be told he's not getting paid for treating me, if it can be related back to the malpractice committed by another medical group?

I think it's a good idea to make hospitals bear the costs of their preventable medical errors, but there are too many ways for this to come back to haunt the patients the rest of their lives, so there have to be some guidelines and safeguards put into place to protect the patient.

Doctors claimed they were unaware of information provided in writing, swore up and down that I myself told them the lies that appear in my medical records (things I know I never would say), and repeatedly found ways to put the blame on me for their malpractice.  It wasn't their fault: I "made no sense", I misunderstood, I told lies about my medical history, I didn't beat them over the head hard enough with the notion of being diagnosed by a virologist so even though that was written down by the doctor it's my fault that it didn't sink in. 

And when you show them the information in black and white, it's somehow my fault that they didn't read it before my appointment.  As I exploded to one of them, what is the point of my filling out a long information form that you sent to me if you're not going to read any of the answers on that form? 

Apparently, I was supposed to come in the morning of my appointment to read the information form to him to be sure he knew what it said, and come back several hours after the appointment to make sure that the correct information was dictated for the records.  It's not his fault that I didn't stand over him the entire day to make sure that he did his job correctly.