Friday, October 10, 2008

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.



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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.

Wednesday, October 8, 2008

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.