Saturday, September 17, 2011
well on her way to full recovery after being virtually housebound for nearly
three years) and Dan Moricoli (who has also seen a dramatic reduction in his
symptoms) worked together to develop:
10 TIPS FOR LIVING WITH ME/CFS which is online at:
Take a look at what they think. Feel free to comment or add tips of your
Practical Information, Community & Research Support for those afflicted with
Friday, September 16, 2011
Chronic Fatigue Syndrome: The invisible illness
Chronic fatigue syndrome can turn a hopeful life like Shelley
Shellin's into one of suffering and pain. Although the disease is as
common as diabetes, it is often misunderstood. It goes under the
microscope at a conference in Ottawa in late September.
By Julie Beun, The Ottawa Citizen September 16, 2011 12:04 PM
For 18 hours a day, Shelley Schellin waits.
She waits to have enough energy to get out of bed. She waits for her
body to stop aching enough to get dressed. She waits for friends to
stop by and keep her company during her long, lonely days. But mostly,
she waits to restart the life that was stolen from her nine years ago.
But after nearly a decade of suffering from myalgic encephalomyelitis,
or chronic fatigue syndrome (CFS/ME), so severe that it literally
takes a day to recover from an hour of grocery shopping, the life of
the strong, vibrant woman who was preparing for a career in natural
medicine is now a stone-cold memory.
"It was a busy, hopeful life," recallsSchellin, 42. "I had a small,
close circle of friends. I worked, travelled, did normal activities. I
loved going to craft shows and taking evening courses. I would go out
for dinner with friends and visit my family outside of the city. Now,
life is dramatically different. My dreams and goals are gone."
It sounds like pitiful stuff, and it would be if coming from someone
ending a tragic love affair. But for those suffering from CFS/ME, it's
almost a grotesque understatement.
Believed to be initially triggered by an infection, virus,
vaccination, parasitic infection or reaction to environmental toxins,
CFS/ME is more or less a dramatic overreaction by the body that puts
it into a state of constant over-vigilance. "The majority of people
say something like 'I was at a Christmas party and 20 of us got the
flu. Nineteen got better, what happened to me?'" says Dr. Alison
Bested, Ontario's leading expert, author of Hope and Help for Chronic
Fatigue Syndrome and Fibromyalgia (Cumberland) and a speaker at next
week's International Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis Research and Clinical Conference, part of which is
open to the public.
Typified by debilitating fatigue that lasts more than six months,
along with muscle pain, aching joints, headaches, poor memory or
post-exercise malaise, CFS/ME has no cure and can span a lifetime. In
fact, according to an antipodean study of patients suffering from
infections such as Red River Fever and mononucleosis, 10 years after
the infection, 10 per cent had developed CFS/ME.
And it's on the rise. While more than 500,000 Ontarians currently
suffer from one of three related conditions — CFS/ME, fibromyalgia or
multiple chemical sensitivity — nationally, Statistics Canada says
reports of CFS/ME in the past five years have increased by an
astonishing 24 per cent. Nor are they getting much help. Due to lack
of knowledge about CFS/ME within the medical community, there are few
specialists; Bested is one of a handful of Canadian doctors focusing
in the area. Yet she is so overloaded, she had to close her private
practice and now sees patients only at Toronto's Environmental Health
Clinic at Women's College Hospital.
"It's as common as diabetes, yet from a Ministry of Health
perspective, it's not even on the list of chronic diseases," she says,
pointing out that disability pensions can be very difficult to obtain.
"It's an invisible illness. I think in terms of patient populations,
they're getting sicker over time, because patients don't take it
seriously at first, since we're taught to push through exhaustion and
exercise more. But with this condition, you'll literally push yourself
into a crash."
Schellin's life unravelled after she developed a stomach infection
several years ago. She lost weight, then noticed muscle pain and
severe fatigue that never seemed to go away, no matter how many hours
she spent in bed. Her doctors had no answers, and it wasn't until she
began to see environmental health specialist Dr. Jennifer Armstrong
that the pieces fell together. The only U.S. board certified
specialist in Ottawa — environmental medicine isn't recognized in
Canada — Armstrong currently has a three-year waiting list for new
Part of the problem lies in how extensive a medical history must be to
put together the triggers, symptoms and treatments. After two to three
hours of taking a history, Armstrong literally has a checklist.
Patients are told to clean up their living conditions — everything
from getting rid of mould, carpets, paint cans, harsh cleaners,
newspapers and other allergens to moving if they live under cellphone
In many cases, an elimination diet that cuts out things like dairy,
sugar, gluten and tap water is tackled next. "In the meantime, we do
blood tests and look for vitamin deficiencies, any metabolic
abnormalities and thyroid function," she says.
"We look for evidence of infections like H. pylori or Epstein-Barr,
which can be treated with anti-bacterials in the former case and
anti-viral medication in the latter."
From then on, it's a case of wait, wait, wait and see. "If you see a
cause and effect through the timeline, sometimes, things are quite
clear and sometimes they're not. Sometimes, a light bulb goes on, like
the patient had their apartment sprayed for bugs 10 years ago," she
says. "It's a puzzle and it's interesting to put it together. Some
patients want to puzzle it out and some are just too sick."
For patients without access to the limited number of specialists,
however, the case is more dire. And it is costly, since many of the
tests and potential treatments are not covered by OHIP since there is
no single diagnostic test for the condition. For example, measuring
elevated cytokines — signalling molecules critical to the immune
system — can more accurately assess inflammation, but the test is
currently used for research purposes only.
"I've tried just about everything that's come my way," admits
Schellin. "The really difficult part is that you've lost your
financial stability and you're looking at alternative treatments that
aren't covered and are extremely expensive. If you can manage to try
it, you end up in a situation where you have to rely on the goodness
of your family to pay for these treatments."
The burden of health to Canada is even greater: based on a study by
the U.K.'s Sheffield Hallam University, the bottom line cost to the
Canadian economy is about $3.5 billion annually, while a U.S. Centers
for Disease Control and Prevention study estimated that the loss of
productivity per affected person is roughly $20,000.
Yet Bested remains hopeful that someday soon, all that will change.
Recent U.S. research has linked CFS/ME to a potential retrovirus; the
fallout is that the Red Cross and Canadian Blood Agency no longer
accept blood from those with chronic fatigue syndrome.
"This was a real step in recognizing this as a physical illness," says
Bested, who adds that the Australian research linking CFS/ME to things
like mononucleosis show "it's an acquired physical problem. If it
affects cell membranes and punches holes in them, well, guess what?
Anything in your body could be affected. It's a deregulation of the
It's a small comfort to Schellin, who spends her days so crushed by
fatigue and inertia, she says she's "entirely focused on survival.
When I look back at my teen years, my attitude was 'why would I want a
day off when I can be making money?' Now I can't even relate to that.
I look normal, even healthy. But I feel like my life is passing me
© Copyright (c) The Ottawa Citizen
Thursday, September 15, 2011
Wednesday, September 14, 2011
Tuesday, September 13, 2011
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Post-Viral Syndrome/CFS/fibro/exercise-induced asthma/post-traumatic arthritis/chronic bronchitis/migraines
2. I was diagnosed with it in the year: 1988 (PVS/CFS), 2001 (fibro), 1998 (asthma), 1976 (arthritis), 1966 (bronchitis), 1996 (migraines)
3. But I had symptoms since: virus in February 1987
4. The biggest adjustment I've had to make is: leaving my full-time career
5. Most people assume: I'm just too lazy to work ... even when I was still working as close to full-time as I could manage!
6. The hardest part about mornings are: waiting till all systems are up to speed so I can safely get out of bed
7. My favorite medical TV show is: M*A*S*H
8. A gadget I couldn't live without is: laptop computer
9. The hardest part about nights are: trying to get to sleep and stay asleep
10. Each day I take __ pills & vitamins. (No comments, please) on bad days, a helluva lot
11. Regarding alternative treatments I: have tried a lot of them and most had no effect whatsoever except to lighten my wallet
12. If I had to choose between an invisible illness or visible I would choose: in some respects, I like being able to pass for normal
13. Regarding working and career: despite the stereotype, I DO still work, from home -- from bed if necessary -- on my own schedule
14. People would be surprised to know: I kicked my husband to the curb, he did not leave me
15. The hardest thing to accept about my new reality has been: having to slow down and not do as much as I'd like
16. Something I never thought I could do with my illness that I did was: recover after medical neglect brought me to the brink of death
17. The commercials about my illness: make it look like depression. As Erik notes, no person with True CFS would get out of bed as quickly as CDC's actress did
18. Something I really miss doing since I was diagnosed is: dancing the night away
19. It was really hard to have to give up: sports
20. A new hobby I have taken up since my diagnosis is: not so much "new" as "more of" -- since I can no longer play sports, I spend more time sitting on my butt doing needlework
21. If I could have one day of feeling normal again I would: go hiking in the mountains
22. My illness has taught me: patience. Infinite patience.
23. Want to know a secret? One thing people say that gets under my skin is: "why don't you get a job?" I HAVE a job -- it's just not full-time -- but just because I work from home does not mean it's not a job.
24. But I love it when people: recognize how much I DO do
25. My favorite motto, scripture, quote that gets me through tough times is: God answers all prayers; sometimes the answer is No.
26. When someone is diagnosed I'd like to tell them: don't make the same mistakes I did.
27. Something that has surprised me about living with an illness is: how many people who claim to be "Christians" are rude, uncaring, and think "I'll pray for you" is as useful as actually getting off their butts and doing what I've asked them to.
28. The nicest thing someone did for me when I wasn't feeling well was: volunteered to get a few essential groceries and also brought a bouquet of flowers and takeout for lunch when he delivered the groceries
29. I'm involved with Invisible Illness Week because: I'm tired of people assuming that if you don't have a wheelchair, you're not disabled
30. The fact that you read this list makes me feel: like I'm doing something worthwhile
National Invisible Chronic Illness Awareness Week, September 12-18, 2011, invites bloggers to play a significant role in the campaign for awareness surrounding chronic pain. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com, as well as inviting bloggers around the globe to commit to blogging about invisible illness issues.
Some examples patient bloggers have shared include: being asked to move from their seat while on a train for someone with a visible disability, comments heard when parking in a handicapped spot (legally) and the misunderstandings experienced when you are a young parent with a chronic illness and unable to do all the physical things healthy parents may do.
To help spread the word they have also created a meme, "30 Things About My Invisible Illness You May Not Know" that people have posted on Facebook, blogs and other social networks.
* * *
Please, if you blog, blog about Invisible Illness this week. If you don't blog yourself, see if you can find a way to relate a comment about it to whatever blogs or websites you do read.
According to the publication, Contagion is not only plausible, but based on real events ... with a touch of Hollywood.
"The virus is modeled after SARS, the 2003 respiratory virus that caused a worldwide panic but fizzled out after causing only about 900 deaths around the globe. Unlike SARS, the 'Contagion' virus attacks the central nervous system as well, causing what Lipkin admits are more cinematic symptoms."
Lipkin also admitted that the vaccine developed for the fictional virus is developed "faster than it would be in real life" and that, to him, the film's plot is "something in the way of a wake-up call."
* * *
As a PWC (Class of 1987), I don't need to see the movie -- I've lived it. I just wish they'd find a vaccine for the CFS virus so there's no Class of 2017.
We need to start a grass roots PR campaign, any time someone mentions this movie, tell them about your CFS and warn "this could happen to you" and WHY.
They had conclusive research into SARS after just 8 days. We've been waiting 28 years.
"At first, after I described what had happened to me, a doctor's usual response was to stop his monologue that he/she was enjoying, look at me blankly, take a count of maybe 4 seconds and then blithely continue his/her speech. That was in the beginning. As I grew desperate, the medical practitioner would assure me that my symptoms could not exist; others said I was imagining everything and that the drug that I thought caused all my symptoms couldn't have. One even said I should read the "textbook" if I didn't believe him. Another looked at me when I demanded an explanation and said, "Bad things happen to good people."
* * *
Symptoms that my friend with post-polio was told were "normal" and "to be expected", I was told were "absolutely impossible". How can it be physically impossible to have something that's normal for another condition?! Since she was dealing with specialists and I was dealing with a generalist, I decided to believe her doctors and follow their advice, since it was somewhat better-informed than what I was getting. And by doing so, taking charge of my own health, I avoided permanent physical damage.
Monday, September 12, 2011
- Is it because what's missing in the film is a cameo from British psychiatrist Simon Wessely in which he'd call MEV-1 a biosocial construct and complain that MEV-afflicted patients were sending him nasty emails and trying to breathe on him?
Sunday, September 11, 2011
By Michael Wilkes
Published: Sunday, Sep. 11, 2011 - 12:00 am | Page 14I
I take care of a young woman, Brenda, who has had chronic pain for the
past six years – since she was 14.
At this point, I am stumped. I have no idea what is causing her pain and
neither do the nine experts I have consulted with at various medical centers.
While Brenda is a delightful and smart woman, she is also the type of
patient most doctors dread caring for. She has so many symptoms it is hard to
keep track of them all, and they don't fit together in a nice tidy diagnostic
package – like pancreatitis, or ovarian cysts, or bone cancer.
She can't be diagnosed in a standard 11-minute doctor-patient appointment –
or even dozens of 11-minute appointments.
Our lack of certainty about her diagnosis and our inability to provide a
prognosis or effective treatments have led her to be a target for more
unscrupulous doctors who act as if they know exactly what is going on. They
offer her a clear diagnosis, often with a fancy Latin name.
The doctors then suggest a zillion laboratory tests, most of which have not
been shown to be helpful.
Finally they offer Brenda one or another unproven treatment that promises
her a false hope but predictably earns the treating doctors great profits.
One thing is certain, Brenda is greatly disabled by her pain – to the point
that she can not engage in meaningful work or academic studies.
Nonetheless, many doctors end their visit by suggesting her disease is
psychosomatic or even fictitious. Rarely do they want to continue to see her.
The truth is they simply can find no other explanation for her symptoms and
they can't handle uncertainty. If we can't understand or find it, then it
must not exist.
The thinking goes something like this: I am a good doctor and I have taken
a good history and ordered all the appropriate laboratory tests.
Since I can find nothing wrong with Brenda it can only be that she is
imagining this pain or the pain is providing her some other benefit that keeps
But Brenda still hurts. To her, the pain is very real and she takes those
comments from doctors as though they don't believe her. Now she and her
parents are growing angry at the medical profession and impatient – and scared.
Are the doctors missing something serious?
Frankly, as her doctor, I don't know if we are missing anything, and I am
out of experts to ask. At this point the dose of her narcotic pain killer is
so large it would render unconscious an average football player, but the
medicine is the only way she can find some comfort – at least until the dose
As I lie awake at night wondering if I am missing something important, or
overtreating her pain, my thoughts move to Brenda, who must also be awake
thinking about the doctors who don't believe her and are resistant to provide
her with the only medicines she knows will work: narcotics.
Does XMRV prove the Wessely school wrong?
When Lo et al published data in Science that suggested a possible link
between XMRV and CFS numerous investigations followed. The follow-up
demonstrated and continues to confirm an uncomfortable truth. There is an awful lot
for science yet to learn and the more gullible individuals of the 'Star
Trek' generation have been cruelly deceived [A dream that became a reality and
spread throughout the stars].
Ongoing XMRV/MLV investigations appear to show that there is contamination
of cell-lines, laboratories, and even DNA collection equipment. It is
sobering to think that all these scientists studying microbes have been doing
their work quite oblivious to the veritable cloud of mouse and retroviral
DNA which surrounds them [No, I'm from Iowa. I only work in outer space.].
This shows that locating and identifying microbes is nowhere near as
straightforward as Star Trek led some of us to believe. Even when doctors and
scientists know exactly what they are looking for the best tests available
can fail. When they are not sure what they are looking for and especially if
the microbe is unfamiliar, the difficulties of detection multiply
enormously. [It's life Jim, but not as we know it]
This suggests that it is entirely possible that there are harmful microbes
common to people with M.E. or CFS or subgroups just waiting to be
discovered or confirmed.
The theories of the Wessely school are highly dependent upon the
non-existence of such microbes. Their theories require that 'medically unexplained'
effectively means the same as 'there is no infection'. In the light of XMRV
research such faith in modern science appears naïve. [Warp 7, Mr Sulu]
The tottering tower of Wessely school theories is built on a foundation so
airy-fairy that surely no sensible person would want to live there. It
requires constant propping-up with the denial of evidence for disease in M.E.
and CFS [divert all power to the shields, Scotty]; the non-existence of
pathogens associated with these illnesses [Do you know what it is, Captain? :
Something that cannot possibly exist] and belief in some fantastical
capabilities of science and medicine. [By golly, Jim… I'm beginning to think I
can cure a rainy day]
The vital research into XMRV will doubtless continue. But already amongst
its contributions to science and medicine is the humbling reminder that
there is still a lot to be learned; perhaps more by some than others. [My God,
they sucked his brains out]
[if you spotted the non-Trekkie quote, award yourself 10 points]