Chatelaine FM Article
- Jausten
- Dan_Ellsworth
- Jausten
- Windancr19
- Tyson
- LianaG
- Windancr19
- Angie_L
- Jausten
- Windancr19
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» Jausten - My Email to Chatelaine
Since Chatelaine failed to post my comments at their site, I've posted another comment there which may or may not be posted tomorrow. I did email the editor of Chatelaine, and this is my email.Let's all email Chatelaine, and even if you aren't living in Canada, tell them that an article such as this is not what the public needs to learn.
Dear Chatelaine,
Your article by Sue Campbell titled, "Can a
diagnosis make you sick?"
was an article which I read several times.
It is obvious to me and to
many others who live with fibromyalgia that
it was not researched, and
even the picture that you've chosen is not
the picture of the tender
points that is the test that is used to
determine whether a person has
fibromyalgia or not. Did Victoria
Elliot-Gibson have 11 out of 18
tender points, or did she just have aches and
pains in non-specific
areas?
Many of the symptoms of fibromyalgia mimic
other conditions, and from
what I read, I doubt if she had a true
diagnosis of fibromyalgia. Also,
the slant that you gave the article suggests
that it is all in our
heads, and if we just scale down on what we
are doing, take charge of
our own care, exercise, and have enough money
to live on, we will be
fine. Although Ms. Elliot-Gibson stated that
she didn't believe that it
was all in our heads, the comparison to the
"railway spine" tells a
different story from Ms. Campbell's article.
There have always been
malingerers, but this article implied that
those of us with a true
diagnosis of fibromyalgia are all people just
want to use the system.
The reality of fibromyalgia isn't that
simple.
I ignored my diagnosis for five years, and
did not get better. I was
diagnosed in 1991 after having several
work-related back injuries. I
walked into my doctor's office and he asked
if my back was bothering me
again. I told him that I hurt all over.
Even as a Registered Nurse, I
didn't know what fibromyalgia was at that
time. He did the tender point
index test, and I suddenly had a diagnosis.
I chose to ignore it, and
continued to work in spite of my pain and
fatigue. I was sent to a
chronic pain specialist and she told me that
I was going
to become worse if I didn't accept my
diagnosis. I had to give up a
nursing job, and even with a BSN, the
hospital would not create a job
that I could do that didn't require me to
lift patients and provide
direct nursing care. They said that it was
cheaper to have me on
longterm disability. Thus, I'm on longterm
disability and also CPP.
I'd rather be a nurse, but my career was
ended after 25 years. At the
age of 52, it isn't easy to find a job that
will allow me to only sit at
a computer and type for 2 hours, which is
what my doctor will allow. I
also know that I could not manage to work an
8 hour shift, and I doubt
if anyone would hire me to work for 2 hours
each day.
Since I've done my own research into
fibromyalgia and talked with some
of the top experts in fibromyalgia research,
I was dismayed to see that
this article didn't even mention the research
that is going on around
the world. I feel that this article did more
damage to those of us who
actually have fibromyalgia than having a
diagnosis of a condition with
no known cause and no known cure. Myofascial
pain is very common, and
knowing the difference between fibromyalgia
and myofascial pain is
important. In order to have a true diagnosis
of fibromyalgia, one must
have 11 out of 18 tender points in all four
quadrants of the body. Your
picture did not show this. Trigger points
are different than tender
points, and myofascial pain is easier to deal
with by getting rid of the
tight bands of muscle with massage,
stretching, or exercise. Tender
points are a sign that a person is in a
flare, and has fibromyalgia.
Also, the important information about the
increased level of Substance P
in people with fibromyalgia was not
mentioned. There is also research
being done in the United States in regards to
a blood test. Again, this
was not discussed.
It is interesting that this article appeared
online on the same day that
the House of Commons was discussing the issue
of disability and
fibromyalgia along with chronic fatigue and
multiple chemical
sensitivities. I quote: Mr. Mac Harb
(Ottawa Centre, Lib.) moved:
That, in the opinion of this House, the
government should
recognize: (a) multiple chemical
sensitivity, chronic fatigue syndrome
and fibromyalgia as illnesses
that have the capacity to
cause disability; and (b) those
suffering the disabling aspects of
these diseases require
protection and a strong moral commitment
to their well-being.
As one of the leading magazines for
Canadians, and particularily for
women, I feel that this article has done us a
great disservice. The
article only talked about one person, and in
order to write an article
which many can relate to requires that more
than one person's life story
should be shared. I'm glad that Ms.
Elliot-Gibson is pain free at this
time, and reducing one's stress, exercising,
and even having a pregnancy
can cause a remission, if in fact, she really
had fibromyalgia. Yet,
there are thousands of people with
fibromyalgia who don't have the
financial security that she has, nor do they
have the option of finding
employment.
I do not live my condition, but I do have a
true diagnosis of
fibromyalgia. I also quit going to support
groups, and limit my
involvment with people who whine and complain
about their pain and
fatigue, and lack of support. I do write
articles online about coping
with fibromyalgia, and I not only research
them, but I also try to
maintain a positive attitude. I walk for
exercise, have scaled down my
life, and play the piano. Yet, I still have
tender points, pain and
fatigue.
By suggesting that a diagnosis can make
someone sick makes me wonder
what you would print about having a heart
attack, a stroke, or cancer.
Granted, these are all classified as
diseases, but then stress and
burning the candle at both ends can also
bring on these diseases.
Do your readers a service by printing an
article that will actually help
them rather than make it more difficult for
them to be heard or
understood when they are fighting for their
lives. People have
committed suicide due to having fibromyalgia,
marriages have broken up,
and children don't understand why a parent
can't do all the things that
they used to do.
It seems that fibromyalgia is the condition
of the '90's, yet it has
been around since 1816, when William Balfour,
a surgeon at the
University of Edinburgh first described it.
I have enjoyed your magazine for over twenty
years, but this article has
caused me to rethink whether I want to
continue to read it or not.
Cynthia Webber
--
Jaustenville
http://www.geocities.com/Heartland/Plain...
********
Suite 101: Fibromyalgia Editor
-- posted by Jausten
» Dan_Ellsworth - Well done!
Cynthia, that's about all I have to say about what you wrote: Well done! The tone was balanced but decisive, calm but firm. Did you have to do some re-writes?-- posted by Dan_Ellsworth
» Jausten - Thanks Dan
A few rewrites and moving a few paragraphs around, and it took me about as long to write the email as it did to write an article. That is, an article which seems to flow rather than one which takes some research and blood, sweat, and tears..*g..Cynthia
PS. Chatelaine did post my last message on their boards. Guess they recognized the name and knew that I meant business. Getting a Yankee who lives in Canada mad isn't very nice to deal with..*g...
-- posted by Jausten
» Windancr19 - Cynthia----most excellent response, or, Yaaaahooooooo !!!!!!
Well, now, that's more like it; thanks for responding so eloquently and quickly to Chatalaine's propaganda. I live in the U.S., hence, I didn't recognize the name of this particular magazine. So, to find out it is a popular magazine in Canada, especially among women, really caused me further concern. Also, after reading your response and learning that this article was released on the very same day as potential ground-breaking legislation was being decided upon regarding FMS, etc.qualifying for disability benefits in Canada , I can't help but wonder what political agendas may have influenced such a timely "coincidence".So, thank you, Cynthia, for responding to Chatalaine. Rest assured, that even though I am a U.S. citizen, I too will be emailing them with my concerns. As I'm sure you know, the same type of media coverage happens here also. In fact, I would like to offer my services in order to help further the cause of those here in the U.S., and everywhere whose lives have been irrevocably changed by this disease.
Please let me know how I can help you in this endeavor. I am a Registered Nurse also, and am personally painfully aware of the negative impact FMS/MPS/CFIDS has on one's activities of daily living. You may reach me at the address below.
Sincerely,
Windancr19@aol.com
Annie
-- posted by Windancr19
» Tyson - Hi My FM Palls
I to will wait a few days to cool down.I am so mad right know I could chew the article.But I did hunt all day could not find the web site.I am in a flare right know but my temper got the better of me.I got dressed and went out and bought the Chatelaine just to get the web site.Here it iswww.chatelain.com. Click on the "talk" oval,then choose Health.I will say it to BLOW OFF Chatelaine-- posted by Tyson
» LianaG - where is Chatelaine magazine to be found?
Dear Cynthia,I'm feeling very tired and computer illiterate today and . . . . Where is the Chatelaine article to be found? All I can access here is your respose to it. I too will respond as a Canadian with FM but need to read the article first. Is it online somewhere or do I neeed to buy the magazine?
Thanks for your help.
Liana
gallantfam@cyberus.ca
-- posted by LianaG
» Windancr19 - Chatelaine FM article URL address....
HI LianaG,I saw your post, and don't mind answering your question:
You can find the FM article at this URL address:
http://www.chatelaine.com/read/health/di...
Windancr19
Annie
-- posted by Windancr19
» Angie_L - Activity at Chatelaine
The FM article has sparked an international response and their board is *busy*! That is as it should be since FM is an international, as well as a personal, issue. The magic of the internet spreads news faster than print media. On behalf of those with FM who do not have internet access, many are picking holes in what was written, how it was spun and why they chose to use such an inflammatory title, when the piece was published. Things sure have changed since Doris Anderson retired. She did not allow controversy, to stir up more controversy, but presented info to inform and enlighten. Now, the magazine has turned to the type of 'yellow journalism' seen with the Enquirer, the Star, the Globe and other such rags. You need to scroll thru the posting form twice, til you hit "ok", and 24 hours may pass before it registers. Reading the article put me into a flare. Doing something about it, eased my mind. If enough people post or write letters to the editor, they *may* print a more accurate article.-- posted by Angie_L
» Jausten - Another Article to read
Michelle Struik sent me this URL: http://www.suite101.com/article.cfm/heal...This is an article written at Suite 101 about the Gulf War Syndrome which some researchers connect to fibromyalgia and chronic fatigue. Read it and please comment. I'm not a very happy camper right now.
Cynthia
-- posted by Jausten
» Windancr19 - Gulf War Illness Article a scam.....
I have not recovered either physically , or mentally, from the devastation the Chatelaine FM article has wreaked upon the millions of us who suffer with this debilitating disease. It makes me angry, and bitter when I think of the possibly millions of those reading that article who DON'T have FMS, and will believe what they read in Chatelaine to be truth, for why would they take the time to do the research to find differently,and discover the facts, unless they or a very close family member had FMS?? And now, to read another extremely negative, non-factual piece , about Gulf War Syndrome really hurts. I truly feel as if I have been kicked hard in the gut, not once, but twice. Is there no end to the irresponsible glut of sensationalistic "journalists" who fail to research the facts of their subjects before publishing same?? I again have to wonder, what political agendas are behind this sudden appearance of such yellow journalism...could it be we who are afflicted with these debilitating diseases as a whole are beginning to pose some sort of "threat" to particular lobbyists, especially when monies, as in benefits, are being discussed and decided upon? If so, we must continue our efforts to be heard at this critical juncture in time...for it seems some are attempting to sway the publics opinions regarding these issues and their viability in regards to meeting the criteria of "disabled", resulting in our lawmakers possibly denying a need for funding research or providing those with these hellish diseases disability benefits ( which is meager as is, to say the least).We must continue to make our voices heard...even if you do not feel comfortable writing a long piece as to WHY you disagree with them, Please, at least DO write to voice your opinion!! One or two lines will suffice.... we must ALL go on record now, in order to be heard, in order to effect change. Our families deserve this, and we deserve this. Let us not succomb to the sensationalistic , negative, and non-factual articles being published recently, due to our lack of taking the necessary steps to simply be heard. To openly express our opinions is our hard won birthright....let us not fail ourselves, nor others like us, by staying silent now. Please , exercise that right by writing or emailing your opinion on these matters. It is crucial, and there is strength in numbers....we know we are many, perhaps they do not. Now is the time to make them aware.
Windancr19 ~~~~~~ Annie
-- posted by Windancr19
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