If you feel up to it, please take this quick survey that the MEAO (Myalgic Encephalomyelitis Association of Ontario) is doing. If you feel so inclined, please pass this survey along.
Here is part of the email I recieved along with a link to the survey:
http://www.surveymonkey.com/s/QZFJ8SR
"The MEAO and National ME/FM Action Network ask for your prompt participation in a short survey. Non-members, including non-Canadians are welcome. We encourage you to pass this survey on. All information will be confidential and results will be shown summarized by group.
The survey will take less than 10 minutes to complete.In this survey we focus on the awareness of ME (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome), FM (Fibromyalgia) and MCS (Multiple Chemical Sensitivities) by physicians.Throughout this survey, the reference to “doctors” is meant as MDs from qualified medical schools.
Deadline for survey completion is Wed, March 9th. Our plan is to compile and present results on WWW.MEAO.CA and in the spring “Reaching Out” Newsletter. We would also like to have the results available for discussions with Government and the Medical association and for the May 12th activities. We are simultaneously investigating Canadian Medical Faculties Curricula with respect to the teaching objectives on ME/FM/MCS."
Sunday, February 20, 2011
Saturday, February 19, 2011
The stigma of M.E.
I'm not going to write much today mainly because I've been fighting off two nasty viruses the last week (one stomach which is a bit better now) as well as a nasty cold. Despite these, however, I'm not NEARLY as sick as I was in January with the M.E. crash.
As most of you probably know, A British study came out this week claiming that the two best treatments (out of 4 studied) for M.E/CFS are graded exercise therapy (GET) and cognitive behaviour therapy (CBT). The media, of course jumped on the band wagon. So what does this mean? More stigmatization for M.E. patients from friends, family, the public, and worst of all doctors who read about this study and don't understand the background - leading them to tell patients to "exercise" in order to feel better.
First, from what I can gather, the patient group studied did not meet the definition for M.E./CFS that is usually used by doctors who specialize in treating it - at least in North America. Also, if patients had neurological issues, or were extremely ill they were excluded. Huh??? My guess is that the illness this study looked at wasn't the one many of us have. And yet it's recommendations will be used to harm us.
I know that my specialist is going to be very very frustrated by this study as her main treatment is pacing (rather than pushing as described in the study with the graded exercise treatment). Having treated thousands of patients, she has witnessed the damage of pushing. She has seen people go from moderate functioning to bed-bound in a nursing home through pushing. She does use CBT, but not as a treatment, rather as a means to help patients cope.
Of course if some money and effort were put into more research to understand the biological underpinnings of the illness, perhaps we could be treated rather than being counselled on how to "cope" with a disabling illness.
For more discussion about this check out Sue's Learning to live with CFS blog:
http://livewithcfs.blogspot.com/2011/02/bristish-study-floods-media-with.html
As for me, with the one step forward, three steps back for M.E./CFS research, I want a different diagnosis. No really. It actually is unfathomable to me that with the severity of the fatigue/immune disease I experience, that this is how things are.
Here is one expert's response to the flaws of this study - I will add more as they appear:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
Here's another alright one written by the CFIDS association of America:
http://www.cfids.org/cfidslink/2011/lancet-study.asp
A fellow patient's blog (a doctor who has the illness) wrote some decent commentatry here:
http://treatingxmrv.blogspot.com/2011/02/500-days.html
As most of you probably know, A British study came out this week claiming that the two best treatments (out of 4 studied) for M.E/CFS are graded exercise therapy (GET) and cognitive behaviour therapy (CBT). The media, of course jumped on the band wagon. So what does this mean? More stigmatization for M.E. patients from friends, family, the public, and worst of all doctors who read about this study and don't understand the background - leading them to tell patients to "exercise" in order to feel better.
First, from what I can gather, the patient group studied did not meet the definition for M.E./CFS that is usually used by doctors who specialize in treating it - at least in North America. Also, if patients had neurological issues, or were extremely ill they were excluded. Huh??? My guess is that the illness this study looked at wasn't the one many of us have. And yet it's recommendations will be used to harm us.
I know that my specialist is going to be very very frustrated by this study as her main treatment is pacing (rather than pushing as described in the study with the graded exercise treatment). Having treated thousands of patients, she has witnessed the damage of pushing. She has seen people go from moderate functioning to bed-bound in a nursing home through pushing. She does use CBT, but not as a treatment, rather as a means to help patients cope.
Of course if some money and effort were put into more research to understand the biological underpinnings of the illness, perhaps we could be treated rather than being counselled on how to "cope" with a disabling illness.
For more discussion about this check out Sue's Learning to live with CFS blog:
http://livewithcfs.blogspot.com/2011/02/bristish-study-floods-media-with.html
As for me, with the one step forward, three steps back for M.E./CFS research, I want a different diagnosis. No really. It actually is unfathomable to me that with the severity of the fatigue/immune disease I experience, that this is how things are.
Here is one expert's response to the flaws of this study - I will add more as they appear:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
Here's another alright one written by the CFIDS association of America:
http://www.cfids.org/cfidslink/2011/lancet-study.asp
A fellow patient's blog (a doctor who has the illness) wrote some decent commentatry here:
http://treatingxmrv.blogspot.com/2011/02/500-days.html
Tuesday, February 8, 2011
The Tunnel
I've been doing a bit better since the start of February following the 4 week crash/relapse in January. I've been getting out of the house every couple days. But I can't seem to do it without at least a one to two day crash afterwards.
Yesterday I went to a talk at the U. Today I'm in bed. I feel so sick.
I'm going to pass on the art class tonight. If I can rally enough to do a little painting here at home, I will. But I'm not putting any pressure on myself.
I'm laying in bed with the sunlight streaming in through the window. It's a sunny, crisp, cold day (-20 with a -30 windchill). I actually really love winter, but it's not the same when you can't get out to enjoy it. Still there's something about the winter sun that is so unique and beautiful and I'm enjoying it today from my bed (my bed is pushed right up against a window).
I'm coming to realize that for me, M.E. will probably be a life-long illness. While I have improved a little over 8 1/2 years, I still spend good portions of time house and even bed bound. I'm in the process of trying to assess what this means in the big scheme of things?
I've been looking at P. Fennell's book, "The Chronic Illness Workbook". I can really identify with some of the issues and topics she discusses. She breaks down the process of dealing with chronic illness into four phases. Right now, I identify most with the third phase called "The Resolution Phase".
In phase 3, the resolution phase, she talks about how you've come to accept that your condition may be permanent. Often people in this phase feel a lot of despair. She uses the metaphor of being in a tunnel and she calls the strategy of the phase, "finding meaning in the tunnel". To summarize, the phase usually involves mourning losses, asking existential questions, reinventing the self, and creatively finding a way to live a meaningful life despite the illness.
On the one hand, I don't really believe life's problems can be reduced to a step by step process. We are unique individuals living complex and messy lives. Still, it's so comforting to know that what I'm going through is common among those of us that suffer chronic illness. I also hope that I CAN find meaning in the tunnel and am open to strategies for doing this.
Has anyone else read this book? What were your thoughts?
OK, well I need some rest.........
Yesterday I went to a talk at the U. Today I'm in bed. I feel so sick.
I'm going to pass on the art class tonight. If I can rally enough to do a little painting here at home, I will. But I'm not putting any pressure on myself.
I'm laying in bed with the sunlight streaming in through the window. It's a sunny, crisp, cold day (-20 with a -30 windchill). I actually really love winter, but it's not the same when you can't get out to enjoy it. Still there's something about the winter sun that is so unique and beautiful and I'm enjoying it today from my bed (my bed is pushed right up against a window).
I'm coming to realize that for me, M.E. will probably be a life-long illness. While I have improved a little over 8 1/2 years, I still spend good portions of time house and even bed bound. I'm in the process of trying to assess what this means in the big scheme of things?
I've been looking at P. Fennell's book, "The Chronic Illness Workbook". I can really identify with some of the issues and topics she discusses. She breaks down the process of dealing with chronic illness into four phases. Right now, I identify most with the third phase called "The Resolution Phase".
In phase 3, the resolution phase, she talks about how you've come to accept that your condition may be permanent. Often people in this phase feel a lot of despair. She uses the metaphor of being in a tunnel and she calls the strategy of the phase, "finding meaning in the tunnel". To summarize, the phase usually involves mourning losses, asking existential questions, reinventing the self, and creatively finding a way to live a meaningful life despite the illness.
On the one hand, I don't really believe life's problems can be reduced to a step by step process. We are unique individuals living complex and messy lives. Still, it's so comforting to know that what I'm going through is common among those of us that suffer chronic illness. I also hope that I CAN find meaning in the tunnel and am open to strategies for doing this.
Has anyone else read this book? What were your thoughts?
OK, well I need some rest.........
Tuesday, February 1, 2011
January is over!
Life is short. It makes sense that we should make the most we can out of the life we have. But how to do this when you live in a sick body? For me, January was just terrible. I think there were two days this past month where I felt ill (in contrast to extremely ill). Despite my philosophy of making the most of this life, treasuring each day, I'm just glad January's over.
Of course that's not to say Feb. will be better, but I can hope can't I?
Rather than making the most of each moment in my life, sometimes (especially during a relapse/crash) I feel like I'm merely enduring. There's very little savouring going on. Lately, I go to bed each night thinking "I hope tomorrow's a better day" and "I'm so glad I made it through this one - I'm so glad today's over". Each hour, each day, is it's own Herculean task.
I have improved a little this week. I'm not spending the whole day in bed. And I'm managing 1-2 hours each morning of study (reading and/or writing for my online course) even if it is being done lying down.
During a relapse, I'm often reminded (and grateful) about the progress I HAVE made over time, partly due to symptoms that reappear - one's I'd forgotten, or put out of my mind. For example, I've been experiencing significant muscle weakness, and after using my arm or leg muscles, tremors and major muscle twitches (brought on, for example, after standing for even a short stint). Sometimes these tremors and twitches show up a day or two after the activity, so it's hard to pinpoint what caused them. Still - very annoying - and a reminder to be thankful for even small progress over time.
I have my painting class tonight - last week I went with a fever and significant weakness; despite the two day after effect I'm still glad I went. It's a body vs. soul thing. Painting feeds my soul....and if I can recover from each class in two days I think it's worth it to keep going.
Of course that's not to say Feb. will be better, but I can hope can't I?
Rather than making the most of each moment in my life, sometimes (especially during a relapse/crash) I feel like I'm merely enduring. There's very little savouring going on. Lately, I go to bed each night thinking "I hope tomorrow's a better day" and "I'm so glad I made it through this one - I'm so glad today's over". Each hour, each day, is it's own Herculean task.
I have improved a little this week. I'm not spending the whole day in bed. And I'm managing 1-2 hours each morning of study (reading and/or writing for my online course) even if it is being done lying down.
During a relapse, I'm often reminded (and grateful) about the progress I HAVE made over time, partly due to symptoms that reappear - one's I'd forgotten, or put out of my mind. For example, I've been experiencing significant muscle weakness, and after using my arm or leg muscles, tremors and major muscle twitches (brought on, for example, after standing for even a short stint). Sometimes these tremors and twitches show up a day or two after the activity, so it's hard to pinpoint what caused them. Still - very annoying - and a reminder to be thankful for even small progress over time.
I have my painting class tonight - last week I went with a fever and significant weakness; despite the two day after effect I'm still glad I went. It's a body vs. soul thing. Painting feeds my soul....and if I can recover from each class in two days I think it's worth it to keep going.
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