Well, after the news and hype about the new name and definition over the last few weeks, something happened that actually might make a difference.
A group of researchers out of Colombia published the findings of one of their studies, which show clear immune dysregulation with M.E./CFS. Note: rather than a broad definition, the patients they studied had to meet two definitions of the illness, including the Canadian Consensus one which is quite specific.
In very very simple language, they found that M.E. patients in the first three years have a very heightened immune system (over-regulated cytokines…cytokines are the proteins in the blood that signal the immune system to ramp up when you have an infection). After three years of being ill with M.E., the majority of these proteins then become down regulated (compared to healthy controls) showing an exhausted, or worn out immune system.
http://cii.columbia.edu/blog.aspx?cid=yEsoKU
The lead investigator was from Columbia, but authors on the paper include a lot of the big name M.E. specialists as well as researchers from Harvard. However, will this be tossed aside as well?
It's funny, I must have read at least a dozen press releases over the last 2 years, talking about a new study and stating "New Findings confirm Chronic Fatigue Syndrome is a Biological Illness". In fact, I read press releases about studies 10 years ago, that claimed "CFS proven to be biological" and still, a good proportion of people, including doctors, still think it's about fatigue, and/or motivation.
If you watch that short clip, the lead investigator makes the point that this immune system problem is not something to be 'overcome' by trying harder (as everyone who has this knows).
Anyways, this is the kind of thing we need to change the stigma, not a new name. I wish the US government (HHS and NIH) had put the money they sunk into coming up with a new (again) definition and name, into funding some solid research like this. When there's a biological marker (blood test, scan) the definition won't matter much at all. The question is, will this research be tossed aside for some reason?
I hope not. I actually sent some money (small amount) to the Colombia crowd funding campaign to support one of these studies.
Anyways, time will tell. There's supposed to be another big study of theirs coming out in the next two weeks. I think between the Columbia group, the Standford group, and the researchers in Norway, we have reason to hope. Psychologically, I can't risk getting my hopes too high…but at least there's a few big studies in progress that might make a difference when it comes to stigma (within the medical community especially).
These studies take so long to replicate and publish, that I don't expect there will be a diagnostic test in my lifetime. But I love imagining that when some young, active, healthy woman comes down with M.E. 20 years from now, and she knows she's terribly ill, that when she goes to the Dr., there's a test to diagnose her and even treatment options…wow! what a great thought.
Saturday, February 28, 2015
Sunday, February 22, 2015
I told an outright lie: Stigma matters.
With M.E. in the media lately, I'm seeing all kinds of articles and responses to the new criteria and name the U.S. government came up with. While there's a few good things about the report: they're saying it's a physical disease (rather than psychological or a syndrome) and calling for more and better research, still, there are major problems with it all.
For example, who are the U.S. government to re-name a disease that affects people globally? And how is making the criteria so broad going to help people? It means if they use this criteria in research, they will likely be clumping together a bunch of people who may have quite diverse issues going on.
Ten or so years ago, in Canada, a group of M.E. specialists (an international panel) with years of treating the illness came up with an agreed upon criteria. Why has this been thrown out the window by the IOM?
At this point, all I can hope for is more good than bad comes out of this. Still, I'm not sure if they are really describing the illness from which I suffer, so I'll continue to call what I have M.E. Or will I?
When put on the spot this week as to why I've been so sick, I answered, "an autoimmune disease". Sigh. I just, for once, didn't want to face having to educate someone about what M.E. is, or deal with the immediate disbelief I often get, especially if the word fatigue comes up.
Yes, while I'm disabled by profound fatigue and weakness, the word fatigue just seems to trigger "Oh I get that too.", "Have you tried exercise, diet?", "Do you think you really have Lyme? or ____ (in other words, M.E. can't be an acceptable/legitimate explanation)", "I get down this time of year too.", "Have you tried counseling or a support group?" "I think getting out more would help." "Well you don't look sick, you look great!" etc. etc.
For once I didn't have to justify or explain that I am not tired or down, agoraphobic or unmotivated, I'm actually ill as in sick; as sick as the worst day of influenza (at least lately). Instead of all these things I usually get, the immediate response was acceptance. It was almost bizarre, and just such a lovely relief that I didn't have to explain or justify anything.
Yes, I did a disservice to myself and others who are fighting to legitimize M.E. as the terrible and real illness that it is. It's horrible of me. And I feel guilty to a degree.
You know one thing I've learned through almost 13 years of fighting the never ending weakness and immune stuff/viral stuff, is that despite what any other person (friend, doctor, relative, stranger) believes, even what I believe myself, I'm ill. That's the reality. I've tried to ignore it, push through it, give into it, block it out, believe it's all in my head and somehow mind over matter. Absolutely none of this has changed the reality…the truth that I'm ill. Not only that, and most angering of all, is the harder I try to ignore it and push through, usually, the harder I fall, the weaker and sicker I become. It's enough to drive anyone mad.
But despite the fact that what anyone thinks doesn't change the reality that I'm ill, it does change my experience of being ill. M.E.'s stigma and lack of research means the experience for me and other sufferers is much worse. There is often little support from friends or family, it's hard to get financial support, employment supports, and almost impossible to find a Dr. with, if they even believe you're sick, any knowledge of what's going on or how to help.
(While the research into the illness is like a drop in a lake, there are at least 6000 studies showing physical abnormalities, but try to find a Dr. who knows about one of them). When you say what you have, and nine times out of 10 are faced with disbelief or belittlement, it makes the experience of being ill much harder.
I recently read that M.E. patients are 10 times more likely to die from suicide. I think that statistic will come down enormously as soon as the social stigma is removed. When you can say "I have M.E." the way I told that guy "I have an autoimmune disease that causes severe weakness" and are accepted immediately, on the spot as ill, even sympathised with, I think that will be absolutely huge.
In the future I need to say "immune disease" if I'm not up to dealing with possible stigma. At least that's completely true. While there is a chance there is an autoimmune process involved, there is not enough research yet to call it autoimmune."
Oh and while not really all that significant, my NP called and said my WBC was low again with this relapse. Why does that happen? What does it mean? Just more, "Who knows. Your immune system isn't well".
For example, who are the U.S. government to re-name a disease that affects people globally? And how is making the criteria so broad going to help people? It means if they use this criteria in research, they will likely be clumping together a bunch of people who may have quite diverse issues going on.
Ten or so years ago, in Canada, a group of M.E. specialists (an international panel) with years of treating the illness came up with an agreed upon criteria. Why has this been thrown out the window by the IOM?
At this point, all I can hope for is more good than bad comes out of this. Still, I'm not sure if they are really describing the illness from which I suffer, so I'll continue to call what I have M.E. Or will I?
When put on the spot this week as to why I've been so sick, I answered, "an autoimmune disease". Sigh. I just, for once, didn't want to face having to educate someone about what M.E. is, or deal with the immediate disbelief I often get, especially if the word fatigue comes up.
Yes, while I'm disabled by profound fatigue and weakness, the word fatigue just seems to trigger "Oh I get that too.", "Have you tried exercise, diet?", "Do you think you really have Lyme? or ____ (in other words, M.E. can't be an acceptable/legitimate explanation)", "I get down this time of year too.", "Have you tried counseling or a support group?" "I think getting out more would help." "Well you don't look sick, you look great!" etc. etc.
For once I didn't have to justify or explain that I am not tired or down, agoraphobic or unmotivated, I'm actually ill as in sick; as sick as the worst day of influenza (at least lately). Instead of all these things I usually get, the immediate response was acceptance. It was almost bizarre, and just such a lovely relief that I didn't have to explain or justify anything.
Yes, I did a disservice to myself and others who are fighting to legitimize M.E. as the terrible and real illness that it is. It's horrible of me. And I feel guilty to a degree.
You know one thing I've learned through almost 13 years of fighting the never ending weakness and immune stuff/viral stuff, is that despite what any other person (friend, doctor, relative, stranger) believes, even what I believe myself, I'm ill. That's the reality. I've tried to ignore it, push through it, give into it, block it out, believe it's all in my head and somehow mind over matter. Absolutely none of this has changed the reality…the truth that I'm ill. Not only that, and most angering of all, is the harder I try to ignore it and push through, usually, the harder I fall, the weaker and sicker I become. It's enough to drive anyone mad.
But despite the fact that what anyone thinks doesn't change the reality that I'm ill, it does change my experience of being ill. M.E.'s stigma and lack of research means the experience for me and other sufferers is much worse. There is often little support from friends or family, it's hard to get financial support, employment supports, and almost impossible to find a Dr. with, if they even believe you're sick, any knowledge of what's going on or how to help.
(While the research into the illness is like a drop in a lake, there are at least 6000 studies showing physical abnormalities, but try to find a Dr. who knows about one of them). When you say what you have, and nine times out of 10 are faced with disbelief or belittlement, it makes the experience of being ill much harder.
I recently read that M.E. patients are 10 times more likely to die from suicide. I think that statistic will come down enormously as soon as the social stigma is removed. When you can say "I have M.E." the way I told that guy "I have an autoimmune disease that causes severe weakness" and are accepted immediately, on the spot as ill, even sympathised with, I think that will be absolutely huge.
In the future I need to say "immune disease" if I'm not up to dealing with possible stigma. At least that's completely true. While there is a chance there is an autoimmune process involved, there is not enough research yet to call it autoimmune."
Oh and while not really all that significant, my NP called and said my WBC was low again with this relapse. Why does that happen? What does it mean? Just more, "Who knows. Your immune system isn't well".
Saturday, February 14, 2015
Autonomic Dysfunction
The autonomic nervous system regulates all those things we don't think about: heart rate, blood pressure, temperature control, and digestion. They've known for a long time that M.E. patients have some type of autonomic dysfunction, that's why most of us have some form of OI.
I've been so crashed/relapsed the last week or two, I can barely cope. My body is so heavy, weak, fluey and ill. So yesterday, I felt pretty much like I was dying, although I knew it was the M.E. I decided to take my HR and BP and my HR was 50, which is pretty slow. Of course I was barely moving. Then I stood up and it was over 150. So while you need an increase of 30 beats a minute when standing to have POTS, I had an increase of OVER 100. Obviously when I'm this sick, so is my autonomic nervous system.
Please send any extra vibes and good thoughts you can my way. I am so very ill at the moment. I know I'll improve eventually, but I would like it to be soon. I wake up everyday lately and think, "I might be just a tad better". But I don't think I am (yet). I'm still super weak and shaky if I try to use my muscles. My body feels sick and poisoned, viral, heavy.
On the positive, we had a big snowfall this week, and the world outside my window, while cold (-20 with a -36 windchill) is just beautiful. Even sick, I love winter, which I guess is a good thing, given where I live.
I've been so crashed/relapsed the last week or two, I can barely cope. My body is so heavy, weak, fluey and ill. So yesterday, I felt pretty much like I was dying, although I knew it was the M.E. I decided to take my HR and BP and my HR was 50, which is pretty slow. Of course I was barely moving. Then I stood up and it was over 150. So while you need an increase of 30 beats a minute when standing to have POTS, I had an increase of OVER 100. Obviously when I'm this sick, so is my autonomic nervous system.
Please send any extra vibes and good thoughts you can my way. I am so very ill at the moment. I know I'll improve eventually, but I would like it to be soon. I wake up everyday lately and think, "I might be just a tad better". But I don't think I am (yet). I'm still super weak and shaky if I try to use my muscles. My body feels sick and poisoned, viral, heavy.
On the positive, we had a big snowfall this week, and the world outside my window, while cold (-20 with a -36 windchill) is just beautiful. Even sick, I love winter, which I guess is a good thing, given where I live.
Wednesday, February 11, 2015
Rough Week
Today I was supposed to travel to see my parents. I haven't seen them in 6 months and was really looking forward to it. A good friend lost her father this month. So tough. And it's made me feel strongly that I'd like to see my folks.
But Dam# M.E. I've just been so weak and exhausted I can't tell you. So hard to stand up, even lifting the remote or my book I feel the weakness in my arms, overwhelming me. My muscles have been 'buzzy' and shaky. Also, lots of phlegm, but I don't have a cold or a stuffed nose??!!
Anyways, for days I've been weepy, crying all over the place. This is not like me at all. I do cry on occasion, but not often. Lately, I've been falling to pieces. So I got up yesterday needing to make a decision on travel, and decided to tough it out. I've done it sick so many times, I figured I should be able to do it again.
I talked to my parents, my dad booked my shuttle from the airport, but 1/2 hour later I was so overwhelmed with the thought of having to pack a suitcase and sit up for over 5 hours I just fell to pieces again. I called my parents back, tormented about whether I could manage it. I decided to cancel, or reschedule.
Then, with encouragement from my mom, I decided to go see my Nurse Practitioner, to see if something else was going on. You know, part of me says this is M.E. It's an immune disease that causes severe, disabling weakness and fatigue….that's what it is. My blistered throat, chest ache, phlegm, all of it is just part and parcel of my life. But then why was I feeling so much weaker and more emotional?
Anyways, I managed to get a ride to the clinic, and my NP squeezed me in (a rarity). She thinks I have the virus that's going around. While my nose isn't stuffed up, both my ears were full of fluid, she said, and my throat blistered. I also had a low grade fever and tachycardia. Whether I have a full blown virus, or it's just my stupid M.E. immune system reacting to a virus, it's been tough.
I really had wanted to see and check in with my folks. But I'm so exhausted. Just completely done in. Hopefully in a week or so I start to improve.
After days of feeling horrible, my day was topped off when I heard that in the U.S., they've come up with a new name and definition for M.E. or chronic fatigue syndrome. As far as I can tell, this is not really the disease that I've suffered from for 12 1/2 years. To be diagnosed, (using their new criteria) one does not need to have a single immune symptom, can you believe it?
In fact, one need not have a single autonomic nervous system symptom either. While I was happy to read that OI had been added, it's not necessary for diagnosis. In fact, I could probably diagnose 1/2 the people I know with the disease using the criteria they came up with. I can't tell you how angry it makes me. The only good part of the name they came up with was using "disease" instead of "syndrome".
And while they attempted a name change, what they chose sounds ridiculous. Two of the 4 words are "exertion intolerance". We had a large snowfall last night, and my roommate was out early shovelling enough to get out of the driveway for work. I think she could easily have felt "exertion intolerance". What a joke. Anyways, since immune abnormalities neither come up in the name, and are not necessary to be diagnosed, it's pretty clear that this is not the illness I have, since from onset, I have been dealing with an immune, or neuro immune disease.
I will need to stay away from the news for a while as this has been so frustrating to me. I need to remember there is some decent research being done on the immune abnormalities in the post viral type disease from which I suffer.
Hopefully soon (although history has shown no indication for hope), there will be a better diagnosis and name for people like me - whether it's a B cell autoimmune disease, or inflammatory immune condition, whatever…something that actually refers to the dysregulation and/or disease going on in the body, rather than naming a symptom.
But Dam# M.E. I've just been so weak and exhausted I can't tell you. So hard to stand up, even lifting the remote or my book I feel the weakness in my arms, overwhelming me. My muscles have been 'buzzy' and shaky. Also, lots of phlegm, but I don't have a cold or a stuffed nose??!!
Anyways, for days I've been weepy, crying all over the place. This is not like me at all. I do cry on occasion, but not often. Lately, I've been falling to pieces. So I got up yesterday needing to make a decision on travel, and decided to tough it out. I've done it sick so many times, I figured I should be able to do it again.
I talked to my parents, my dad booked my shuttle from the airport, but 1/2 hour later I was so overwhelmed with the thought of having to pack a suitcase and sit up for over 5 hours I just fell to pieces again. I called my parents back, tormented about whether I could manage it. I decided to cancel, or reschedule.
Then, with encouragement from my mom, I decided to go see my Nurse Practitioner, to see if something else was going on. You know, part of me says this is M.E. It's an immune disease that causes severe, disabling weakness and fatigue….that's what it is. My blistered throat, chest ache, phlegm, all of it is just part and parcel of my life. But then why was I feeling so much weaker and more emotional?
Anyways, I managed to get a ride to the clinic, and my NP squeezed me in (a rarity). She thinks I have the virus that's going around. While my nose isn't stuffed up, both my ears were full of fluid, she said, and my throat blistered. I also had a low grade fever and tachycardia. Whether I have a full blown virus, or it's just my stupid M.E. immune system reacting to a virus, it's been tough.
I really had wanted to see and check in with my folks. But I'm so exhausted. Just completely done in. Hopefully in a week or so I start to improve.
After days of feeling horrible, my day was topped off when I heard that in the U.S., they've come up with a new name and definition for M.E. or chronic fatigue syndrome. As far as I can tell, this is not really the disease that I've suffered from for 12 1/2 years. To be diagnosed, (using their new criteria) one does not need to have a single immune symptom, can you believe it?
In fact, one need not have a single autonomic nervous system symptom either. While I was happy to read that OI had been added, it's not necessary for diagnosis. In fact, I could probably diagnose 1/2 the people I know with the disease using the criteria they came up with. I can't tell you how angry it makes me. The only good part of the name they came up with was using "disease" instead of "syndrome".
And while they attempted a name change, what they chose sounds ridiculous. Two of the 4 words are "exertion intolerance". We had a large snowfall last night, and my roommate was out early shovelling enough to get out of the driveway for work. I think she could easily have felt "exertion intolerance". What a joke. Anyways, since immune abnormalities neither come up in the name, and are not necessary to be diagnosed, it's pretty clear that this is not the illness I have, since from onset, I have been dealing with an immune, or neuro immune disease.
I will need to stay away from the news for a while as this has been so frustrating to me. I need to remember there is some decent research being done on the immune abnormalities in the post viral type disease from which I suffer.
Hopefully soon (although history has shown no indication for hope), there will be a better diagnosis and name for people like me - whether it's a B cell autoimmune disease, or inflammatory immune condition, whatever…something that actually refers to the dysregulation and/or disease going on in the body, rather than naming a symptom.
Friday, February 6, 2015
Tired and Weak
I've been really tired lately (like beyond exhausted). As well, I've been suffering bouts of weakness. Occasionally I'm so weak, I can't even stand up for more than a second, because my muscles will give out, and I'll collapse. Similarly, sometimes my arms are too weak to even lift something light and simple. It's not common for me to be this weak, but I had a few hours this week where I couldn't stand up or walk.
While I'm sure being deonditioned doesn't help, I know it's not a result of deconditioning because if I rest completely, things improve. I can be too weak to stand, but 24 hours later, be strong enough to walk a 1/2 block without repercussions. It's very confusing to make sense of.
I think some of it is when the OI is acting up (postural tachycardia and hypotension), some of it is hormone related as the weakness is always worse certain times of month, and it's usually also PEM connected (i.e. I did too much two days before). Anyways, things could be worse. While the fatigue and weakness are disabling, the flu symptoms (throat, lymph nodes, breathing ache) have been only average, which is nice.
I've been working sometimes 3 hours a day on writing my dissertation! I sleep in, get my coffee in the morning than go back to bed with my computer. I take small breaks to snack or let the dog out, but sometimes it's 1pm before I get out of bed and my PJ's. Of course after I'm dressed, and maybe do a small task, I'm back in bed reading, resting, or surfing.
I'm supposed to travel to see my folks next week, but might have to postpone it if I'm still this weak. I couldn't manage the travel yet. Although hopefully by next week. Fingers crossed. I haven't seen them in six months.
I wanted to share my most recent print. I'm not planning on printing much this year, but friends who live in Alaska each winter, gave me the idea to do a print with dogs and ravens, two of my favourite things to print. I'm happy with it, I like when my prints have a graphic look, and seem to tell a story.
While I'm sure being deonditioned doesn't help, I know it's not a result of deconditioning because if I rest completely, things improve. I can be too weak to stand, but 24 hours later, be strong enough to walk a 1/2 block without repercussions. It's very confusing to make sense of.
I think some of it is when the OI is acting up (postural tachycardia and hypotension), some of it is hormone related as the weakness is always worse certain times of month, and it's usually also PEM connected (i.e. I did too much two days before). Anyways, things could be worse. While the fatigue and weakness are disabling, the flu symptoms (throat, lymph nodes, breathing ache) have been only average, which is nice.
I've been working sometimes 3 hours a day on writing my dissertation! I sleep in, get my coffee in the morning than go back to bed with my computer. I take small breaks to snack or let the dog out, but sometimes it's 1pm before I get out of bed and my PJ's. Of course after I'm dressed, and maybe do a small task, I'm back in bed reading, resting, or surfing.
I'm supposed to travel to see my folks next week, but might have to postpone it if I'm still this weak. I couldn't manage the travel yet. Although hopefully by next week. Fingers crossed. I haven't seen them in six months.
I wanted to share my most recent print. I'm not planning on printing much this year, but friends who live in Alaska each winter, gave me the idea to do a print with dogs and ravens, two of my favourite things to print. I'm happy with it, I like when my prints have a graphic look, and seem to tell a story.
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