My Yahoo Alerts e-mail this morning was filled with articles and postings on a brand-new CFS study just released (but not yet published) by the CDC (believe it or not!). Here's a summary of the study (pretty brief and easy to understand).
This is an interesting one. They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward. Not surprisingly, the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).
Several interesting points stand out here to me. First, the study was conducted by the chief of the CDC's chronic viral diseases branch! This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.
The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.
And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation. I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS. I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy). It's nice to have some biological evidence to back up what we are experiencing.
Just an interesting little tidbit from today's news. I know I haven't been writing much lately, but I've been really exhausted and overwhelmed. We've had house guests since Friday, and I have been working frantically on a major writing project. I hope you are all doing well this week!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Thank you for your summary of this, and other, research/information about CFIDS. I am new to your blog, but already so glad to have found you. I don't have the mental energy to read all the articles or research on CFIDS. It overwhelms me. An easy summary of the facts and most important features of the information is just what I need. And reading how you and your family are coping with CFIDS & other illnesses is inspiring. Again, thank you!
ReplyDeleteAnon -
DeleteThank you for the kind words about my blog. I am glad you found it - welcome!! There are lots of supportive and informative CFS blogs out there - check out the blog list along the left-hand side here. There is a warm and supportive group of CFS patients here online, and we welcome you to participate!
Sue
Good info, Sue! Thanks for the update! Get back to writing on your writing project! :-)
ReplyDelete(BTW, there is no longer an option on your blog to request notifications that you've published comments?)
Thanks, Judy!
DeleteBlogger changed much of its format, so the notification thing looks different than it used to - it is no longer a box to check. Instead, click on the words "Subscribe by email" under the comment box and to the right - I can see it now as I am typing this.
Sue
Such great news! There are those days.....
ReplyDeleteI appreciate all you do here for us!
And I also am encouraged by the fact that the CDC was involved in this study. That is incredible!!
Blessings,
Elaine
I agree, Elaine - good news all around!
DeleteInteresting and enlightening study, especially about the motivation aspect - I always thought it was just me but if there's proof I know I'm not going crazy. Thanks for the update!
ReplyDeleteFascinating. Thanks Sue.You know how much I love to see the science! I would say this isn't a problem for H now and I imagine that it is because the Florinef is working for her and getting blood to the brain. So she's back to being super organised and a little overly conscientious. All makes sense to me....
ReplyDeleteIf we could just get on top of the PEM now!
Strangely, I always feel motivated to d othings still, but I know I will be sick doing them, so that prevents me from wanting to do them. If I just think abstractly about wanting to do things without drawing mental energy into them, I still really want to do them. It's the sickness reaction that starts the instant effort is expended that prevents me from doing them. I really feel excited about studying and still wake up excited at the idea of doing that, I just can't most of the time, due to the cognitive dysfunction and sickness. I lie in bed daydreaming about the course of studies that I am working towards, but my cognitive wellness can only work toward it a bit here and there.
ReplyDeleteIs this different from other people? It's so hard to sort out these intricate cognitive effects.
D.
Hi,
ReplyDeleteI read all details and i am so much impress to read because its more useful to know about CFS.
This information is more effective information for me and also for other people who have Asthma.
Thank You so much for this information.
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Chronic Fatigue Syndrome Symptoms
Wow, an updated blog/website on CFS. Thank you sooo much. Anonymous, I agree with you completely. I've been suffering with this since 2003. Orthostatic hypotension is definitely an issue, as well as the mental fog. I want to get things done! When I do feel physically and mentally clear headed, I go all out! (No one's gonna call me lazy!) Then I end up bedridden for 3 days after my major cleaning/organizing/etc. over-haul! When I have these flare-ups I literally feel like I am drugged with an overdose of ativan/lorazapam. I can't even drive! I actually did go into 'remission' in 2008, then it came back with a vengence in July of 2009. But that year of remission was unbelievable! To have my energy back, my normal self, to play with my younger son (was 6 years old at that time) was priceless! BUT, I continue to have hope that I will go into a complete remission.Thank You Sue for this site! You and your talent are greatly appreciated!
ReplyDeleteHi, Kim, and welcome to my blog! Sorry for the delay in responding to your comment - I had a very busy May and June, with 2 graduations and a 3-week vacation.
ReplyDeleteI hope to get to know you better here and am glad you are finding my blog helpful.
Sue
I have just found your blog by accident and am so glad I did. I have CFS/M.E (pick your favourite) and Fibromyalgia. Have had for 8 yrs now though only officially diagnosed (eventually) 2 yrs ago.
ReplyDeleteMy symptoms are moderate to severe with the occasional light day a couple of times per year. I'm currently, with the help of lots of shortcuts, tools and an understanding tutor, studying for my teaching qualification.
I have to do a thesis this year on an element of further education that can be improved and I've been thinking about the relationship betwren motivation for cfs/m.w/fibro individuals when learning in a typical further education environment. In particular how thought needs to be given to the fact that many of the 'typical' motivational strategies taught to teachers are unlikely to help and how I could suggest they might be adapted to consider the effects of our condition on motivation and self esteem.
Is love to hear from anyone with experience or interest in this area.I know cfs is common among the teaching profession.
Also if anyone has any other suggestions for the thesis.
Myview -
DeleteThanks for your comments. I am very impressed that you are working toward your teacher certification - that is quite a lofty goal for someone with CFS and FM. Good for you!!
Your thesis sounds interesting. The challenge in "motivating" people with CFS to learn is that the root cause of the lack of motivation is biological, not emotional. So, it's really not anything that a teacher could effect with any strategy. The only thing you can do is treat CFS at its roots - improving overall symptoms will also improve the brain fog/cognitive dysfunctions.
It might be interesting for your thesis to delve into the biological reasons for cognitive dysfunction in CFS and how it presents to a an outsider (i.e. a teacher).
Just some thoughts off the top of my head, for what it's worth! You might also find this blog post interesting:
http://livewithcfs.blogspot.com/2012/02/mental-energy-and-mecfs.html
Good luck - thanks for stopping by and taking the time to comment!
Sue
Hi Sue - and others
ReplyDeleteI am very grateful for this article, and though it's not new, have found it at a good time. We are struggling so much with our 18 year old son's apparent lack of motivation. It makes me frustrated at times, and his dad finds it positively frightening - being quite a 'getter done' of things himself. Understanding that there are aspects of this motivation problem that may be beyond our control, but that may improve as he recovers (happening SO SLOWLY!!) is of great importance. Thank you.
Elizabeth -
DeleteIt is very hard for healthy people to understand what it feels like to have ME/CFS - some of it is just indescribable. But this lack of motivation or drive that you are describing IS a part of the illness at its worst, and in this blog post, I attempted to describe how it feels to me:
http://livewithcfs.blogspot.com/2012/02/mental-energy-and-mecfs.html
Maybe that will help you better understand what your son is going through. It sounds as though you have been very understanding and get that it is not necessarily under his control, so that is good. When he is that bad, pushing him to do more won't help - he would if he could. The only thing that really helps, as I explain in the post, is to get past the bad period or improve his overall condition. Best ways to do this include treating OI, correcting sleep dysfunction, treating underlying infections (that can help a lot with mental clarity), treating methylation issues, and treating immune dysfunction.
Our son was in the same boat his senior year of high school - he missed 90 days of school that year! He's doing much better now - just started his 3rd year of college! - thanks to all the things I mentioned above.
Things WILL get better.
Sue