Tuesday, May 11, 2010

May 12th: ME/CFS Awareness Day

 This post was updated September 2012

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. ME stands for myalgic encephalomyelitis -- a complex, multi-systemic illness affecting the immune,  endocrine, cardiovascular, autonomic and central nervous systems.  It is classified by the World Health Organization (WHO) as a neurological disease.

Unfortunately, ME is also often referred to as chronic fatigue syndrome (CFS), a highly trivial-sounding name given to the disease by the Centers for Disease Control (CDC) after one of the largest U.S. outbreaks of the illness in Incline Village, NV in the 1980s.  It is now often abbreviated ME/CFS.

2.In order to be diagnosed with CFS in the U.S., you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50% as well as at least four of the following symptoms: post-exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory problems/difficulty concentrating.  These symptoms must be present for six months or longer.  This set of diagnostic criteria for CFS is referred to as the 1994 CDC Fukuda definition of CFS.

Many patients also suffer from severe neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, shortness of breath, chest pain and many other symptoms.

In 2011, a new international definition of M.E., the International Consensus Criteria, was established by doctors and specialists from around the globe and published in the Journal of Internal Medicine. It is yet to be known if/when the CDC will officially adopt it.

3. Studies have shown ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and end-stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted as saying:
"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

4. ME/CFS afflicts both genders and all age groups, including young children. Approximately one million Americans have ME/CFS. That's more than the prevalence of breast cancer, AIDS, or lung cancer combined.  Additionally, at least 17 million people suffer from ME/CFS world-wide.

5. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are bedridden or completely homebound.

6. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with the disease, including mycoplasma, Q Fever and Lyme disease.

7. There are well over 5,000 published studies showing possible physical biomarkers in ME/CFS. Some known abnormalities include: low natural killer cell activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, oxygen toxicity/cellular hypoxia,  left ventricular dysfunction in the heart  and delayed V02 max (oxygen utilization) following exertion.

8. A February 2011 PLoS ONE study showed that people with CFS have unique cerebrospinal fluid proteins found only in CFS and not in healthy controls.  The proteins in CFS also can be differentiated from those with Lyme disease.  As an example, the study states that "the CDK5 signaling pathway was found to be significantly enriched for proteins identified only in the pooled CFS proteome. This signaling pathway has been linked to Parkinson's and Alzheimer's diseases."

9.  In October 2011, a groundbreaking Norwegian study was published showing 2/3rds of ME/CFS patients experienced significant improvement in symptoms using a chemotherapy drug called Rituximab.  Rituximab "destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells." The fact that this drug appears to work in ME/CFS suggests that the illness may be a type of auto immune disease. For more information, check out this excellent summary.

10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment). Yet, despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.

11. Currently, there are no FDA approved treatments for ME/CFS and there is no cure.

Updated: September 2012

Some things you can do to help:

1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.

2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.

3. If you know someone with ME/CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.

4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.

5. Wear a blue ribbon to show your support. If you are on Facebook, consider putting this twibbon (or this twibbon) on your profile picture to help raise awareness.

6. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities. If you are unable to donate, you can instead write to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.

7. Below are a few informational videos about ME/CFS.  Take a look, listen and pass them on.

SolveCFS Video

Sleepydust Video

May is also Lyme Disease Awareness Month. To learn more about how this co-existing infection may be complicating my personal case of ME/CFS, please read my previous post titled A Note on Lyme Disease.

Thank you.

Permission is given to anyone who wishes to re-post or link to this page.


  1. Excellent post, Laurel Very informative and educational....Thank you for this...
    God bless you today.

  2. fantastic post Laurel. Hope you don't mind I have linked it on my face book page & would like to use it to help me put together some info I can pass out to friends & family. I find it hard to explain it all myself & most sites etc are too long & complicated. Yours is nice & easy to read & well written thank you x

  3. Thank you Kay, Renee and Ellephantastic. I'd be happy for you to link this to FB and share it with friends... thank you for doing so!

  4. Hi Laurel. Thanks for taking the time to write this comprehensive post. I'd like to link it to my Facebook page too if that's okay with you.


  5. Thanks, Toni. Yes, anyone who would like to link or repost this is welcome to... thank you for doing so! I added a sentence at the end of the page in the event anyone else would like to link it. Hope you are doing as well as can be!

  6. Excellent post! I actually learned a few new things myself. Now that we have your permission to do so, I will re-post it on my FB page as well.

    Have a great, sunny day!

    Thanks for all the hard work you put into this post!

  7. Link to my FB Notes w/your article.


  8. Laurel
    What an excellent and informative post.

    It must have taken some valuable time and energy to research and post this but I am sure others will benefit from your efforts.

    I will try and link back with my next appropriate post.
    Thank you for granting your permission

  9. I'm going to share this entry on FB also. You (as usual) did a great job of putting the horrors of this illness into words. I hope that some of my FB friends will begin to follow your blog also.

  10. Laurel, you did such an excellent job of researching and writing this post. I noticed you offered to have people link to this post, so I have linked it to my blog for M.E./cfs awareness day. I hope you have a good day and thanks for such an eloquent post.

  11. Hi Laurel

    I have been looking at your blog over the last couple of weeks and I am amazed, impressed and inspired by you on so many levels. I too have M.E. but in no way as severe as you have.

    I just wanted to say well done on putting this post together. I can only imagine how much of your precious energy it must have taken. I 'borrowed' the link to the sleepy dust video. Thank you!!

    Sending you love and energy


  12. So fantastic and educational - I will likely be linking to it on my twitter today.

    I'm amazed at how well you handle all this despite being bedridden, as I'm back to those days myself.

    I hope you are at least feeling a little better!


  13. Thanks to all for such nice comments, and to all those who reposted the info! Love hearing from all of you.

  14. Wonderful post as ever, Laurel. Very thorough and must have taken an age to put together!

  15. Hi Laurel

    I've just noticed that you have added my blog to your blog roll and wanted to say thank you. That's so sweet of you.

    I hope today has some loveliness in it somewhere for you....

    Sending you love and energy

    Sofa Karen

  16. Been thinking about you. Hoping you are feeling better soon.

  17. I'm not sure if you're able to check comments right now sweetie, but I found this post when looking for awareness week resources for this year, and as I'm not well enough to write a good awareness post this year, I was wondering whether it would be ok with you for me to repost this post on my blog, with a link back?

    Don't worry at all if you're not able to reply ... or if you see this comment after the fact. I totally understand!

    I think of you often Laurel - I hope you are feeling a little better than when we last spoke!

    Take Care,
    Susannah xx

  18. Hi, Susannah -- yes, it's fine to repost!! Thank you! Hope you are doing okay. xoxo

  19. Thanks sweetie!

    I'm having a bit of a rough patch with pain at the moment, on top of a lot of other stuff, but am just trying to distract myself as much as I'm able to.

    How are you doing? I worry for you!
    Susannah x

  20. Thanks for helping to raise awareness. Please post any events on our Facebook page so it gets exposure world wide and hopefully inspires others to raise awareness too. Every little bit helps. See www.facebook.com/may12th.awareness.