May 12

Happy ME/CFS Awareness Day!

International ME/CFS Awareness Day

International ME/CFS Awareness Day

Today is International ME/CFS Awareness Day. Here are some things you might not know if you’re unfamiliar with this illness.

What is ME/CFS?

If you ask the UK, it is Myalgic Encephalomyelitis (ME), an inflammation of the brain and the spinal cord. If you ask the US, it is Systemic Exertion Intolerance Disase (SEID), whose differentiating symptom is a worsening of all symptoms after any kind of exertion, physical or mental. If you ask the renowned Dr. Richard Horowitz, it is Multiple Systemic Infectious Disease Syndrome (MSIDS), an illness that includes immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders caused by chronic co-infections.

According to the research, all of the above are right.

What causes ME/CFS?

The most recent study from Columbia University suggests that ME/CFS may reflect an infectious “hit and run” event. Patients get sick, for example from mononucleosis (Epstein-Barr virus), and never fully recover. Instead of returning to normal after the acute infection passes, the immune system of people with ME/CFS stays in “high gear.” It continues to flood the system with cytokines, causing chronic inflammation. Patients showed especially high levels of the cytokine that is linked to the fatigue associated with many illnesses, such as a really bad flu. People with ME/CFS never get rid of that feeling of exhaustion.

Is it ME/CFS or is it Lyme?

ME/CFS and chronic Lyme disease share many of the same symptoms. Lyme disease has been called the great imitator; people with Lyme are often originally misdiagnosed with multiple sclerosis, fibromyalgia, ME/CFS, arthritis, Alzheimer’s, and Lou Gehrig’s disease. So, is ME/CFS really just undiagnosed Lyme?

Yes and no. Lyme disease can be the illness that triggers ME/CFS in many patients. And certainly those people will never fully recover until they have identified and treated their chronic Lyme. However, there are also people who have ME/CFS without Lyme disease.

Which came first, the chicken or the egg?

People with both Lyme and ME/CFS often wonder which came first. Did the Lyme cause them to develop ME/CFS? Or did the ME/CFS weaken their immune system and make them susceptible to Lyme? It can vary from person to person.

For me, I can now see the ripple effect of my illness. I was first exposed to black mold back in 2002. The lingering mycotoxins impaired my immune system. In the summer of 2006, I unknowingly contracted Lyme, which triggered my ME/CFS.

Is there a cure?

Not currently, but the new research offers hope. With this new understanding, doctors should be able to develop individualized treatment plans that address both the chronic infections and the out-of-control inflammation.

Please share this information with others, and hug someone with ME/CFS today.


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  1. Lacey Stritton

    Hey Shelli! Thanks for helping raise awareness. We are always looking for more talented authors for our advocacy group. I would recommend checking it out, we just officially launched today 🙂

    1. Lacey Stritton

      Happy May 12th friends,

      It is with great pleasure today that we announce the creation of “Advocating4ME”, a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future 🙂


      1. Shelli Proffitt Howells

        What a great concept. Research funds are sorely lacking. I hope the group is wonderfully successful.

    2. Shelli Proffitt Howells

      Thank you, Lacey, I will take a look! Good luck with the project. 🙂

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