Chronic Fatigue Syndrome Awareness Day

May 12th is Chronic Fatigue Syndrome (CFS) Awareness Day.

This is a topic very near and dear to my heart. My husband, along with his mother and grandfather, has this condition. He also has Fibromyalgia. The two conditions very often are dual-diagnosed. If you have one, there is a pretty good chance that you have the other. Mark was diagnosed with CFS after years of testing, doctors visits, and missed diagnoses. The symptoms first appeared when he was 8, after a very bad bout of mono.

I could write a really long post about how CFS has affected our lives. Or about how proud I am of Mark for doing all that he does, even with the challenges these two conditions bring. And I probably will. Just not today.

Instead, I am going to steal some of the information from the Blue Ribbon Campaign website. They already wrote up some great stuff. I won’t be able to top it, so here you go:

More about ME/CFS
· Physical symptoms of ME/CFS include muscle weakness and fatigue, muscle and joint pain, headaches, muscles spasms, sore throats, nausea, sleep disturbance, inability to control body temperature, fainting and dizziness due to low blood pressure.

· There are also a number of cognitive symptoms including difficulty talking, poor concentration and short term memory, emotional lability, confusion, and difficulty finding the right words to explain oneself.

· Patients also have a poorly functioning immune system and are thus susceptible to infection.

· Most people have a relapsing and remitting illness, where if they do too much whether that is to sit up in bed, or cycle round the block, then they will relapse into a worse state of health and it will take any time from days to years to recover. Why is raising awareness about ME/CFS important?

· Approximately 28 million people worldwide are affected by ME/CFS.

· Very severe ME/CFS leaves people paralysed, in severe pain, in a darkened room, temporarily blind, unable to be touched, tube-fed, unable to talk or to comprehend what is being said to them, suffering whole body muscle spasms and seizures. Severe ME is a living death and the carers of people in this condition have to watch their loved ones unable to move and in extreme pain, yet they are unable to comfort them as the sound of their voice or their touch will worsen their symptoms.

· Despite 5000 papers spanning 50 years proving the biomedical nature of ME/CFS and how it affects the neurological, endocrine and immune systems, there are psychiatrists who still believe patients are mad and imagine their symptoms. Having a disbelieving doctor is unfortunately for many a reality.

· ME/CFS rarely kills but patients have died from heart failure and from illnesses caused by having a weak immune system and being immobile. There have also been cases of suicide, usually due to extreme pain.

· Social isolation is a major factor of the illness especially for children who become too ill to attend school. The stigma and ignorance by the general population and the health service is inconceivable. Thank you very much for reading, I hope you can find some way to help use spread the word. Please email info@BlueRibbonCampaignforME.Org if you want to know more.

While Mark is not as bad as some of the conditions listed above, he has been through at least one bad spell during our relationship where I couldn’t touch him and he spent several days laying in a darkened room because he was unable to do anything else. Fortunately, those episodes seem to be few and far between.We’ve actually been really lucky. (Knock on wood.)

If you have the time, please visit the Blue Ribbon site, or Christina Gleason’s blog, where there is a very nice post about CFS awareness. She also has the condition, and provides a very nice explanation and perspective for those who are not familiar with it.

Tagged as: In the Life