Chronic Fatigue Syndrome
Chronic Fatigue Syndrome
An Introduction:
Chronic Fatigue Syndrome- also known as ME/SEID- is a complicated disorder that has no known underlying cause. It can be a long-term disorder that causes extreme fatigue. This fatigue can get worse from mental and physical activities, and it cannot improve by resting.
This disorder has no medical cause, and its symptoms are shared with many other common disorders/diseases. There is no test to diagnose it either. Doctors tend to rule out other possible physical and mental causes before reaching this conclusion. Before, it was discussed as a psychosomatic disorder. Even in recent years, it is still downplayed with names such as female hysteria and yuppie flu. Some medical colleges dont even cover it in classes still.
Symptoms:
-Typically starts with Flu-like Symptoms
-Fatigue that Doesnt Improve with Rest (lasts 6+ months)
-Sleep Problems
-Loss of Memory or Concentration
-Post-exertional Malaise (symptoms get worse with physical/mental activity)
-Dizziness
-Sore Throat/Enlarged Lymph Nodes
-Headaches or Migraines
-Unexplained Muscle/Joint Pain
-Possible Light & Sound Sensitivities
Treatments:
Currently, there is no cure or approved treatment to help with symptoms of CFS. Treatment mainly focuses on symptom relief. Family and medical providers can cooperate to find plans that work for you. An example idea is to make sure not to do too much on a good day so that you dont crash and feel worse later. Improvement from treatment could take anywhere from months to years, and youre more likely to recover if you have less severe symptoms.
Impacted Groups & Risk Factors:
According to Medlineplus.gov, almost anyone can get the syndrome, but it is most common for ages 40 to 60. Men are less likely to get it than women. By race, white/Caucasian people have been diagnosed most. Also, it is believed that stress may be a reason towards the development of CFS. Other risk factors can include recent infection and depression.
***These statistics unfortunately may be inaccurate because many people predicted to have the disorder have not been diagnosed.
Current Research:
Thankfully, there are some solid clues as to what is happening with CFS patients. There is belief that the causes could lie in a persons own immune system. Cytokines- substances that are released by the immune system and impact other cells- are believed to play a role in CFS. Patients tend to have increased amounts of cytokines that cause inflammatory responses such as fevers, muscle pain, etc. These symptoms are more apparent at the start of the disorder.
A Real-World Perspective:
TED Fellow Jennifer Brea talks about her life before and after being diagnosed with ME. How she went from having a normal day to collapsing and being exhausted. Everyday seemed to get harder and more exhausting, while becoming more frustrated with doctors being unable to diagnose her. Watch her TED Talk for the full story.
Video Link: www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
Conclusion:
CFS is a debilitating disease that is thought to affect many more people than have been diagnosed. It progressively tends to get worse and more exhausting through mental and physical exertion. There is no cure, treatment, and research is underfunded. It still has a stigma, and some medical universities do not teach about it. While all looks bleak, things have been taking a turn recently, and new discoveries have been made. The future is starting to look brighter with CFS.
References:
Chronic Fatigue Syndrome. Mayo Clinic. Mayo Foundation for Medical Education and Research, 2018, https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490. Accessed on 1 July. 2018.
Chronic Fatigue Syndrome. MedlinePlus. U.S. National Library of Medicine, 2016, https://medlineplus.gov/chronicfatiguesyndrome.html. Accessed on 1 July. 2018.
Chronic Fatigue Syndrome. myVMC: VirtualMedicalCenter, Medical Centre, 2018, https://www.myvmc.com/diseases/chronic-fatigue-syndrome/. Accessed on 1 July. 2018.
Panko, Ben. New Study Gives Hope to Victims of Chronic Fatigue Syndrome. Smithsonian.com, 2017, https://www.smithsonianmag.com/smart-news/mysterious-chronic-fatigue-syndrome-finally-gets-cause-180964290/. Accessed on 1 July. 2018.
Questions:
1. How can we help support people with CFS here on 7Cups?
2. How can we reduce stigmatism and false information about CFS?
3. How can we help increase awareness and understanding of CFS?
4. What would you like to tell someone with CFS?
5. What do you think is the best thing for someone recently diagnosed to do?
6. How would you keep motivating someone with CFS?
Thanks everyone for reading my honors project! Feel free to ask any questions you might have. I'll answer as quickly as I can. :)
@CalmingStar hey, this is great! I was diagnosed with CFS and it was really bad. My bones would hurt to the point that I couldn't sleep at night. No position I slept in would seem comfortable enough and I seemed to always be in pain. I have migraines so often, they're a part of me now. My doctors feel bad for me because no painkiller really works for a long time. My family believes I'm pretending and just being lazy . But the truth is I'm always hurting physically ... And it's very painful when people don't understand .. So I'm glad you put this out here ❤️
Thank you !
@insiya Of course! I'm sorry you have to go through that. It must be very rough for you. But I am happy to spread the word of a very real disorder!
@CalmingStar thank you. We learn to adjust with everything, right? You're doing wonderful 💕
I can relate to some of this, but it's confusing what's going on with me. It's possible I have this, but I don't even think I can get a diagnosis as 1) I have other illnesses, so ruling all of those out isn't possible. 2) I have something else that's undiagnosed based on some test results, but no one can figure out what, so combined with the diagnosed illnesses I may not have CFS at all.
1. How can we help support people with CFS here on 7Cups?
Listeners need to follow the activing listening skills. I think in general there's still too much of an attitudue that this site is for those who have mental illnesses and people wtih physical illnesses need to see a doctor.
I think in this forum we mostly do a pretty good job, although sometimes posts go too long without responses. I could be biased though 
2. How can we reduce stigmatism and false information about CFS?
The false information is hard, as there is still so much that is unknown that it's hard to reject some of the past mostly accepted false information. So studying it more would help.
3. How can we help increase awareness and understanding of CFS?
Again, medical research so it is better understand and then sharing that information once it's known.
4. What would you like to tell someone with CFS?
I understand what chronic fatigue is like, you're welcome to talk to me.
5. What do you think is the best thing for someone recently diagnosed to do?
Figure out what works for them. Pacing is so important, and the pacing for one person isn't the right pace for someone else. Also, get a doctor who is supportive.
6. How would you keep motivating someone with CFS?
I wouldn't. Pick and choose times. Sometimes it's a day where it just doesn't make sense to feel motivated and sleeping all day or venting about the illness while taking it easy makes more sense. Constantly trying to motivate someone sounds super exhausting.
@CalmingStar this is amazing! After dealing with CFS for about 6 years, I understand the difficulties it embarks. Your social life, mental state and fitness is all compromised. Thank you so much for raising awareness on this invisible topic, you did a great job on it 
@peacefulHug92 Of course. Happy to help! :)