It is very difficult to understand any illness unless you have experienced it yourself, that is why i have researched and compiled a list of 'F.A.Qs' often asked by non sufferers. Hope it is helpful!
What kind of symptoms do people with ME/CFS have, aren’t they just tired?
Cognitive dysfunction, including impaired memory or concentration , post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercis, unrefreshing sleep, joint pain (without redness or swelling), persistent muscle pain , headaches of a new type or severity, tender cervical or axillary lymph nodes, sore throat (and many more) Telling a person you are tired too is the ultimate insult to someone with ME/CFS.
Do people ME/CFS recover?
The disease can be managed, but no cure exists. People with ME/CFS often live in isolation in part because their activity levels do not allow them to leave the house, work, or even get out of bed depending on the severity of their condition. However, isolation also serves as a way to avoid viruses due to an already compromised immune system.
But I’ve seen people with ME/CFS and they look okay? How can that be possible?
People with ME/CFS endeavour to take part in what activities they can. Unlike people who suffer from depression, they have not lost any interest in hobbies, activities or life. In fact, not being able to participate in these things causes patients with ME/CFS an enormous amount of grief. What you see is a person with ME/CFS having a good day. What you will not see is the price they will pay later for that “good day”. People with ME/CFS can become sicker if they do too much. This costs them jobs, friends, and support.
You just said that the only drug for ME/CFS was also for AIDS and Cancer, how can that be possible?
ME/CFS is not chronic fatigue. Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune disease without a known cause. ME/CFS patients have been compared to Cancer and AIDS patients in their last two months of life.
Can I catch ME/CFS?
You will not catch ME/CFS from someone by talking to them. However, it has been transmitted by blood transfusion, and there have been outbreaks of it in communities in the past. At this point in time, there have been 5 genes associated with ME/CFS, and most people who have it caught it after having any virus such as chicken pox, mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not to donate their organs or blood because of potential undiscovered agents in their blood.
But what if I have a friend with the disease, what can I do for them?
Ask them how they are. Ask them how they are coping. Ask how you can support them. Many patients are living isolated lives. It is painful for them to see so many people do what they cannot do. Many patients cannot use the phone or listen to music because noise and light drains them of energy. They cannot make appointments because they do not know if they will be awake, or strong enough to go. So understand when they cannot see you
Do people die from ME/CFS?
Yes, the most famous case is Sophia Mirza who died at age 32. She was sectioned in the UK because she would not get better, and her subsequent “psychiatric treatment” led to her death. When her body was autopsied, nothing was found, but in an independent medical examination inflammation was found in spinal root ganglia. It was reported around the world that she died of M.E. However, her death certificate read “CFS” because the pathologists who agreed what the disease was argued about the name and CFS was the “modern term”. People with ME/CFS have a lower life expectancy than the normal population and are more likely to die from cancer, heart disease, organ failure and suicide (due to lack of support).
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