This weekend, I came across this information via my 4Walls and A View Twitter feed. This campaign totally intrigued me because I can’t think of one (1) person with this illness who likes the name. I have tried several times throughout these past 20 years, through a myriad of campaigns, to help get the name of this illness changed but to no avail.
The term chronic fatigue syndrome trivializes the seriousness of the disease and damages patients every minute of every day. Imagine calling Parkinson’s disease chronic shakiness disease! Or calling Alzheimer’s chronic forgetfulness disease! It would be reprehensible.
[...] while physicians equate the CFS experience with that of a cancer patient undergoing chemotherapy, few patients receive adequate medical care. The severity of CFS is as significant as that experienced with other serious illnesses, such as multiple sclerosis, COPD, end-stage AIDS, and kidney failure; yet CFS consistently receives among the lowest in federal dollars for research.
The other thing they point out – and that I have always thought must cause an incredible amount of confusion for those who don’t understand the illness – is how,
[...] in countries around the world, including Canada, CFS is known either as ME/CFS or simply ME. And the International Association for Chronic Fatigue Syndrome – or IACFS – voted to change their name to the IACFS/ME. This is the largest organization of CFS researchers and clinicians in the world. It’s time we followed suit.
I truly believe that one of the main hindrances to research, grants, credibility, and finding a cure can be laid at the feet of the ridiculousness of a poorly chosen name. In addition, Chronic Fatigue is also the name of another illness that can occur after surgery, PTSD, serious illness, etc., which only compounds the problem of credibility and confusion in my book.
If you would like to check out the rest of the website, and/or, vote, you can do so here.
If you have access to Facebook, Twitter or Stumble Upon, I think we should utilize these sites and spread the word!
As an update to how I am feeling, I am doing much better. I started to feel better on Saturday and then took a step backwards on Sunday, but was feeling better again on Monday. I have decided that I am going to rest as much as I can during the coming weeks so I will be in the best place I can be come August.
I am hoping that Sue Jackson and I will be able to get together tomorrow for lunch. If tomorrow looks like today, it will be a good day. I was even able to get in a 5 minute walk and a 20 minute walk!
My only problem today is headaches. It’s been about 2-3 weeks now and I keep getting this really bad headaches that come and go. I never know when one is going to hit me and when it does, it is a doozy.
I think I really need to find a way to go and see my chiropractor in Claremore. I have a feeling may head has slipped out-of-place and my be sitting on some nerves.
But I need to find the money, a ride and all that. So, one thing at a time.
As a side note, if you are feeling up to it and have the time, please drop by Laurel’s blog, Dreams at Stake. Her post, Illness and Invisibility , is excellent!
I don’t know about you, but I am so ready for summer! HAPPY SUMMER by the way! It started yesterday!