While it's good to see CFS showing up more often in the mainstream media, it's also disheartening to see silly-sounding, over-simplified reports of miracle cures, like the one circulating this week about dark chocolate and CFS.
Hey, I'm always thrilled to hear any news about dark chocolate being good for me, but this USA Today blurb trivializes CFIDS and makes it sound like we can solve all of our problems with a few squares of chocolate. The BBC did a better job of covering the full story and emphasizing the seriousness of CFS/ME. The UK's ME Association provides a more complete explanation of the study results.
Fortunately, the news a couple of weeks ago about the link between CFS and enteroviruses received much broader and more complete media coverage. I subscribe to Yahoo's clipping service and saw dozens of news articles from tv, radio, and newspapers from across the country. This kind of report of hard science linking CFS to known viruses is the stuff that will help the medical community and the general public to better understand and respect CFS as the serious illness that it is.
Keep 'em coming!
In the meantime, it can't hurt to continue my nightly ritual of mint tea and dark chocolate.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
5 comments:
hi Sue,
good to hear from you again. Hmm, I find Mickel Therapy hard to explain too and the therapists urge you not to try unless you are fully well. All I can say is it is the thing that i thought would help the LEAST and it is helping more than any past treatment, so I have to stick at it. Not sure if it is available in USA yet. I'm aware it's still highly controversial and I would have had zero faith in it, had I not experienced it for myself - and perservered with it.
Love for now. hope you continue to get better.
-C x
Hi, Sue,
I've been following your blog with interest as I also have CFS.
My support group has been thinking about ways to raise awareness of CFS, especially in "non-traditional" populations.
The CAA has done a good job with the mainstream media and magazines aimed at women but I see very little work being done with children with CFS.
Compared to adults, there is even less known about CFS in children and most media have not really stressed that children can get CFS.
This seems as good a time as any to get this info out especially with the new pediatric definition of CFS.
Since you are freelance writer, have you ever thought about writing an article about CFS in your family and the challenges of parenting for a magazine like Woman's Day, Good Housekeeping, Redbook?
I believe that unless people realize CFS can strike them, they're not going to support greater research. I say this as a young, Asian female. Thanks for continuing to blog!
Great Idea!! I've wanted to do more writing about CFS for awhile now. In the past couple of years, I've focused my limited writing time and energy on my existing clients (i.e. sure-thing income). But your suggestion is something I've wanted to do for a long time, and the angle you suggest - focusing on kids and CFS - makes it unique enough that I might have a chance of getting it published. I will definitely start working on a pitch and get it out there.
Thanks for the idea - I'll let you know how it goes!
Sue
Hi, Sue,
I'm glad you're going to try my idea of writing something about CFS in children and parenting. Perhaps you could try to get Dr. Bell to help review the medical side and get a co-byline. Someone told me that having an MD in the byline helps to get articles published sometimes.
I don't write much but am working with an established writer on other groups.
Good luck!
Hi Sue, I came across your blog about six weeks ago and have to admire your spirit and determination to conquer this affliction.
I could identify with your many trials and tribulations over the past years. I was very interested to find out how your Anti Viral treatment was progressing.
My CFS commenced Jan 2006, and have been through many tests, but have not had the anti viral treatment.
On 8th Aug this year,following many different treatments including CBT - which has been very beneficial, Acupuncture - relief to joint pains where antiinflamatories were not working, I attended a hielpraktiker, who did tests using Electroacupuncture. If you google it you'll find it was discovered in the 1950s.
Within 5 minutes he diagnosed that I had a Coxsackie A1 Virus(enterovirus) amongst other minor parasitic bowel prevalence. I was put on a homeopathic remedy which is introduced as a antidote to the coxsackie virus. I completed this one week ago and was tested last week again. The virus did not register on his equipment. It was a coincidence that the Chia brothers released their paper on the link between CFS and enteroviruses in a subset of people one month later on 14th Sept.
I have had a vast reduction in the virus/fatigue levels, but still have a low grade level. I am now on a pancreas strengthening programme in order to increase the enzymene output.
Fingers crossed, I will update you on any further developments.
Western medicine does not recognise the use of the electroacupuncture methods and has been decried by certain people. I went through the theory of the system and it makes sense to me, but who knows.
Keep up the good work.
Good Luck Sue
John
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