After the release in Science Magazine two weeks ago of research finding a virus strongly linked to CFS (see post below), then today finding on my MSN home page, an article put out by the Mayo Clinic with the intention of dispelling myths about Fibromyalgia, (The same Mayo Clinic that a decade ago sent FMS and CFS patients away with a referral to a psychiatrist and a big bill), I find myself with ambiguous feelings.
These emotions include happiness at the budding awareness of the physiological reality of CFS and FMS, hope that treatments are on the horizon and judgments are packing their bags, as well as a sadness at what those of us with CFS and or FMS have suffered for decades under a medical system that has needed scientific proof in order to treat us humanely or to treat us at all.
“THE ABSENCE OF EVIDENCE IS NOT THE SAME AS THE EVIDENCE OF ABSENCE”. –Carl Sagan
In 1991 Mayo Clinic told me I had “some kind of chronic fatigue sydrome thing…and needed to go home, go into counseling, and it would all go away!” By then I had undiagnosed Lyme for 6 yrs….and symptoms of CFS before that. Interesting to hear what they say on Fibromyalgia…they are still saying Lyme is easily treated. This has all certainly made a stir, hasn’t it. That is a good thing!
Kerry,
I first wrote yesterday,
I have Chronic Lyme disease, fibromyalgia,IBS, PTSD (lost my daughter), borderline hypercortisolism, CFS,anemia and macrocytosis..I BP 130/90 I”ve often wondered if MS is in my future, but Md.’s say no..but I am weaker day by day..they (md’s for the most part) blame my pain on depression..it reminds( What do you think) me of convincing them of PMS or Lymes, years ago,…sometimes, wwomen don’t get too much credence)
Any response would be supportive.and appreciated.I used to be a phys. therapist Assistant for the developmentally disabled…and lost my strength to keep up, and could not wake, sleep problems or pain, to be a reliable employee…
I always felt my credibility was in question as I got weaker..It’s one step ahead, two back for me…I use a cane for balance and strength..can on only walk 1/2 mile, can not squat without falling down (put a hole in my kitchen wal), have fallen on my face 9x- can’t see my Lymes md anymore ($ 300.)monthly out of pocket for 2 years…… They suggested homeopathic..I can do that on my own….I am 54 1/2 y/o..My memeory is transluceent…ie: think f doing something and forget, immediately) I failed a computerized memeory test,,but can remembeer a few #’s for a therapist, but forget questions just asked,or recent conversations with my sons (do not live with me)..I feel bright and confused at the same time..would lovee to heear frome you, or any one else : robin >joeybeanie.com..I’ll be thinking of you..I don’t feel so far awway from a walker witth a seat….Robin