Posted on 09/22/2016 7:38:17 AM PDT by Seizethecarp
If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.
Problem is, the study was bad science.
And we’re now finding out exactly how bad.
Under court order, the study’s authors for the first time released their raw data earlier this month. Patients and independent scientists collaborated to analyze it and posted their findings Wednesday on Virology Blog, a site hosted by Columbia microbiology professor Vincent Racaniello.
The analysis shows that if you’re already getting standard medical care, your chances of being helped by the treatments are, at best, 10 percent. And your chances of recovery? Nearly nil.
The new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review thWhen the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise, say scientists,” wrote the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis. (Federal agencies now call it ME/CFS.) The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more.
But patients like me were immediately skeptical, because the results contradicted the fundamental experience of our illness: The hallmark of ME/CFS is that even mild exertion can increase all the other symptoms of the disease...
(Excerpt) Read more at statnews.com ...
“I’m tired of all seeing all the Chronic Fatigue Syndrome stories!”
And yet here you are commenting on one!
I’ll let you in on a little secret, and it’s what I personally do for stories that don’t interest me: when I see the headline for such a story, I don’t click on it; I just move along to the next headline that DOES interest me and click on that one instead! It works every time!
I was attempting a bit of a pun there, catnipman.
:D
Yes you were! And I missed it!
“CFS was replaced with Fibromyalgia and Fibromyalgia has been replaced with Chronic Lyme disease.”
There has been no such successive “replacement” of CFS as you describe.
These are three distinct medical conditions which any sincere person can research on Wiki.
CFS was replaced with Fibromyalgia and Fibromyalgia has been replaced with Chronic Lyme disease.
When medical experts are baffled, they call it CFS, Fibromyalgia etc. Who knows what will be the next new ailment.
In the meantime, my hair has fallen out, I have constant ANA (inflammation) positive blood results, tired, weak, joint aches. Mind you, 10 years ago I would be gardening, camping, hiking or fishing like there was no tomorrow. Now I sit here, doing nothing.
CFS is real and has a newly-found metabolic signature of relatively high sensitivity and specificity, out of a lab at UC San Diego Medical School:
“Chronic fatigue syndrome is a multisystem disease that causes long-term pain and disability. It is difficult to diagnose because of its protean symptoms and the lack of a diagnostic laboratory test. We report that targeted, broad-spectrum metabolomics of plasma not only revealed a characteristic chemical signature but also revealed an unexpected underlying biology. Metabolomics showed that chronic fatigue syndrome is a highly concerted hypometabolic response to environmental stress that traces to mitochondria and was similar to the classically studied developmental state of dauer. This discovery opens a fresh path for the rational development of new therapeutics and identifies metabolomics as a powerful tool to identify the chemical differences that contribute to health and disease.”
http://www.pnas.org/content/113/37/E5472.full
Sorry to hear. So frustrating, with all the treatments for other diseases, to be in that limbo, with constant pain, and also hurtful are the people (often loved ones & friends) calling you a hypochondriac. Prayers up for you.
Badoom Tish is the typed representation of the drum/cymbal follow up to a joke punchline.
HTRN is also a damn standard bearer freeper...
we NEED to have an all encompassing diagnosis to feel empowered...
Your post was infantile
“As for CFS, I await clear biological evidence it exists. Point to a microbe, an invading cell or other biological unit. To me, the very word ‘syndrome’ connotes inexactness and lays the foundation for all sorts of manipulation that has no connection with the ‘syndrome,’ frankly.”
Many illnesses lack a microbe and exist as a syndrome and are completely accepted...eventually, such as MS, which was considered “all in the mind” of women in the lifetime of our mothers.
The US Gov’t currently calls CFS ME/CFS with the ME short for Myalgic Encephalomyelitis, which is what the illness was originally called in the UK.
Few people in the US like the name, CFS, because “fatigue” does not describe what we experience...which incapacitating debilitation after minimal exertion.
Bookmark
You appear to be an idiot.
It was the equivalent of US $8 million in UK pounds spent in the UK on this study over there...
A top UK psychiatrist who wrote papers saying CFS was all in the mind and could be cured by exercise and psychotherapy and who controlled public policy dumped people with CFS off the disability insurance rolls based on this PACE study.
I think he was actually corrupt and put up to it by the insurance companies so they could get out of paying long term disability insurance.
I had a family member diagnosed with Chemotherapy fibromyalgia......she eventually went to a chiropractor who believed he could help her...and did.
First he put her on a mild sleeping pill for two weeks to break the cycle of not being able to go into rm sleep because of the pain.....this made a remarkable difference....noted within a week.
Then two months of two visits a week in his office to realign her body...and a good dosage of Glucosamine standardized formula - no fillers). Within one month the difference was marked...after two months she went back to work. Continues Glucosamine to this day and noted when she doesn’t take it the symptoms begin to appear again.
She obtains the Glucosamine on line under the company “Pyto-pharmaca” which uses no fillers in their products.
I write this because her fatigue level, pain etc. had been checked by Autheritis professionals and neurologists who could not offer relief. After her recovery her Arthuritic Dr. wanted to know her treatment FOR HIMSELF and also got relief.
This is shocking. Raw data from studies should be available to anyone. I thought that was the academic standard!
.
>> “I thought that was the academic standard!” <<
It was until “Global Warming” came along.
.
Thanks for your sympathy. I am fortunate. My family is very supportive. It is proven medically that something is going on with my immune system. They just cant figure what. Negative for rheumatoid, lupus, lyme, celiac etc.
My sister recently sent me an article about the relationship between an increase in unexplained illnesses and GMO’s. I don’t doubt for one minute that Monsanto, Dow etc. is poisoning us.
My biggest complaint is boredom. Not much of a tv watcher. Love the outdoors - fishing, hiking, etc. but I tire so easily. I honestly don’t know what people who don’t work do all day. I’m going insane.
“Difficult to diagnose” usually means “Easy to self-diagnose”.
Get comprehensive thyroid tests from an endocrinologist.
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