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Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
STAT NEWS ^ | September 21, 2016 | JULIE REHMEYER

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 ...


TOPICS: Culture/Society; Government; News/Current Events; United Kingdom
KEYWORDS: cfs; chronicfatigue; mecfs; ms; pacetrial
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To: Common Sense 101

“So you’re chronically fatigued about these stories of chronic fatigue syndrome? So you’re inflicted with chronic fatigue syndrome?”
==
By Jove, I think you got it!


21 posted on 09/22/2016 7:54:55 AM PDT by LouieFisk
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To: Gaffer

The term “it’s all in your mind” is more true than we think. After all, pain is all in your mind. The disease really does exist but the treatment is many times to get the mind right instead of just drugging the patient to shut them up.
Diet, exercise, acupuncture and meditation can do wonders for people but they are usually the last resort.


22 posted on 09/22/2016 7:55:45 AM PDT by AppyPappy (If you really want to irritate someone, point out something obvious they are trying hard to ignore.)
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To: HiTech RedNeck

I’ve had several family members suffer through it. A couple who didn’t submit lived longer IMO. The ones that didn’t went quickly.

My only comment to you can be is quality of life and discomfort. That isn’t an option with rat poison (and that is what the medicine is). I remember an Atlanta oncologist treating his patients with rat poison instead of medical rat poison. Same thing, but he went to jail.

My only comment to you in the end is that “bought time” doesn’t always equate to “peace of mind.”

thanks!


23 posted on 09/22/2016 7:56:37 AM PDT by Gaffer
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To: HiTech RedNeck

Why on earth would I need to “Google” something you wrote?

I wasn’t smarting off.


24 posted on 09/22/2016 7:58:56 AM PDT by Gaffer
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To: Gaffer

If you do not understand something, that is a good first step. Use bing if you want to type fewer characters, but go to something that will cure your ignorance.


25 posted on 09/22/2016 8:00:19 AM PDT by HiTech RedNeck (Embrace the Lion of Judah and He will roar for you and teach you to roar too. See my page.)
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To: onedoug

Has anyone noticed the quality of healthcare getting worse and worse.

I sure have.


Yep. That is one reason I don’t have health care insurance.

I have actually done a BETTER job than my doctor diagnosing myself with google.

My wife and I are almost 63 and the only drugs we take are the occasional advil if necessary and my wife takes over the counter medicine for her allergies.

I would have written a longer post but I was just too darned tired...


26 posted on 09/22/2016 8:00:25 AM PDT by Mr. Douglas (Today is your life. What are you going to do with it?)
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To: Gaffer

You bias the whole discussion with gratuitous pejoratives.

Do you even understand the theory?


27 posted on 09/22/2016 8:01:07 AM PDT by HiTech RedNeck (Embrace the Lion of Judah and He will roar for you and teach you to roar too. See my page.)
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To: Seizethecarp

Illness is physical, mental and spiritual. All three must be ‘treated’ for healing to occur. Most doctors today simply listen to patients describe symptoms and then prescribe drugs to alleviate the symptoms - drugs that then cause other symptoms or aggravate the current ones even more. They do not listen to heal, or have any idea they should have the patient look at his/her lifestyle as a cause.

No, I’m not a doctor...this has all been my experience. I suffered from what an integrative doctor, who listened to me and looked deeper, called ‘adrenal fatigue.’ I am healed and restored - all credit to God- however, if I had relied on prescriptions I believe I’d be sicker than I was when it all started.


28 posted on 09/22/2016 8:01:17 AM PDT by dubyagee ("I can't complain, but sometimes I still do.")
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To: goodnesswins

Yes...I find it best to avoid doctors...MDs...unless you break something or are nearing incapacitation


This is exactly our MO on this. The internet has *almost* made them obsolete.


29 posted on 09/22/2016 8:01:20 AM PDT by Mr. Douglas (Today is your life. What are you going to do with it?)
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To: Gratia

I think a major cause is Obamacare. I think a lot of older doctors are just planning on early retirement. Good thing India and Mexico are churning out new ones.


30 posted on 09/22/2016 8:02:59 AM PDT by Mr. Douglas (Today is your life. What are you going to do with it?)
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To: Seizethecarp

Where did the $8 million go?


31 posted on 09/22/2016 8:03:01 AM PDT by Paladin2 (auto spelchk? BWAhaha2haaa.....I aint't likely fixin' nuttin'. Blame it on the Bossa Nova...)
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To: HiTech RedNeck

Please repeat the word I used that you describe as “pejorative.”

If your example are the words “rat poison” I used, I invite you to (as you say, Google) investigate the ingredients for that versus accepted chemotherapy chemicals.


32 posted on 09/22/2016 8:04:59 AM PDT by Gaffer
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To: HiTech RedNeck

I suspect that the prevelence and lack of patient progress in recovery is primarily due to the ever increasing concentration of CO2 in the atmosphere. Prove me wrong.


33 posted on 09/22/2016 8:05:56 AM PDT by Paladin2 (auto spelchk? BWAhaha2haaa.....I aint't likely fixin' nuttin'. Blame it on the Bossa Nova...)
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To: onedoug

It’s been going downhill for quite awhile.

Getting an appointment is a matter of waiting, and their advice should your symptoms worsen is “go to the ER.”

As far as doctor’s misdiagnosing or giving bad advice, that’s also been around for awhile: I’ve had MS for 20 years, but when all I knew was that my legs didn’t seem to be working right...the first 3 neurologists I saw offered these diagnosises:

1. It’s menopause. (I was in my early 40’a)
2. I didn’t exercise enough, and needed to walk more.
3. I wasn’t paying attention to my gait and needed to pick my feet up when I walked.

Finally ended up in the ER and couldn’t walk at all...then they decided it was neurological and the investigation turned toward that.

I have to see doctors due to my disease and complications associated with it. Do I trust the doctors to have the answers and to know what to do, not really. So you have to be your own advocate, do your own research, and then make sure you have a doctor who’s willing to listen and work with you, and treat you as an individual.


34 posted on 09/22/2016 8:06:51 AM PDT by Dawn53Fl
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To: HiTech RedNeck

I suspect that the CFS prevelence and lack of patient progress in recovery is primarily due to the ever increasing concentration of CO2 in the atmosphere. Prove me wrong.


35 posted on 09/22/2016 8:07:27 AM PDT by Paladin2 (auto spelchk? BWAhaha2haaa.....I aint't likely fixin' nuttin'. Blame it on the Bossa Nova...)
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To: AppyPappy

I am beginnng to think that Lupus is the same story.


36 posted on 09/22/2016 8:07:39 AM PDT by gloryblaze
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To: gloryblaze

For many people, Lupus is basically like a version of RA. Many people have found relief by changing diet. I know two people who got relief by giving up wheat.


37 posted on 09/22/2016 8:12:11 AM PDT by AppyPappy (If you really want to irritate someone, point out something obvious they are trying hard to ignore.)
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To: Gaffer

Syndrome just means they identify it by the symptoms because they don’t know the cause yet. Doesn’t mean the disease is not real. Most syndromes’ causes are eventually identified.


38 posted on 09/22/2016 8:12:50 AM PDT by Boogieman
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To: Common Sense 101
So you're inflicted with chronic fatigue syndrome?

Sounds more like chronic fatigue syndrome fatigue syndrome.

39 posted on 09/22/2016 8:13:39 AM PDT by Only1choice____Freedom (As long as America's tolerence of failure is not overwhelmed by a desire to succeed, we will fail.)
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To: Gaffer
Badoom tish
40 posted on 09/22/2016 8:14:41 AM PDT by Boogieman
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