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» LymeNet Flash » Questions and Discussion » General Support » Bad Bad Science- Chronic Fatigue Syndrome

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Author Topic: Bad Bad Science- Chronic Fatigue Syndrome
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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This may be what we need to do.

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

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www.DrJonesKids.org
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www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

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Wow, it'll take years to undo the damage of that load of crap! Can't believe that people thought it was that easy. What's the real purpose behind that so called study?

Science should win out in the end in regards to Lyme and Co too.

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6145 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Neko
LymeNet Contributor
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Chronic illness can all be cured by gradual exercise and therapy, we just don't want to feel better!

I had a friend tell me I have a mental illness that I refuse to treat..so seems to be a common theme. Sympathy for those with Lyme, CFS, fibromyalgia...has an expiration date.

Once you don't recover its YOUR fault.

My guess is confirmation bias...these researchers and doctors believe this stuff is all in the head...so they design studies in ways that reinforce this belief.

Posts: 133 | From North Shore | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
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They skew it to support their theory. Some buy it, but the smart ones don't.

I learned in college to follow the path of who benefits the most, who paid for the study, or who is backing the info. I guess parents need to start teaching their children that method early so people stop buying the crap these drs are shoveling.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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just glanced for now. I've not had the energy to read the article yet but was always bothered by that bad advice. I knew better. The Stigma, the Shame, The Disgust directly toward those who are ill that this terrible theory caused . . . . Big Sigh.

I had to learn not to tell anyone I was "so tired" but really use the word "ill" instead which is really more accurate. There is no word that adequately describes the level of bone deep cellular crushing fatigue or payback hit for activity over done.

Thanks for posting this, I did just save a file page for my study notes on this so I'll go back and read it in full later.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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And, as for medical testing:

http://www.npr.org/sections/health-shots/2016/09/29/495797739/flawed-research-tool-leads-to-faulty-medical-findings

Flawed Research Tool Leads To Faulty Medical Findings

[Re: custom-built antibodies in diagnostic tests / treatment research]

By Richard Harris - NPR - September 29, 2016

. . . This is not a quick fix. Tests to validate antibodies are time-consuming and expensive, and sorting through the more than 2 million antibodies on the market today would be a Herculean task.

The National Institutes of Health, which provides $30 billion a year to support biomedical research, is reluctant to insist that scientists use only validated antibodies. . . .

. . . Part of the problem also lies with poor training of young scientists working in university research labs, Freedman says.

GBSI surveyed scientists about their use of antibodies in preparation for the meeting and discovered that

31 percent of young scientists didn't even think it was necessary to validate the antibodies they rely on in their labs, even though bad antibodies could completely invalidate their findings. . . .
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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