Never Mind! 3 Lessons for Evidence-based Medicine and RA

Half-mast flag over US Capitol Sept 11

Clash between patient voices and science?

Previously, we talked about a controversy over evidence in medicine with the withdrawal of Avastin for breast cancer. It was also a vigorous discussion of how evidence-based medicine relates to RA so I hope you’ll read it again – I did. Today, we see a couple of news stories where medical facts were reversed.

Legal evidence is based upon rules and procedures that determine what is admissible and relevant. Scientific evidence is based upon relating actual observations to expectations. What defines evidence in medicine? There are hundreds of definitions of evidence-based medicine, but it is often seen as the point where clinical decisions and external evidence intersect.

Story one: 9/11 Responders win victory for cancer care

Kelly at US CapitolThis year, I was in Washington, D.C. on September 11th when I heard the news about the change in policy related to the government fund for health coverage for 9/11 first responders. The new decision covers dozens of cancers some believe are related to exposure to chemicals during the terrorist attack at the World Trade Center. According to a CBS News report, the decision came after a “recommendation by an advisory committee made up of doctors, union officials and community health advocates, who recommended that cancer be added to the $4.3 billion program.” Until now, the fund covered mostly milder problems such as asthma and sinusitis, “Government will fund care for 50 types of cancers linked to 9/11 under Zadroga Act.”

What’s the controversy?

Researchers have found little evidence to prove that exposure to toxins from the burning Twin Towers caused any cancer, yet the advisory panel decided “it was plausible that first responders and others who were exposed to the toxic dust might get cancer.” One study showed a 10% increase in cancer compared to the general public and a 19% increase over other firefighters.

Story two: chronic fatigue not caused by viral infection (XMRV & pMLV)

Also last month, a new study in the September/October issue of the journal mBio, concluded that the symptoms of chronic fatigue syndrome are not caused by a mouse virus. It seems earlier studies supporting that theory may have been affected by contaminated samples. “To lay the matter to rest, researchers launched the new study. They assessed blood samples from the group affected by chronic fatigue syndrome and those not affected. None of the samples had evidence of either virus,” New Study Debunks Virus Theory for Chronic Fatigue Syndrome.

What do evidence reversals mean to Rheumatoid patients?

Thousands of medical papers have been retracted, proving that evidence is not as easy-peasy as we wish. Theories about chronic fatigue have been retracted before; it’s not a new phenomenon. And think of some of the silly beliefs that have been overturned with Rheumatoid Disease: from the disease being caused by a “rheumatoid personality” to the use of an oven-like box to over-heat patients in order to “kill” RA! Rheumatoid Disease has seen more than its share of evidence adjustments.

Lessens from seeing evidence overturned

Here’s how I think this matters for RA…

1) Facts can stand up to new inspection of evidence. For example, DIP joints are mistakenly discounted in RA.

2) As I’ve said, we don’t always know what we don’t know, so beware of arrogance concerning medical evidence. For example, RA patents with normal range blood tests have often been told they are in remission.

3) The actual experience of patients who live with an illness is important evidence that must be considered. For example, the majority of joint damage in RA patients does not correlate with conspicuous swelling.  

Related reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

7 thoughts on “Never Mind! 3 Lessons for Evidence-based Medicine and RA

  • October 12, 2012 at 7:40 am
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    Kel,
    Why do you consider asthma a “milder problem”? Isn’t that the same thing as other people regarding all arthritis, including RA, as the same thing as their grandmother’s arthritis? People routinely DIE of asthma, by slow suffocation, as with cystic fibrosis. And for others, routinely not being able to get enough oxygen, and being wedded all of life to inhalers and medications, is hardly a panacea.
    Bob

    Reply
    • October 12, 2012 at 8:01 am
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      whoops, I was clearer in the earlier post. Sorry, Bob! I think the original articles last year were saying “mild asthma” and restless leg syndrome and a handful of things that were just simpler and cheaper to treat than cancer. Sorry I was unclear – hazards associated w/ writing at 2 am. If I don’t do that tho, I’d hardly post.

      Reply
  • October 12, 2012 at 7:57 am
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    Lessens from seeing evidence overturned

    Reply
  • October 13, 2012 at 2:57 am
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    There are a number of responders and nearby residents who have already had, or will need lung transplants due to progressive restrictive and/or obstructive lung diseases due to exposure to the toxic dust.

    Reply
  • October 13, 2012 at 8:38 am
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    Evidence based medicence can be very black and white and as we all know all too well our bodies and their reactions to this disease (and frequently many others) is not always so black and white. My blood work, except for slightly elevated CRP counts, has always been incredibly normal. Fortunately, I have a rheumatologist more willing to rely on my reported pain and disability and his clinical exam than on the blood work. At my last exam before deciding to put me on a biologic he said to me, well, your labs show no sign of inflammation, let’s see what your joints say, up on the table, please.
    I am sitting here after two months on Humira with the pain in my joints reduced to just 5 joints (I can’t believe I can actually count them that easily now!) and that is incredibly slight. I have only one joint that has reduced range of motion. Where would I be if he only looked at the labs? I shudder to think! I don’t know how long this will last last but I will take every minute of it!

    Reply
  • February 23, 2018 at 7:10 pm
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    Today I saw a post on Facebook showing a hand severely deformed by rheumatoid arthritis that is completely fixed by taking collagen . I was so angry that this person was trying to sell a product giving what has to be false hope. Is this common? Allowed?

    Reply
    • May 19, 2018 at 11:09 am
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      Yes, very very common. one of the reasons I started this site.
      It’s so sad it makes our loved ones and associates think we choose to stay sick.

      Reply

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