Friday, February 20, 2015

Opinions & Editorials on the New Name & Criteria

Unless you've been offline for the past week or perhaps living in a cave in the Himalayas, you have probably seen at least some of the flurry of editorials and opinions about the new name - Systemic Exertion Intolerance Disease - and diagnostic criteria for our illness. I wrote about it last week, when it was announced, and included in that post my own opinions, but I've been curious to see what the mainstream media and some of the more prominent figures in our little world think about it all. So, here is a compilation:

The Media
I was thrilled to see that the release of this report was well-distributed to mainstream media news outlets - in all, over 300 articles and stories appeared! Woohoo!! Not all got it right in their reporting (some appeared not to have actually read the report). NBC Nightly News was especially bad in their coverage, which was a huge disappointment. The patient they filmed appeared to be a busy and active mom, despite the voice-over and interview saying she was sick (I'm not doubting she had ME/CFS - but they chose someone whose invisible illness really was invisible).  They capped off the segment with an interview with a "doctor" (she was a rheumatologist who makes frequent TV appearances) who said the best treatments are CBT and exercise! Seriously. With "Exertion Intolerance" front and center in the name. My husband was yelling at the TV screen! I tried to mount a defense and let NBC know they got it wrong, but my efforts were drowned in the bigger news of Brian Williams' suspension.  The Solve ME/CFS Initiative had better luck than I did (their CEO Carol Head was also featured in the segment and was the only bit of accuracy in it!) - they urged NBC to issue a retraction about exercise being a good "treatment" - which they did on their website, though I doubt that many of the millions of viewers who watched the NBC Nightly News will ever see it!

However, some did a good job accurately covering the story and spreading the word:

NPR's article was excellent and accurate and even included a quote from my good friend and outstanding advocate, Jennie Spotila.

The New York Times also ran a good piece (though it was a blog post and not a print article) that was accurate and included some history and quotes from Dr. Rowe, Dr. Bateman, and Leonard Jason.


Science Magazine covered the announcement in their ScienceInsider column and again, did a good job getting the facts right and interviewing real experts.

As always, Cort Johnson of Health Rising did a fantastic job of summarizing the media coverage - this blog post of his includes more excerpts from media outlets like WebMD, MedScape, and Nature magazine.

Our Experts/Our People
It has been very interesting to see the wide variation in responses from our own community of both ME/CFS patients and clinicians, researchers, and other experts. Here's a small sampling:

Jennie Spotilla, advocate extraordinaire, whose blog, Occupy CFS is my favorite source for up-to-date information on advocacy, politics, and inner workings of our illness, wrote a post called Your Move, HHS on the topic that has been on MY mind - what comes next?

Leonard Jason, a well-known and highly respected ME/CFS researcher, wrote a critical editorial on the name change, based on input from patients and his experiences.

Tina Tidmore, an ME/CFS patient and advocate, wrote a very thoughtful blog post on both the criteria and the name that is well worth reading and quite thought-provoking.

And perhaps most importantly, comments on the name change from Dr. Lucinda Bateman, who is not only a well-respected ME/CFS clinician but also served on the IOM committee that recommended the new name.

My opinion? You can read my detailed assessment in my previous blog post, but after having a week to think about it and read all these other opinions and editorials, my opinion is pretty much the same:
  • The criteria is good - a huge step forward since we have NEVER had diagnostic criteria in the US before (a point that many seem to be overlooking).
  • But not great - I would prefer to see symptoms of immune dysfunction (recurring sore throat, swollen glands, feeling feverish, etc.) somewhere in there because those signs were key to finding my own diagnosis (which took a year).
  • SEID is better than CFS (anything is!) but not ideal. I agree that ME isn't scientifically accurate for all patients, and Dr. Bateman makes some excellent points about it already being defined in the UK. I would have preferred something along the lines of Neuro-Endocrine Immune Disease and am confused as to why this hasn't been discussed anywhere. There is plenty of science behind the presence of dysfunction in these 3 systems. I do think there is still the potential for "exertion" in the name to be misunderstood and minimized, but I can live with SEID - for now.
Whew. There's been a lot going on in our world this past week, and hopefully, all of this talk will lead to some action - more research funding and more research!

What are your thoughts?

1 comment:

  1. Anonymous12:39 PM

    Yes I agree with you. I think that the media is SO unaware of this illness that they tend to use "experts" who are CBT & GET people, rather than the people who really know the disease. So the commentary after the news was out of sync. Hard to get the entrenched views dug out.

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