CDC ME/CFS page, updated 30th May 2017

AndyPR

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I've searched but can't find we have either a thread for this or any post that addresses it. Obviously if I've missed it then please post a link to it.

As the title says, the CDC has updated the pages it has on ME/CFS. According to the pages itself, this took place mainly 30th May and 1st June, some pages were revised early July.

The link is https://www.cdc.gov/me-cfs/index.html

As far as I can see, it now has NO mention of CBT and/or GET as treatments. It also has this statement on the treatments page. "Important note: Patients should talk with their doctors about all potential therapies because many treatments that are promoted as cures for ME/CFS are unproven, often costly, and could be dangerous.".

I've only had a quick look, and I'm sure that there will be parts that we all disagree with, but, to me, it looks like an important step forward from the CDC and something else we can use against the proponents of CBT/GET.

[Credit to the Bristol ME Support Group for highlighting the page had changed in this post - https://www.facebook.com/bmesg/posts/887612268053829]

ETA: I'm now starting to wonder if I remember correctly that they previously listed CBT & GET as treatments. Perhaps someone can confirm if that was the case or not?

ETA2: For once my memory was correct, CBT & GET were previously listed as treatments. Thanks to those who confirmed it. :)
 
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Binkie4

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@AndyPR

Great that you / Bristol ME Support group have found this.

If the Bristol group is not a stakeholder who will be consulted from Monday onwards, could you make sure that this piece of information reaches a stakeholder and agrees to pass it on to Nice.

The more we can show that CBT and GET are discredited, the better.
 

Jennifer J

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:jaw-drop:, :cry: of relief, :thumbsup:, :)

Thank you @AndyPR for catching this and posting it.

I'm breathless and filled with so many thoughts and emotions.

I went to google it (cdc cfs) just last night and saw in google it was last updated 2015 so I didn't even look at the page. (Checked it again now and thankfully the version the link pulls up is 2017.) This has been heavy on my mind even more so since @Mary 's thread about her letters to Mayo clinic.

Yes, an important step forward. Finally!!! This is amazing!

Edit: @AndyPR, yes, it was listed before as treatment options. :(
 
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medfeb

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Thanks for posting @AndyPR!

I'm now starting to wonder if I remember correctly that they previously listed CBT & GET as treatments. Perhaps someone can confirm if that was the case or not?
Yes, it did previously recommend CBT and GET and some of its medical education material referenced PACE and similar studies to support those recommendations.

So far, the update is just the page for the general public. The healthcare providers version to follow this summer.

In general, this is a fairly significant improvement over what we had - except for the disability links which look like they might be old. Need to research. Also need to wait to see what further detail is provided in the healthcare providers pages once released.

This uses IOM criteria although it still says "most" patients experience core criteria and doesnt list some of the neurological issues - I am guessing because IOM only really covered the neurocognitive. Also includes sore throat, tender lymph nodes, GI, and allergies and sensitivities

Treatments - No GET and no CBT! A little information about pacing although not enough. Hopefully more is in the healthcare providers version

Provides some info on symptom management but is short on meds recs.

Includes links to the pediatric primer and the IACFS/ME primer as well as the Alberta guidance - the Alberta guidance recommends CBT and GET but also explains a fair amount about the issues with them

The disability page doesnt appear to include the most recent ruling - it has a 2008 link.

Edit - I'm pretty sure this update was sometime this week.
 

Jennifer J

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Includes links to the pediatric primer and the IACFS/ME primer as well as the Alberta guidance - the Alberta guidance recommends CBT and GET but also explains a fair amount about the issues with them
Thank you, @medfeb. I was just going to post about this.
Here's the link: https://www.cdc.gov/me-cfs/healthcare-providers/index.html

I'm happy to see they also included under some people may have:
Allergies and sensitivities to foods, odors, chemicals, or noise
(It was in a version years ago briefly. I believe 2006.)

Thank you everyone for your work and advocacy, I know people have been working for years (decade +) to have this site become more accurate and not harmful. This is a big step in the right direction.
 

medfeb

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This is very good. A statement from the CDC regarding this would be even better.
Excellent point. We need CDC to provide that kind of leadership to influence other medical education providers like Uptodate and also medical societies.

I am compiling the feedback I get and will post online and forward to CDC. Will include this. And if anyone else has feedback, if you either PM me or post here, I'll include.
 
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RogerBlack

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This is truly amazing.
Thank you, @medfeb. I was just going to post about this.
Here's the link: https://www.cdc.gov/me-cfs/healthcare-providers/index.html
The pediatric primer which is one of the three listed guidelines is mentioned is discussed in this thread: http://forums.phoenixrising.me/index.php?threads/pediatric-primer.52307 largely wholly positively.

If the new management guidelines are akin to this, and the patient facing literature - they may be the best in the world.
Thanks both any CDC people who have been involved in this, and those that have made the effort to get clarity in these guidelines.
 

Cinders66

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Excellent
This must help in the fight against NICE. It's clearly not just uk patients who think CBT and GET shouldn't be being promoted like they are as effective treatment. The IOM criteria is much better than NICE on PEM too.
 

dangermouse

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I'm impressed with this too, from CDC treatment section......

...

Dizziness and lightheadedness/Orthostatic Intolerance

"Some people with ME/CFS might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

  • Frequent dizziness and lightheadedness
  • Changes in vision (blurred vision, seeing white or black spots)
  • Weakness
  • Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat
For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For people with ME/CFS who do not have heart or blood vessel disease, doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered."

...

I've described all of those symptoms more than once to my GP and he doesn't have a clue, it's like "computer says no" as it's not there on the screen. NICE should have OI very clear in the guidelines. Patients shouldn't have to try to help themselves all the time.