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If all the proposed clinic did was teach pacing, it would be better care than most patients receive in the US.

Too many loud rock n roll times over on the Music and other videos thread.

Indeed. I recently spoke with a family doc who was frustrated when a fellow doctor refused to treat a ME/CFS patient's orthostatic intolerance (recommending instead GET/CBT). "We have plenty of treatments for OI" he said, or something to that effect.

From the expert clinicians summit in Salt Lake City earlier this year (bolding mine): Here's the CDC section on OI. The CDC is, as usual, very nonspecific on medications.

The CDC doesn't have specific Multiple Sclerosis or Parkinson's sections listed in their "A – Z Index for ALL CDC Topics". https://www.cdc.gov/az/a.html PS: In the past, I've complained directly to my provider that ME/CFS patients should get the same level of specialist care that MS and...

I don't want to sidetrack this thread, but this is a very different model from what the CDC in the United States proposes. In the CDC model, there is no ME specialist or ME nurse. The primary care doctor is at the center of diagnosis, development and implementation of a treatment plan, as well...

Agreed. But patients should perhaps be given the option of a CPET test if it's required to prove disability. 2-day CPETs are useful for researching PEM. But what is the benefit of a CPET in clinical care? Maybe to determine maximal heart rate? It's not clear that it's worth the risk for...

I recently had a conversation with a family practice doctor (who has been in touch with Todd Davenport) about whether a CPET should be part of standard ME/CFS clinical care. His view was that it was not worth the risk to patients. I didn't disagree, except in cases where it was necessary to...

Hard to recommend this. Article is all about the fatigue. 1. Article is titled "Chronic Fatigue Care".:banghead: 2. Article states fatigue is responsible for impairment of function. CDC does not say this. Article: "People with ME/CFS may experience extreme fatigue that prevents them from...

Not recently, but I had recurrent ear infections when younger.

Could it be a whiff of coffee? Red Whale is also the name of a gourmet coffee store in the San Francisco Bay Area. And you're in luck. They have Red Whale t-shirts for purchase.

Here's what the Workwell Foundation says about deconditioning and ME/CFS: http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

David Bell wrote about something similar for children with ME/CFS. His advice to children was to simply accept that no one (including doctors) would believe their illness, and to just "get on with your life". I have mixed feelings about Dr. Bell's advice...

You find this positive psychology nonsense all over Kaiser Permanente as well. That maintaining a certain mindset has measurable effects on physical health. It's probably just a matter of time before Kaiser Permanente publishes a handbook. Optimism...

A dentist once recommended hydrogen peroxide (store bought, not food grade) for sore gums. She said just swish a bit around and spit it out. I found it works and use some whenever I have sore gums. Cheap and easy. But actually drinking hydrogen peroxide? That does sound dangerous. :eek:

It makes sense to me. ME has at various times stolen functioning that I've had to later relearn. Such as losing the ability to do math or to speak in complete sentences. Doctors roll their eyes when you tell them, though.

I agree with you. That said, this is exactly what is being claimed for those who practice "gratitude". That the mental state of gratitude improves your physical health. This positive psychology concept is now part of mainstream medicine in the US. Be thankful: Science says gratitude is good...

Looks like the article has been fixed. The final sentence now reads: "Each patient’s program typically includes a combination of therapies to address symptoms, techniques to help patients cope, and strategies to manage daily activities."

Just spoke on the phone with one of the listed article authors (turns out he's an editor), Brian Feinberg. Brian said he would take care of getting it fixed and send me an email when it's done.

You'd think with 7 authors, someone would have noticed. ;) Agreed it's a very nice summary. Hopefully they will fix the cut-off ending. I'd like to share this with some doctors when it's corrected. I sent quick notes to WebMD (ETA: and Medscape) editors. If they don't respond, I will send...