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This really is a core issue. It affects the bottom line of healthcare, as noted in the abstract: It's my hope that, at least in the US, healthcare companies that diagnose and treat ME/CFS will want more accurate prevalence figures in order to estimate costs. Private healthcare providers might...

From the 2015 IOM/NAM report:

Using the current US population, a prevalence of 857/100,000 calculates to roughly 2.8 million. That's 7x the prevalence of MS. I do find that hard to believe. In the US, many providers won't allow an ME diagnosis, muddying the waters even further. For example, Kaiser Permanente currently only...

The orphaned GET/CBT pages have been scheduled to be removed in a special January 2019 Healthwise content update (seems to be an interim update between the usual fall and winter updates). They remain on the website only because of a technical error with the content management system. Note that...

Used to have a "golden hour" in fall. Spring was my worst season. But that stopped about 20 years ago. It's pretty much crappy all year round now, and any improvements or worsenings seem independent of the season.

But the 2015 IOM (NAM) proposed diagnostic criteria actually say: So, is it substantial functional impairment with fatigue (IOM), or fatigue with substantial functional impairment (Medscape)? These are not equivalent and the distinction is important. Medscape is not alone in this. UpToDate...

Thanks for letting me borrow your cape!

UpToDate still cites PACE and Cochrane as "evidence" to recommend GET/CBT as beneficial for some patients in their Nov 2018 literature review. UpToDate now finally acknowledges there are serious PACE methodological issues, and also that GET can worsen PEM in some patients. Anything to discredit...

I am really excited that Solve is talking with Kaiser Permanente. I truly think this is an approach outside of government that could speed up certain areas of research given the NIH is dragging their feet. Patients just want better clinical care and more effective treatments providing better...

Good to hear. Getting Kaiser Permanente's Division of Research interested in ME/CFS has been a long term goal for me. Kaiser has the 2nd largest biobank in the US, as well as the ability to do large scale longitudinal studies in diseases. In past contacts with KP's Division of Research, they...

This is a big win for Kaiser Permanente members with ME/CFS. But Kaiser Permanente physicians aren't bound by what the website (Healthwise) says, and can still prescribe as they see fit. And, as many have pointed out, although GET/CBT are gone, the website ME/CFS content still needs more...

If you are on Twitter, consider thanking @Healthwise for removing Graded Exercise Therapy and Cognitive Behavioral Therapy from their ME/CFS content (and the Kaiser Permanente website). Alternatively, you can contact Healthwise on this webpage: https://www.healthwise.org/contact.aspx

Latest on my 3 remaining issues: Regarding the revision date, Healthwise says June 3, 2018 was the last time this content was medically reviewed, and that is why the revision review date didn't change although the content did. :cookie: The regional Kaiser Washington website apparently has to be...

Graded Exercise Therapy and Cognitive Behavioral Therapy are no longer recommended in the Healthwise content for ME/CFS on the Kaiser Permanente website. Yay! See for yourself...

The Healthwise Fall 2018 update still hasn't made it onto the Kaiser Permanente website. No one seems to know why it's taking so long. But it appears it's not just an ME/CFS issue... none of the Fall 2018 Healthwise content has appeared yet on the Kaiser Permanente website. Healthwise is trying...

Kaiser Permanente has interpreted my repeated requests for info about the delayed Healthwise update as a complaint. All good. I now have a tracking number and people looking into the issue. Healthwise has also promised to try to get an estimated release date for me as well.

What @Alvin said. However, there was a 2010 pilot study in Multiple Sclerosis, which found "LDN was well tolerated, and serious adverse events did not occur" and "LDN significantly improved mental health quality of life indices." Pilot trial of low‐dose naltrexone and quality of life in...

Insurance wouldn't cover compounded LDN for me and that got expensive fast. So I convinced my doctor to prescribe covered 50mg Naltrexone tablets, which I dissolve in water for the correct dosage (discussed in other threads). Even if insurance won't cover, 50mg Naltrexone tablets are fairly...

I personally think LDN should be available to all ME/CFS patients who want to try it for brain fog, fatigue or pain. I'm trying to convince Kaiser Permanente of this.

The Healthwise update on the Kaiser Permanente website is running late for some reason. I'm investigating as to why and trying to get a firm date, but it could just be the holidays.