Friday, September 20, 2019

September 2019 ME/CFS Research Update

I am WAY overdue for a research update here because I have been spending much of my writing time on articles and my upcoming book, Finding a New Normal: Living with Chronic Illness, which is a collection of my articles and essays (from this blog and articles I wrote for ProHealth) on emotional coping, managing daily life, and living your best life with chronic illness. I am feverishly reviewing edits from my editor now and hope to publish the book later this fall.

I've recently published two articles for ProHealth that should be of interest to my blog readers:
Using a Heart Rate Monitor to Prevent Post-Exertional Crashes

Treating Sleep Problems in ME/CFS
I've written about both of these topics here on the blog in the past (in some cases, a very long time ago!), but these articles include the latest research, lots of new information, and a list of references to scientific studies and articles at the end, which makes them great for sharing with your doctor.

Here's what else is new in the ME/CFS world:

New Clinician's Guidelines
A group of the top ME/CFS experts in the United States has been working together to come up with guidelines for other doctors for diagnosing and treating ME/CFS. You can read and print the results of their work, Diagnosing and Treating ME/CFS. It's a brief 6-page document, suitable for taking to your doctor. I was at first disappointed by the final product, though I can see its purpose now. I knew this group of the best-of-the-best ME/CFS specialists was working on clinician guidelines, and I had hoped for something like Dr. Rowe's Pediatric Primer (he was on this group, too). Instead, this brief document provides some good guidelines for diagnosing ME/CFS for other doctors, but only a paragraph on treatments, with a list of some of the options but no explanation. However, a note after that paragraph does refer to both the Pediatric Primer and a Primer for Clinical Practitioners (2014) that I was completely unaware of. This is a 51-page document that DOES get into the details of many different treatment options. While this primer does not include all treatment options, it is fairly complete and would be helpful for primary care doctors or GPs who may know very little about ME/CFS. So, maybe start with the 6-page document to help your doctor with diagnosis and then offer the longer ones!

3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University
This wonderful annual symposium on ME/CFS research and science was again held at Stanford earlier this month. I missed the live-cast, and it doesn't look like they've posted the videos yet. In the meantime, you can read about the symposium, the scientists that attended, and the agenda. You can also read Reflections of the Symposium from Open Medicine Foundation's founder and CEO here. And you can watch the videos of last year's Symposium (plus a number of other informative videos) on OMF's YouTube channel. I'll post a link to the 2019 Symposium videos as soon as they are available.

Solve ME/CFS Initiative Second Quarter 2019 Research Review
Solve ME/CFS, another excellent research and support organization for ME/CFS, just published its second quarter 2019 research review, which you can read at the link. There is so much exciting research going on in every aspect of ME/CFS! Between this and the Symposium, there is a lot to be hopeful about - the pace of science in this field just keeps advancing faster and faster. I received this review in the mail, and you can also sign up to receive their newsletter here (at the top of the page).

That's all for today - my husband just got home from playing golf, so I guess I need to make dinner. The good news for me personally is that I finally got rid of a nasty case of bronchitis that hung on for a month and wiped me out, so I am back to my normal baseline...which is pretty good!

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