Friday, November 10, 2023

ME/CFS Treatments: Tried & True and New Hope

I recently came across two interesting pieces--an article and a video--from ME/CFS specialists regarding treatments and even, potentially, the possibility of a cure. I wanted to share both with you here.

Tried and True

This blog post article was written by Dr. Eleanor Stein, who is both a patient of and doctor for ME/CFS. You can read her story and learn more about her blog here; her mission is to share science-based information on ME/CFS. This particular blog post is called A New 4-Step Treatment for the Severely Ill with ME/CFS, which she says comes from Dr. Dag Stola and his team at the Røysumtunet Hospital, a center for severe ME/CFS patients in Norway. Most of this "new" treatment plan was nothing really new but the basics that I've known (and used) for years. It's a short article you can read for yourself and share with your doctor, but some of the treatments included are:

I've never heard of that last one, but my son and I have been using most of the rest for many years, and they do help somewhat. I've included links to my own blog posts, if you want more detailed information on any of those. Many of the supplements were mentioned in my post on preparing for COVID vaccines. I certainly wouldn't argue with any of these, but it seems to leave out a few things that have helped us the most over the years:

  • Treating orthostatic intolerance (OI), beyond just hydration, which can only do so much on its own.
  • Correcting sleep dysfunction - for us, this was absolutely critical. My son recently went through an insurance change/gap and ran out of his meds for correcting sleep dysfunction (not sedatives) and definitely noticed the difference!
  • Treating immune dysfunction - this list does include low-dose naltrexone (LDN), but there are other ways to help normalize immune function as well. My blog post at the link also discusses treating underlying infections, which can be extremely valuable, depending on the patient.

So, it's an interesting list of treatments, though sort of an odd assortment, based on our experiences. I suppose if you are starting from no treatments at all, as so many patients are, then that's a decent starting point ... though I would tackle sleep dysfunction and OI early on, since they help with everything else. 

I did notice the inclusion of NADH on that list, something that I tried early on in my illness, almost 20 years ago, and had forgotten about. The blog post says the research is mixed on NADH but it does seem to help some patients, so I'm going to give it another try, starting next week.

New Hope

And for a completely different perspective, I was fascinated by this short, 10-minute video from one of the top ME/CFS researchers in the world, Dr. Ron Davis, whose son has severe ME/CFS (so he is highly motivated!). Some of this brief video went over my head--there is some scientific stuff in here--but it's very short, and I was interested to hear about some of this new research. Dr. Davis explains it for us laypeople. He also discusses how crashes keep the cycle going, which I found very thought-provoking. This brief talk is titled Is ME/CFS Curable? and Ron's conclusion was that yes, it probably is. You can watch the 10-minute video on YouTube or here below: 


Fascinating ... and this video definitely gives me hope for a better future for us all! And I've been thinking a lot about what Davis says about how crashes perpetuate the disease. Not really news, but he's got me thinking that I'm not resting enough. I've been stuck in a crash for more than a week, so today I am newly motivated to try to rest as much as possible and not push past my limits.

Which treatments have helped YOU the most?

Let me know in the comments below.

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Anonymous said...

Hi Sue, I get you have heard the last med is low dose ambilify. Which Whitney and other severe ME have been using for years. Think they try and stay away from too much info on it bc it’s a psychiatric drug and worried will push the “psych” angle. I haven’t heard of moderate using - will be interesting. Thanks as always for such good information

Sue Jackson said...

Ah, yes! You're right. I looked up the generic name but for some reason didn't notice the brand name Abilify - I have heard of patients using it. So, it's part of this standard treatment protocol for this severe ME clinic in Norway. Yes, that would be interesting to find out if it helps with moderate ME, too.

Thanks for the info!


Anonymous said...

Rest is the only thing that helps. I aim to keep my heart rate under 100, but there are nights where my resting heart rate is 83, which doesn't give me much wiggle room.

Sue Jackson said...

Yes, it was the same for me before treatments. This is where treating OI makes a HUGE difference. I take low-dose beta blockers that lower my HR to more normal levels - and that gives me the wiggle room to actually do stuff without crashing! Life-changing for my son and I.