A New 4-Step Treatment for the Severely Ill with Myalgic Encephalomyelitis

Many of my email correspondents asked me questions such as what vitamins are good for myalgic encephalomyelitis (ME) and what supplements are good for chronic fatigue syndrome (CFS). In this blog post, I will share a new 4-step treatment for the severely ill with ME/CFS. It includes general health information about supplements and vitamins for ME/CFS, and it concludes with my perspectives on whether we're making progress with ME/CFS research.

This 4-step treatment was created by Dr. Dag Stola and his team at the Røysumtunet Hospital, who I learned about at a conference this year. I provide more context for their work and information about his approach in the final section of this post - it’s well worth the read!

Before continuing, I must add a disclaimer. I’m passing on health information, not individualized medical recommendations. Although fairly safe, every intervention can be risky if you have certain pre-existing conditions or risk factors. If you are considering any of these suggestions, please consult your healthcare team. You are responsible for your healthcare decisions.

Step 1: Hydration is Key

The first of the four steps starts with general supplements and hydration: 

• thiamine 600 – 1800 mg
• oral rehydration salts – 20 mg in 1 L of water twice per week
• N-acetyl cysteine, multi-vitamin, and multi-mineral including potassium and magnesium

The idea for thiamine (vitamin B1) came from a Danish paper by Bager and colleagues showing that people in remission from inflammatory bowel disease, yet still experiencing significant fatigue, improved when given high dose thiamine for 4 weeks. We can’t predict from this

• whether thiamine will benefit fatigue for people with ME/CFS;
• whether people who respond need to continue thiamine beyond 4 weeks to maintain effect; or
• whether thiamine will continue to be effective over a longer term, as ME is a chronic condition after all.

The suggestion to take oral rehydration salts comes from the work of Dr. Meadow, which I reported on in my summary of the 2020 IACFS/ME conference. After writing that blog post, several of you, especially people with unstable blood pressure and POTS, tried Dr. Meadow’s protocol, and some reported positive effects.

Step 2: Supplements to Help ME

When considering what supplements are good for myalgic encephalomyelitis/chronic fatigue syndrome, keep in mind that mitochondrial support is key. The following supplements can support mitochondrial function: 

• NADH – 20 mg/day
• CoQ10 – 200 mg/day
• Hydroxy B12 – 10 mg/2 ml subcutaneously twice/week

The evidence for the NADH + CoQ10 comes from a Spanish paper by Dr. Castro-Marrero and colleagues in 2014. They are not the only ones suggesting that these supplements, which support mitochondrial function, could be helpful for people with ME/CFS and other fatiguing illnesses. In my own practice, I didn’t find them consistently helpful, which is why they are not included in my manual Let Your Light Shine Through. But this doesn’t mean they won’t help some people.

Vitamins that are Beneficial for Myalgic Encephalomyelitis

High-dose B12 is a remedy I have found very useful; it ranks in my Top 3 all-time remedies. Stola was inspired by a 2015 Swedish publication by Regland and colleagues. Similar to myself, Regland and colleagues found methyl B12 to be more effective than hydroxy B12, but other authors favor the hydroxy form. Likely, there is a lot of individual variation. My recommended B12 protocol is 10 mg/ml methyl B12 injected 2 to 3 times/week. Details are outlined in my manual Let Your Light Shine Through Session 9.

Step 3: Benefits of LDN

Low-dose naltrexone (LDN) is a medication that makes Dr. Stola’s list. 

• LDN - 4.5 to 6 mg in the evening

My Personal Story with LDN

I first became interested in LDN in 2011 when it was reported by an online patient survey as one of the most effective treatments for ME and FM. The research at that time showed a few small studies in multiple sclerosis and inflammatory bowel disease suggesting that LDN has a mild anti-inflammatory effect. I published a patient information sheet on it (just before I created my website), and several of my patients tried it with modest effects. I wasn’t blown away by the results, and it receded into the background of my thinking.

Then a couple of years ago, one of my very brilliant physicians suggested it for a rare, possibly immune-related condition I have, and it has exceeded expectations - working better than several expensive, risky medications that caused nothing but side effects. So, my interest in LDN is re-ignited.

Professors Marshall-Gradisnik and Staines from Australia have published a potential mechanism of action for LDN in ME/CFS involving a calcium (Ca²⁺) ion channel called TRPM3 and opioid receptor interaction in natural killer cells. My biochemistry doesn’t allow me to say for sure whether their explanation is likely, but it’s good to know there may be a rationale for LDN use as it’s extremely popular. Use in the field is far outpacing the research. But not for long.

Looking at the Clinical Trial Database, there are no fewer than 61 trials underway worldwide using LDN including some in ME/CFS, FM, and various painful autoimmune disorders. Time will tell whether LDN is generally helpful in ME and FM. In the meantime, it’s a very safe and relatively inexpensive treatment - the primary cost is for compounding the low dose. People trying LDN should know it often works very slowly - over 3 to 6 months. Patience is required.

Step 4: A Medication for Energy

A low-dose of aripiprazole can be beneficial for energy in people severely ill with ME/CFS:

• Low-dose aripiprazole - begin at 0.25 mg/day and increase slowly to a maximum of 2 mg (at which point it’s no longer “low dose”)

Being a psychiatrist, I was already aware that aripiprazole, a new-generation antipsychotic medication, was well tolerated by people with ME/CFS and FM, but I hadn’t noticed that it actually had beneficial effects on energy. The potential impact of this psychiatric drug on ME/CFS came to light with a published case series by Dr. Crosby from Stanford. I mentioned his report in my 2021 review. In his retrospective series of 101 patients, 75/101 (74%) experienced an improvement in one or more of fatigue, brain fog, unrefreshing sleep, and PEM episodes, or “crashes.” This is very encouraging as no other treatment is this effective. 

What I love about these four steps is that they involve relatively inexpensive, safe, and well-understood remedies that most physicians would be comfortable prescribing. Feel free to forward this blog post to your MD to see if they will work with you to try whichever of these are safe for you.

Are We Making Progress with Myalgic Encephalomyelitis (ME)?

If you’ve been asking yourself, “How can I improve myalgic encephalomyelitis,” I think that you’ll feel more hopeful after you read this. Although things are moving much too slowly for those suffering now, there are reasons for optimism:

1. Several national and international consortia are bringing research teams together. This will move things forward faster. As an example, the ME/CFS Research Network of the National Institutes of Health (NIH) in the US consists of four centers in the US and the ICanCME research network in Canada. If you look at the map on the network webpage, you’ll see a dot on Calgary — likely that hasn’t been updated since I resigned from my ICanCME working group chair position. https://mecfs.rti.org/
2. Led by the European ME Coalition and the NIH, there has been a push to use what is called “common data elements.” This means that increasingly people around the world are using similar methods and tests so that we can compare studies. https://europeanmecoalition.com/
3. The nonprofit sector continues to lead by consistently funding international research of high quality. Organizations like the Open Medicine Foundation https://www.omf.ngo/, the Solve ME Initiative https://solvecfs.org/, and Invest in ME https://www.investinme.org/index.shtml - are a few of the perennial heavy hitters.

From time to time, these organizations hold conferences of the funded researchers and make the recordings available to the public. Invest in ME has done so for 15 years, and each year I watch with interest as they often include European researchers who are not a part of North American collaboratives. https://www.investinme.org/IIMEC15.shtml

Of the excellent presentations this year, one caught my attention, and it was Dr. Dag Stola’s. Why? Because he’s an ordinary physician trying to find solutions NOW to help severely ill patients. Given that we have no definitive cure for ME, his approach is well worth sharing.

Dr. Stola: Some Context and His Approach

First a bit of context. The new treatment approach is taking place at the Røysumtunet hospital in Norway. This was formerly a hospital for patients with severe epilepsy. The National ME Association in Norway negotiated and fundraised to convert this idyllic, rural facility into the first dedicated clinical center for ME in Europe. Each of the three houses has the capacity to care for four patients. Patient partners from the Norwegian society advise on all aspects of the care, including renovations to the houses to ensure the rooms will have low sensory stimulation. They ensure that the multidisciplinary staff understands the special needs of the severely ill so harm is minimized.

Dr. Dag Stola and his team at the Røysumtunet Hospital combed the literature to find approved, safe, and mostly natural remedies with at least one randomized controlled trial supporting their use in ME or some related fatigue disorder. Although most of the studies are small and the remedies don’t work for everyone, they reasoned that if people were offered several remedies in a step-wise program, some may improve. I can only imagine the time it took to sift through all the studies and decide which treatments to include.

If you are interested in treatments like Dr. Stola’s four steps, you may be interested in my manual Let Your Light Shine Through: Strategies for Living with ME/CFS, FM and MCS. It contains hundreds of medications, nutritional, and self-management strategies that I have found most helpful over my 20-plus years in the field. I’m happy to report that most of the suggestions in my manual have stood the test of time, and if I were to rewrite my manual, I would make very few changes.