ME/CFS Treatments

There is currently no cure for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, there are medications, supplements and management strategies that can reduce symptoms and increase capacity. The complex nature of ME/CFS means that many people with ME/CFS have several diagnoses. It is important to treat each of the presenting health conditions. This page will address the medications, treatments and strategies that are commonly helpful for people with ME/CFS. Please note that I am not a doctor and that you should consult a medical professional before trying new medications or supplements.

Management Strategies

Pacing

Pacing is essential for people with ME/CFS. In the absence of true ME/CFS treatments, pacing is the most important factor in maintaining your functional capacity.

Pacing involves identifying your energy ‘envelopes’. When you stay within your envelope, by keeping your activity within safe limits, you will avoid triggering post exertional symptom exacerbation. Post exertional symptom exacerbation is serious. It lasts, on average, two weeks, and can trigger complete incapacitation. Over time, the act of pushing outside your energy envelopes and repeatedly triggering symptom exacerbation will lower your functional capacity.

Pacing is not easy. It involves the constant monitoring of physical, cognitive, social and emotional exertion. It is important to seek support, for example:

Bruce Campbell runs an online pacing course from the US.

Build a Better Me (also known as Arthritis ACT) runs online and in person pacing courses in Canberra. I have done one of those myself, and it was a lifesaver. See https://www.mecfscanberra.org.au/self-help-course/.

Social Support

ME/CFS is a stigmatised disease. People with ME/CFS are routinely denied appropriate medical care, access to the NDIS, and the disability support pension. Despite suffering severe physical disability and a quality of life lower than virtually any other disease, including end stage cancer or heart failure, people with ME/CFS are commonly blamed for their disease and denied empathy or understanding by doctors, employers, government departments, family, friends and the wider community. For me, it was a life saver to meet other people with ME/CFS who understood. They have brought me out of isolation and gifted me with the sense of connection and support that had been denied to me for decades. I would not be without them.

Build a Better Me (Arthritis ACT) in Canberra offers local face to face meetups, and weekly online zoom catchups – https://www.mecfscanberra.org.au/events/.

Therapies

Graded Exercise Therapy

Graded Exercise Therapy is contraindicated for ME/CFS. It is virtually guaranteed to worsen symptoms and reduce functional capacity in people who truly have ME/CFS. This post explains why – https://mecfs.au/racgp-recommendation-of-graded-exercise-therapy-for-me-cfs/.

Cognitive Behaviour Therapy and Psychological Support

Most cognitive behaviour therapy is an institutionalised form of gaslighting. It encourages people with ME/CFS to believe (falsely) that their symptoms are psychosomatic. Nothing could be further from the truth: ME/CFS is a devastating physiological disease. Furthermore, ME/CFS cannot be managed properly unless you accept that you have it and use pacing strategies. Therefore, most forms of cognitive behaviour therapy should be strictly avoided.

Acceptance and commitment therapy is the exception. Acceptance and commitment therapy may help people with ME/CFS to accept and manage their disability, and to process emotions of grief and loss. General psychological support may play a similar role.

Trauma usually triggers increased ME/CFS symptoms. Also, the experience of having ME/CFS is innately traumatic. Psychological support in processing trauma can help to reduce symptoms and maximise functional capacity.

Medications

Many people with ME/CFS are extremely sensitive to medications. We may display unusual reactions. For example, low dose naltrexone spikes my pain to 8/10. Aspirin leaves me feeling like I am being stabbed inside my stomach. I know people with ME/CFS who have had anaphylactic reactions several hours after a flu vaccination, have been cognitively incapacitated for over a month by a ketamine infusion that had to be stopped half way through, and have been wiped out by a dental anaesthetic injection. It is common for us to need to begin with an extremely low dose and titrate upwards. We may experience clinically useful effects from a much lower dose than normal. A normal dose may yield no extra benefit and intolerable side effects.

Health Rising’s blog post How to Decide Which Treatments To Try for ME/CFS and Fibromyalgia: The Ric Arseneau Talk describes how to choose treatments. To summarise the post, Dr Ric Arsenau suggests that people start with low-risk, high impact treatments. He has provided an assessment of over forty ME/CFS treatments, available as a zip file that you can download to your computer.

Health Rising has highlighted a few of the treatments described by Dr Ric Arsenau:

Supplements

Magnesium – Many people with ME/CFS have a high need for magnesium. Personally, I take 3 x magnesium malate 3750mg and 3 x magnesium L-threonate per day, plus magnesium cream on my legs at night.

Vitamin D – You will need a vitamin D supplement if you are unable to leave the house.

5-HTP – 5-HTP is a precursor to serotonin. Low serotonin has been found in both ME/CFS and long COVID, as described by Health Rising’s The “Serotonin Surprise”: Massive Study Suggests Low Serotonin is Key Factor in Long COVID and Post-Infectious Diseases. This is how to take 5-HTP – https://www.healthrising.org/blog/2023/10/24/serotonin-surprise-long-covid-chronic-fatigue-syndrome/.