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Supplements and Treatments

In a perfect world, it would be understood what each of our bodies need to enable improvement and recovery.

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In this future world, there will be duplicated, published peer-reviewed clinical trials to back up any treatment recommendations that might be made. There would also be medical professionals who are knowledgeable in assessing each person's health and who have the expertise to manage symptoms and monitor treatments. We certainly aren’t there yet.

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Right now, when considering what supplements and treatments might be beneficial, we can refer to expert ME/CFS clinicians around the world and anecdotal evidence from the ME/CFS community, along with what published research there is. But care must be taken to always consider the individual, the risk of harm, and to approach any new treatment safely. We offer some guidelines for this below. 

DISCLAIMER: MECFS Canterbury does not provide recommendations for any treatments for your particular situation on this website. Any advice, either explicit or implied, is not intended to replace the qualified medical advice that is necessary for each individual. Please discuss any lifestyle and treatment changes with your doctor first. MECFS Canterbury does not accept any responsibility for any treatment undertaken by readers of any content or for any error or omission in connection with an article or content published on this website.

What Lived Experience Tells Us

From decades of people with ME/CFS and their doctors sharing what may help, we can make these points:

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  • Pacing our activity and energy expenditure, and including rest periods in each day, seems to be the best treatment protocol to manage symptoms and improve quality of life.

  • Managing stress and calming the parasympathetic system through relaxation therapies often helps.

  • People often report a supplement may be helpful for a period of time, but then it loses its impact. That initial period of respite may still be of high value. Stopping and then starting again may restart effectiveness.

  • Supplements and therapies can cost a lot – at a time when we are likely to have limited financial resources. Given many treatments do not have evidence to support their use, will not work for every individual, or not for long, it can be difficult justifying investing in them. Purchasing a mobility aid or hiring a cleaner to help pacing, may achieve more.

  • It is likely that there are subtypes of ME/CFS, and these may require different treatment pathways.

  • People are often diagnosed with ME/CFS when a differential diagnosis or comorbid condition should have been identified. e.g. EDS, MS.

The Risk of Harm

Some supplements, treatments and therapies can DO HARM:

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  • While “natural” medicines and conventional pharmaceuticals can be helpful, they can also be contraindicated or dangerous if you have other diagnoses or are on other medication.  
    Examples: Did you know that anecdotally, even basic supplements like magnesium, vitamin D and C can have negative health effects? Did you know that an estimated 1 in 250 people in NZ are at risk of developing hereditary haemochromatosis (toxic iron overload) so should never take iron supplements?

  • People with ME/CFS can be very sensitive to supplements and vitamins, so their response cannot be assumed or judged from the experience of others with ME/CFS, or the general public.

  • Fillers in supplements (as an example, mag stearate) can affect people with ME/CFS badly.

  • Stimulants may seem an intuitive choice, but they frequently backfire in ME/CFS, leading to a very brief boost followed by a crash.

  • Some Neuro-linguistic programming (NLP) therapies encourage people to exceed their energy envelope and risk pushing people with ME/CFS into a more severe symptom level.

  • Graded Exercise Therapy (GET) is contraindicated, and is harmful when exercise is increased and triggers PEM..

Guidelines for Introducing Something New

  1. We recommend that you consult with your GP before starting new treatments.

  2. Add only one supplement change at a time, so that it is easier to verify what is helping or not.

  3. Start supplements on extremely low doses, because many people with ME/CFS are hypersensitive.

  4. Stop supplements/treatment if any negative reactions/symptoms are experienced (please check with your GP if this needs to be done gradually)

  5. Monitor the use of supplements extremely carefully.

    Keep a journal prior to starting – it is so easy to miss or over-inflate impacts.

  6. Trial for 2 – 3 months. If unsure whether it is helping, stop for a period (in a way that is safe to do) and monitor any changes.

Start Low. Go Slow. Keep a record.

Potential Supplements and Medications

This is a list of potential supplements that some ME/CFS patients can tolerate and have sometimes found helpful. Unfortunately, this does not mean they will be good or helpful for you.

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PLEASE talk to your doctor and refer to the risks and approach guidelines above before trailing.

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  • Vitamin D - for those housebound and don’t get enough sun, preferably after a vitamin D test.

  • Magnesium malate - in evening for insomnia, but some forms can disturb sleep and bowels.

  • Lypospheric Vitamin C or the cheaper standard Vitamin C - for immune support.

  • Vitamin B12 and B multi - for brain fog (supplements are considered less effective than injections).

  • Electrolytes – for those with Orthostatic Intolerance symptoms. Extra salt can be a good alternative, unless you have high blood pressure.

  • Gut health tonic - for digestive issues.

  • Iron - only when deficiency has been confirmed by a blood test.

  • Co-Q10 - some people have found this effective for mitochondrial support.

  • NAC (N-acetylecysteine) – enhances mitochondrial support.

  • Antihistamines – particularly if signs of MCAS, Mast Cell Activation Syndrome.

  • Melatonin slow release – for sleep support.

  • Horopito therapeutics - for systemic Candida.

  • Low Dose Naltrexone (LDN) – evidence for pain support, emerging evidence for fatigue support. Used 'off-label' in New Zealand. Refer to our leaflet.

  • Evening primrose oil - may be helpful in relieving joint pain.

  • Mestinon (pyridostigmine bromide) - emerging evidence for supporting aerobic capacity, fatigue, muscle strength and mental clarity. Used 'off-label' in New Zealand. Refer to our leaflet.

Potential Therapies

This is a list of potential therapies that some ME/CFS patients have found helpful. Unfortunately, this does not mean they will be good or helpful for you.

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PLEASE talk to your health team and refer to the risks and safe approaches suggested in our guidelines above before trailing.

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  • Vagus Nerve Stimulation (VNS) - calming the Sympathetic Nervous System (SNS), the fight /flight response in the Autonomic Nervous System (ANS).

  • Breathing Techniques such as 4-7-8 breath - for calming your ANS.

  • Also see our Mental Wellbeing section for relaxation therapies.

Further Reading

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