From InterAction 113, published April 2023
This alternative approach is one where chronic health issues are assessed holistically, and treatments individually tailored. Sally Ulph looks at nutritional therapy in relation to ME.
People with ME can benefit from dietary changes, but it’s hard to know what changes you could make by yourself. The internet is rife with confusing information, and diet books may be contradictory, or extreme and restrictive. Seeing a qualified nutritional therapist may be helpful for some. They offer support in developing a personalised nutrition and lifestyle plan, based upon your unique story, and the theory that ME is “the manifestation of a complex state of physiological dysfunction unique to the individual” (Brown, B. 2014. CFS: a personalized integrative medicine approach.
Nutritional therapy is much more than making dietary changes, although that’s important. An experienced nutritional therapist will often use a functional medicine approach combining naturopathy, personalised nutrition, lifestyle interventions and functional medicine testing. Chronic health issues are assessed holistically, seeking underlying causes and tailoring treatments to rebalance dysfunctional biological systems.
Nutritional therapy is unlike any other complementary therapy. Clients are not passive recipients, but are active co-creators of positive health changes, following collaborative protocols. Practitioners who understand ME will be better able to form appropriately paced protocols. Protocols must consider available energy to self-care, cook, shop, plus limits to exercise, sensitivities to foods, supplements, chemicals, noise, light and cognitive issues.
An experienced nutritional therapist would usually do a longer first appointment, often requesting that you complete a pre-appointment questionnaire and a three-day food diary. These form part of the detective work; helping an nutritional therapist to find underlying causes alongside any test results you may have from your GP, or any functional medicine testing that you might choose to opt for (which is not available on the NHS).
Three key areas of your unique health history are analysed as part of the functional medicine matrix.
1. Family history and genetics, such as:
2. Triggering events, such as:
3. Perpetuating factors such as:
There are multiple body system imbalances in ME. It’s a complex jigsaw puzzle of potential causes which can be different for each person and can change over time, so perpetuating ME symptoms (for more on this see Healthpath, 2022. The many causes Of CFS with Alex Manos).
There is a paucity of peer reviewed research assessing the effectiveness of nutritional therapy as a personalised, holistic approach to the health of the individual with ME. Practitioners may not be treating “ME” as there is no one single set of laboratory values unique to M.E. that could be treated. Instead, an individuals’ nutritional and metabolic imbalances, toxicities and microbial infections would be specifically assessed and supported (Lord & Bralley, 2012).
Piecemeal studies looking at individual interventions that nutritional therapy might suggest have found improvement in symptoms; for example, co-enzyme q10/NADH, multivitamin/mineral supplements and nasal vitamin B12 (Castro-Marrero et al, 2021; Maric et al, 2014; van Campen et al, 2019).
Review studies suggest that the evidence is limited by methodological limitations, such as study size, excluding severe patients, observational design, and confounding factors (Joustra et al, 2017). Some reviews hence conclude only minor benefit (Bjørklund et al, 2019) or mixed results, showing benefit of some individual nutrients, but not consensus on nutrients or specific diets for people with ME (Campagnolo et al, 2017) – but “a lack of research is not the same as research demonstrating something is ineffective” (Howard & Arroll, 2011).
Rather than research focussing upon a nutritional intervention and its impact upon people with ME, research looking at bespoke programmes of nutrition and lifestyle medicine, and how they best support induvial needs of people with ME could provide a better understanding of nutritional therapy’s effectiveness. A pilot study for a similar approach showed improvements in ability and symptoms within a three-month period (Arroll & Howard, 2012).
It’s well evidenced that many people with ME are at increased risk of drug reactions and that sensitivity can extend to nutritional supplements as well, especially for people with more severe ME. Potential harms could arise with inexperienced or unqualified practitioners, lacking understanding of energy limitations, complexity or the sensitivity of people with ME.
Such risks can be minimised by carefully choosing a practitioner; checking credentials, testimonials, and talking to several practitioners before booking. A personalised nutritional therapy programme can be co-created with you in control of the pace and content; ideally it is a collaboration. This means that you only do something that you are comfortable with, and add in changes slowly, minimising potential harms.
Look at the evidence, and make sure you fully understand what any treatment involves. Here’s a summary of some pros and cons.
Pros
Cons
Seek out properly qualified practitioners as nutrition courses vary qualitatively in the UK. Ensure registration with British Association For Nutrition And Lifestyle Medicine and/or Complementary and Natural Healthcare Council. Additionally, the Institute for Functional Medicine in the US has a variety of practitioners including some doctors trained in functional medicine (see useful resources below).
You could ask in local or online ME support groups and forums for personal experiences of of practitioners who have supported people with ME (while this can be helpful in considering the options available to you, please remember that what works for one person with ME may not be useful for another).
Ask practitioners about their experience and understanding of ME. How might they adapt how they work if you have moderate or severe ME? Do they understand post-exertional malaise or any other key symptoms? Can they share any relevant testimonials or case studies? What Continuing Professional Development have they done?
For further guidance on what to ask practitioners to support informed decision-making, visit our complementary approaches page or call us for paper copies.
Useful resources
Nutritional therapist Angie Ash, BA(hons), PGCE, dipCNM, AFCMP from Wild Bare Nutrition shared this case study with us.
My female client, 48, presented with CFS and autoimmune thyroiditis; with brain fog and fatigue being key areas to improve. She’d had many other symptoms over three preceding years, and had to stop work.
She had a long history of IBS, and was on a vegetarian diet including dairy. Following toxin exposure at work, she’d had more than 25 rounds of antibiotics prescribed; also taking lots of self-chosen supplements and prescribed thyroid medication. She described work stress at symptom onset, and recognised childhood trauma.
I ran several functional tests including a comprehensive gut test and an organic acids test. Client had bacterial dysbiosis and overgrowth, yeast overgrowth, inflammation and a number of low levels of nutrients. Her iron levels would regularly seesaw between normal and high.
I wrote to her GP asking for the client to be referred for a pituitary scan (erratic raised TSH – thyroid stimulating hormone) and tested for hemochromatosis. The GP went on to diagnose genetic hemochromatosis after a positive blood test. We were unable to get a referral for a pituitary scan. I referred to a psychotherapist to deal with the past trauma, and we worked on lifestyle, supported detoxification, and addressed the bacterial and fungal gut imbalance.
I repeatedly got her into a good place where she’d start exercising again then fatigue and brain fog would rebound once she came off the herbal antimicrobials we were using to address the gut issues, even though follow up testing showed the gut issues were resolved. I tested for Lyme Disease and co-infections which came back indicating positive for Lyme Disease and a number of co-infections and a very compromised immune system as a result. I then tackled the Lyme disease using several supplements over six months. This exacerbated the client’s symptoms for a time, so we added further support for the fatigue and brain fog. The client’s follow up blood test indicated her immune system was no longer compromised by infection and for the first time it was actively producing antibodies against Lyme and the co-infections.
Over the past two months, she’s been flourishing – clear concentration, swimming twice a week, walking every day and, for the first time for years, enjoyed lots of varied birthday celebrations spanning a week! She still has some post-exertional malaise so we’re still revisiting pacing regularly, supporting recovery and overall health. We worked together over the course of three years to achieve these changes.
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