Chronic Fatigue Syndrome (CFS)

12 Mar 2017.

Note: Chronic Fatigue Syndrome is a chronic health issue, rather than a menstrual cycle-related symptom, but we include it because its symptoms can worsen at certain times in the menstrual cycle, or in response to hormonal medication(s), pregnancy, or menopause.

Chronic Fatigue Syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest. CFS is also known as ME, which stands for myalgic encephalomyelitis [1].

CFS/ ME is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time. Anyone can get the condition, although it’s more common in females than males.

It’s not known exactly what causes CFS/ ME. Various theories have been suggested, including:

  • a viral or bacterial infection
  • chronic inflamation/ immune system response
  • an imbalance of hormones
  • external factors, such as stress and emotional trauma

Some people are thought to be more susceptible to the condition because of their genes, as the condition is more common in some families. More research is needed to confirm exactly what causes the condition [1].

CFS/ ME involves multiple (potentially hormone-related) symptoms [1]: Anxiety,  bloating, constipation, diarrhoeadifficulty concentrating, poor temperature control, fatigue, headache, irritability, migraine, low mood/ self-esteem, muscle and joint pain,  nausea/vomiting, painful lymph nodes, sensitivity to light/ loud noise, sore throat, and sleeping problems.


Notes: Chronic Fatigue syndrome/ ME can sometimes be hormone-related (i.e. worsening at certain times in the menstrual cycle, or in response to hormonal medication, pregnancy, or menopause etc.). Track symptoms over time, and/ or change or stop hormonal medication (under medical supervision), to determine if this is an issue for you.

If your symptoms are perhaps affected by your hormonal medication, we suggest that you discuss your options with a doctor. The following steps may reduce symptom severity, but are unlikely to be able to stop them completely whilst you remain on the same medication.


If you identify a hormonal factor in your CFS/ ME symptoms, the good news is that some of your symptoms may respond well to the four steps outlined on our ‘all symptoms‘ page, whether or not these hormones are the main cause of your condition.

Note: Unfortunately, there is insufficient evidence for the use of nutritional supplements and modified diets in respect to relieving CFS/ ME symptoms [2]. However, case studies derived from research with accredited dietitians provide additional evidence of nutritional benefits to specific cases of CFS/ ME [3]. For example, case studies suggest that if other conditions (e.g. Irritable Bowel Syndrome (IBS), or Fibromyalgia (FMS)) are present, then appropriate dietary changes can also significantly reduce the symptoms of CFS/ ME, too [3].  So, if you have CFS/ ME and decide to try any hormone-balancing dietary suggestions, please let us know how you get on…

Try a hormone-balancing diet– As outlined in this blog, a vegetable-based ‘anti-inflammatory’ diet can significantly improve all hormone-related symptoms. People with CFS/ME are also advised to eat just such a diet, to ensure an adequate nutrient intake, reduce inflammation, and to reach and maintain a healthy body weight [4]. We highlight a few of the key dietary steps that are relevant for those suffering from hormone-related CFS/ ME, below;

– Try nutritional supplements? People with CFS/ ME are more likely to be deficient in a range of nutrients- especially vitamin B complex (B2, B9, B12), vitamin D, vitamin E, magnesium, and zinc [5- 9]. Small studies (although limited) have found that supplementation in some of these key nutrients can alleviate some of the symptoms of CFS/ ME; e.g. Vitamin B9 and B12 [10]; and Magnesium [11].

The ME Association’s ‘Purple booklet‘ (about clinical issues associated with CFS/ ME) also mentions that iron supplementation could perhaps help alleviate the symptoms of CFS/ ME, even though there is no known link between iron deficiency and CFS/ ME [12]. Research in this area is insufficient to recommend taking supplements to alleviate the symptoms of CFS/ ME- but, it is known that these same nutritional elements can improve hormone-related symptoms- so supplements (not exceeding RDA- Recommended Daily Allowance- levels) might be worth trying if you do notice a hormonal factor in your symptoms?

TOP TIP! If you have CFS/ ME, it is important to eat regularly, and to include slow-release starchy foods in meals and snacks. This helps manage common symptoms, especially fatigue and nausea [12].


Note: Exercise as a treatment for people living with CFS/ ME is a highly controversial topic! We include both sides of the debate here- this is a matter to be discussed in full between patients and their doctors.

1. Current clinical advice:  The NHS [1] and NICE (National Institute of Clinical Excellence) [13] recommend a structured exercise programme- called Graded Exercise Therapy (GET)- for people with CFS/ ME. It basically means that a person gradually increases how long they can carry out a physical activity- in consultation with an expert physical therapist.

According to a review of clinical evidence on this topic, “people with CFS/ ME may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes [14]. A positive effect with respect to sleep, physical function and self-perceived general health has been observed” [14].

GET should be delivered only by a suitably trained therapist with experience in CFS/ ME, under appropriate clinical supervision. So, if you do identify a cyclical pattern, or other hormonal link, in triggering, or worsening your CFS/ME symptoms, make sure to let your therapist know, as this may affect your GET plan.

2. Contradictory advice: The ME Association – a leading UK charity and research organisation that provides information, support and practical advice for people, families and carers affected by ME/ CFS- does not agree that Graded Exercise Therapy is always an effective treatment for CFS, and especially that there is ‘no evidence’ to suggest that GET may worsen symptoms. They have significant qualitative evidence (in the form of patient feedback from over 1400 people with CFS/ ME  [12]) to show that GET can push people to exercise beyond their means, so that they later pay the price with a severe worsening of their symptoms.

This contradictory evidence makes it difficult to know what to recommend- other than to discuss a range of treatment options with your doctor, and to track your symptoms over time, to notice how any exercise (as well as other potential triggers) might affect your health and wellbeing- both immediately after, and over the following few days.

TOP TIP! Good sleep management can improve CFS/ ME symptoms in some people. If you experience any of the common changes in sleep patterns seen in CFS, such as insomnia, hypersomnia, sleep reversal, altered sleep–wake cycle and non-refreshing sleep, take a look at these tips on ‘good sleep hygiene’ [15].


Cognitive behavioural therapy (CBT) is highly recommended for people with CFS/ ME: Although it might not cure the physical symptoms, it can help people to better cope with them [13]. In fact, CBT is considered to be the best ‘value for money’ treatment for CFS/ ME (when compared to GET, pacing, and specialist medical care), in terms of health outcomes in relation to healthcare costs [16].

Some people are resistant to the suggestion that CBT can help alleviate the physical symptoms of CFS/ ME, but there is plenty of clinical research to show that CBT approaches can reduce stress hormone levels, as well as inflammation [17] [18], which is why we highly recommend CBT for all hormone-related health issues, including hormone-influenced CFS/ ME.

As with any chronic health condition, it is all too easy to feel depressed and to develop low self-esteem if suffering from CFS/ ME. Since this can have a knock-on effect on all other hormonal symptoms, we recommend the following OCTC (Oxford Cognitive Therapy Centre) booklets; ‘Building Self-esteem‘ and ‘Understanding Health Anxiety‘.


Rest and relaxation is a component of all management strategies for CFS/ ME. Rest periods up to 30 minutes at a time should be integrated into an individual’s daily routine, taking into account their abilities, and symptoms [12] [13].

Relaxation techniques can help people with CFS/ ME manage pain, sleep problems, stress, or anxiety. There are a number of different relaxation techniques (such as mindfulness or breathing techniques) that can be incorporated into rest periods.

Contact support groups– they can give you advice on how to cope with CFS/ ME. They’re also a good way to meet other people with similar experiences. Support groups can often arrange face-to-face meetings, where you can talk about your difficulties and problems with other people. Ask your doctor about local CFS/ ME support groups, or search the ME Association database to find information and support services near you.


If you have tried the suggested tips and tricks for at least 3 months, and your symptoms do not improve, please consult your doctor.

Make sure to tell your doctor about any potential hormonal factor in your symptoms. They can then consider different treatment options.

If you have any suggestions, or tips, for managing hormone-influenced CFS/ME- please let us know– we can share them with others!


Further information:


Page last reviewed and updated: June 2018


References:

  1. NHS. (2015) Chronic fatigue syndrome. [ONLINE] Available at: http://www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx. [Accessed 13 April 2017]
  2. Carruthers B, Van de Sande M, De Meirleir Ket al. (2012) Myalgic encephalomyelitis – adult & paediatric: international consensus primer for medical practitioners.
  3. Campagnolo N., Johnston S., Collatz A., Staines D., & Marshall-Gradisnik S. (2017) Dietary and nutrition interventions for the therapeutic treatment of chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. J Hum Nutr Diet. doi: 10.1111/jhn.12435
  4. Morris DH, Stare FJ. (1993) ‘Unproven diet therapies in the treatment of the chronic fatigue syndrome’. Arch Fam Med. Feb;2(2):181-6. Review. PubMed PMID: 8275187
  5. Heap, L. C., Peters, T. J., & Wessely, S. (1999). Vitamin B status in patients with chronic fatigue syndrome. Journal of the Royal Society of Medicine, 92(4), 183–185.
  6. Berkovitz S, Ambler G, Jenkins M, Thurgood S. (2009) Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey. Int J Vitam Nutr Res. Jul;79(4):250-4. doi: 10.1024/0300-9831.79.4.250. PubMed PMID: 20209476
  7. Miwa K, Fujita M. Increased oxidative stress suggested by low serum vitamin E concentrations in patients with chronic fatigue syndrome. Int J Cardiol. 2009 Aug 14;136(2):238-9. doi: 10.1016/j.ijcard.2008.04.051. Epub 2008 Aug 6. PubMed PMID:
    18684522
  8. Cox IM, Campbell MJ, Dowson D. (1991) Red blood cell magnesium and chronic fatigue syndrome. Lancet. Mar 30;337(8744):757-60. PubMed PMID: 1672392
  9. Maes M, Mihaylova I, De Ruyter M. (2006) Lower serum zinc in Chronic Fatigue Syndrome (CFS): relationships to immune dysfunctions and relevance for the oxidative stress status in CFS. J Affect Disord. Feb;90(2-3):141-7.  PubMed PMID: 16338007
  10. Regland B, Forsmark S, Halaouate L, Matousek M, Peilot B, Zachrisson O, Gottfries CG. (2015) Response to vitamin B12 and folic acid in myalgic encephalomyelitis and fibromyalgia. PLoS One. Apr 22;10(4):e0124648. doi:10.1371/journal.pone.0124648. PubMed PMID: 25902009; PubMed Central PMCID: PMC4406448
  11. Manuel y Keenoy B, Moorkens G, Vertommen J, Noe M, Nève J, De Leeuw I. (2000) Magnesium status and parameters of the oxidant-antioxidant balance in patients with chronic fatigue: effects of supplementation with magnesium. J Am Coll Nutr.  Jun;19(3):374-82. PubMed PMID: 10872900
  12. Shepherd, C & Chaudhuri, A (2017) ME/CFS/PVFS: An Exploration of the Key Clinical Issues ME Association (the purple booklet)
  13. NICE. (2007) Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management guidelines CG53 . [ONLINE] Available at: https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#specialist-cfsme-care. [Accessed 13 April 2017].
  14. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. (2016) Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. Dec 20;12:CD003200. doi: 10.1002/14651858.CD003200.pub6. Review. PubMed PMID: 27995604
  15. UCLH NHS. (2015) Sleep hygiene (good sleep habits). [ONLINE] Available at: https://www.uclh.nhs.uk/PandV/PIL/Patient%20information%20leaflets/Sleep%20Hygiene%20Advice%20(Good%20sleep%20habits).pdf. [Accessed 13 April 2017]
  16. McCrone, P., Sharpe, M., Chalder, T., Knapp, M., Johnson, A. L., Goldsmith, K. A., & White, P. D. (2012). Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. PLoS ONE, 7(8), e40808. http://doi.org/10.1371/journal.pone.0040808
  17. Price JR, Mitchell E, Tidy E, Hunot V. (2008) Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews Issue 3. Art. No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2
  18. Pace, TWW, Negi, LT, Dodson-Lavelle, B, Ozawa-de Silva, B, Reddy, SD, Cole, SP, Danese, A, Craighead, LW & Raison, CL (2013) ‘Engagement with Cognitively-Based Compassion Training is associated with reduced salivary C-reactive protein from before to after training in foster care program adolescents’ Psychoneuroendocrinology, vol 38, no. 2, pp. 294-299., 10.1016/j.psyneuen.2012.05.019

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