There is no known cure for ME/CFS but there is still a lot that can be done to improve your well-being and give you the best chance of making significant improvements by treating the symptoms you are experiencing.
We want to share what works for our members and over time we will link to various member articles on specific points on this list. What we have found is that once many of us are given a diagnosis that is about it, we do not always get help dealing with the symptoms or common co-morbidies for ME/CFS.
This is a list of common co-morbidities that do not exclude an ME/CFS diagnosis. Where there is a hyperlink it will be to an article on this website about the condition.
Co-morbid conditions which do not exclude ME/CFS diagnosis.
| Fibromyalgia Restless legs syndrome, Periodic limb disorder Postural orthostatic tachycardia syndrome (POTS) Neuro-mediated hypotension Irritable bowel syndrome Food intolerances and atopic conditions Mild anxiety Mild depression Eosinophilic esophagitis | Hypermobility Ehlers–Danlos syndrome Myofascial pain syndrome Small fibre neuropathy Sicca symptoms Chronic pelvic pain, Endometriosis Interstitial cystitis Hashimoto thyroiditis; Hypothyroidism controlled clinically) Migraine Mast cell activation disorder, |
This is taken from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8161074/#medicina-57-00510-box006 The European Network on ME/CFS: Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe
There are some other common comorbidities such as Multiple Chemical Sensitivity disorder. Some of these co-morbidities are not always adequately explored by medical professionals once a diagnosis of ME/CFS is given. If you think you have other issues that are impacting your health it is well worth holding your ground and seeing that they get due consideration. Unfortunately this can mean doing your own research and challenging medical professionals if needed so that you are listened to and given the right medical advice.
Common symptoms of ME/CFS
| Orthostatic Intolerance | This just means problems sitting or standing up that are elevated by lying down. There are some specific medical conditions and syndromes involving this such as PoTS but not everyone with ME/CFS who has problems in this area fits neatly into one of the diagnosable groupings. This is something that can be treated with medication, salt and water intake, compression socks and exercises. See our article for more information. |
| Multiple Chemical Sensitivities | Many people find that they develop chemical sensitivities or they get much more magnified since getting ME/CFS. Whilst there is no known treatment at the moment some experiments are being carried out in Australia with beta blockers. Consensus seems to be that identifying and then avoiding the chemicals that are causing the issues is helpful. There can be challenges with this for instance Ben our co-chair reacts to a lot of cleaning products so has to be very careful what he uses and it can cause problems when travelling. Other members have problems with some perfumes which is why we ask members not to wear perfumes if possible in face to face meets. |
| Brain fog and Memory Issues | Pacing and rest seem often to help. Some people report benefits from D-Ribose and some other supplements. Caffeine and other stimulants can assist in the short term but are also problematic because they can mask symptoms which in turn can lead to over-exertion. Adapting to life with brain fog is important. This can involve other people double checking letters and emails before they are sent out. It can involve setting timers and reminders so important things do not get forgotten. Many of our members can forget to turn ovens and hob rings off so well worth making sure you have a good fire alarm system as well as memory aids such as Egg timers and digital reminders to minimise the chances of this happening. Dosette boxes can help with making sure medication is taken in the right numbers at the right times. |
| Pain | Depending on the type and severity it may be worth a referral to a pain management clinic. Can also be treated by medication as well as assisted by physiotherapy, acupuncture, relaxation, meditation etc. |
| Sleep | Good sleep hygiene, relaxation strategies and medication can all help. It is worth speaking with your GP if there might be other underlying issues such as sleep apnoea. |
| Post Exertional Malaise or symptom exacerbation | For many people with ME/CFS this can be one of the biggest issues they experience and the symptoms can be almost everything on this list including headaches, brain fog, nausea and exhaustion. Minimising things that trigger PEM can really help as can rest and pacing. Help from specialist ME/CFS clinics can make a big difference here |
| Anti-allergic/anti-inflammatory and Food intolerances | Food intolerances are really common with ME/CFS. As well as some medications you might want to explore an IBS comorbitity with your GP and also look into this article on elimination and trial elimination diets. The later of which is recommended by EUROMENE. Sodium cromoglicate, Antihistamines, e.g., fexofenadine or famotidine are recommended in the EUROMENE article |
| Cognitive Dysfunction | Rest and pacing can reduce the degree of this but even with optimal condition management this can still be a major problem for many people with ME/CFS. Don’t be afraid to ask for help when needed and make sure you make adjustments and adaptations to your life to take account of the dysfunction. EUROMENE recommends some of these supplements for fatigue and cognitive dysfunction Iron (if ferritin < 50 ug/l, transferrin saturation <20%) Vitamin D, L-carnitine or acetyl-carnitine, CoQ-10 or MitoQ, NADH, Vitamin B12., α, lipoic acid, Magnesium, Omega-3 or omega-3/omega-6 combination, D-Ribose, Vitamin B1, B2, and/or B6 and Vitamin C. These are some of the ones that also members report more positively on. |
| Fatigue | Fatigue is a difficult word because it does not just mean tired. It is much more extreme and debilitating. People with ME/CFS can experience different types of fatigue and really we need a whole new lexicon to better express what we are experiencing. Rest and pacing can make a massive difference. Some of the supplements recommended under cognitive dysfunction might help although feedback is not so positive as we would either encourage people too strongly or set expectations of benefit too high |
| Nausea | Medication can sometimes help. Also nausea might suggest other issues that can be addressed such as orthostatic intolerance or food intolerances |
| Light Sensitivities | For Light sensitivity some people have found magnesium helps them as can wearing special glasses. One of our members found using different light bulbs in their home made a difference. |
| Sound Sensitivities | Reducing exposure to loud sounds or multiple sound sources can help as can using ear plugs and noise cancelling headphones |
Where specific medications or supplements are recommended these come from the EUROMENE article. We have many members who find supplements helpful but none so consistently help people that we would feel we could recommend them, particularly given our lack of expertise in this area.
Although these are some of the more common symptoms there are many other symptoms that people can sometimes have with their ME/CFS. It is always important though to consider whether a symptom is a part of your ME/CFS or something else. Often when you have an ME/CFS diagnosis it is easy for medical professionals to assume that an issue is caused by your ME/CFS as that can cause so many different problems that are hard to show on tests. It will not always be your ME/CFS though so it is better to explore it with your GP and other medical supports than suffer in silence for something that might be either very treatable or very serious if left unchecked.
We have found that we have gained much from sharing our experiences with each other both in terms of understanding what is going on with our bodies and also in seeing what other people have learned and what works for them.