Journal of IiME Volume 9 Issue 1 This is not an easy situation, because we cannot always give answers to things we are not certain of. But what we can do is educate ourselves by performing research, instead of ignoring the disease or giving false answers. Luckily, there are groups who try to solve the phenomena behind ME/CFS and funders like Invest in ME who play a really important role in this. I mention the words “education” and “research”, simply because it is an important area which has to be paid attention to! A lot of papers have been published in the last few years, something, which keeps fundraisers, patients and researchers positive. Although, it is still difficult to fully assess the implication or the interpretation of the findings related to ME/CFS (based on virology, immunology, psychology etc.). Due to the heterogeneity in the environment amongst other things, (which make comparisons between different groups of patients a problem) research is often difficult to reproduce. Another issue is the comparison of ‘healthy controls’ with ME/CFS Patients. Just like ME/CFS patients, healthy controls are also heterogeneous (as we all know everyone is different). The big difference between ME/CFS and other diseases is that in other diseases we have a clear symptom-based ‘biomarker’, for example, swollen joints, skin rashes etc. and also diagnostic markers in the blood (antibodies, a clear infection, inflammation etc.), which we can compare with a healthy, if heterogeneous, control group. This could also be a reason why results are not easily reproduced. Therefore, it could be possible to focus on the group of ME/CFS patients as a whole and see if we can compare different sub-groups within ME/CFS similarly to how we want to compare healthy controls with May 2015 ME/CFS patients. I am not saying that we should ignore the results with healthy individuals; we should still use this as measurement for clear differences. Significance may thus not lie in the whole population (patients or even HC) but in a sub-group. Important findings so far describe abnormalities in the immune system and as a result this might affect the nervous system (fatigue and other symptoms), underlying the immune system as an important factor. Instead of thinking of the effect of the immune system on the nervous system, we could also think of an effect or functioning of the nervous system to restore the dysregulated immune homeostasis. It is really important to focus in different areas and systems, because that is where ME/CFS resides “in different areas”. The collaborative board initiated by Invest in ME, combines different groups from over the world in all these different areas. Extending and strengthening relationships and collaborations will bring us closer to answering those questions we and especially the patients want the answer to. ME PATIENT “I've had M.E. for six years now, and it’s an ongoing daily struggle. Not just because it sucks being ill 24 hours a day and having no quality of life but because there is no treatment, minimal support and little medical understanding of this illness. Invest in M.E. are a charity trying to change this.” - Leanne from IiME’s JustGiving pages https://www.justgiving.com/investinm-e/ Invest in ME (Charity Nr. 1114035) www.investinme.org Page 23 of 57
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