Journal of IiME Volume 9 Issue 1 ME/CFS is a serious multi-system neuroimmune disorder that it becomes intellectually embarrassing for anyone to continue to consider it to be a behavioural disorder. Recent research from the US posits that true ME (as distinct from ubiquitous chronic “fatigue”) is an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases that is consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity….Profiles of ME/CFS subjects also differed from those of MS subjects, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation as compared with those with MS” (M. Hornig et al; Molecular Psychiatry 31st 2015: doi:10.1038/mp.2015.29). March Dr Oystein Fluge and Professor Olav Mella from Haukeland, Norway, have conducted several studies of the cancer drug rituximab (a monoclonal antibody that targets and destroys the body’s B cells, which recover once treatment ceases) on ME/CFS patients. Their theory is that ME/CFS is a variant of an autoimmune disease that affects the body’s ability to control blood flow. World-class experts like Fluge and Mella would not use anti-cancer drugs like methotrexate, cyclophosphamide and rituximab, all of which carry a black box warning, if they believed ME/CFS to be a behavioural disorder; the difference between Fluge and Mella and the “behavioural” psychiatrists is that the former actually listen to their patients whilst the latter prefer to impose their own beliefs and control their patients’ behaviour. The above are merely illustrations of some of the many important biomedical research findings published on ME/CFS in the last ten years. After almost 30 years of UK health care providers’ dismissal and mistreatment patients with ME/CFS are aware that finally, a paradigm shift is occurring and the psychiatrists’ May 2015 stranglehold over their disease is being loosened. That this is so is thanks to charities like Invest in ME who, quietly but resolutely, have done so much to bring about that paradigm change. During the next ten years, it is likely that the link between the immune defects found in ME/CFS and an infectious or environmental trigger will be discovered and, without doubt, ME/CFS will be added to the long list of organic disorders (including epilepsy, myasthenia gravis, MS, diabetes, migraine, pernicious anaemia, ulcerative colitis, gastric ulcer and Parkinsons) which psychiatrists forcefully asserted were psychogenic until medical science proved otherwise. ME PATIENT “A fellow member of the Let's Do It For ME fundraising team for IIME has written this on my behalf as I am too ill to do it myself. I have very severe ME. I got ME at the age of 8. I am now 23. Like some other serious illnesses, ME can fluctuate in severity. You can see from the photos in the picture gallery that whenever well enough, I was out being involved and enjoying life to the best of my ability. My health took a bad turn for the worse in 2012. I went into hospital and then to a nursing home, fed by naso-jejunum tube. The staff helped me and my family to celebrate my 21st birthday there by raising awareness and funds for Invest in ME to help them set up a UK centre of excellence for research and hopefully treatment. People like me with ME desperately need this. I am being cared for at home now and can listen to audio books for about 15 minutes in the morning and cuddle my guinea pig in the evening. That is all the daily activity I can do with my current level of illness severity. I am asking you to sponsor me to listen to audio books. Thank you for helping me to help IIME.” Rosa from IiME’s JustGiving pages https://www.justgiving.com/investinm-e/ Invest in ME (Charity Nr. 1114035) www.investinme.org Page 21 of 57
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