Journal of IiMER Volume 13 Issue 1 Invest in ME Research also an impaired filtering function of the brain stem and a reduced threshold for neurones to fire off. This allows external stimuli such as movement, light, sounds, touch and sometimes even worrying thoughts to produce widespread neuronal activation with ultimate excitotoxic damage to these cells. The consequence is impaired activity of the brain generally but particularly the hypothalamus and prefrontal cortex leading to fatigue, disordered sleep, impaired memory, attention, faintness, palpitations, disordered respiration, temperature dysregulation etc. Outwardly, many patients appear well and routine blood and other investigations are normal. Internally there are severe symptoms that, if unchecked, escalate leading ultimately to immobility and increasing pain and spasms in a proportion of patients. Clearly a greater understanding of this highly disabling condition is required with a greater focus on disrupted immune and neural pathways and not just psychosocial factors as has previously been the case.” Sidsel Elisabeth Kreyberg carried out a small survey on Caring for seriously ill ME-patients that showed how important experience was in the work with ME. Severe ME patients have not often been included in research into the disease. This may be necessary on occasions, depending on the type of research or the logistics of accessing the patients in their delicate state. But IiMER has always stated that severely affected patients should not be excluded from research. Invest in ME Research are currently funding research into ME with severely affected patients being included. Diane - the carer/mother of severely affected daughter Lili, eloquently described her caring for her daughter and how her whole life was lived from her bed. Diane describes her GP "as an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out". Invest in ME Research (Charity Nr. 1153730) Attempts to change things resulted in a different GP being arranged - one who visited Lili but had seemingly already prejudged both carer and patient and who was very keen for Lili to do Graded Exercise Therapy (GET). This already horrendous situation for Lili and Diane turned ever darker when social services intervened amid doctors' allegations of abuse. In Dianes's story of Lili Diane writes – "The carer of an M.E. loved one is like no other carer. Not only is it imperative to learn about myalgic encephalomyelitis in order to give the specialist care required for M.E. (to avoid causing them further harm), it is also necessary to become their protector. This serious illness is very misunderstood, even by doctors. Society as a whole has a very misguided view of M.E. and so the carer has to do all they can to keep this harmful ignorant tribal thinking from entering the world of the M.E. sufferer. They need to protect their healing space from influences, opinions and 'treatment' that will cause disease progression and maybe even death. But who protects the carer? In some ways the carer is as vulnerable as their loved one." ".....the carer is as vulnerable as their loved one....." That says it all about ME And Lili? "Lili collapsed after her last hospital visit. She passed out with a seizure, her body violently shook, and paralysis spread throughout her body. It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down. She never recovered." investinme.org Page 32 of 52

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