Hi, I thought I would start a thread about symptoms and treatment management, as I heard that will be being discussed by the NICE guidelines in September. So we can all put our ideas below for people to use for their research! I haven’t had a full chance to look through and think about all symptoms and treatment yet so I’ll post again later again, but for now. in my lived experiences as well as what I’ve seen in countless other patient experiences: Symptoms -severe sensory hyper-sensitivity. Over-stimulation can bring on an increase in other M.E symptoms, pain, as well as an increase in the sensory sensitivity itself, and make patients very unwell. Light, noise, touch, taste, smell. Perhaps specifically light and noise sensitivity being most severe and perhaps most painful and distressing to us - because even if people don’t touch us, light and noise are impossible to ignore especially hospital environments which can make us more ill and it is creating a serious accessibility issue. (See other thread in this forum). I think it would be even more helpful to have in the symptom guidelines that this sensitivity can often worsen with the severity of the illness, and can occur in all categories of M.E, from mild M.E to severe, with those with severe and very severe M.E sometimes being unable to tolerate any sensory information at all. Treatment management In the case of sensitivity: An emphasis on preventing distress and harm. An emphasis on reducing sensory input if the individual needs that To listen to individuals lived experiences Keeping us comfortable by whatever means are possible. - dark glasses may be needed to reduce light input - eye masks - earphones / headphones with noise cancelling technologies or other types of headphones can be recommended - listening to patients lived experiences: if a patient says they cannot tolerate something, the cannot tolerate something. Ignoring their wishes can and will cause significant harm. -low stimulation environments - an occupational therapist specialising in sensory processing can be recommended The 25% Severe M.E charity has some great factsheets on listening to the patient if anyone wants info. An emphasis that ignoring sensitivities can and does cause high levels of pain, distress as well as serious worsening of symptoms and harm and that all professionals dealing with said patient need to be aware of this. We do not have empirical evidence on sensory sensitivity as there is currently no way to test for that. Are people with autism tested for that? No. Yet I was just asked in my assessment about it, I told her my lived experiences, that was it. We have no info on sensory sensitivities in M.E precisely because there is a lack of anyone listening to our lived experiences. In the meantime though, we do have countless lived experiences and we live in our bodies and know what helps us and know that the only possible way of us being able to cope or to even gain some health is to reduce sensory input to whatever level we need it, at that particular time. By doing so, we may then feel able to cope with the next second and the next minute, and the next day and the next week and the next year, more than we would have before. I will have a think on other symptoms & treatment later esp in relation to severe M.E. Edit: please see https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#presentation for current NICE guidelines.