Something I was thinking about, as someone with Aspergers diagnosis from before I got M.E. And was wondering if there is any way to bring this up in the meetings. Re the sensitivity to noise and light and stimulation, I think arguably this is one of the most distressing and terrible things about severe M.E and is one that is hardly mentioned anywhere, or even mentioned in the guidelines in the context of how to help people and what not to do, and because of that, so much harm is caused. For example, I have a diagnosis of Aspergers with sensory processing difficulties. Because of this, I’ve had issues with light and noise when I was younger, long before I got M.E (however I wasn’t diagnosed when young, despite having life long difficulties with social situations etc). the light noise stimulation sensitivities (including difficulties in crowds, looking at movement), are very well known in autism- to the point we are often advised to get noise cancelling earphones, eye masks; avoid situations etc, we have autism passports so that when we go into hospitals doctors are aware of our sensitivities, can request individual hospital rooms, it’s written everywhere on my occupational therapist report and so on, and rightly so. But quite honestly the level of sensitivity I had with autism, is 1/100th the level I am experiencing now with severe M.E. yet it’s as if it doesn’t exist, because no one in a position of authority seems to be aware of it. it is the sensitivity that stops us from going into hospital and travelling, as we cannot tolerate the stimulation and we become so dizzy and unwell and distressed - because no one in the hospital seems to be aware of our situation and so will not do anything to reduce stimulation. It is not the fatigue alone - because if it was, we would be able to just go into hospital in wheelchairs and lying down, with no problem. It is the light/noise and stimulation sensitivity that makes basically every single situation extremely distressing and makes us unwell. It’s what stops us from accessing care, as care workers aren’t trained or understanding about the level of sensitivity (yet they do know about autism). It’s what stops us from having visitors. it isn’t really talked about in the context of light/noise/stimulation sensitivity and M.E, and I think this is a huge problem. as we saw with Gigi, having had her eye masks and ear defenders taken away. Is this being talked about in the committee? as someone with two conditions that can cause light/noise sensitivity, but with huge differences in how the sensitivities are treated in both conditions. I find it very hard to understand how and why our severe sensitivities in M.E, which make us unbearably ill, and put us in dire situations are not taken much more seriously and guidelines do not include how others in positions of authority can and should support us.