Ms Anna-Karin Ulpe:

The Irish Wheelchair Association was unable to provide any assistance. I was told that if the issue was that wheelchair would be a fire hazard it could not help. Some time later, we were issued with a notice of termination because the landlord wanted to sell. I do not have any family in Ireland and we had nowhere to go. We were facing homelessness at a time when I was completely bed-bound and could not even put my underwear in a bag. Were it not for our lovely neighbours, we would not have been able to move. They moved everything for us. My partner was still formally employed at this point and we were able to secure a new contract for the place we live in now. We were lucky in that nobody asked us for a P60. If that had happened, we would have been screwed and homeless. This type of stress makes my condition much worse. It should not happen. That is my comment in regard to private renting.

On the list of disabled persons, my concern is who would administer it? My GP refused to put me on the list of vulnerable persons, which I had asked him to do in order that I could get the Covid jab earlier. My GP said that because I was not immunocompromised, I was not at increased risk of getting sick. To be honest, I could not see myself surviving Covid. I already have so little energy that I feel like I am dying, so I would not even have the energy to cough. Covid would finish me off, definitely, but that is not recognised. If we could self-report, we could then, at least, put up our hands and say how many people fulfil the international consensus criteria for ME. The HSE would have to decide the international criteria for diagnosis it would want to use, because there is, as yet, no diagnostic test. The international consensus criteria would be a good idea. If we had self-reporting, this register would provide us with a fairly accurate picture of how many people are suffering. In terms of statistics, it is estimated that 70% of ME sufferers are unable to work.