tag:blogger.com,1999:blog-107677426469524509.post8894754351446760618..comments2024-03-17T13:31:42.561+00:00Comments on ME Advocates Ireland (MEAI): ME Advocates Ireland’s Information PackM.E.A.I.http://www.blogger.com/profile/07540356800619882324noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-107677426469524509.post-76140269536152491512018-10-28T18:01:54.867+00:002018-10-28T18:01:54.867+00:00Thanks Greg, for your very valid comments. We will...Thanks Greg, for your very valid comments. We will take your suggestions on board, and make changes to the document.<br />The MEAI teamM.E.A.I.https://www.blogger.com/profile/07540356800619882324noreply@blogger.comtag:blogger.com,1999:blog-107677426469524509.post-70578942206856353072018-04-28T09:06:17.733+01:002018-04-28T09:06:17.733+01:00Thank you so much for this overview, it is an extr...Thank you so much for this overview, it is an extremely well written and informative summary. The situation in Ireland seems dire. Just a couple of observations, the daily reality of people with Severe ME is much worse than not having the “basic energy” to engage in daily tasks, while that of people with Very Severe ME is so horrendous, there just aren’t the words to describe how awful it is, the pain, the paralysis, the cognitive issues, the terrible hypersensitivities, the profound system dysfunction. Another issue is that PENE , Post Exertional Neuro-immune Exhaustion might be a more accurate, less loaded term than PEM. I don’t think you specifically call for the separation of ME from CFS, in your recommendations, neither do you call specifically for the withdrawal of psychiatry from front line involvement. That might be worth adding. What definitely needs adding, in my opinion, is the prefix “biomedical” to Recommendation 3, otherwise the door is still potentially left open to wrong psychosocial input. Thank you, once again, for producing this important document!Holy Wayhttps://www.blogger.com/profile/04396731322033939255noreply@blogger.com