There are some trials and projects studying the use of telepresence robots for chronically ill children, including children with ME. I wonder whether these robots could be of use for adults too, for example for participating in projects discussed here (members only) : https://www.s4me.info/threads/how-c...h-advocacy-etc-be-made-easier-for-pwme.23070/ I tried to catch up with the "no isolation robots" (AV1) projects and research but unfortunately that seems to be more difficult than I thought. So for now will just leave some links to other threads and some recent publications here. Sorry that I'm not able ATM to post about that systematically.
Forum threads and other links: A) UK: Hospital and Outreach Education granted £500k to provide continued education to children absent from school due to long-term illness. Forum thread here. B) Older forum threads with links to media coverage: https://www.s4me.info/threads/teena...sformed-by-a-robot-that-helps-her-learn.4033/ https://www.s4me.info/threads/my-robot-makes-me-feel-like-i-havent-been-forgotten.5552/ C) Reviews / studies: Page, A., Charteris, J. & Berman, J. Telepresence Robot Use for Children with Chronic Illness in Australian Schools: A Scoping Review and Thematic Analysis. Int J of Soc Robotics 13, 1281–1293 (2021). https://doi.org/10.1007/s12369-020-00714-0 Forum thread here. Bryan G, Kelly P, Chesters H, Franklin J, Griffiths H, Langton L, Langton L, Wakefield CE, Gibson F. Access to and experience of education for children and adolescents with cancer: a scoping review protocol. Syst Rev. 2021 Jun 7;10(1):167. doi: 10.1186/s13643-021-01723-4. PMID: 34099059; PMCID: PMC8182947, https://pubmed.ncbi.nlm.nih.gov/34099059/ (No forum thread yet.) (...)
One of the reasons I started this thread: Even if I'm confident that some progress on the etiology or pathomechanism of ME or some of the symptoms will be made thanks to the DecodeME study and other research, I'm afraid that the development of a cure could take a long while. Other diseases that I think are better understood and taken seriously like ALS or Chorea Huntington are still without an effective treatment. There are also diseases for which effective treatments exist, but the treatment means often only an improvement or merely to slow down the illness process. It seems to me that there are still many illnesses that are chronic and accompanied by major disability in the long term. One of the things that perhaps we could have better access to now thanks to the new NICE guideline is aids that assist us with our disabilities? In addition to mobility aids that take into account PWME's orthostatic intolerance and muscle / motor fatigability, what do you think about telepresence robots? For those who struggle mainly with physical disability but less so with cognitive disability: Do you think robots could be helpful? And for people like me who struggle also with rapid cognitive fatigability, how could telepresence robots help us? For me it would be great to be able to: -- attend meetings even if only for a short time. -- contribute to conversations via typing text. -- give a signal when people are talking to fast. For longer meetings an automatic transcript would be great so that during a break I could have a look at what has been said and could contribute later via text. I realize that for others speaking or recording speech is easier than typing. I also realize that having a telepresence robot attending at a meeting will mean that the people who attend in presence will need to have a bit patience and also to tolerate technical glitches. So those meetings will consume a bit more time for including disabled participants. What do you think? How would you benefit from a telepresence robot? What features should the robot have to be of any help for you? (Edited for clarity -- apologies for still bad wording.)