Reposted by Niko Suvisto
#pwME high time there was mandatory education on #ME/CFS for all patient facing NHS staff.
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Niko Suvisto
@nikosuvisto.com
1.1K followers 623 following 1.1K posts
Life on hold by severe #MECFS, currently 99% bedbound 🛌 Documenting my life like it is now, advocacy through photography 📷 📍Finland nikosuvisto.com
!["Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME."
[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)
[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724
[3] Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., Levin, B. (2018). https://doi.org/10.1186/s40359-018-0218-3
[4] Valerie Eliot Smith (2015) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/
[5] Brighton Coroners Court, 13 June 2006
[6] Rochdale Coroners Court, 19 May 2018](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:z2al2flt26qu3kzv3pmzqt54/bafkreieyduxbcyyl34cddprcktgvwuh3brqfjd4rcycd4c6gvfon26lbsa)
