Despite the systemic problems, it's encouraging to see that more informed, compassionate health care is possible. If the few individuals given as examples can do this, then so can others. Basic training in the limitations of those with ME/LC for everyone working in health care settings would already make a difference to patients' experiences.
This is so important! So many people with ME don’t access any care at all, until a problem becomes critical, because of all the issues described in this article.
When #pwME haven’t had the energy to wash or dress regularly for years, no-one understands their condition, blood tests don’t discover what is wrong & there is no treatment - it’s not surprising they avoid healthcare.
Unfortunately, this perpetuates the lack of awareness.
Thanks to #ThereforME and their supporters this is slowly beginning to change 🙏💙🫂
"This is a patient safety concern as often patients are not getting the appointments, tests and screening they should, not only for their ME or Long Covid symptoms."
No, they're not, because apart from the already instilled medical ignorance regarding ME, we are now getting campaigns conflating ME with LC, so nobody is getting the illness-specific tests and screening they require.
Despite the systemic problems, it's encouraging to see that more informed, compassionate health care is possible. If the few individuals given as examples can do this, then so can others. Basic training in the limitations of those with ME/LC for everyone working in health care settings would already make a difference to patients' experiences.
This is so important! So many people with ME don’t access any care at all, until a problem becomes critical, because of all the issues described in this article.
When #pwME haven’t had the energy to wash or dress regularly for years, no-one understands their condition, blood tests don’t discover what is wrong & there is no treatment - it’s not surprising they avoid healthcare.
Unfortunately, this perpetuates the lack of awareness.
Thanks to #ThereforME and their supporters this is slowly beginning to change 🙏💙🫂
"This is a patient safety concern as often patients are not getting the appointments, tests and screening they should, not only for their ME or Long Covid symptoms."
No, they're not, because apart from the already instilled medical ignorance regarding ME, we are now getting campaigns conflating ME with LC, so nobody is getting the illness-specific tests and screening they require.