A new Danish study shows that ME patients have among the greatest levels of disability when compared to other common diseases:
[pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]ME/CFS has the lowest health-related quality of life score when compared to cancer, diabetes, lupus, stroke, heart disease and chronic renal failure.[/pullquote]
The study surveyed 105 patients. 27% of ME patients surveyed live with severe pain everyday. Only 4% of the general population is afflicted with severe pain and 20% with moderate pain.
The EQ-5D-3L is one of the more prominent scales that are used to measure quality of life. It ranges from -0.624 to 1.000 (1 being the best and -0.624 being the worst).
ME scores as -0.29 making it approximately 15 times worse than cancer and two times worse than having a stroke.
[button_color url=”http://paperity.org/p/73597499/the-health-related-quality-of-life-for-patients-with-myalgic-encephalomyelitis-chronic” content=”Read the full study” target=”]
Why We Keep Telling the Story of ME to the Press
June 6, 2023
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Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the
3 thoughts on “ME patients have among the poorest quality of life”
Pity government assessors for benefits dont recognise our pain and limitations….
Please consider joining active with invisible illness on Facebook for an up date on the progress of forming a group to join and help all people with invisible illnesses. The websites will be aii2.co and onekindvoice.com for support help and action. Uniting all victims of any invisible illness to get each recognised, supporting each other and empowering people to help improve their quality of life.
What makes it worse for me is that even my friends, families and associates ignore my illness. They never ask how I am. It almost seems a matter of principle. Yet I am exhausted 80% of the time and the same amount of time with significant pain. It’s hard to comprehend the complete lack of interest / concern by others . Occasionally I have even had aggression “oh we’re all tired”!. My GP practice is overwhelmed and has nothing to offer so I do t bother going anymore. Treatment is only painkillers (which didn’t work for me anyway) or “pretend treatment” CBT which is completely pointless for an intelligent me/cfs patient. So tough sometimes. Sending ❤️ and hugs to all those out there currently struggling.
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