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#EndMalnutritionInME – Severe ME Day 2023

August 8th marks an important day for the global ME (Myalgic Encephalomyelitis) community as we come together to observe Severe ME Day. This year, the focus is on #EndMalnutritionInME, shedding light on the often overlooked and challenging aspect of accessing appropriate dietary support for individuals battling severe ME.

Severe ME affects roughly 25% of people with ME. For those affected, seemingly simple tasks become insurmountable challenges, making daily life a constant struggle. One lesser-known but crucial issue that significantly impacts the lives of individuals with severe ME is malnutrition.

Malnutrition can occur in people with severe and very severe ME for a number of reasons. In people with very severe ME one of the major causes is sheer debility; the person is just too debilitated to eat and drink sufficiently. Other causes include difficulty swallowing and gastrointestinal problems.

The Battle Against Malnutrition: #EndMalnutritionInME serves as a rallying cry to address the distressing reality faced by some individuals with severe ME – the difficulty of accessing appropriate dietary support including tube feeding. At its worst, this has led to the death of some individuals.

To aid in spreading awareness about severe ME and #EndMalnutritionInME, our Alliance has created eight eye-catching graphics, each focussing on a different aspect of life that severe ME limits. These graphics are available for free download and use, and we encourage individuals, organisations, and communities to share their message and raise awareness on social media platforms and other channels on August 8th.

Ways You Can Make a Difference:

  1. Spread the Word: Share our graphics on your social media accounts, using the hashtags #EndMalnutritionInME and #SevereMEDay. Together, we can reach more people and raise awareness about the struggles faced by individuals with severe ME.
  2. Educate Others: Take the time to learn more about Severe ME and the challenges associated with accessing proper dietary support. Knowledge is a powerful tool in fostering empathy and understanding. Check out the 25% ME Group for more information.
  3. Support Local Initiatives: Many communities and organizations are actively working to improve the lives of ME patients. Get involved, volunteer, or donate to local initiatives that support those with severe ME.

Another global project focusing on severe ME will also be launched near to August 8th. Learn about #MEAction’s Severe ME Artist’s Project here. We can’t wait to share the final video and online gallery!

As we approach Severe ME Day on August 8th, let us join in recognition of the urgent issues facing peole with severe ME, and particularly the impact of malnutrition.