There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it again. For now, I hibernate with the rest of you…

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I need to speak to a disgusting and ignorant post by someone on X/Twitter...No one with ME/CFS or Long Covid should EVER feel embarrassed by how they look or how they have to live their life, and no one with ME/CFS or Long Covid should EVER feel like they need to hide what they look like or what their life is like from the public.

Fundraiser Link: http://spot.fund/FindACureForMEcfs

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Hi everyone, I’m doing another fundraiser for Ronald W. Davis PhD.’s ME/CFS research for my 41st birthday!

http://spot.fund/FindACureForMEcfs

…Since 2020 we have raised $184,000 for Ron’s research solely from my birthday fundraisers! This is incredible and only possible because of all of you…Let’s all come together and get Ron the supplies he needs to do these critical experiments that are honing in closer and closer to the root cause of ME/CFS!

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It says a lot about the unique and widely misunderstood challenges that ME/CFS and Long Covid patients face that there could not be an ME/CFS Olympics. Because if we tried to compete and push the physical limits of our bodies like that, all the winners would simply be dead…

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No one ever sees the world of color that lives inside of me because the black void doesn’t let it out. I feel it, smell it, taste it. I exist there in every moment of my life. But the only thing anyone ever sees are the bits of dust of a broken down machine…When the world of color and light shines, this second world coughs and flounders and lays down a blanket of death…

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Getting through bad days with ME/CFS, Long Covid, chronic illness, or disability.

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A Severe ME/CFS Patient in the UK named Karen Gordon went to the Conquest Hospital Hastings when her Jtube broke in hopes of getting a new one installed. Instead, the hospital has refused to give her a new Jtube or let her go home with Total Parenteral Nutrition (TPN), holding her hostage at the hospital for months. They have now given her an ultimatum that she must decide within 48 hours between being sent 100 miles to the St Mark’s Hospital in London to be re assessed for GI issues by Doctors who know nothing about ME/CFS and do not follow the NICE guidelines and therefore will not give her a Jtube. Or they will discharge her with no TPN to starve to death at home. Either option will kill her. This letter is an urgent attempt to make the hospital aware that they will kill her so they will change course and send Karen home with a PEG/Jtube or TPN so she can live.

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It is a travesty that Maeve did not receive nutrition like I received. I was just as sick as Maeve with very similar symptoms, including sensitivity to stimuli like light, sounds, voices and the company of other people in my room and like Maeve, I could not eat enough food to survive. If I was treated the way Maeve was treated, I would be dead just like Maeve. Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and who understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve. Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.

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