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The original was posted on /r/cfs by /u/DrEliano on 2024-09-20 17:50:59+00:00.

TLDR : Making a change/Doing your part by donating to research or writing letters in a crowded action to companies and celebrities.

Just thinking about what we could achieve. Im donating 10 euros a month to the Charite Fatigue Centrum regarding ME/CFS. And 10 euros a month to the Open Medicine Foundation.

As im in a crash right now, i thought abut how we can end ME/CFS. And it came to my mind, that if every patient and maybe even friends/spouse/family would donate 1-10 Euros (or Dollars for my fellow americans ;)) to a dedicated ME/CFS research group, we could achieve so much. As awareness is here, ME/CFS and Long Covid have the Spotlight right now. But it misses money to get more studies done.

I just made the simple calculation. Regarding google there are estimated “17-24 million” ME/CFS patients worldwide. Even if 100 Thousand of them could donate 10 euros/dollars a month to research groups. We could achieve Millions per Month for research. Just imagine how many more studies could be done.

As of right now, i need to recover first. But Im thinking about starting to spread awareness on all forums and self help groups worldwide, to donate a few dollars/euros a month to ME/CFS research. My estimate is that if we could do that we could accelerate research by 1-2 Years.

Im also thinking about writing letters in a huge mass to companies and celebrities to raise awareness. Just imagine a company receiving 20-50.000 letters about a disease and just asking for them to atleast show awareness. This could be huge. So far its all in my head and written down.

First of all im telling my fam and friends and girlfriend about it. But we need research done. We can achieve so much as of right now. The important part is set, awareness and recognition of this disease is there. Now it misses investments. And yes we can wait for big pharma to join in, but everyone of us suffering from this or having someone they know suffering from this disease, can take his part in clearing this disease.

Alright, have to rest now. Love you all <3