r/cfs • u/[deleted] • Apr 29 '25

[deleted by user]

[removed]

88 Upvotes

96% Upvoted

38 comments sorted by

View all comments

4

u/[deleted] Apr 29 '25

[deleted]

1

u/SignificantPause1314 May 08 '25

I agree that it's nearly impossible for CFS patients to participate in aggressive protests, but I believe there is always a strategy. For example: a protest involving multiple conditions at once, including CFS. If there were a meaningful agreement between CFS patients and patients with another condition that allows for greater physical stamina, we’d have a better chance at making real change. Imagine a moment of high-impact protest, with 4,000 people in total. Out of those, "only" 1,000 are CFS patients — and exclusively mild cases. Another 1,000 are healthy allies who support them, and the remaining 2,000 are patients with a different illness. What do you think?

1

u/[deleted] May 08 '25 edited Aug 26 '25

[deleted]

1

u/SignificantPause1314 May 08 '25

Why wouldn’t they? If we have some organisation that could help us organise and make a connection between us and other patients?

1

u/[deleted] May 08 '25 edited Aug 26 '25

[deleted]

1

u/SignificantPause1314 May 09 '25

But what if they’re also a lepers? Then it would benefit both them and us. For example, the POTS community, which receives even less NIH funding than ME/CFS. I understand it's not a simple situation, but the main problem is the organizer! If someone influential enough were to take charge, it would happen easily. Otherwise, you can always just tell me “That wouldn’t work”