@Gingergrrl
+1Your kindness, support, and presence on PR has helped me (I suspect others feel the same way too)
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
+1Your kindness, support, and presence on PR has helped me (I suspect others feel the same way too)
I think there IS a spiritual lesson here. Millions of very sick people (globally). Enduring things others do not even dream about. Despite illness, despite denigration and scepticism from many doctors and authority figures, we live on, persist, endure, and challenge the system to make things better for all of us. Sure, as a community we have almost no political influence, but we have not given up.
It's very hard to resist the idea that all people must justify their existence. I strongly believe that people have worth even if they are not able to contribute to society in some tangible way (working, volunteering, housework, or whatever way people try to contribute).
@ahimsa And yet I still find a lot of this feeling in myself (feeling really bad that I'm not contributing). I would call it internalized ableism.
Even those who cannot come online can contribute.
People appreciate your posts, I agree with @Groggy Doggy. Even if it does not seem to be much, if you are writing it then thousands might be thinking it or interested. Your comments can touch all of them. If you ask questions and get answers then others might find answers too. Every single one of us can enrich this community.
That's okay, because real Science will ultimately win, and Joe the Plumber will think twice before trusting BPS again.just look at how much effort the BPS people are putting into propaganda to turn the general public against us. They know the value of having Joe the Plumber for (or against) you.
It's only $18 to subscribe digitally to O for a year, so I plan to do this. It's easier for me to read on a laptop screen (vs. a magazine). Sadly, my friends and family already know more about ME/CFS than the average health care professional. I think we need to get the health care professionals to read the article; hopefully the 2.5 M readership includes some.I have never before purchased 'O'. This issue I most certainly will purchase, and assuming I find the piece suitable, will recommend my friends and family do the same.
Maybe I need to buy a copy and give it to my GP. It will probably have more effect than passing on a scientific article.I think we need to get the health care professionals to read the article; hopefully the 2.5 M readership includes some.
There's no guarantee of that, not by a long shot. Besides that, I want it to happen before I die. Yeah, 100 years from now people will probably be saying, "Wow, can you believe the abuse those patients suffered at the hands of those irrational BPS proponents? How did anyone even believe such nonsense?" In the meantime, billions of patients will have suffered untold abuse. I'm not willing to sit back and wait for that to happen in the long run, nor am I willing to bet the health and future of millions of people on the supposed inevitability of the collapse of propaganda.That's okay, because real Science will ultimately win, and Joe the Plumber will think twice before trusting BPS again.
@SOC I don't know of anyone on PR who is sitting back and waiting for things to happen. From the postings I've read, we are moving forward by sharing information, supporting each other, and trying differenct protocols. When PWME start recovering, I feel that things will change quickly. Yes, I am angry that we are (and have been) unfairly treated, misdiagnosed, and misjudged. And I feel the recent article in the UK is more of a last minute attempt to justify clinging onto the unscientific theory of treatment (that WE know can cause permament damage or death) and serves more as a rebuttal to the upsurge in NIH scientific commitment.There's no guarantee of that, not by a long shot. Besides that, I want it to happen before I die. Yeah, 100 years from now people will probably be saying, "Wow, can you believe the abuse those patients suffered at the hands of those irrational BPS proponents? How did anyone even believe such nonsense?" In the meantime, billions of patients will have suffered untold abuse. I'm not willing to sit back and wait for that to happen in the long run, nor am I willing to bet the health and future of millions of people on the supposed inevitability of the collapse of propaganda.
This is one of the places that will be shared, and I think as a community we will then have a target for everyone to push toward.When PWME start recovering, I feel that things will change quickly.