I would say that the origins of your symptoms are unknown and thus you were Dx with ME, or you suspect you have ME. I would not try and hide it, unless you feel that you would be abused in some way for disclosing it.
It’s great to hear you will be tested, so you can rule things out, or better...
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Is the intent of your post to receive constructive feedback from others, about how you could modify your wording in the future to gain a more desired impact?
Wow, I had no idea you invented the treatment and dosing. That’s impressive but also must be aggravating. Thanks for sharing.
Didn’t Ron Davis invent something that he couldn’t patent or profit from, because he worked in academia? I think someone took his idea and made millions in the private...
You got kicked off T3? That’s so cruel. It’s so cheap now too. Someone at NHS is a very poor negotiator. Can you buy it online?
I have my frustrations too, because the government here once considered banning thyroid meds. But ultimately the patients and doctors won, and thyroid meds are a...
Yes, exactly. I have PwME friends (not on the boards) that are waiting for others to do all the “heavy lifting”. They simply can’t be bothered with lending a hand. Instead they will complain endlessly about how ME has impacted their lives, and how horrible ME is. But that’s as far as it goes...
My conclusion is that too many PwME are sick and fearful, and are thus not good candidates to take action. Some are fearful that someone else might find out they have a ME diagnosis; so I doubt the fearful of ME Dx peeps will show up at a visible protest. And the ones that don’t care how others...
What’s most important is what Pharma believes and ultimately chooses to do. IMO, success is where hard work and opportunity meet.
So what is it you believe you can do to help with getting ME drugs approved?
As I said in a previous post, how folks decide to live with ME is strictly their business. I didn’t realize you supported psychological theories that apply to PwME? If so, then this is news to me.
Given the circumstances, we all need to make our own decisions about risk vs reward. There is no...
It sounds exciting to meet the CEO and chief scientist. That’s aligns with what JE posted, that there is often a personal connection.
I understand how patents work, and the 10 year timeline. I have been reading a few articles about the concerns of US Pharma’s. There may be a new wave of...
There is no permanent cure, and doubt there ever will be. Treatments must be on going, which is the best that’s available now. There is no guarantee of 100% recovery. Most likely many drugs will be need FDA approval, because we are not all wired in the same way. My goal is to create a new...
I don’t know exactly how to respond. I am getting the impression you have little confidence in my ability to pull this off? That’s fine, I was actually expecting a lot more push back.
Have a nice day :)
Agree, history has proved itself, that sitting and waiting for someone or something else to solve our problems doesn’t work. That’s why I firmly believe changes will come about from PwME led activities.
I am very sorry :hug:
Take a risk. Find your passion. Jump in feet first.
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