All hope is lost

[Oliver3]

I understand your feelings and just want to say - to hell with NIH. To hell with letting them encourage you to lose hope. If you can, try not to give them space in your head, in your thoughts. They don't deserve to have a place there.

Hell yeah!!! Fighting talk.!!!!!...when sone of us don't have the strength, it's good for the rest of us to remind them we will fight this ignorance .
To the o.p., if you can , remind yourself how much we've suffered, and yet we're still here. Scant comfort. But it is comfort and those motherf.....s will pay one day, they'll know they were wrong eventually. And that's on them. For life!!
If they don't care about that they're lost anyway

 

[Hip]

There are reasons to be positive, you are absolutely right Hip, and thank you for elaborating on so many of the positive drug trials that are happening.

It may not work for everyone, but I find I get a feeling of hope every time I am planning to try out a new supplement, drug or other treatment which I think might improve my ME/CFS. If I have some plan to try some new treatment, it makes feel more positive than not having anything new on the horizon. This is how I've coped with my ME/CFS, which I've had since 2006.

 

[Artemisia]

It may not work for everyone, but I find I get a feeling of hope every time I am planning to try out a new supplement, drug or other treatment which I think might improve my ME/CFS. If I have some plan to try some new treatment, it makes feel more positive than not having anything new on the horizon. This is how I've coped with my ME/CFS, which I've had since 2006.

I get the same new hope when trying something new. But usually I'm heartbroken when it doesn't work. How do you deal with that part?

 

[Hip]

I get the same new hope when trying something new. But usually I'm heartbroken when it doesn't work. How do you deal with that part?

I don't generally feel demoralised or upset when a supplement or drug I was hoping would improve my health does not work.

When I buy a new medication for my ME/CFS, it often involves doing a lot of online research about it. Reading about the theory and the mechanisms behind the treatment. This reading usually expands my knowledge of ME/CFS or medical science, and the focus on reading the science is part of the feeling of hope or optimism the prospect of a new treatment creates.

If the drug or supplement turns out not to work (and 99% do not help), at least it served to expand my knowledge base of ME/CFS, which is one positive. I find the knowledge gained from researching a treatment often helps in future, if I have to come back to the same subject area.

Unfortunately though my memory has become appalling, so my knowledge base is not actually in my head, but in the form of written notes I make on my computer, or saved studies on my computer.