Blog: All The Time and None At All, Jenny Spotila

[Indigophoton]

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge.

Dr. Collins said, “Research, done correctly, takes time.” Thank you, Captain Obvious.

We KNOW research takes time, Dr. Collins. That is why we have been pleading with NIH to invest appropriately in ME research for more than thirty years.

http://occupyme.net/2018/04/25/all-the-time-and-none-at-all/

 

[hellytheelephant]

I was diagnosed in 1993 as a young woman in my early 20's- I can't believe I am now 50 and there is still no treatment.

 

[Sunshine3]

Depressing, hope ME Action and Solve can change things....

 

[ahimsa]

I hear ya, @hellytheelephant !

Illness onset Jan. 1990 at age 29 for me. Then it was five years before I was even diagnosed.

So, yes, it does seem unreal that there has been so little research and so little is known about ME/CFS.

In fact, most of the time my medical care is like that old vaudeville joke:

Patient: Doctor, it hurts when I do this!
Doctor: Then don't do it!

I guess I'm lucky because at least that's better than CBT/GET:

Patient: Doctor, it hurts when I do this!
Doctor: Are you sure? Maybe you just have a phobia? Try doing even MORE!