CNN front page story about Ron Davis and Whitney Dafoe

I agree but pictures convey powerful messages. For years i was hiding my symptoms, the exhaustion spells, the motor control problems, the shakes, the fatigue and so on. Now i let them show so people can see for themselves what i live with plus the severity makes them harder to hide. Seeing me using a scooter at the grocery store, needing to sit down or lie down frequently, the muscle weakness, watching me stumble or the couple falls i've had, seeing me look exhausted or watching my neurological tics sends powerful messages.
Its embarrassing, it bothers me a great deal but seeing is believing.

Its both. When the public demands action governments act. Squeaky wheel gets the grease. When medical professionals say we need research funding and stop treating colleagues as below contempt and sabotaging their research requests we get more legitimacy.
Discrimination comes from people and professionals and we need to change both.
As i said earlier MS is good analogue for ME here, it went from imagined to real and eventually the public became aware of it and real research money is now spent on it. Not nearly enough IMO but the longest journey begins with a single step.

 

Thanks for the details. Yes, you are correct. But remember how we were all shook up by AIDS. I will never forget Nureyev being held up by two chaps on either side of him. Things like that really had an impact and imparted fear. In the case of ME, the disease has been so mocked, so disparaged, so dismissed that these images are useful. Jen Brea did a masterful job in her film in this regard. In fact, she states that it was only when her doctor saw the film clips that his jaw dropped. So, in this case, in the case of ME, these images are more than useful. They counter the negative effects of the awful CFS name.

 

Article is on the Genetic Literacy Project website,
https://geneticliteracyproject.org/...on-a-quest-to-solve-chronic-fatigue-syndrome/

 

Just a couple of points. There are people who manage to continue working or studying full time as long as they rest adequately in the evenings and weekends. Maybe not many but a friend who went to a local support group in the 90s managed to work till retirement with a lot of family support.

Also ME has never been considered as progressive in everyone. There are people who stay the same for years.

 

Jen Breas account of meeting Whitney
Meeting Whitney

 

The Challenge: He is A Father, A Caregiver and A Scientist Trying to Save his Son and Others With ME/CFS or Chronic Fatigue Syndrome

Rose Duesterwald

full article here
https://patientworthy.com/2019/06/05/challenge-father-scientist-cfs-chronic-fatigue-syndrome/