Chronic Fatigue Syndrome Worse than HIV/AIDS: Plus Five Ways To Have People "Get" ME/CFS

[andreamarie]

Cort was surprised at how much funding Crohn's disease and ulcerative colitis get. When I was dx in '65 with Crohn's there was next to zero research. It also was thought to be a psych disorder. My personality problems changed three times in ten years. When I speak to young doctors they don't believe me. I remind them that MS was thought to be a psych disorder.

The Crohn's & Colitis Foundation was formed by a handful of wealthy patients AND THEIR DOCTORS. Doctors who were well known and well liked. Doctors who didn't believe it was a psych disease. These doctors took their role very seriously and were hands on volunteers. Is there a place for doctors in any organization for CFS?

If we all asked our doctors to volunteer, what would they do? I am not being sarcastic; I have an appointment with my CFS specialist at Mass General Hospital in Boston in September. She was one of the authors of the recent paper on the difference between early years for the CFS patients and later ones. Physicians are working much longer hours now and my female physicians tell me they are very stressed. Still, patients with CFS give thousands of dollars to physicians who do not take insurance. Maybe they'd like to give something back.

 

[dee]

hey cort, my MEMORY is getting so bad I don't know what to do??? whats the experts got in store for this HORRIBLE symptom?

 

[Cort]

Scott is spot on. Whether it's HIV/AIDS or the change in society's attitudes towards smoking and drunk driving, there is a lot to be learned - and copied from these other advocacy communities.

I've long felt the ME/CFS/Fibro community is too polite. I'm not suggesting we all become jerks but while statistics and such are useful, they are best used as proof-points to validate claims. Usually it takes something more "in your face" to jar people out of their daily routines. We must first overcome all the "white noise" in the market that people tune out. Once we have their attention, then we can use stats, stories and more to add substance to our message. The original civil-rights movement was non-violent but powerful because they harnessed shame and guilt and turned it into outrage.

If ME/CFS/Fibro killed people, it would be the #1 deadliest disease - ahead of heart failure and stroke. What sort of society allows millions of its people to have their lives slip away into the gray cobwebs of despair while spending a paltry $1 per person to find out why? How many families have to suffer as their loved ones retreat into corners unable to be involved in the simplest of life's pleasures? Are we as a society content with letting millions of people cease to be contributors? I don't think we are.

5 million people suffer from Alzheimer's yet it is a top of mind issue. I see a lot of similarities between these two disease groups. Time to start using the tactics others have found success with and shake folks awake. Of course this is just my opinion

I've long thought we should have an "inside" team and an "outside" team - one that vigorously pushes the feds on the outside and one that works on the inside..Right now we don't have either

 

[ladybug64]

Thank you so much Cort! This is very helpful.

 

[Cort]

Cort was surprised at how much funding Crohn's disease and ulcerative colitis get. When I was dx in '65 with Crohn's there was next to zero research. It also was thought to be a psych disorder. My personality problems changed three times in ten years. When I speak to young doctors they don't believe me. I remind them that MS was thought to be a psych disorder.

The Crohn's & Colitis Foundation was formed by a handful of wealthy patients AND THEIR DOCTORS. Doctors who were well known and well liked. Doctors who didn't believe it was a psych disease. These doctors took their role very seriously and were hands on volunteers. Is there a place for doctors in any organization for CFS?

If we all asked our doctors to volunteer, what would they do? I am not being sarcastic; I have an appointment with my CFS specialist at Mass General Hospital in Boston in September. She was one of the authors of the recent paper on the difference between early years for the CFS patients and later ones. Physicians are working much longer hours now and my female physicians tell me they are very stressed. Still, patients with CFS give thousands of dollars to physicians who do not take insurance. Maybe they'd like to give something back.

That's good news regarding Crohn's. Isn't it incredible that it was thought to be a psych disorder?....The more people learn about ME/CFS - the more people get diagnosed - and the better chance we have of finding people with deep pockets who are willing to help out.

I met a Venture Capitalist at the Davis's function who's daughter had severe ME/CFS....That guy had some money!

 

[dee]

hi cort, when I can keep my eyes opened i'll read it BUT I've been reading for some time many articles now that CFS/ME is Polio. I had next door neighbor friend that had polio that I was playing with in the 50's. sort of backfired. what cha think?

 

[Michi]

Thanks SO MUCH for this Cort. This is exactly what I've been looking for - a succinct and comprehensive explanation of how seriously this illness should be taken. I'm slowly gearing up to do what I can advocacy wise and this is very helpful.