When the Illness Is a Mystery, Patients Turn to These Detectives

antares4141

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Truth or consequences, nm
It's funny.

You would think when illnesses like GWS or CFS appear and affect large segments of the population relative to other diseases, they would want to send some of us to an institution like this.
https://commonfund.nih.gov/diseases

Instead we have to tolerate abuse from unethical authority figures who do irreparable damage to us dismissing our illness as psychological.

At the bottom of the UDN website they have contact info. I'm going to be bugging them. I would encourage everyone else on this site to do the same. Obviously they can't admit 800,000 to 2 million of us but they can take a suitable sample size that would represent us. Which might help shed some light on the illness in the form of some type of overlooked biomarker.


https://www.nytimes.com/2019/01/07/...Z7G-eBnVXvbXAxir6gSVnUb2WwyMfwgxxSN6HlkLNXRyI
 

Wolfcub

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Well said @antares4141 !

I agree with you 100%.
Although the UDN is US based, it would be a good thing if patients in other countries could also refer their doctors to this website/research study, and to the New York Times article, to plant seeds of inspiration if nothing else.
Well...that's my idealism speaking there of course.

And yes, getting the UDN fully on board with ME/CFS in the first place is the thing to do.

It might be feasible to mail samples from patients to the UDN from places such as the UK etc. (That is if doctors were motivated to do so and not dismissive!)
 
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Second star to the right ...
Instead we have to tolerate abuse from unethical authority figures who do irreparable damage to us dismissing our illness as psychological.
@antares4141
And some of us are lucky if that's the only damage they do ....

I really enjoyed this article, just the concept that someone Dr's out there are actually trying to help people that their peers have dismissed as deluded, deranged, or lying .....

Thank you for posting this .....:):):) :thumbsup: :hug: