Discussion in 'General ME/CFS News' started by Kyla, Aug 21, 2015.
I think I'm falling in love.
and i've just signed up to their mailing list.
Kafkaesque: used to describe a situation that is confusing and frightening, especially one involving complicated official rules and systems that do not seem to make any sense.
Sometimes a newcomer's view of what we have been dealing with for decades is the most accurate. He has no preconceived or biased views. He is just looking at the stark raw reality.
Thank you, Zaher Nahle.
Perhaps, and this may be the optimist view, the name of this illness is at fault too. Say multiple sclerosis and concern and sympathy result; say CFS and folks ask: are you always tired? Gee, I am tired too! In the meantime young lives are totally destroyed.
WOW! I feel compelled to donate!
We should get this on a t-shirt, surely...
It's possible to post a comment on the Solve page where that piece appears - he's getting some nice comments (not surprisingly, for such a good article).
He's on the PR forums, by the way, from time to time.
I support them whenever I use Amazon, by using smile.amazon. It's the same as Amazon, a portion of your purchase goes to a charity of your choice - you can choose Phoenix Rising, OMI, Simmaron (Dr. Peterson). A lot of great ones. You can sign up at smile.amazon.com,, then bookmark it and use it to order your stuff. Simple.
IGive is the other one folks have talked about around here, and I use them as well when I order on line to donate to CFS charities, including this one.
“Never attribute to malevolence what is merely due to incompetence.”
So, which is it?
Malevolence. Not even Uncle Sam can be so consistently incompetent for thirty years. Even a broken clock is right twice a day. Yet NIH and CDC are wrong, every day, every year, for decades.
If the incompetence would be widespread all across the health agencies and evenly distributed regardless which disease one is looking at, then it could be called incompetence.
But, when the incompetence is targeted consistently toward a specific disease year after year....for three decades, it cannot be solely attributed to incompetence.
Agreed 100 percent! One has to wonder what is being protected that for 30 years patients with ME had to be disbelieved and discredited, with an attempt made to define ME out of existence. WHY? What are they afraid will be discovered if ME were properly researched? I just wonder.
Let me point out that malevolence can thrive is a broadly incompetent system. It doesn't take a lot of malevolence to create havoc when the systems are not in place to prevent it, and even amplify it.
This guy is amazing. Thanks for sharing @alex3619
[Edit: Seriously, everyone should read THIS ONE, right this very moment.]
Yes! Read it. The claw..
Leaving aside the possibility of conspiracies, probably the prevailing view in the decision makers' inner sanctum (or sancta) is that it has been properly researched already in a sense: the absence of consistent findings from test results of PWME over the years persuades them it is almost certainly psychosomatic. So why would they want to throw money away researching the hypochondria of a load of whingeing so-and-so's?
By "conspiracies", I assume you mean a deliberate policy of classifying the illness as "psychosomatic". There is little reason to doubt the existence of this policy when one can read about it in the UK Parliament's 2006 Gibson Inquiry
The UK psychobabblers have long pedaled their rubbish in the US as well. Simon Wessely's involvement goes back at least to a 1991 NIAID & NIMH conference. Wessely and Sharpe were both part of the Fukuda 1994 criteria group. The "State of Science Consultation" by NIAID (Feb 2000) originally featured just Straus, Wesseley, Sharpe, and a pharma industry shrink until advocates made such a stink that Straus was forced to include a few real experts.
The disability insurers benefit from "CFS is mental illness". Insurer hatchet men advised DWP, NIH, and CDC that we have a mental illness. Those agencies adopted that policy. That policy is still in effect. These are facts, not theory or speculation.
You can also try a Google Site Search
Separate names with a comma.