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Silence = Death. Time is running out to make our voices heard

Posted Apr 02 2013 9:30am
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Over the past three decades people with CFS/ME have been thoroughly ignored. Worse than that, we have been blacklisted. Academics who want to study the illness have been ousted from their positions. Physicians have been forbidden to treat us. What few funds have been granted for research have been stolen. We've been ridiculed in the press, rejected by the health care system, abandoned by people we thought were our friends.

Haven't you had enough? I know I have.

On April 25 and April 26, 2013 the FDA is holding a public workshop on treatments for CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis). CFS/ME specialists will speak, as well as patients. Is this merely another smokescreen? A stalling tactic to make it appear as if the government agencies responsible for our health actually give a hoot?

Quite possibly yes. But, in this case, the intent does not matter. What matters is public outcry.

Nothing promotes change as much as the voices of thousands of people crying out for it. The larger the number, the more likely it is that something will happen. What is that "something"? Is it funds to research treatments? Yes. Is it for CFS/ME to be recognized by physicians as a legitimate disease, rather than a form of neurosis? YES. Is it to change the $*&^%*! name? YES!

We can't get any of those things accomplished unless we tell them what we want, which is exactly what they hope won't happen. They'd like us to disappear. The question is, are we going to cooperate and hold out tongues? Or are we going to speak our minds?

Anybody in the world can post a written comment on the FDA website. But as of this morning, only nine people have posted comments. Let's tell them what we want. Let's tell them we want funding for effective treatment, that we want CFS/ME specialists involved in research, that this illness has devastated our lives. The comment period ends on April 8th, so this window of opportunity is closing fast.

We need to make our voices heard! If we remain silent, we will continue to be ignored.

Here is the link to submit a short comment (where they ask you to put your organization, you can put your local support group or regional/state ME organization) http://www.regulations.gov/#%21submitComment;D=FDA-2012-N-0962-0004

Here is the link to read more about the meetings https://www.federalregister.gov/articles/2013/03/11/2013-05562/drug-development-for-chronic-fatigue-syndrome-and-myalgic-encephalomyelitis-public-workshop
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