Wednesday, October 23, 2013


It's being done in secret.
It's being done fast.
We need to come out in the open.
And we need to do it fast.

I heard from a friend of mine and his email was disturbing. This won't be like my usual posts. There will be a lot of links at the end and I encourage each and every one of you to do what you can. I'm pretty much posting as it was sent to me.  If you are on social media, use it. OK, here we go.

We urgently need your support on a critical issue!
The Department of Health and Human Services (HHS) and Kathleen Sebelius is singling out patient communities with “medically-unexplained” symptoms one at a time in the hopes of defunding research and eliminating medical care and disability benefits.

The HHS is doing this by contracting with the Institute of Medicine (IOM) to redefine physical diseases in purely psychological terms. HHS is acting in secret and ignoring objections from patients and clinical experts alike.

First they came after the Gulf War veterans suffering from Gulf War Illness. Now they are coming after us, the sufferers of Myalgic Encephalomyelitis.

Your patient community might be next! We need your help at this very moment. A united coalition of patient communities with similar symptoms and common experiences of mistreatment by HHS can stand far stronger than if we remain isolated and divided.

Failure to stop this action against our community now will only lend implicit credence and precedent to a destructive process that will ultimately be turned on all of us.

What you can do to help.


Here's what to write to the White House......

Fill out your name and postal code

For subject, pick 'Health and Human Services'

For comment, just copy and paste the following comment below.

Please order HHS to adopt the Canadian Consensus Criteria and cancel its contract with the Institute of Medicine (IOM) to redefine ME/CFS

On September 23, thirty-five of the leading ME/CFS researchers and clinicians wrote to HHS Secretary Kathleen Sebelius calling for the Canadian Consensus Criteria (CCC) to be used as the sole case definition for ME/CFS. These experts also urged HHS to abandon its plans to contract with the Institute of Medicine (IOM) to use non-experts to create its own definition. On the same day, despite an outpouring of patient opposition, HHS announced that it was going forward with the IOM contract to develop its own clinical diagnostic criteria for ME/CFS, instead of adopting the 2003 Canadian Consensus Criteria (CCC) created and endorsed by ME/CFS experts.

Regarding the IOM contract, the thirty-five experts stated, “Since the expert ME/CFS scientific and medical community had developed and adopted a case definition for research and clinical purposes, this effort (the IOM study) is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on the disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.

The use of on-experts is especially concerning because, thanks to the bad definitions that HHS has promoted, the disease is so poorly understood that the medical community at large believes the disease is either not real or is a form of depression or deconditioning. ME/CFS is not deconditioning or depression. It is a devastating disease that causes neurological and immunological dysfunction and leaves patients bedridden, housebound and unable to work. ME/CFS costs the U.S. economy an estimated $17-23 billion dollars in lost productivity and direct medical costs.

Given the overwhelming opposition to HHS' plans by both patients and experts, I am asking you to do whatever you can to get HHS to follow the lead of ME/CFS disease experts. HHS must cancel the contract with IOM. HHS must adopt the Canadian Consensus Criteria.


They're coming for Gulf War Veterans with PTSD, Chronic Fatigue and ME patients and, trust me, Fibromyalgia isn't far behind.

My theory?

These "syndromes" cost a whole lot of money and anything that can be done to deny it and shove it under the rug will be done. Just re-classify it as "all in our heads" and throw us a couple of anti-depressants and tell us to go away.

They have been wanting to do this for years.

Now, they actually may be able to do it.

We need to stop this.


We can't wait until after it happens and then start to cry.

By then it will be too late.


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