Monday, April 21, 2014

High Noon at the IOM

The deadline for sending comments to the IOM for their upcoming public session is Tuesday, April 22. I encourage everyone to send comments. These become part of the public record - by law. 

Why is this important?

The IOM contract and the P2P panel represent a turning point in our history. Thirty years ago, HHS tried to bury us with a silly name and a vague definition that made it impossible to conduct meaningful research. But, even after three decades of neglect - and outright dereliction of duty  - we are still here.

There is no doubt in anybody's mind that HHS intends for the IOM not simply to bury us, but to drive so many nails in our coffins that we will never be able to rise again. And yet, it was quite clear from the public meeting in January that the IOM is on the defensive.

Fifty of the world's leading experts in ME/CFS signed a letter to HHS, telling them that the IOM contract was a waste of time and money. And scores of patients and advocates have kept up a steady stream of pressure ever since.

They may have bigger guns, but we have more of them. And we have the U.S. Constitution.

The Bill of Rights

HHS would like us to sit down and shut up.

But I, for one, will never give up my First Amendment rights. They will have to pry my laptop from my cold, dead fingers before I give up my right to free speech. 

This is not a good time to remain silent. If we say nothing, we are giving tacit acceptance of whatever the IOM decides to do. We can't dispute their decision afterwards if we say nothing now.

Public records are the only means of providing solid evidence that the ME/CFS community 1) opposes the IOM contract, and 2) wants the immediate adoption of the CCC and the name to be changed to ME.

The IOM is challenging us to a showdown. We should lock and load.

The following are one advocate's comments to the IOM. Feel free to use them as a template.

Send comments to this address before April 23: mecfsopensession@nas.edu

If you miss the deadline use this address: mecfs@nas.edu

____________________________________

To: mecfsopensession@nas.edu

Dear Dr. Mundaca-Shah,

Please make my comment available in the Public Access File.

The IOM asked the ME/CFS patient community to weigh in on two questions:

1) In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?

a. Healthcare professionals must stop ignoring the seriousness of this illness, and stop psychologizing it.

b. Healthcare professionals must stop trying to get patients to exercise their way out of it. This is just making patients much sicker. Educate healthcare professionals about Post-Exertional "Malaise" (i.e. Post-Exertional Collapse). For instance, if a patient (diagnosed or not) tells a doctor that when they exercise they are incapacitated for days, that should set off alarm bells for healthcare professionals, and they must then educate the patient on how to (try to) avoid Post-Exertional "Malaise"/Collapse.

c. Healthcare professionals must use the Canadian Consensus Criteria for ME/CFS or the International Consensus Criteria for ME/CFS. They should not refer to the CDC's website or literature for ME/CFS, as it is inaccurate and the recommendations in it are hurtful to patients.

d. Healthcare professionals must be willing to do house calls for those who are too sick to leave their homes to get to a doctor's office. There are many of us in this situation, alone and without help or medical care.

2) What are your thoughts on the current terminology used to describe this disease:Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

a. Firstly, the name "Chronic Fatigue Syndrome" is inaccurate, grossly demeaning and very inappropriate given the severity of the illness. It belittles the disease and the suffering of the patients. Many of us remain homebound or bedridden for decades.

b. Secondly, the illness should be called what the World Health Organization calls it, M.E. -- myalgic encephalomyelitis. Recent research has found inflammation in the brains of patients with ME/CFS, which validates the name ME. This research must be acknowledged by the IOM.

c. Lastly, the name should not be further watered down and called "Multi-system" or "multi-symptom" anything.

Thank you for your time and attention.

[YOUR NAME]

3 comments:

  1. Thank you for posting this. I cut and pasted your sample letter into an email box, and soon found myself altering detail, tho not direction.

    I am ovextended and probably would not have sent in my testimony if you had not written and publicized this blog. Thank you.

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  2. Thanks again, Erica. Let's not forget the CDC's "Multisite Study." The CDC is now sorting through questionnaires using the same fuzzy thinking that produced the Reeves "empirical" redefinition of CFS in 2005. The only difference is that this time, the CDC is collecting their data from legitimate CFS doctors instead of making random phone calls.

    The result will be the same, though -- more useless confusing misinformation. The bureaucrats at the CDC lack basic clinical experience with the disease and won't listen to the experienced clinicians who developed the CCC and ME ICC.

    It's written into the HHS/IOM contract that the unreliable information from the silly NIH P2P Workshop and the useless CDC Mulitsite Study will be incorporated into the IOM ME/CFS study report. HHS is pulling out the stops in their decades-long ME misinformation campaign.

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  3. Thanks so much for this. Have written

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