Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Mar 31, 2014.
An e-mail from IOM further states:
It is unclear at this time who the 'patients and caregivers' are to give public comments on this. Have any of you been invited to give public comments?
What would your answer be to these two questions?
My quick answer would be:
1) They should all know and be very familiar with the CCC diagnostic criteria
2) The 'chronic fatigue syndrome' should be dropped from chronic fatigue syndrome/myalgic encephalomyelitis.
Where do we begin?!?
I think the immune side of CFS, the autonomic and sleep. If they tests this things, they will find abnormalities and the patient will have better chance of being taken seriously, also the things that can improve the most quality of life.
I have been asked by people being tired (a chrons patient, others... anybody w fatigue now think is cfs ), how do I know if I have CFS or not: here is my simple answer : when you exercise or overdo do you feel worse intimidate?, how do you feel the next 3 days??? The answer is I feel better when I exercise, even on Fibro(only) people that had ask me feel better if they exercise.
How can MEadvocacy.org help with this? We can do mass emails so they would get more responses than normal.
Personally I would answer #1 with Adopt the CCC (which includes PEM), and #2 with M. E.
Or we could repeat Jeannette's protest letter (or some other protest letter) and have people sign on.
Or we can mass email Harkin's DHHS Committee, or whoever.
I'm open to ideas. If the majority of patients can come to some kind of consensus, I'll do it.
Jeanette Burmeister- Thougths about ME
IOM Meeting? participate at your Own Risk:
"Before people get too excited about the that parts of the meeting are open to the public, let’s be clear that the IOM’s understanding of what constitutes a public meting is peculiar at best. There will be no opportunity for the public to participate in the meeting, other than for a few pre-selected and invited speakers. They can hardly be considered “the public.” The public is only welcome to attend the meeting in person (up to a very limited number of people) and via webcast, but there won’t be an open mic for comments or questions and dissenting opinions by the public will definitely not be allowed."
It is pretty telling - the fact that only pre-invited slots are available for comments. Why not give a fair chance to all who want to comment?
Jeanette is right. It is to give the appearance of an 'open meeting' - which isn't.
I would say "DON'T PARTICIPATE at your own risk." That is, if the community does not try to educate IOM and turns their back, you have lost ANY chance of possibly changing people's minds. Then what are people going to do when the product comes out and it's not to their liking? Complain? Protest? Sure, but that may be too late.
So what if it's a limited number of people who attend? Pack the room. I've never heard of a federal CFS meeting where that has happened. If you pack it, they would have to find a larger space in the future. Since we never pack the room why would agencies consider a larger space?
If you look at history like the civil rights movement in the US or women's suffrage, no one knew what actions would ultimately influence history until later. Do you want to take the chance that your action, even something as "little" as submitting your comments, might influence someone to think differently? It happens, you know.
And if you want to dissent, go right ahead. Who ever said you had to ONLY answer the two questions asked? Are we sheep or we people? No one's going to come arrest you (at least in the US!) if you have a dissenting opinion.
There's a book I read written by a woman who interviewed a bunch of older people about their advice for younger people. One main piece of advice: most people don't regret the things they did even if the outcomes aren't what they wanted; what they do regret are the things they did not do.
BOTTOM LINE or TL; DR: If you think by not participating, people will say "Oh, that's a protest," you're wrong. What they likely will draw from it: very few people care about this illness and even when offered a chance to participate, no one cares strongly enough to do anything.
Hope 123 - these are all good points --- (I added emphasis to points I feel especially strongly about).
Influencing, or trying to influence outcome is action taken.
I'd also add the following:
1) ANYONE can participate -- at least by e-mail. Send in your comments to email@example.com by
APRIL 23, 2014.
After April 23, 2014 you can still write in but to: firstname.lastname@example.org
Comments submitted later will not be reviewed until after the meeting though.
2) You can write in even if you don't live in the US.
If you ask my friends, I am the last person they would say is a "drama queen" but let me assure you any and all advocacy actions are a fight for my life, for your life, and for millions of others' lives. And though it does not involve guns, tanks, swords, or blood (thankfully!) but paper, pen, the telephone, the Internet, and schmoozing, it's still a fight.
I wonder how do you all feel about ME (as in encephalitis) since in the presentation of Kamaroff there is evidence of brain inflammation.
#2 ME for me too.
This is the key point for me. Absolutely key. I will not give them ANY excuse to pretend we did not care, or did not bother, or did not know enough, or are too small a group.
My personal opinion is that if someone offers you a microphone, take it and speak. What you choose to say is up to you.
So it's sounding like the thing to do is to not participate (boycott), but also to protest and state why we're not participating. Notice that Eileen sent her letter to Carmen Mundaca, not to the address where they're asking for input.
I think a shorter version of Eileen's letter would make a good statement, and we could base an email campaign around that.
Now who would we send that too? Carmen Mundaca, Sen. Harkin and the other senators on his HHS Committee (the people that have the power over the HHS)?, Kathleen Sebelius or other officials in the HHS?
The other part is notifying the press that we are protesting. That would be handled with a press release. For press releases I'm planning on using the press list that somebody came up with on here, unless somebody has a better idea.
Then if the press thinks what we're doing is interesting, someone may write a story about our protest. Then that makes further noise.
I understand and respect your stand, Jennie and @Hope123. I also understand and respect Eileen and Jeanette's stand of protest.
I have been on the fence with this and I'm not sure what will be more effective in the long run. The underlying factor though is that I do not accept the legitimacy of this IOM process. You might say, who care what you think; it is happening whether we like it or not. That's true (for the meantime) but I do not have to take part in it. I could choose to keep on protesting it. That will not tell them that no one cares - the opposite. They will realize how strongly we feel about this.
The fact in my mind is that the IOM is not the venue for diagnostic criteria making...period. - as evidenced by the GWI attempt. when one takes two very complex disease that for 30 years have had problems with a proper definition and you give it into the hands of inexperienced committee members, what do you expect to come out of it?
I still stand by what our 50 experts have stated - adopt the CCC now. I will continue to drive this issue and let the IOM know. I don't think that this is telling them no one cares.
Jennie, how much time have you and others spent looking into the IOM panel members and its potential biases? Have you heard any replies to this? Do we even know whether they read it ? I have sent in a few comments and they don't even appear in their open data.
The panel were supposed to have all our comments to the IOM previous to the meeting in January yet, they all sat there throughout the meeting with apparently no interest nor questions.
I don't feel confident at all that anything that we say will have any weight at all in their decision making. Some might say but, at least it will be part of the record. But, what will that accomplish after their decision/verdict has been made?
I think that everyone has to go with what they feel comfortable in this very trying and difficult situation. I commend anyone for taking the time to fight/influence this no matter what their style of choice is.
@caledonia - I would support and sign a letter similar to the one written by Eileen.
The comments on the panelists and potential bias do not go in the Public Access File because that input was to IOM and not the panel itself, which is why it's not showing up. I assume it was read, but I can't prove it.
However, I have heard through the grapevine that the panelists are reading the feedback submitted to them about the study itself.
I completely agree with you, Gabby.
At the IOM meeting, I was told by someone on the IOM panel that that person had read all of the material submitted to the public access file before the January meeting.
"I think that everyone has to go with what they feel comfortable in this very trying and difficult situation. I commend anyone for taking the time to fight/influence this no matter what their style of choice is."
I agree with Gabby and Jennie on this!
Agenda for May 5th meeting:http://iom.edu/~/media/Files/Activi..._campaign=04.04.14 MECFS&utm_content&utm_term
Institute of Medicine Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue
OPEN SESSION AGENDA
May 5, 2014
1:00 – 1:15pm Introduction to Public Session
Ellen Wright Clayton, Committee Chair
1:15 – 1:45pm Neurocognitive impairments in ME/CFS
Megan Arroll, Director of Research for The Optimum Health Clinic, London, UK
1:45 – 1:55pm Q and A from Committee
1:55 – 2:25pm Sleep disturbances in ME/CFS
Akifumi Kishi, Postdoctoral Fellow in the Division of Pulmonary, Critical Care and Sleep
Medicine, Department of Medicine, NYU School of Medicine
2:25 – 2:35pm Q and A from Committee
2:35 – 3:05pm Diagnostic and Criterion Issues for ME/CFS
Leonard A. Jason, Professor, DePaul University, Director of the Center for Community
3:05 – 3:15pm Q and A from Committee
3:15 – 3:30pm Break
3:30 – 5:00pm Patient and Advocate Panel: Challenges of ME/CFS patients when interacting with the
health care system
Invitations have been extended, final panelists TBD.
5:00 – 5:20pm Q and A from Committee
5:20 pm Adjournment of Public Session
Ellen Wright Clayton, Committee Chair
Regarding the speaker Megan Arrol of the UK, Tate Mitchell posted the following on co-cure:
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