What Should Phoenix Rising Tell the IOM Committee?

[Andrew]

The main problem I have with the CCC is they use the word "fatigue" when they should use the word "symptoms."

 

[monica]

That's the only reservation I had as well, but on balance, I think it makes a good political point. i.e. it may open the eyes to committee members that there are biological abnormalities in ME patients. I'm certain that they will dismiss this demand, but it makes a point. I support the points you have made in your post, Sparrow.

Just a note: In my case abnormalities were found in my spinal fluid. During a viral infection. So biological markers maybe found in spinal fluid, not only blood. Spinal fluid is not often tested (should be tested when inflammation is present).

 

[Ember]

What do we like about the CCC?

From "Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Clinical Working Case Definition,
Diagnostic and Treatment Protocols:"

Our strategy was to group symptoms together which share a common region of pathogenesis, thus enhancing clarity and providing a focus to the clinical encounter. The inclusion of more of the potential spectrum of symptomatology in the clinical definition should allow a more adequate expression of the actual symptoms of any given patient's pathogenesis. We hope that the clinical working case definition will encourage a consideration of the ongoing interrelationships of each patient's symptoms and their coherence into a syndrome of related symptoms sharing a complex pathogenesis rather than presenting a "laundry list" of seemingly unrelated symptoms. We believe this will sharpen the distinction between ME/CFS and other medical conditions that may be confused with it in the absence of a definite laboratory test for ME/CFS.

 

[SOC]

@Sparrow, thanks for your brilliant contributions.

 

[Starfive]

Sorry for the late input...Been having some challenging days. here is my two cents.
The main point I wish the panel to hear is The URGENCY as in:
"What started as an affliction of a few grew to hundreds, then thousands, and now millions. This is a disease that is spreading and it is urgent to accelerate funding for research. Believe us when we say: 'You do not want to get this disease'."
(My numbers above could be corrected to reflect known facts from the outbreaks.)
I saw somewhere a short video of the spread utilizing dots on a map, very compelling. My Brain cells can not produce where it was. most likely youTube. This all may already be included and I am just repeating others. All in all though I am grateful to everyone who worked so hard on this, and those who are still working, and those who will present and represent. Thanks!

 

[Sparrow]

@Sparrow, thanks for your brilliant contributions.

Thank you. This means more to me than it probably should.

It's nice to feel useful in some small way in the middle of the prison of this illness.

 

[Firestormm]

@Kina

I believe there was a practice presentation yesterday? How did it go?

And is it worth now keeping this thread open i.e. has the presentation been finalised?

Hope it all went well. Whoever is actually delivering it - thank-you for doing so

 

[taniaaust1]

Did PR find someone to do it? Im curious who is going to be presenting?

 

[Izola]

Conservatively, there are 17 million people around the world who could be watching - 34 million eyes and ears. We are a patient population with someone awake and watching 24 hours a day. Be careful what you ask for if you are not sincere in wanting to know our truth.

@Mark - What specifically did the IOM ask PR to present at this meeting?

I doubt there is a spec of sincerity by HHS. First off, they give extremely ill patients 20 some days to organize, shuffle their facts into clairity, discuss it, put it to paper and finally find enough warm and functioning bodies and minds to get on a plane and hope they're not all dead when the landing gears are enabled. Yah. It's their or our cooperation they want.

The good part is the 34 million EYES!!! Thanks Wally.

 

[Mark]

Did PR find someone to do it? Im curious who is going to be presenting?

Sorry we haven't had a chance to give an update on this thread; the team that volunteered to help with the presentation have been very hard at work and they've done a great job and produced a presentation, based on my earlier summary of this thread, which Gabby (Nielk) will be presenting on Monday. We'd have liked to post the draft here for further discussion and refinement but we just ran out of time. We'll post our presentation here on Monday. I hope everyone will be happy that it represents the points made on this thread.

 

[Izola]

Sorry we haven't had a chance to give an update on this thread; the team that volunteered to help with the presentation have been very hard at work and they've done a great job and produced a presentation, based on my earlier summary of this thread, which Gabby (Nielk) will be presenting on Monday. We'd have liked to post the draft here for further discussion and refinement but we just ran out of time. We'll post our presentation here on Monday. I hope everyone will be happy that it represents the points made on this thread.

Everyone was sure given a lot of time for response. Not. This isn't an even playing field. Its' their back yard and they own it. Hope they know they don't have the advantage they think they do.

 

[Izola]

No matter what the IoM does, besides backing out and going home, will lead us to an earlier death ealier then our already prognosticated early deaths. And the trail to our deaths will be torturious. Early Death? ' 'Hell no, we won't go.' Don't let them be "killing us softly with their lies."

 

[Firestormm]

Thanks @Nielk You managed to keep that quiet Good luck tomorrow. Try and get some rest beforehand x

 

[Izola]

HHS and IoM don't give a damn about us. They are playing the bureacratic shuffle. The only thing they are concerned about is lunch. Maybe a word or 2 might get through as they walk through the door. I'm old, almost dead. If one of the experts is looking for a severe near end-stage case, volunteer me. I need to contribute something to the world. I can be the sacrifice to the Volcano! Our experts are our salvation. We must treat them well. They sacrifised a normal life for us. All you who are coming up with ways to improve vitality, Bless you.

Good speech, Mark. Sock it to them!

 

[Izola]

I could only do what I wrote, if speaking on my own behalf. I couldn't do that on behalf of the group because it wouldn't reflect/express the important points everyone's made. I do like the idea though of trying to incorporate, if only briefly, a statement of respect for those who've passed on or are too ill to even share their voices. It seems the policy makers are fighting for policy, and not for people. We're fighting for people.

You are an incredible person. I am honored to be your friend.

 

[Firestormm]

Committee on Diagnostic Criteria for ME/CFS
Open Session Webcast today (Monday 27th Jan)

http://bit.ly/MhCht4

The open session of the first meeting of the Institute of Medicine's Committee on Diagnostic Criteria for ME/CFS will take place today at 18.00 UK time (13.00 in Washington DC).

The meeting is being streamed live from the Keck Center of the National Academies in Washington DC, and you can access the webcast here http://bit.ly/MhCht4.

A video recording of the meeting is to be posted on the IOM's website after the event, for people who cannot view it live.

Agenda http://bit.ly/Mjy5ZE (pdf)

1 Introduction to Public Session

2 Background and Charge to the Committee

3 Q and A from Committee

4 Methodology for the CDC Multi-site Clinical Study

5 NIH/Office of Disease Prevention Pathways to Prevention Workshop: ME/CFS

6 The Voice of the Patient Report – see comment http://bit.ly/1aX7IBe

7 Remarks from ME/CFS Advocates and Associations:

Gabby Klein, Phoenix Rising
Lori Chapo-Kroger, PANDORA Org
Carol Head, CFIDS Association of America
Pat LaRosa, New Jersey CFS Association, Inc.
Charmian Proskauer, Massachusetts CFIDS/ME & FM Association
Mary Schweitzer, Wisconsin ME/CFS Association, Inc.
Jennie Spotila, OccupyCFS

8 Comment Session (15 slots of 3 minutes each)

9 Adjournment of Public Session

I see also from Facebook that Jen Brea (Canary in a Coal Mine) and her filmcrew will be there doing brief interviews with attendees

 

[Mark]

A small team of volunteers have done an extraordinary job at extremely short notice, and put together a presentation for Gabby to deliver, based on the summary of members' comments that I produced earlier in this thread. Here are the materials they put together for this presentation:

Presentation powerpoint (as PDF):
(attached)

Presentation text:
https://docs.google.com/document/d/15_jjBMd4SIKenitu_vugE2wzZ2KUF3QRijow2MLacCA/edit?usp=sharing

References:
https://docs.google.com/document/d/1ZzUELQ0ki_hO00iGKfi4hpq9nR-hxPphBjmJPXhgY_E/edit?usp=sharing

Huge thanks to everyone who helped with what was a very special team effort to get this done in time. It's a shame that we ran out of time to bring the presentation back to this thread for further discussion, but I hope what we have presented is representative of the views of our members as expressed on this thread.

 

[shannah]

A small team of volunteers have done an extraordinary job at extremely short notice, and put together a presentation for Gabby to deliver, based on the summary of members' comments that I produced earlier in this thread. Here are the materials they put together for this presentation:

Presentation powerpoint (as PDF):
(attached)

Presentation text:
https://docs.google.com/document/d/15_jjBMd4SIKenitu_vugE2wzZ2KUF3QRijow2MLacCA/edit?usp=sharing

References:
https://docs.google.com/document/d/1ZzUELQ0ki_hO00iGKfi4hpq9nR-hxPphBjmJPXhgY_E/edit?usp=sharing

Huge thanks to everyone who helped with what was a very special team effort to get this done in time. It's a shame that we ran out of time to bring the presentation back to this thread for further discussion, but I hope what we have presented is representative of the views of our members as expressed on this thread.

Great job putting this together!

One thing I noticed that you might want to correct is the date on the reference listing. It's noted as 27th of June (instead of January) 2014.

 

[taniaaust1]

Thanks all who helped with this..

 

[Bob]

Here's the video for Phoenix Rising's presentation:
www.youtube.com/watch?v=NxoRs4SCQE0&list=PLGTMA6Qkejfj8CzsYdyxTcHb6ZrhM6Jpn