- Los Angeles, USA
The main problem I have with the CCC is they use the word "fatigue" when they should use the word "symptoms."
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).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.
From "Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Clinical Working Case Definition,What do we like about the CCC?
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.
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?
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.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.
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.
Committee on Diagnostic Criteria for ME/CFS
Open Session Webcast today (Monday 27th Jan)
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
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):
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.