IOM report release date 10 Feb 2015

[jimells]

The coordination with NIH should assure that relevant information is shared and that key messages are coordinated.

And we already know what those key messages are:

1. Treat with CBT/GET only
2. No money for real research
3. Chronic Fatigue, CFS, ME, ME/CFS, and CFS/ME are all the same illness and is perpetuated by thinking the wrong thoughts

 

[Nielk]

I don't know that it was a formal review like the AHRQ review.
I do not know if IOM provided anything to P2P.
I don't know if NIH provided anything to P2P for that matter.
I believe that Maier said there would synergy between P2P and IOM but I don't think we have seen any evidence of it.

Assuming that it is true that in fact there has been no sharing of information between the P2P and IOM - no synergy at all. Assuming further that these are independent studies with no input from HHS once the studies started. This would mean that at this point, HHS has no idea of the final outcome.

Would it be interesting and embarrassing if they would show conflicting results? ...and this would be in a very public way?

 

[Sing]

I think they only expect spontaneous questions in immediate response to the presentation.

@Valentijn I hope as many as can will watch this presentation and be prepared with facts and questions to minimize the last minute scrambling at 11 when the show starts to roll.

 

[taniaaust1]

The "Register For This Meeting" link on the right side of the initial link

LMAO and here I was thinking they probably had hidden it to try not to have so many of us on their backs. doh.. I forgot they dont need to hide it as most of us will have trouble figuring it out anyway.

 

[taniaaust1]

I think they only expect spontaneous questions in immediate response to the presentation.

Its probably a ploy to get less questions asked of them or to try to avoid too hard ones.. as they'd know most us cant think quickly on the spot.
..........

Persons who plan on attending the meeting in person are requested to register in advance prior to February 5, 2015.

I wish people would wear t-shirts to this meeting all saying "Consensus = Canadian Consensus Criteria .

 

[taniaaust1]

Assuming that it is true that in fact there has been no sharing of information between the P2P and IOM - no synergy at all. Assuming further that these are independent studies with no input from HHS once the studies started. This would mean that at this point, HHS has no idea of the final outcome.

Would it be interesting and embarrassing if they would show conflicting results? ...and this would be in a very public way?

I seriously doubt they'd get themselves in a situation in which they could be very publically embarrassed. Im sure they probably already know what is in these reports even if they arent supposed too. Its all been rigged from the start to get things in the direction some people want it to go.

 

[Research 1st]

So we await with interpretation the official shady IOM 'report' that boasts of impartiality by first of all removing the top ME CFS researchers in the world before games begin. That is of obvious political design, it's rather torturous to 'consider' the result but, we are used to be tortured mentally and physically with this disease.

The IOM is such a waste of American tax payers money, they must be taking tips from the NICE British CFS/ME system for 'cost effective evidence based medicine'. (Doing nothing for acquired neuroimmune disease is cheaper than doing something).

The findings of the IOM/P2P is written in the stars, or maybe the script.

Credit has to be given to the CFS patients who cope admirably with overbearing symptoms, yet analyze the twists and turns and have a keen eye to spot any obvious deviance other than the fact it comes out before the blocked study by Dr Montoya, the 2014 game changer study, we never saw, because the IOM had to come out first.

Don't you love 'freedom'.

 

[Sing]

I missed that part--Has a study by Dr. Montoya actually been blocked from publication so that IOM can precede it? What is the story?

 

[Hope123]

So we await with interpretation the official shady IOM 'report' that boasts of impartiality by first of all removing the top ME CFS researchers in the world before games begin. That is of obvious political design, it's rather torturous to 'consider' the result but, we are used to be tortured mentally and physically with this disease.

The IOM is such a waste of American tax payers money, they must be taking tips from the NICE British CFS/ME system for 'cost effective evidence based medicine'. (Doing nothing for acquired neuroimmune disease is cheaper than doing something).

The findings of the IOM/P2P is written in the stars, or maybe the script.

Credit has to be given to the CFS patients who cope admirably with overbearing symptoms, yet analyze the twists and turns and have a keen eye to spot any obvious deviance other than the fact it comes out before the blocked study by Dr Montoya, the 2014 game changer study, we never saw, because the IOM had to come out first.

Don't you love 'freedom'.

Please don't spread rumors about the work at Stanford unless you have proof.

 

[Ember]

It comes out before the blocked study by Dr Montoya, the 2014 game changer study, we never saw, because the IOM had to come out first.

Don't you suspect that the redefining and/or renaming of ME/CFS had to come out first in order to challenge the legitimacy of separating ME from CFS in the ICD-10-CM this October? The ICD-10-CM classification follows the International Consensus Panel's recommendation in the ME Primer (ICP).

 

[Undisclosed]

Chronic Fatigue Syndrome – IOM Report Presents New Diagnostic Criteria


Myalgic encephalomyelitis/chronic fatigue syndrome -- commonly known as ME/CFS -- is a debilitating condition that burdens millions of people in the U.S. and around the world. The disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, pain, and other symptoms that are made worse by exertion of any sort. Although health care providers are aware of ME/CFS, many misunderstand the disease or lack the knowledge on how to diagnose and treat it. Less than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS.


A new report from the Institute of Medicine presents new criteria to diagnose ME/CFS and examines whether a new name for the condition is warranted.


DETAILS:

Members of the authoring committee will present their findings and recommendations at a public briefing beginning at 11 a.m. EST on Tuesday, Feb. 10, in Room 100 of the National Academies’ Keck Center, 500 Fifth St., N.W., Washington, D.C. Those who cannot attend may view a live video webcast of the event at http://www.iom.edu/Activities/Disea...elitisChronicFatigueSyndrome/2015-FEB-10.aspx.


Advance copies of Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness will be available to reporters only beginning at noon EST Monday, Feb. 9. The report is embargoed and not for public release before 11 a.m. EST Tuesday, Feb 10. To obtain a copy of the report or to attend the event, reporters should contact the National Academies' Office of News and Public Information; tel. 202-334-2138 or e-mail news@nas.edu.

 

[Kati]

New criteria? Huh? Do we need a new criteria???

 

[NK17]

New criteria? Huh? Do we need a new criteria???

Probably not. CCC and ICC are pretty good and should definitely be taken into account as a first step into the future.
Other complex neuro immune diseases, such as MS, have had revisions of diagnostic criteria over the years.

This wait is killing ME!!!

 

[Nielk]

It sounds like copies will be available a day before only to reporters? We, the public/patients will be kept in the dark until the announcement? Is this in order to avoid real questions from us?

 

[NK17]

It sounds like copies will be available a day before only to reporters? We, the public/patients will be kept in the dark until the announcement? Is this in order to avoid real questions from us?

In which case we should alert the few journalists who have been doing a fair reporting on the state of ME.
Miriam E. Tucker and David Tuller. Mrs. Tucker is on Twitter, but Tuller is not.
@Nielk what do you think? Should we alert Jeannette too, since she has been interviewed by Tuller?

 

[Denise]

In which case we should alert the few journalists who have been doing a fair reporting on the state of ME.
Miriam E. Tucker and David Tuller. Mrs. Tucker is on Twitter, but Tuller is not.
@Nielk what do you think? Should we alert Jeannette too, since she has been interviewed by Tuller?

Ms. Tucker is already aware of the release information.
I have reason to believe the Mr. Tuller is also.

 

[NK17]

Ms. Tucker is already aware of the release information.
I have reason to believe the Mr. Tuller is also.

Thanks, I just wanted to double check and make sure .

 

[Nielk]

@Kina - where was this posted?

 

[Wally]

Not sure if this has been posted already, but the Agenda for the 2/10/2015 press/public briefing is now posted on the NAS/IOM website at http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Public Briefing Agenda.pdf

Here is the page on the website that links to the Agenda.
http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx

I am having trouble copying and pasting the Agenda, so perhaps someone else can do this?

 

[Denise]

Agenda for IOM release: