What is the real question the IOM is asking?

[K2 for Hope]

In regards to the real question the IOM is asking of the "stakeholders", it needs to read from the original email as they have not requested our input on whether they maintain the contract, but the following, which we, as a community, need to respond to. We can argue all we want about the contract. The fact is they have it and if we do nothing, don't complain about the results. If we present our most important aspect or information to the IOM, then, whether we like the results or not, we have done the best we can. (In the email, it is my bold and my underline.)

They have never asked how we feel about the contract or whether we like it. All of that is covered under several other threads. So, if you have an opinion about what you feel is the most important aspect or information for the presentation, please state it. Otherwise, if you would just like to challenge how the American system works, please take it to another thread.

(Please see Jenny Spotila's blog about this here)

http://www.occupycfs.com/2014/01/20/at-the-microphone/

The IOM Question:

“What is the most important aspect or information that this committee should consider throughout the course of the study?”


Original email:


Dear Ms. Luoto,

The Institute of Medicine (IOM) has been asked to convene a committee of experts for a consensus study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. More information about the study can be found in the attached Statement of Task. The committee will meet several times throughout the course of the study and the first meeting will be held on January 27-28, 2014 in Washington DC. On the afternoon of January 27, the committee will hold an information-gathering session that will be open to the public, both in-person and virtually.

This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to clarify the scope of the charge (as outlined in the Statement of Task) with the study sponsors; learn more about separate yet relevant research efforts in the field of ME/CFS; and to seek input from patients, caregivers, health care professionals, and other stakeholders.

We recognize that many people are interested in this study and would like to provide input or share their concerns, so we plan to provide multiple avenues for participation. Interested individuals may register for and attend the open session in-person in Washington DC or participate virtually (details for virtual participation will be provided closer to the meeting date). We cordially invite you, as a representative of Phoenix Rising, to speak to the committee during the afternoon session. If you are interested, we ask that you prepare 5-7 minutes of remarks in response to the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”

Karen Luoto
President
Phoenix Rising an NEID Corporation

 

[K2 for Hope]

Also, everyone should know what their "Statement of Task" is.

**************************************************************************************************************************************

Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

STATEMENT OF TASK

An Institute of Medicine (IOM) committee will comprehensively evaluate the current criteria for the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The committee will consider the various existing definitions and recommend clinical diagnostic criteria for the disorder to address the needs of health providers, patients and their caregivers.

The Committee will also distinguish between disease subgroups, develop a plan for updating the new criteria, and make recommendations for its implementation. Any recommendations made by the committee will consider unique diagnostic issues facing people with ME/CFS, specifically related to: gender, across the lifespan, and specific subgroups with substantial disability.

Specifically the Institute of Medicine (IOM) will:
 Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients;
 Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;
 Recommend whether new terminology for ME/CFS should be adopted;
 Develop an outreach strategy to disseminate the definition nationwide to health professionals.

Over the 18 months, the committee will consider 4 topic areas and produce a consensus report with recommendations. The recommendations will have a domestic focus, however, major international issues may be identified. As the committee reviews the literature, efforts that have already been completed on this topic area will be considered, including the 2003ME/CFS Canadian Consensus Definition, the 2007 NICE Clinical Guidelines for CFS/ME, the 2010 Revised Canadian ME/CFS definition, the 2011 ME International Consensus Criteria, and data from the ongoing CDC Multi-site Clinical study of CFS. In an effort to minimize overlap and maximize synergy, the committee will seek input from the NIH Evidence-based Methodology Workshop for ME/CFS.

 

[SilverbladeTE]

"What is the real question the IOM is asking?"

Answer: "How can we bamboozle, delay, fudge, keep our asses out of touch or reproach, how can keep these dumb schlubs in the Mushroom Treatment, how to keep sucking up Public funds for doing as little as we possibly can in easiest way we can find?"


That's what ALWAYS goes on with these kind of things, sans the few folk who're really trying to help, but the scumbags "Establishment" douchebags ALWAYS make sure such folk are minimal and marginalized
a lifetime of watching how governments operates proves this time and time again..

 

[K2 for Hope]

Not that I don't agree Silverblade, but we have a few people trying to put a presentation together and they wanted to get community input....

 

[WillowJ]

it might be good to mention the need for a specialty. Other similarly highly complex diseases like Lupus and multiple sclerosis are never diagnosed by a primary care physician. A PCP might suspect such a disease and may even order initial screening testing, but would always refer to a specialist for confirmation.

They may need to recommend the creation of a specialty in order to accomplish this.

This would speak to the "outreach strategy" portion of the SoT

 

[SilverbladeTE]

K2
I know
But some time ago, our leaders realized they needed to stop change, democracy, civil rights etc, it was getting in their way
since the thug methods were to obvious, they just choke it all to death with hot air and doing less than nothing....

you CANNOT win playing their game. They will bureaucratically filibuster one way or another until the cows come home, or rather we all die out, the kids with ME die out and then the entire population dies out in the catastrophes their many such actions have been rolling downhill for some time now.
Only massive unexpected change of some type that catches them off guard, that they cannot twist, will change things.
a whistleblower, many major respected scientists kicking verbal ass and taking names as they show proofs, a terrible outbreak or some such.

please forgive my cynicism and seeming roughness if you can
I'm really a much more cheery, nicer person than I might seem, it's just long experience and digging into crap had shown how it really is. I know folk are working hard on this and my words are...not kind on their sacrifice and effort :/

It is very nice now and then when some victory is scored or decent person exposes terrible wrongs or even, one of the "suits" finds his heart again.
But the "Mass" is a sick evil sludge of nepotism, stupidity, wilful blindness, greed and collective cowardice :/

 

[taniaaust1]

What is the most important aspect or information that this committee should consider throughout the course of the study?”

That for ME people nearly all those CFS studies are mostly irrevelent to us and our disease.

I want them to keep in mind throughout the course of their study of just how sick the ME group is.. many of the severe ME group get bad complications of this disease.. time spent due in hospital due to its complications etc. All of which basically havent been studied either.

I can rarely go a year without ending up in hospital due to this disease be it accidently OD due to confusing my pills, due to POTS, due to double pnenomia, due to one hellish ME crash etc (and thats only the stuff which has had me end up in hospital). I didnt have to have ambulance coverage before I got this disease, now I have to take out extra ambulance coverage as the once a year coverage of my health insurance isnt enough.

I think there are many of us at PR who have complications from this illness or having to have quite aggressive treatment for the ME. You never hear about that in "CFS" stuff.

As another person here said.. there needs to be a speciality allocated to ME so doctors in that speciality can be trained in our illness. No GP can handle severe ME.

 

[Undisclosed]

Not that I don't agree Silverblade, but we have a few people trying to put a presentation together and they wanted to get community input....

The input has been provided on this thread.

 

[K2 for Hope]

The input has been provided on this thread.

Thanks, Kina. I couldn't find the original email from the IOM posted anywhere so, I wanted people to see exactly what the IOM is asking from Phoenix Rising.

Also, the "Statement of Tasks" had not been posted, so I wanted everyone to have an idea of what the IOM is also tasked with completing.

And, it was getting difficult to read through 10 pages of "what we really want to say to the IOM", instead of "what is the most important aspect we would like to convey in 5 - 7 minutes" to the IOM for them to complete their Statement of Tasks.

 

[Undisclosed]

Thanks, Kina. I couldn't find the original email from the IOM posted anywhere so, I wanted people to see exactly what the IOM is asking from Phoenix Rising.

Also, the "Statement of Tasks" had not been posted, so I wanted everyone to have an idea of what the IOM is also tasked with completing.

And, it was getting difficult to read through 10 pages of "what we really want to say to the IOM", instead of "what is the most important aspect we would like to convey in 5 - 7 minutes" to the IOM for them to complete their Statement of Tasks.

I posted the "Statement of Task" on the thread here. This was on page one. We provided a summary of the thread later on in the thread on page 8. Starting a new thread on this is very confusing. Interested members have already stated what they want us to say on the other thread.

 

[Iquitos]

IMO the most important thing the IoM should do is to adopt the CCC or the ICC, which has already done the tasks this committee is charged with.

Secondarily, they should abandon the reductionist theory of medicine whereby researchers and doctors assume there is one cause to each symptom and one magic bullet/drug/treatment that should fix everything (and if it doesn't, there is something wrong with the patient's response instead of the treatment being inadequate.) They need to embrace the understanding of the synergy of the pathology-causing aspects of the disease and embrace the search for a synergistic method of treating it.