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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New blog - CDC’s Staged Call


Senior Member
In 2012, The U.S. Centers for Disease Control and Prevention (CDC) instituted the “ME/CFS Stakeholder Engagement and Communication conference calls (SEC)” (previously called PCOCA) series with the stated purpose of sharing information with those interested in ME/CFS as part of their regular outreach and communications efforts. These calls are billed as a form of engagement with the community, but this is just by name –not reality.

CDC’s Phantom Engagement
CDC’s claims of transparency and stated desire to engage with the ME/CFS community is debunked by their consistent underhanded actions. Their “engagement” call is, in fact, an hour-long one-sided communication. CDC placed all callers – a group of very sick disabled people – in a silent mode for the hour-long call. CDC falsely alleged they can’t take live calls when many large government events take live questions all the time.

CDC’s 60-minute call devoted 50 minutes to their invited speakers – leaving only a couple of minutes in the end to cover the many crucial questions sent in by ME patients and advocates. CDC kept us in the dark as to whose questions they selected – never giving us the actual names.

Read blog here


Senior Member
Some questions that CDC did not answer -
CDC did not answer these questions – among many others:
Question for Dr. Bateman – from Gabby Klein

You were an author of the 2011 International Consensus Criteria (ICC) which recommended removing CFS from ME. The ICC states the following: “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric”.

You were an author of the IOM criteria as well which stated regarding coding: “A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”

Since the IOM report did not ask to replace the WHO classification of ME, do you, therefore, agree that the IOM criteria do not define the disease Myalgic Encephalomyelitis (ME)?

Question for Dr. Bateman – from Colleen Steckel

The IOM panel was charged by its sponsor, HHS, to ”recommend clinical diagnostic criteria that would address the needs of healthcare providers, patients, and their caregivers.” In addition, in an interview with Phoenix Rising regarding the IOM criteria, Dr. Bateman stated: “SEID criteria are intended for current use, for doctors to do better at making the diagnosis in a clinical setting. There was no discussion of anything but using them for this purpose.”

Yet, NIH is currently recommending the use of the IOM criteria for their new ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants. Can you explain why new clinical criteria will now be used for research?

The expert criteria ICC would ensure the disease myalgic encephalomyelitis would be the focus of any studies.

Question for Dr. Unger – from Colleen Steckel

Are there any plans to address the concerns raised by MEadvocacy.org in their recent blog labeled “CDC’s Website Revision is No Reason for Celebration”?

Patients continue to be told by doctors that this is just a fatigue illness and refuse to look into immunological, cardiology, and neurological issues. Patients continue to fend for themselves with little care from mainstream doctors. This continues to lead to despair and suicide within the community. The CDC needs to do much more in order to change this reality.

Questions to Dr. Unger – from Eileen Holderman

What are the official case definitions for ME that CDC endorses for research and clinical?

As former CFSAC member and Chair of Subcommittee for CDC Website Review, when will CDC take down Toolkit and Resource Guide from the CDC website Stacks?

Questions from Guido Den Broeder

(1) Will you please once more distinguish between ME and CFS, as you did before?

Myalgic encephalomyelitis (at G93.3 in the ICD-10) is a specific post-viral brain disorder. Much is known about its causes, diagnostics, and treatment.

Chronic Fatigue Syndrome (R53.82 in the ICD-10-CM) is a term for unexplained fatigue and malaise. It is not a disease. In clinical practice, patients with a variety of diseases start out with a diagnosis of CFS, even though this is not a clinical diagnosis.

(2) What are you going to do to prevent ME?

Will Coxsackie B be added to polio vaccinations?

Are you going to follow mononucleosis patients and test their immune system for post-mono abnormalities?

(3) What are you going to do to reduce the clinical use of the CFS label?

Will you increase awareness among physicians of diseases such as ME, EDS, Lyme, Hashimoto, etc.?

Are you going to promote the clinical use of the SEID label as defined by the IOM?

Blog here - https://relatingtome.net/2017/11/16/cdcs-staged-call/


Senior Member
The topic was:“Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS” with Drs. Lucinda Bateman, Ellen Clayton, and Peter Rowe. All three speakers served on the IOM panel to create new government-sponsored criteria and a new name – systemic exertion intolerance disease (SEID).
After almost three years, the research expected to fix the SEID criteria has failed to materialize:
The committee recognizes that new and accumulating evidence will likely enable refinement of the diagnostic criteria proposed in this report and possibly define subtypes of the disease or even distinct entities. Ideally, diagnostic criteria should be updated when evidence supports a change in order to improve the identification and care of affected individuals (IOM, 2011). The need for reexamination could arise for a number of reasons. Evidence providing greater understanding of the etiology and pathophysiology of ME/CFS might facilitate more discriminating, efficient, or precise diagnostic approaches. Evidence validating either screening or diagnostic tools that are practical for widespread use by generalists might lead to improved identification of affected individuals and so warrant inclusion. And a demonstration of subtypes or even discrete disease entities within the current case definition might enable better prognostication and help target treatment approaches.

Given the current pace of scientific research,the committee expects that the criteria proposed here may warrant reassessment in the not too distant future. Therefore, the committee recommends continuing surveillance of the evidence and revisiting of the criteria in no more than 5 years (emphasis added.)
CDC foot-dragging, aided and abetted by Dr. Unger’s multi-site study, is such a disgrace! Let’s recognize the refinement represented already by the ICC.


Finally you are all awakening, somebody is paying to keep the charade since the CDC has been on in it from beginning. I am inclined to believe that something happen with some vaccine and they are still trying to control the narrative, Who knows the real reason but the charade is so obvious that I am glad people are starting to stop thinking is that they are stupid, they know exactly what they are doing. Question is why / who....


Senior Member
They are still trying to control the narrative, Who knows the real reason but the charade is so obvious that I am glad people are starting to stop thinking is that they are stupid, they know exactly what they are doing.
The only thing that changed when Dr. Unger took over from Dr. Reeves was the tone:
Patients resented his resistance to changing the name of the syndrome to something that sounded more medically legitimate than “chronic fatigue.” They also deplored his use of a case definition that many said cast too wide a net and included people who had depression, not chronic fatigue syndrome.

“He was a very talented and brilliant man who was very opinionated and often did not express his opinion with tact,” said Dr. Elizabeth R. Unger, who succeeded Dr. Reeves as chief of the chronic viral diseases branch at the disease centers (http://www.nytimes.com/2012/08/09/health/dr-william-c-reeves-who-sought-cause-of-fatigue-syndrome-dies-at-69.html?_r=2).
Dr. Unger was setting her own stage back then.