CDC ME/CFS Stakeholder Conference Call February 13, 2020

[Gemini]

Mark Your Calendars

Thursday February 13, 2020

3 p.m. – 4 p.m. Eastern Time

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call

Call number: 1-888-603-7036

Participant Code: CDC MECFS

Please mark your calendars for the next Centers for Disease Control and Prevention (CDC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Stakeholder Engagement and Communication (SEC) Conference Call.

The call will feature brief updates on CDC’s ME/CFS activities by Dr. Elizabeth Unger, Chief Chronic Viral Diseases Branch, followed by a live Q&A session.

Dr. Jennifer McQuiston, Deputy Director of CDC’s Division of High-Consequence Pathogens and Pathology, will moderate the call.

Members of CDC’s ME/CFS program and division leadership will be on the call. We look forward to your active participation.

A transcript will be available following the call.

Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore, please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

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If you would like to be notified of future calls, please send an email to MECFSSEC@cdc.gov.

Contact for MECFS-SEC Conference Call: MECFSSEC@cdc.gov

 

[Gemini]

CDC Spokesperson Dr. Jennifer McQuiston has expertise in tick-borne diseases, Q fever, and typhus.
https://www.cdc.gov/media/spokesperson/mcquiston/index.html

 

[Gemini]

Bump, conference call is tomorrow. Live call-in.

In previous calls, questions could also be submitted to the CDC mailbox: MECFSSEC@cdc.gov.

 

[wabi-sabi]

Hello All,
I just listened in on this call. It was quite fascinating and had both positive and negative points. There's a new publication that may be promising on ways to measure fatigue properly- so no more of the "Everybody's tired, so get over it"
abstract link is here: https://www.ncbi.nlm.nih.gov/pubmed/31506915

On the down side, CDC still can't seem to disavow CBT/GET and even went to far as to claim that those words have been confused and no longer have any meaning. If you've ever had these perpetrated on you, you know exactly what they mean, and its not the same as pacing as CDC seems to imply. Also, one of the experts that is presenting the Medscape classes has a history of promoting CBT/GET and CDC does not seem to understand that this is a problem. I was thinking of ways to work on this and wondering if David Tuller can help.

Does anyone have any good thoughts?

 

[Gemini]

I just listened in on this call. It was quite fascinating and had both positive and negative points.

Thanks for the link to the fatigue study @wabi-sabi.

Getting David Tuller involved in the GET/CBT issue is a good idea, perhaps @Countrygirl would know if he's contacted the CDC in the past about it or on other issues?

Was interesting Dr. McQuiston couldn't moderate having been called away to respond to the coronavirus emergency. A caller asked whether CDC studies outbreaks like coronavirus to identify the types of infections that trigger ME/CFS.

Dr. Unger's response that it doesn't have the resources to do that was very disappointing. Maybe advocates like @Emily Taylor at Solve and Ben H at #MEAction can take up that key issue.

 

[AdventurerSarah]

I listened. It was my first CDC call and I found it pretty discouraging. They clearly don't understand how severe this illness can be. There's no urgency. Lots of talk about how school nurses are going to help manage it, and 300 people or something watched a one-hour online class. Really self-congratulatory when none of these efforts are going to pay off for me or other homebound patients any time soon.

I usually try to be more upbeat, and I have hope that other organizations will make progress. But I probably won't listen to another CDC stakeholder call unless I hear that something changes there.

 

[ScottTriGuy]

Was there no singing this time to go with their dog and pony show?

If any of those CDC people had severe ME for just one day, the very next day resources and funding would start flowing.

I wish severe ME upon them.

 

[Gemini]

If any of those CDC people had severe ME for just one day, the very next day resources and funding would start flowing.

Agree with you, @ScottTriGuy, @AdventurerSarah.

Here are questions I submitted to the CDC mailbox before the call and Dr. McQuiston's re-assignment:

Questions for Dr. Unger:
1. Given CDC's mission to protect America from health, safety and security threats by "conducting critical science" and "providing health information", how many CDC scientists are currently working on the "cause" of ME/CFS and "preventive measures"? What state-of-the art tools are they using to investigate potential infectious, autoimmune and/or immune deficiency triggers?

2. A scan of PubMed indicates you co-authored 23 papers in 2019, 21 of them on HPV, and 2 on ME/CFS neither addressing "critical" ME/CFS research needs, i.e., its cause, needed diagnostic tests, treatments and preventive measures. And in MCAM's nine-year existence only one paper has been published, three years ago on partial data. What institutional changes are required to increase CDC productivity and focus it on critical ME/CFS research needs? For example, more funding, more manpower?

3. Regards MCAM, are the clinicians using the "Laboratory/Investigative Protocol" recommended in the International Consensus Primer for Medical Practitioners 2012? Reason for asking, the MCAM paper describes limited patient laboratory testing whereas a broad panel of tests would provide a more robust basis to identify symptom patterns, abnormalities, and orient treatment.

4. At the 2019 IIMEC14 Conference Mehlsen presented data on HPV vaccine-induced ME/CFS. Will you be following-up on his research to better understand in general the vaccine-induced ME/CFS subgroup?

Questions for Dr. McQuiston:
1. A recent 2019 Q-fever study involving mitochondrial-derived peptides compared Q-fever and ME/CFS patients (PMID 31088495). In your opinion are there opportunities for additional joint research projects to investigate the biological basis of both diseases? If yes, how might they be defined and initiated?

2. If one doesn't exist would it be possible for CDC to develop a comprehensive "ME/CFS Communications Plan" encompassing special meetings, press releases, newspaper/magazine articles, TV/radio pieces, professional society conference presentations, etc. to raise awareness and interest in the ME/CFS research being conducted at the CDC?

 

[ScottTriGuy]

Excellent questions @Gemini

They deserve answers.