CDC ME/CFS Stakeholder Conference Call June 3, 2019 - POST-CALL DISCUSSION

[Gemini]

CDC MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call June 3, 2019

Time: 3:00 pm – 4:00 pm Eastern Daylight Time

• Participants can either call in using the following information:
  • Call number: 1-888-790-3359 | Participant Code: 4299828
• Or join the meeting using the webinar format by clicking the link, or copying and pasting it into your browser.
  • https://adobeconnect.cdc.gov/r7s9zv5127w6/

If you have never attended an Adobe Connect meeting before, it is recommended that you test the connection before the call date:

• Test your connection: https://adobeconnect.cdc.gov/common/help/en/support/meeting_test.htm
• Get a quick overview: http://www.adobe.com/products/adobeconnect.htmlexternal icon

MEETING AGENDA

3:00pm Welcome and SEC Call Overview
3:05pm Updates from CDC – Elizabeth Unger, PhD, MD Branch Chief, Chronic Viral Diseases Branch, Centers for Disease Control and Prevention
3:15pm “Pacing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia” Alison C. Bested M.D. FRCPC Diplomate, Integrative Medicine Associate Professor and Chair Integrative Medicine Institute for Neuro-Immune Medicine, Nova Southeastern University, Fort Lauderdale, Florida
3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC

 

[Gemini]

Bump. Conference call is tomorrow.

Questions for the speakers can be submitted ahead of time to: mecfssec@cdc.gov

My two questions submitted for Dr. Unger:

1. When is CDC going to release to the public the results of its 7-site study?

2. What scientific work is CDC doing to uncover ME/CFS triggers? For
instance, is CDC investigating flu triggers among other pathogens? (ref:
2015 study in Norway associating pandemic influenza A (H1N1) with ME/CFS.)
And Ian Lipkin reports discovering enterovirus triggers in Acute Flaccid Myelitis
and plans to use the same new technologies on ME/CFS; will CDC collaborate?

 

[Wally]

Call just ended. Not sure if people will comment about the call, but there were some interesting things mentioned in this call about “pacing”. I am sure there were also things that people did not like about this call.
Perhaps comments re the call can be in this thread or perhaps a new one. Maybe a Forum moderator can see that comments re this call are grouped together and the title of the thread will alert Members where these discussions can be found.

Audio of call and slides will be available. Perhaps this info. can be added to this thread and any discussion thread. Anyone have that link to add, please do so.

 

[perrier]

I did not listen: but pacing must be for folks who are mobile; for those bedridden, or mostly so, how do you pace????? Better if we get a treatment soon, no?

 

[Dakota15]

So, uh, that was....not very helpful from this seat.

I feel like I'm a preschooler where I just had a song sang to me (because they did) and was told to meditate. What a time to be alive.

Maybe others will have different thoughts but I can't recall a conference call or webinar that I felt like that in some time - I truly respect the pacing / meditate aspect but to beat it into the ground is a whole other idea. Certainly there had to be better usage of this time as well as more pressing information to cover / share, no?

 

[Wally]

@Dakota15 and @perrier - My initial reaction to the CDC devoting a teleconference to “pacing” re ME/CFS was to mutter a few less than pleasant words that even made my dog cringe. I have had the unpleasant experience of a reporter interviewing me and not explaining that she was going to be writing an article about ME/CFS that was going to focus on pacing. I felt a bit betrayed that the thoughts/experiences I had about dealing with this illness were twisted to fit the slant to a ME/CFS story that she or her editor decided would be worthwhile to print. I was really royally p.o.’d because I think “pacing” has been used by many in the medical profession to diminish the seriousness of the illness that I refer to as M.E.

With that as my preface to commenting here, I was pleasantly surprised by some of what Dr. Alison Bested presented during this call about “pacing”, but definitely cringed at the end of the call when she broke out into song. I must be feeling a little more generous in my thoughts today because I did not unleash another tirade of naughty words to awake the sleeping dog resting at my feet, but I do think this addition of her musical talents to her talk was ill advised for many in the audience who may have M.E. that falls into a moderate/severe category of illness. Yes, I did feel like I had somehow ended up attending a pre-school sing-a-long. OK - I will be truthful - I did blurt out - WTF!

Then the kinder gentler side of me said that maybe this was her way of trying to communicate something positive to those patients in the audience that might benefit from something lyrical. I don’t know the patients she has seen or treated, so maybe in her practice she has found that people respond to this approach?

So, if I disregard what I considered an ill advised songfest at the end of the call, I think she had some good explanations about what pacing is all about and why it may give some symptom relief or energy improvement to a certain group of patients. I personally know that adjusting my activity level and being aware that when I am pumping out adrenaline I will pay a price for this energy surge. Hitting the adrenaline switch does not work all the time, but when it does it is an amazing feeling and it becomes almost addictive to want more, even if just a few more precious moments of life/energy.

From her talk, I finally get the physiology behind how some patients can have these remitting and relapsing episodes based on energy consumption triggering a cascade of downstream problems. I also think the way she has developed a tracking system for the energy expenditure could be helpful. Jury is still out on this one, but I would love to hear from other patients, who have been diagnosed with M.E. and who suffer from moderate to severe symptoms, if they have or have not received relief or improvements in some of their symptoms using the techniques she suggests.

Since, I was multi-tasking while listening to this call (got do what you got to do when time and energy are not on your side), I did not hear her talk about how “pacing” is anything more than one tool to use for some symptom relief. But at the end of the talk I had a sinking feeling that she might have been saying that by proper “pacing”, patients could heal themselves? Did she say or imply this or did my lack of total concentration on the call lead me to forming impressions that might not have been accurate? My personal opinion is that this biologically complex illness can’t just be “paced away”.

I also thought it was really disappointing that no time was left for patient questions. If you solicit questions from people (especially from patients who are ill and only have limited amounts of energy to try to participate in these calls), then why do you not keep your word and allow enough time for those questions to be asked and answered. Dr. Unger/CDC - I put this little hot potato right back in your lap. You got some explaining to do because this is becoming the norm to not allow enough time to answer patients questions. Usually, I think we at least get graced with a few hand picked questions - nothing controversial of course, but seriously no time for any questions from those who suffer from this devastating illness???

Wally

 

[Seven7]

Is funny I just did a video on how pacing is not treatment! I understand the importance of it, and I understand not
To hurt ourself more, but is a bother when it is used as the end of all cures! Because life does not stop. Try pacing w a 2year old and all the crap around that happens. She runs into a streat, you run after and there is the few weeks long crashed! So we need some PEM management soon, and not pACINg, we cannot control all the variables!

 

[perrier]

Is funny I just did a video on how pacing is not treatment! I understand the importance of it, and I understand not
To hurt ourself more, but is a bother when it is used as the end of all cures! Because life does not stop. Try pacing w a 2year old and all the crap around that happens. She runs into a streat, you run after and there is the few weeks long crashed! So we need some PEM management soon, and not pACINg, we cannot control all the variables!

Super post. We need real help, and very soon. Some of these well meaning types don’t really understand this horrific illness, even with Unrest on the scene, and lots of other material. Urgency is just not felt!