Livestream: Body Politic: Conversation with Dr. Nancy Klimas, Tuesday April 13th at 1pm PST/4pm EST

"Questions are now open for patients to submit in the Body Politic Slack group. And it will be live-streamed on the youtube channel:
https://www.youtube.com/channel/UCuMpekylMvYax3mCk9Cxw4g"

 

Is there a way to see it? I go to the link and it says it is livestreaming but can't see or hear it--

Success!

 

https://www.youtube.com/watch?v=yXnUW4HpJNs

 

Dr Klimas says that ME patients stop working because of cognitive difficulties and not primarily the fatigue. I am really astonished by this statement. It was rolling severe disabling PEM that stopped my daughter from working, not cognitive issues. And then as she tried to push through all this, there came a huge crash or relapse which relegated her to bed for months!

 

I am so grateful I got to see most of this excellent talk, with slides--a must see, I think, for current information as well as the need for those of us in the U.S to advocate for our patient community to be included in the very large research budget that the NIH is going to be allocating to various projects. Dr. Klimas warned us that the inclination at the NIH and CDC seems to be to focus exclusively on COVID survivors who were hospitalized and still have symptoms, rather than the majority of those with Long Covid who actually had "mild or moderate" illness and weren't hospitalized. She strongly feels that ME/CFS patients must be be included in the plans for these research projects, at least as one control group, and that the researchers and clinicians who will be focussing on Long Covid patients learn from the 30+ years of research and clinical experience that has already been done in our field. She is sure that they will benefit from what we have learned and feels very strongly that we should benefit from this research too after years of underfunding and neglect.

Dr. Klimas said that her lab has made much progress on developing an animal model, first for Gulf War Syndrome and now as well designed as they can make it towards ME/CFS, in order to find out how to reboot our systems out of the homeostasis of illness that we have been stuck in. Her lab has already succeeded in rebooting for the mice who function as the Gulf War models.

There was much more useful, up to date information in this concentrated, excellent presentation!

 

Just a personal note that it was indeed the cognitive and memory problems I fell into 26 years ago that made it irresponsible/impossible to continue in my job. I had the sleep problems, fatigue, drop in stamina and other symptoms indicating drops in various hormones, but it was the cognitive part that most drastically affected my life.

Another personal note is that I had a white German shepherd dog right at the beginning, with a beautiful face like my avatar's, who did more to help and comfort me than anyone or anything else. God bless the heart of a dog!

 

I returned to work 9 months after PVFS in 1992. I lasted less than 4 weeks. I could no longer walk in a straight line or hold myself up and became permanently disabled. I didn't have cognitive issues at that time.

 

Thank you for adding this. Did she offer any time lines?

 

I'm very interested in this cognitive issues problem. My daughter rarely had these for many years, it was PEM and sick feeling, poisoned feeling, but not cognitive issues. In fact, she tried initially to work from home. But the PEM and crashes eventually made it impossible, and then most of life was spent lying down enduring these horrid symptoms.

 

My cognitive issues started 10 years after initial onset when I was improving (again) and started exercising. For me it's an energy deficit. Every time I exercised and had PEM, my cognitive impairment gradually became worse. It took several years to become aware of this.

 

The cognitive/physical limit probably has a lot to do with the type of job one does. There is barely any part of my career that I could not have done as a disembodied digital copy of myself with access to the Internet (and legal status, if we're splitting hairs), so the physical was entirely irrelevant to having to stop working. Frankly the same with most of my future plans. Well, music aside, but that wasn't professional so it doesn't really count, only towards QoL.

But it's important to note the range and how everyone's experience is different and it doesn't mean anything untoward anyone. It isn't one or the other, it depends and it means nothing specific for any person.

 

My daughter's cognitive issues came on much later and more slowly. But she just told me five minutes ago that she could manage all the symptoms and somehow live, but she said there is one thing that makes it impossible to sustain this illness: exertion intolerance--which is then immediately followed by PEM. So, reading becomes limited, being on the computer is possible for only 10 minutes max, walking is not in the cards, for these are all rewarded with PEM, or if done too often with a horrific crash/relapse. Most of the doctors we saw just did not understand Systemic Exertion Intolerance, ever. Only Dr. Ron Davis seemed to get it, when he proposed calling the illness SEID. But the million dollar question is: why can the body not exert?

 

=========================
How do you give a mouse Gulf War? And would you give a mouse ME? Or exertion intolerance?

 

That parts easy according to the BPS model; all you have to do is arrange for the mouse to be aware they exist, and the mouse will then believe it has it.

 

Just taking a shower, getting ready for work and walking the 10 minutes to get there was all it took; the cumulative effort of normal every day activities on a regular basis. After 2 weeks of working, my equilibrium was off and all I wanted to do was lie down. I wasn't feeling fatigued. After 3 weeks of working, my brain became wired and I was unable to sleep. It felt like a freight train had taken over my brain and I couldn't get off.

 

@Perrier Best to listen to Dr. Klimas' talk, to find out what she says in this overview. The organization interviewing her, Body Politic, had trouble with the video until around 12:20 into it, so start then or a few seconds beyond and click on Play. My imperfect memory says she does not specify a timeline for them getting to the point when they learn how to reboot the system for those with ME/CFS, but it did not seem that far off for them to go from their mouse models to human subjects in experimental projects. I could try to describe more but it gets into far too much thinking and typing for me--Sorry! Much better to get your answers from "the horse's mouth" (look at those teeth) and Dr. Klimas.

 

@rvallee I really appreciated your humor above.

I also think it is important for us not to take in any competitive sense a "finding" a researcher might get about a symptom which might come first or the one that is the most derailing for someone's life. ME arrives at different times in people's lives and to different genders, genetic profiles, etc., for which the initial strengths and weaknesses vary. Also whatever physical "insults" and problems people have already been through vary too, so it makes sense that the course and sequence are going to show differences.

In Dr. Klimas' talk, I was interested to learn that a number of those with Long Covid are turning out to accrue new problems as time goes on. So that is the same experience I expect that most of us have.