Webinar: Scientific Research on ME/CFS in the Age of COVID-19 - Hanson, Lipkin, Nath - Oct 26th, 2020, 6 to 7pm ET.

https://jaxmecfs.com/2020/10/14/webinar-on-scientific-research-on-me-cfs-in-the-age-of-covid-19/

 

Glad to see Nath involved more in these things. Sometimes I wonder if this was some sort of punishment to him, but this may end up defining his career in a positive way.

 

Bumping this as it's taking place today

 

I watched. Dr Lipkin shared that he still had after effects of COVID, mostly fatigue. He is rehabbing through exercise. Said he didn’t get COVID while in China, but believes he got it during a television interview.

From the presentation of Dr Avi Nath, there will be a study examining the long term symptoms of COVID. I have taken screen shots, will share Dr Nath’s slides for now.

 

Part 2 of Dr Nath’s presentation:

 

Dr Lipkin’s slides (i may have missed one) part 1

 

Dr Lipkin part 2

 

Dr Lipkin part 3

 

Maureen Hanson spoke first and stressed the dangers and risk of permanent damage from exercise on people with ME. Then in Ian Lipkin's presentation he said he hadn't recovered from COVID-19 but that exercising with a personal trainer had helped him a lot. This was weird as given it was an ME & long COVID presentation it certainly would have made sense for him to explain further. Perhaps he thought it was self explanatory that he doesn't have ME? He did make some comments that I interpreted as him indicating that he had a better understanding of what ME feels like now though.

 

Here is Dr Hansen’s slides (part 1) and to be noted, indeed dr Hanson went first, then dr Lipkin, then dr Nath

 

Part 2

 

Dr Hanson part 3

 

I think, for some people, ME takes a while to evolve. On my doctor's recommendation, I tried to exercise my way back to health on a stationary bike just a couple of months after onset. I desperately wanted to get better, so I really tried hard for more than a month [It didn't help at all]. I don't recall feeling PEM at this point, but I got significantly worse over the next year. It was really only several years later, after I had improved somewhat, that I began to notice PEM (probably because I was exerting myself more and it was easier for PEM to be noticed among "background" symptoms that had lessened in severity somewhat). To tell the truth, I wouldn't even hear of "PEM" until decades later. All I knew was that if I did anything out of the ordinary, especially if it involved prolonged standing, I would feel "wiped out" the next day, as if I was coming down with a bad flu. So one's susceptibility to PEM may depend on where you are in terms of the evolution of the disease - and the timeline may be different for different people.

It's just my two cents, but, if I were Dr. Lipkin, I wouldn't feel too sanguine about having the capability to exercise at this point. What he should be concerned about is if all the exercise is not leading to the level of improvement he would expect under normal circumstances.

 

I agree with you @Forbin. Back in the early days, because i was believed to be lazy and faking illness for secondary gains, i went for a run as i did in the pre-illness days. I was determined to prove them i was not lazy. It was really weird because i could not run as before, i had to alternate run- walk, highly unusual for me, considering i could run uphill for 20 minutes (i live at the bottom of a big hill). Also i remembered my first days of orthostatic intolerance. I figured i was feeling better laying down, and significantly worse when standing. When i got to explain this to my family doctor, she wanted to prescribe anti-depressants, that i was lazy and i was not sick.

i flew 7 hours to a competent physician to be diagnosed with POTS. And back home my GP still did not want to believe it.

 

I did not listen to the presentations, so perhaps it's folded into those, but I could not find anything definitive in terms of cohorts' distribution through the US. My sense, based on the slides, is that a majority are from within the US, and of those, most come from the NorthEast/MidAtlantic Regions, and Western US. Also, I appreciate some are post-covid patients.

Lipkin's slide on infectious causes of ME/CFS intrigued me for a couple reasons.

First, he rules out some diseases as causes of ME/CFS, and I'd be curious to know by virtue of what tests he reached those conclusions. Did he test tissue, for instance?

Secondly, he highlights - literally - New York State, but on his list of infectious diseases to explore as contributory to ME/CFS, no where do we see any number of Borrelia species and strains, or babesia, or rickettsia, or bartonella....Which as a group, and in some areas it can be argued, individually, are ravaging the NorthEast US, and in particular, New York State. I know he's familiar with these, as his Tick Borne Disease Serochip (sp) kit suggests. For all you folks from the UK, this may seem like an unfair question, but I can assure you, in the US, and specifically in the MidAtlantic/NorthEast US, NOT looking at all the different tick-borne pathogens as possible causes for ME/CFS seems like a giant head-scratcher. Afterall, many are endemic here. Lyme, babesia and a certain type of rickettsia were first stumbled upon, according to some, off Long Island, NY back in the late '60's. Pretty much everybody in the NE US knows somebody who had at least one of those infections.

I know Lipkin was looking at this whole TBD thing, as was what's-his-name from southern California. But, sorry, if they ruled all of them out, I don't remember ever being informed how those pathogens were ruled out, i.e, by what procedures.

I can assure you, in Lyme World, key Lyme investigators have been for close to 25 years claiming that patients thinking they had Lyme, didn't, but instead, after being infected with Lyme, were cured, and now had CFS. So, there is plenty of precedent for that sentiment. I'm left wondering why he didn't at least include one or two on his slide.