Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Stussman, Nath et al.

Andy said:
Code: 
https://twitter.com/PlzSolveCFS/status/1324822651144200195

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A reminder that this webinar is today, Wednesday 2nd December. 1pm EST, 6pm GMT.

I plan to watch it if I manage to remember at the right time. I hope others will too - I'd like to be able to discuss it.

I have sent a question asking how they define PEM, and have received a reply saying it will be asked in the Q&A.
https://www.s4me.info/threads/a-per...their-pem-study-2020.17148/page-2#post-305150

You need to register to watch it. Just click on the link in the tweet and you'll receive an email with the link.
 
From Wallit:
Even in the middle of the pandemic, the research activities of our ME/CFS study have continued. While we have
not been able to travel participants to NIH because of COVID-19, we have accrued enough participants to
perform our first major analyses. Research Working Groups have been convened to focus on the Clinical,
Pathophysiology, Immunology, and Bioenergetic aspects of the data we have collected with the goal of
synthesizing these together into a unified understanding.
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From Nath:
Dear Friends and Colleagues,
We are living in unprecedented times. The current pandemic
has had a major impact on all academic institutions including
the NIH. We had to stop recruitment of patients to the ME/CFS
study. However, we used this time as an opportunity to start
analyzing the data already collected on the patients recruited
thus far. At the same time we predicted early in the pandemic
that we would see an upsurge in new patients with ME/CFS
due to COVID-19. Even before people began to realize that
patients were developing overlapping symptoms with ME/CFS
which has been termed Long-Haul COVID we began
developing protocols to investigate these patients. These
protocols are now functional and we have started recruiting
patients to these studies. Additionally, I have taken this
opportunity to raise awareness of this condition and have
advocated for more research for the condition in numerous
interviews with major news outlets and in a testimony to the
Congressional Neuroscience Caucus. We remain strongly
committed to get to the bottom of this condition and we hope
that in the near future we will be planning clinical trials to treat
ME/CFS and Long-Haul COVID. Where there is a will, there is
way!
Best,
Avi
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That says to me they have decided to stop recruiting for the ME/CFS study and recruit for a long covid study instead. Of course it looks like some long covid patients are developing ME, so there is likely to be an overlap.
 
Trish said:
That says to me they have decided to stop recruiting for the ME/CFS study and recruit for a long covid study instead. Of course it looks like some long covid patients are developing ME, so there is likely to be an overlap.
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I understood they were doing two studies:
  • The in-depth study on ME/CFS where recruitment seems to be temporarily halted due to the coronacrisis.
  • A study on COVID-19 patients to see if they will develop ME/CFS
I would think that recruitment for the first study will continue if the coronacrisis allows this again.
 
You may be right, @Michiel Tack.

I took the fact that they have stopped recuiting for the ME study (and say they have enough data) and have started recruiting for the Covid study to mean that they don't intend to restart the ME study, but to use long covid patients who fit the ME defintion as the remaining cases for the ME study, or possibly as a comparator group. If they really wanted more non Covid ME patients, I don't see why they can't go on recruiting them, given that they can recruit long covid patients.
 
Trish said:
The Webinar hosted by Solve about this research is now available on YouTube
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I watched it. It's a fine study. The work is clearly professional and high-quality. These people are pros doing fine work.

But the aim is sooooooooo low it may as well be for nothing. The equivalent of a squirt gun to a raging forest megafire, zero chance of affecting outcomes in any meaningful way.

So really without COVID19, or an alternative pandemic happening eventually, this was never going anywhere, research is simply not happening at NIH. The work is fine, but it is so small it's just the same as nothing, like throwing a penny towards world hunger. It's better than nothing, but it has the same outcome nevertheless.
 
It is small and slow but a big factor in this is the struggles to recruit participants. This is why I think the ME community in the US and even elsewhere should try as much as they can to highlight the call for participants. People are getting ill all the time so this needs to be done regularly rather than once or twice.
 
ME Research UK

Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is
profoundly debilitating and often unpredictable. A study from 2020 has
explored the experiences of PEM in individuals with ME/CFS, both in
daily life and following cardiopulmonary exercise testing, aiming to
gain a better understanding of the types of symptoms, onset patterns
and duration.

Read more: https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-1

https://twitter.com/user/status/1754444764856922444
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