News about Long Covid including its relationship to ME/CFS 2020 to 2021

Chagrin that it's come to this, or just that he's really completely new to saying Myalgic Encephalomyelitis in public. Perhaps, he should stand in front of a mirror in gradually increasing temporal increments and practice until he can say it with confidence.

Yes

 

Recording of Sunshine 106.8 FM interview
19-minute interview. Listen back at
<https://www.sunshineradio.ie/podcas...pisode/covid-19-and-chronic-fatigue-syndrome/>

Sarah O'Connell discussed a potential link between Covid-19 and Postviral Fatigue Syndrome/ME/CFS

https://twitter.com/user/status/1282114951000317953

 

Very interesting to see Fauci mention me/cfs. But, I think what matters, is what he says about it as we approch the magical transmogrification deadline (thanks for the word @chrisb) when early post covid might actual qualify as me/cfs. Perhaps, September. Because he has developed quite a following in the last few months. Does he speak strongly and supportive about it? Or is he furtive and ambivalent. He almost brought us into relevance (where we are relevant) during the largest focus on medicine in recent history, but I fear it might end like that. Just an obscure mention in one interview never to be heard from again.

 

'This is real': COVID-19 long-hauler's months of agony

https://au.news.yahoo.com/real-covid-19-long-haulers-months-agony-182714545--spt.html

Medical gaslighting has to be made illegal. It's what lead us here, leaving us vulnerable to threats we knew about and simply chose to dismiss. It is still blocking the path towards solving this. I really hope psychiatrists experiencing this will force some change within the profession, but it will have to be made illegal, it's immoral and simply wrong.

 

Discussion in the wild of Fauci's comments. I don't see experts chipping in but the attitude is supportive and a tad bit fearful of catching it themselves. As usual, much more compassion from the general public than from the medical profession. So damn weird and wrong.

https://reddit.com/r/Coronavirus/comments/hplmh6/dr_anthony_fauci_says_that_postcovid_syndrome_is

 

The Royal College of OTs has done this guide with the Yorkshire Fatigue Clinic: https://www.rcot.co.uk/recovering-covid-19-post-viral-fatigue-and-conserving-energy

 

I've scanned them. While there's a fair bit I'd argue with, they aren't aimed at ME patients. For those with very mild ME, or other conditions they may well be fine. I liked that they pointed out that it is important to reserve some resources for things you enjoy. That is pretty important.

Then some strange stuff. This made me laugh out loud -

I know no surer way of getting myself (& my knickers) in a knot than trying to pull pants on at the same time - even if they are yoga pants. If you do manage it some seam or other is guaranteed to twist itself somewhere uncomfortable.

As for the skirt over the head business.....eh, no.

 

I do not own a skirt.

Now I've got to buy a skirt?

(I may still have a kilt in the loft somewhere if that's an acceptable substitute - but I'm pretty sure it would be impossible to put on over my head, so maybe not)

 

Just saw this event on the other forum. Fauci is doing a "fireside chat" with the dean of Stanford medical school tomorrow morning, and it will be live streamed.

Anyone can submit questions in advance (see link below). Hopefully he'll receive more questions about the possibility of ME and/or PVFS as a result of COVID.

StanfordMed LIVE Featuring Anthony Fauci
Dean Lloyd Minor will host the government's leading infectious disease expert – Dr. Anthony Fauci – for a virtual fireside chat that contextualizes COVID-19's recent resurgence, highlights our path to overcoming the pandemic, and answers your pre-submitted questions.

Date: Monday, July 13

Time: 10:30–11:00 am

Submit your questions here

Watch LIVE
Please note: Internet Explorer no longer supports the livestream platform. If you use Internet Explorer, please access this event by copying and pasting this URL https://livestream.com/accounts/1973198/events/9190750 into a Firefox or Chrome browser.

Date and time subject to change due COVID-19's quickly changing conditions.

 

So we believe that Fauci says that post-covid syndrome is highly suggestive of ME. Do we now know what he considers ME to be?

 

It might be easier with boxer shorts?

 

Or none

 

(my fault, totally just saw this is a duplicate post)

Just sharing from a post I saw on Phoenix Rising:

Stanford (California, USA) is hosting a "fire side chat" with Dr. Fauci on Monday. There is an opportunity to submit questions on the link below. I just submitted a question on Covid-19 long-haulers & ME/CFS patients. Would be great to keep the momentum towards Dr. Fauci and have him continue to address ME/CFS publicly. As we know Stanford is involved with their ME/CFS clinic & research initiatives, my hope is that they would offer these questions submitted to Dr. Fauci pertaining to ME/CFS on this platform.

https://docs.google.com/forms/d/e/1FAIpQLSeYFOJvthaVpuiDRphUZ6cR5h7sz5L3Z5TNn74X2GflvQ5K1Q/viewform



"Join Dean Lloyd Minor as he hosts a virtual fireside chat with Dr. Anthony Fauci

Date: Monday, July 13*

Time: 10:30 a.m. Pacific Time

Dean Lloyd Minor will host the government's leading infectious disease expert--Dr. Anthony Fauci--for a virtual fireside chat that contextualizes COVID-19's recent resurgence, highlights our path to overcoming the pandemic, and answers your pre-submitted questions.

Submit your questions now!

Click here to access the livestream.

If you use Internet Explorer, please see the note below.

Please note: Internet Explorer no longer supports the livestream platform. If you use Internet Explorer, please access this event by copying and pasting this URL - - into a Firefox or Google Chrome browser.

*Date and time subject to change due to COVID-19's quickly evolving conditions."

 

BBC: Coronavirus doctor's diary: Why are people remaining ill for so long?

But more likely, these long-haulers are experiencing a prolonged and exaggerated immune response to the original infection, on top of the damage caused to their lungs and other organs.

Our challenge as doctors and researchers is to find out more about what causes these long-term effects and then develop treatments that help these patients, and others with similar post-viral chronic fatigue. This is a neglected area of research, because it is so difficult to find answers, but Covid-19 has been an incredible catalyst for science and discovery, and the spotlight on these long-haul survivors may help advance our understanding.

...

"In the clinic we're running we're going to be having a dietician, a physiotherapist, as well as a lot of psychological input, because patients are developing the cardiorespiratory complications, but they're also developing post-traumatic stress, anxiety, depression, and they've got neurological symptoms and chronic-fatigue-like symptoms.

"And so how we can support them, how we can set programmes in place - either psychological programmes or rehabilitation programmes - is going to be really important. And we need good evidence about what works."

Rob Whittaker, a consultant clinical psychologist, says waves of tearfulness among Covid-19 survivors are very common and there is "an emerging picture" regarding cognitive difficulties, such as Molly's problems with her memory.

"But it's really hard at the moment to tease apart what's to do with fatigue and emotional, or what might be more organic. It's too early to say."

 

Pity Whittaker equates the fatigue with emotion ☹️

I remember feeling very weepy in months 3 and 4 after onset and then it stopped, while the other symptoms continued. I've always been the calm one in a crisis so it was a very weird experience.

 

Several LongCovid on Twitter are saying that symptoms resolved completely between 100 and 120 days post infection. I expect any research studies won't have blood samples to cover these crucial early weeks.?

 

What would have been the crucial blood work taken in the early weeks?