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

Status
Not open for further replies.

rvallee said:
I wonder what the stutter was about. If you watch the video, he hesitates and stutters several times before saying ME.
Click to expand...

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.




I'd really like to know what's happening behind the scenes, how this is discussed and in relation to decades of pointed denial, especially the refusal to do anything beyond the bare minimum in the last few years. Medicine can be about as secretive as the Soviet politburo, lots of things happening about us that we are denied any right to know or have input. A terrible unaccountable system, in my opinion. That needs to change completely and ASAP.
Click to expand...

Yes
 
Last edited:
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

Child psychiatrist Scott Krakower tested positive for COVID-19 back in mid-April, but three months on there are still days he feels overwhelmingly tired, short of breath, and unable to speak because of a hoarse throat.

The 40-year-old New Yorker is among a wave of patients being referred to as "long-haulers," whose recovery period extends far beyond the two or so weeks that are the average length of the illness.

He told AFP there are days he encounters "self-skepticism," wondering if the symptoms he's going through are real and he should be back at work -- until, for example, he takes a walk and his parents or wife who are on the phone with him notice he's gasping.
Click to expand...
Scientists aren't quite sure why this happens, but, said Glatter, it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.

Krakower says that he was initially anxious to get back to work and to his life, but now "I'm really happy I took the time, and I continue to because each week that has gone by has been such a big difference."
Click to expand...
Glatter emphasized it was important for people experiencing these ongoing symptoms not to succumb to "medical gaslighting" where other people or the patients' themselves attribute the illness to anxiety.

"This is real," he said. "This is not in people's heads. This is what people live every day, what they post online.

"People are having therapy sessions because it's affecting their lives in such a way that they can't function as they normally would."
Click to expand...
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.
 
Last edited:
adambeyoncelowe said:
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
Click to expand...

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 -

  • Put pants and trousers on at the same time and then pull them up together.
  • Put skirts on over your head.
Click to expand...

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.
 
Last edited by a moderator:
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.
 
Last edited:
Invisible Woman said:
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.
Click to expand...
It might be easier with boxer shorts? :P
 
I'm pretty sure I've never put a skirt on over my head.
Perhaps we could combine the two bits of advice.
cartoon-white-boy-pretending-to-be-a-super-hero-with-underwear-on-his-head-by-toonaday-56094.jpg
 
(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

1594445145581-png.38204


"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."
 
Dakota15 said:
(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

1594445145581-png.38204


"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."
Click to expand...

That picture of Dr F must be about 15/20 years old.
 
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."
 
Kalliope said:
"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."
Click to expand...

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.
 
Last edited:
Status
Not open for further replies.
Back
Top Bottom