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

Status
Not open for further replies.
The autonomic nervous system regulates the function of the body’s internal organs, such as heart rate, blood pressure, digestion, and body temperature. People with an autonomic disorder have trouble regulating one or more of these systems, which can result in fainting, lightheadedness, fluctuating blood pressure, and other symptoms.

So saying that pwME don't experience xyz symptoms isn't helpful for anyone trying to move forward.
 
I don't understand what Long Covid symptom she or others may have that can be treated by a drug therapy (trying to follow her argument) that would remain untreated if lumped in with ME.

These would have to be things that no person with ME ever had then?
 
Andy said:
https://www.virology.ws/2020/10/04/trial-by-error-more-on-the-royal-society-of-medicine-webinar/
Click to expand...
I am underwhelmed by Chew-Graham's comments and frankly doubt her sincerity. This is what she built for us, knowingly and willfully, no surprise there. This is the precise model she has built. She has seen the same consequences play out for years and saw no issue there. If she meant those words at all she would have admitted her failure with us. She did not.

I saw a comment the other day that I think reflects on this, that the problem with talking about health care being a human right, the problem is that not everyone's humanity is recognized. Chew-Graham has never recognized ours, in fact has personally contributed to more death and suffering than she can imagine, and continues to insult us with those ignorant comments about her role in this disaster. Those 20 COVID patients, they are a small blip in all that death and suffering she caused. It is only that she recognizes humanity in them that it affected her. But given the distribution of number of pwME affected vs. the number of BPS ideologues, she personally has so many more corpses on her conscience and gallons of blood on her hands. Empty words from hollow souls.

That other guy is a complete jackass, however. To actually defend PACE and GET given everything. EBM is far too interpretable, too open to opinionating. It has shown to be far more harmful than the meager benefits it may provide, which no one can actually quantify because the whole process is rotten.
 
Kalliope said:
The Times: Lingering coronavirus symptoms worse than death toll, says Professor Tim Spector

Article is paywalled.
Click to expand...
Even more so by the botched response. As usual, most of the harm is not caused by the illness itself but by the complete collapse of medical expertise in the face of an old problem that medicine has always dismissed as laughable, impossible, with casual disregard for consequences, even responding with mockery to those consequences. This is a unique situation in all the fields of scientific expertise, no one has failed worse at their given subject of expertise in all of human history. Willful ignorance is not a credible excuse.

It's good that the burden is recognized, but there is little hope this damage will be mitigated until then. All the mistakes are being committed again. This is what makes it all so much worse. Like firefighters bringing fuel to a fire. If it wasn't for the very particular circumstances of the Internet allowing for rapid organization and communication, medicine would have completely missed this again, would have mocked the silly people who convinced themselves a virus gave them organ damage, or what feels like it.

Still no sight of any change in a positive direction. Medicine is still barely catching up to the very first known facts. What an incredible failure.
 
I personally would like to see research projects with me folks and covid folks (who have no explanation for their symptoms and look ME-ish) but with the groups results kept separate, initially, to see what the differences and similarities are. I think it would very quickly tell us the situation. ME folks would be involved in more funded studies and covid folks would find out if their post viral symptoms are looking identical to M.E.
 
rvallee said:
I am underwhelmed by Chew-Graham's comments and frankly doubt her sincerity.
Click to expand...

I understand your perspective. I tend to be agnostic on motivations, at least publicly, whatever I might think. Professor Chew-Graham comes across as very sincere and thoughtful. Is she in fact? That's not my call. I can point out the contradictions and others can figure it out.

Added: Many people also compartmentalize very well. They can be completely sincere and empathic in one mode but blinded and unaware in others. I think it's probably very complex.
 
Last edited:
dave30th said:
I understand your perspective. I tend to be agnostic on motivations, at least publicly, whatever I might think. Professor Chew-Graham comes across as very sincere and thoughtful. Is she in fact? That's not my call. I can point out the contradictions and others can figure it out.

Added: Many people also compartmentalize very well. They can be completely sincere and empathic in one mode but blinded and unaware in others. I think it's probably very complex.
Click to expand...
I'm hoping to be surprised. But I'm assuming that Lucy will pull the football every time. It's a very reliable assumption.
 
chrisb said:
I suspect that we are also prone to breathlessness but recognise the risks and pace to avoid them. It takes several years experience.
Click to expand...
I've always been slightly out of breath for years, mild air hunger, but I hardly bother because it's just at that level where it's barely noticeable. Which seems to be on a different level from COVID, where it is severe and we know can degrade significantly. Definitely no waking up at night gasping for air. I never checked my 02sat, never knew it was something to check for. So many things we don't know simply because nobody checked.

I get winded out simply doing light chores almost immediately, but I have no energy to keep doing them anyway so I rarely reach that point where I am gasping from air, just slightly breathless for a few minutes. So since I have other constant limitations, I don't think I've ever bothered mentioning it, I hit other limits first. Not that anyone has ever done more than glance at my list of symptoms, another reason not to bother mentioning something that is secondary.

We badly need a few studies, or a large high-quality one, about symptoms, pretty much like the Body Politic one: listing many minor ones but also allowing for write-ins. Broadest coverage possible, all of them, in-depth. I don't think that's been done since Ramsey and that's seriously absurd. This obsession with limiting everything to fatigue and ignoring all other symptoms have created a space of total ignorance.
 
Long-term Health Consequences of COVID-19

https://jamanetwork.com/journals/jama/fullarticle/2771581

However, postacute COVID-19 syndrome is not just observed among patients who had severe illness and were hospitalized. In a telephone survey conducted by the Centers for Disease Control and Prevention among a random sample of 292 adults (≥18 years) who had a positive outpatient test result for SARS-CoV-2 by reverse transcriptase–polymerase chain reaction, 35% of 274 symptomatic respondents reported not having returned to their usual state of health 2 weeks or more after testing, including 26% among those aged 18-34 years (n = 85), 32% among those aged 35-49 years (n = 96), and 47% among those aged 50 years or older (n = 89).4 Older than 50 years and the presence of 3 or more chronic medical conditions were associated with not returning to usual health within 14 to 21 days after receiving a positive test result. Notwithstanding, 1 in 5 individuals aged 18-34 years without chronic medical conditions had not yet achieved baseline health when interviewed at a median of 16 days from the testing date.
Click to expand...
Under "Neurological":
SARS-CoV-2 can penetrate brain tissue via viremia and also by direct invasion of the olfactory nerve, leading to anosmia. To date, the most common long-term neurologic symptoms after COVID-19 are headache, vertigo, and chemosensory dysfunction (eg, anosmia and ageusia). Although stroke is a serious albeit uncommon consequence of acute COVID-19, encephalitis, seizures, and other conditions such as major mood swings and “brain fog” have been reported up to 2 to 3 months after initial illness onset.9 Past pandemics involving viral pathogens (such as SARS-CoV-1, Middle East respiratory syndrome coronavirus [MERS], and influenza) have involved neuropsychiatric sequelae that could linger for months in “recovered” patients, which can seriously threaten cognitive health, overall well-being, and day-to-day functional status.
Click to expand...

Under "Emotional health and well-being", because reasons:
Increasing reports of lingering malaise and exhaustion akin to chronic fatigue syndrome may leave patients with physical debility and emotional disturbance. Compounded by the psychological toll of the pandemic experienced population wide, individuals recovering from COVID-19 may be at even greater risk of depression, anxiety, posttraumatic stress disorder, and substance use disorder. These combined effects have the potential to result in a global health crisis, considering the sheer number of COVID-19 cases worldwide.
Click to expand...
Because illness malaise and exhaustion are clearly emotional health. Way, way too much opinionating going on in medicine. This system is so dysfunctional, no wonder it produces such horrible outcomes when such a poor statement of opinion can make its way through peer review at one of the leading medical journals in the world.
 
rvallee said:
Long-term Health Consequences of COVID-19

https://jamanetwork.com/journals/jama/fullarticle/2771581


Under "Neurological":


Under "Emotional health and well-being", because reasons:

Because illness malaise and exhaustion are clearly emotional health. Way, way too much opinionating going on in medicine. This system is so dysfunctional, no wonder it produces such horrible outcomes when such a poor statement of opinion can make its way through peer review at one of the leading medical journals in the world.
Click to expand...
Dysautonomia is clearly not a thing then
 
Virus can have lasting effects on health
One of the most insidious features of the virus is that many suffer prolonged symptoms, writes Professor Luke O'Neill
Click to expand...
https://www.independent.ie/world-ne...-have-lasting-effects-on-health-39526270.html

It can also be read here:
https://www.pressreader.com/ireland/sunday-independent-ireland/20200913/281565178176195

ME/CFS doesn't get a mention, but here are some extracts:
---
If you're not in a vulnerable group, you might even be thinking it would be no harm if you got infected. You might then be protected.

If you are thinking this way, think again. Listen to someone like Peter Piot. He is a world-famous virologist who did pioneering work on Aids and Ebola. Ironically, earlier this year he became infected with Covid-19. His immune system fought the virus, but then he noticed that symptoms were persisting. He had trouble breathing when he exercised.

He felt exhausted. And he couldn't think straight.

He talked about how frustrating it all was and how for a long time all he could do was "be a patient and rest". This went on for two months, and in that time he received many emails from people saying they had the same long-term symptoms.

There are now so many people reporting prolonged symptoms that they have been named 'long-haulers' and the condition they have has been dubbed 'Long Covid'. It is worrying doctors everywhere. They still don't know exactly how common it is, what's causing it, how severe it might get and whether any damage that happens might last for years.
Click to expand...
---
They are also asking them how they feel. A 54-year-old woman who still can't walk up a flight of stairs without becoming breathless said, "I feel like I'm 80 years old".
The Bergamo study has revealed that 30pc still have lung scarring and breathing problems. Another 30pc have heart abnormalities. But the list of symptoms goes on: short-term memory loss; leg pain; tingling in the extremities; hair loss; depression; and, most of all, severe fatigue.
Click to expand...
---
Overall, half of the people there who had the virus say they are still sick, with various symptoms. One person has said it's a bit like you wake up, throw a set of symptoms in the air, and see which ones land.
Those symptoms will be with you all day.
Click to expand...
 
Long Covid Could Be 'Bigger Public Health Problem' Than Covid Deaths
Those suffering with long Covid have reported breathlessness, chronic fatigue and brain fog – months after initially falling ill with the virus.
PA Media
05/10/2020 09:13am BST
Click to expand...

https://www.huffingtonpost.co.uk/en...emic_uk_5f7ad1e6c5b64b480ab05d55?guccounter=1

The report said the King’s College study indicates that around 10% of those taking part in the survey had symptoms of long Covid for a month, with between 1.5% and 2% still experiencing such symptoms after three months.

The authors said these appear to be the most reliable statistics on which to base a rough estimate of the scale of long Covid in the population, adding that, while there is no clear evidence about prevalence in asymptomatic cases, it is likely to be lower than these percentages.

The report said long Covid seems rare in those under 18 and over 65, with higher prevalence among those of working age. The median age of those affected is 45 and it affects women more than men.

“As Professor Spector says, long Covid is likely a bigger issue than excess deaths as a result of Covid, but, crucially, the risk must be considered alongside the economic impact and other health impacts linked to Covid restrictions,” the paper concluded.
Click to expand...

The prevalences above are larger than another quote from him while back which gave a prevalence of 0.5% among those who had Covid.

The piece also has a 6-minute video of short snippets of a UK woman with long Covid describing her life. She mentions at one stage that her GP don't know what to do with her and is considering sending her to a chronic fatigue clinic.
 
Status
Not open for further replies.
Back
Top Bottom