Long Covid in the media and social media 2022

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https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-61338227

Long Covid: I'll take trial drugs because I want my life back

Long Covid has stolen Kate Stott's life.

Since catching coronavirus in March 2020, the mother-of-three, 35, has lost her business, her health and precious family moments with her children.

She knows well the moment everything turned: "I went to bed with a sore throat two years ago, and that was it."

She told BBC Radio Scotland's Drivetime programme: "I still wake up every morning wanting to do it all.

"I still want to be the mum that takes them to school, I still want to be the one that picks them up from school. I still want to run around the park with them at the weekends and I still can't quite believe that's not me."

When Kate, from Aberdeen, first fell ill there were no tests. She pushed through.

"I worked from my bed," she said. "Nobody knew how ill I was. I kept it to myself to keep the business going."

Kate has now been officially diagnosed with Long Covid. She has to use crutches to get around.

"The neuro symptoms are the worst - when you are experiencing brain fog, forgetting people's names, not being able to help the kids with their homework, that's when you start to worry. I really didn't feel in control."

Kate has now seen a series of different specialists: "I had to see a rheumatologist for my joints - I couldn't move - the gastroenterologist, a heart specialist and most recently, a neurologist.

Some of those specialists she has had to see privately and Kate has spent more than £2,000 trying to get better.
 
https://www.independent.co.uk/news/uk/long-covid-symptoms-omicron-uk-cases-b2072944.html

Long Covid is limiting the ability of 1.2 million people in the UK to undertake day-to-day activities, the Office for National Statistics (ONS) reports.

That figures represents 67 per cent of the 1.8m long Covid cases in the country, where people have symptoms persisting for more than four weeks after first catching the virus.

One in five sufferers say that their daily activities were particuarly badly affected, with 346,000 people saying they were ‘limited a lot’ .

Fatigue continues to be the most common symptom reported as part of individuals’ experience of long Covid, with 51 per cent saying they had experienced it, followed by shortness of breath (33 per cent), loss of sense of smell (26 per cent), and difficulty concentrating (2 per cent).

The 1.8m people with long Covid, as of April , amounts to 2.8% of the UK population.

235,000 people have been suffering from the condition for at least two years after they first caught the virus.

791,000 have had long Covid for at least a year,

1.3m for at least 12 weeks and

382,000 for less than 12 weeks.

Around one in three people caught the virus before Alpha became the main variant; one in four each in the Delta and Omicron periods and around 14 per cent in the Alpha period.
 
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Can long COVID shift attitudes towards chronic fatigue?

"‘What if I never get better?’

This thought must have passed through the fevered minds of many who have caught COVID-19, including the 3 million people in the latest UK weekly estimates. For an unlucky proportion, COVID-19 is developing into chronic symptoms that include fatigue.

The reality of ‘long COVID’ emerged when some people continued to suffer complications and symptoms for weeks, then months, now turning into years. As the majority recover and move on, health, research and wider societal policies must respond humanely to their needs – and those of hundreds of thousands also suffering from long-term fatigue known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

https://www.healthpolicypartnership.com/can-long-covid-shift-attitudes-to-chronic-fatigue/

Author on Twitter.
 
Ugh, reading this makes me feel so sad. I’m sorry there’s a paywall so I pasted the text here, but you don’t see all the article photos. I’m just so tired of seeing stuff like this so much reinventing the wheel, so much thinking this is new when it’s not, no saying same as ME/CFS when the symptoms are the EXACT SAME as what these people are experiencing.

San Francisco Chronicle: Millions of people suffer from long COVID. Why is there still no treatment?
Shelley Hayden of Sonoma has a case of long COVID so serious that her “brain is broken,” she said. The 54-year-old marketing coach asked not to be interrupted in conversation so she wouldn’t lose her train of thought.

[...]

Patients say they feel caught in the quicksand.

“The approach to caring for people with long COVID is so bad,” Hayden said. “I’ve been teaching my doctors!”

Recognizing the need to wrestle the problem to the ground faster, President Biden announced on April 5 a National Research Action Plan on long COVID. It’s a public and private collaboration that will build on Recover, a $1.15 billion initiative from the National Institutes of Health to coordinate long COVID research at sites across the country, including UCSF and Stanford.

[...]

Scientists are gradually discovering more about the syndrome, said Dr. Steven Deeks, co-principal investigator with UCSF’s research study LIINC, or Long-term Impact of Infection with Novel Coronavirus. LIINC alone has published 18 papers, including a small new one suggesting the COVID drug Paxlovid can ease persistent symptoms.

Researchers point to three likely causes of long COVID: bits of virus that remain hidden in the body, persistent inflammation caused by the coronavirus, and autoimmunity — when the body’s own immune system turns on itself.

These, in turn, wreak havoc in four main ways, Deeks told state lawmakers at a hearing in March. They cause neurological symptoms like confusion, debilitating fatigue, cardiovascular problems, and a unique condition called POTS — postural orthostatic tachycardia syndrome — where the heart races when the sufferer stands up.

[...]

“I knock on the doors of all the drug companies saying, you guys have got to get involved,” he said. “They say, OK, fine, we’re committed. But how are we gonna basically prove to the FDA that our drug works?’”

Dr. Larry Tsai, who heads Genentech’s respiratory and allergy product development, told The Chronicle that clinical trials to see if existing drugs can be repurposed for long COVID “are likely to begin soon.” But new drugs? Not yet, he said. Such trials “await better scientific understanding of the underlying cause” and clearer recognition of who would best respond to them.

[...]

Among the long COVID treatment trials funded by the federal government include studies of how cannabis, magnetic resonance imaging, and even singing might help. So far, most are small.

“It’s a really exciting area of research. However, we need to conduct well-designed and rigorous studies,” said Dr. Lisa Geng, co-director of Stanford’s long COVID clinic.

[...]

“Her case is pretty severe,” said Dr. Michael Peluso, clinical lead and co-principal investigator of LIINC, where many participants, like Hayden, have “post-exertional malaise.”

It basically knocks her flat. She and others compare their experience to the equally mysterious “myalgic encephalomyelitis,” or chronic fatigue syndrome.

When she “crashes” every few weeks, she says, “I feel like I’m crawling. It’s hard to stand up. Hard to walk across the room. And you don’t feel rested after sleep” because her joints hurt during the night, she said. And there’s brain fog. She’ll start a word — say, “couch” — and it cuts off as “cou.”

Absent any treatment from doctors, Hayden and other long COVID sufferers turn to each other for remedies.

[...]

Beyond that, she is astonished that people have abandoned masks.

“Don’t you understand?” she asked, directing her message to the public. “You could be disabled for life.”

Nanette Asimov is a San Francisco Chronicle staff writer. Email: nasimov@sfchronicle.com Twitter: @NanetteAsimov
Edited because of copyright.
 
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Just watched the CBC (Canada) news this morning and PHAC (Public Health Agency of Canada) are studying how many Canadians have long-Covid. They've stated that there are over 100 symptoms, 'mostly fatigue, anxiety and PTSD".

I can see where this is going.
 
Oh no, that looks pretty bad. CBC is reporting:

The most common [symptoms], according to PHAC, are fatigue, memory problems, anxiety, depression and even post-traumatic stress disorder.​

and

"Long COVID symptoms can be quite broad and non-specific, and so depending on the questions and the questionnaire, you might elicit different answers," Tam said.
We might be able to guess which kinds of answers they'll be eliciting.
 
Meanwhile in Spain where long Covid was focus of a recent discussion at an International Congress of the Spanish Society of Precision Health:

Medscape COVID-19 Infection Has More Than 50 Long-Term Effects

"Unfortunately, we are not taught or used to prescribing exercise. Based on all this evidence, it is obvious that it should be incorporated into the prevention of and approach toward not only COVID-19 and post-COVID-19, but in general, for the care of cardiovascular and metabolic health, both to prevent diseases and as an adjuvant in many pathologies."

Regarding what type of activity is most recommended in these patients, Martínez pointed out that "there is sufficient evidence to suggest that adapted and supervised training with aerobic and strength endurance exercises can be an effective multisystemic therapy for post-COVID-19 syndrome."

In this sense, Martínez stressed the need to value the importance of strength training. "Although a good part of the population practices aerobic activity, the percentage drops when it comes to strength routines, especially among women, since they associate it with the risk of excessive bodybuilding. In the case of post-COVID-19, this training is essential, since one of the most worrying signs of this syndrome is the loss of muscle mass.

"A little more research is required in this field, but without a doubt, it is a perfect tool to counteract and manage the multiple signs and symptoms that persist after having suffered from COVID-19," Martínez concluded.
 
Imagine telling a cardiologist and pulmonologist that you're still suffering from a litany of symptoms, including exhaustion, shortness of breath, headaches, joint pain et and they both rule out other health problems and advise exercising, suggesting that some symptoms may have been a result of being out of shape.

I've seen this mentioned several times on Twitter from pwLC.
 
Imagine telling a cardiologist and pulmonologist that you're still suffering from a litany of symptoms, including exhaustion, shortness of breath, headaches, joint pain et and they both rule out other health problems and advise exercising, suggesting that some symptoms may have been a result of being out of shape.

I've seen this mentioned several times on Twitter from pwLC.

This happened to me after worsening to severe following Covid. Cardio recommended intense physio... The rehab team called me and said no way are we putting someone with LC through this.
 
Dr Asad Khan on Twitter
"V potent & simple exercises to reduce sympathetic overdrive. Instant relief. (Do not do on a full stomach). You do not have to have anxiety to benefit from these vagus nerve activating manoeuvres. #LongCovid #MECFS #Lyme #POTS #Fibromyalgia #MCAS #HSD #EDS"

 
Dr Asad Khan on Twitter
"V potent & simple exercises to reduce sympathetic overdrive. Instant relief. (Do not do on a full stomach). You do not have to have anxiety to benefit from these vagus nerve activating manoeuvres. #LongCovid #MECFS #Lyme #POTS #Fibromyalgia #MCAS #HSD #EDS"
I have just watched the video. It's just a set of 3 simple stretching exercises for the neck and back with the aim of easing muscle tension that tends to come with anxiety. I have no idea whether the stuff about the vagus nerve and brain rewiring means anything in this context. I rather suspect it's a lot of blah.
 
Dr Asad Khan on Twitter
"V potent & simple exercises to reduce sympathetic overdrive. Instant relief. (Do not do on a full stomach). You do not have to have anxiety to benefit from these vagus nerve activating manoeuvres. #LongCovid #MECFS #Lyme #POTS #Fibromyalgia #MCAS #HSD #EDS"
One thing I take away from that twitter thread is that filtering blood to remove microclots didn't fix Dr Asad Khan's Long Covid.
 
Dr Asad Khan on Twitter
"V potent & simple exercises to reduce sympathetic overdrive. Instant relief. (Do not do on a full stomach). You do not have to have anxiety to benefit from these vagus nerve activating manoeuvres. #LongCovid #MECFS #Lyme #POTS #Fibromyalgia #MCAS #HSD #EDS"
I also noted from a pic from another tweet, (sorry now can’t find it) that he had a wire that appeared to be attached to his ear (the tagus), the placement for vagus nerve stimulation which fits with all the Polyvagal Theory promoted in one of Gez Medinger’s YouTube with Dr Riggs.

I suppose the next stop on the “road to recovery” will be neurofeedback because apparently this can rewire the brain too.:laugh:
 
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