Schmidt International iECHO: Long Covid Patient Perspective

The latest Schmidt Initiative iECHO Long Covid zoom two days ago is by Hannah E. Davis, MPS, the co-founder of the Patient Led Research Collaborative (PLRC).

She got Covid-19 in March of 2020. Her first sign that something was really off was that she couldn’t read a text message. She thought that most people recover in two weeks so didn’t do much about it. She went on to clotting and neurocognitive problems and MECFS.

Her job and expertise were in machine learning data sets. As she realized that she was really sick and was not improving, she also realized that Long Covid was not even on the radar for physicians, overwhelmed by the acutely ill and dying. She started the interdisciplinary team co-led by four women and with over fifty patient researchers. The group is 61% women and 70% disabled.

They published an op ed piece about the body politic in the New York Times in April of 2020. By May of 2020 they had a fifty page article out documenting that even mild cases of Covid-19 could cause long term impacts. They describe multiple symptoms long term, not just respiratory. They also noted and documented medical stigma happening and were instrumental in changing the dialog from anecdotes of non-recover to data about non-recovery.

In June to August of 2020 they appealed the the World Health Organization (WHO) with a video message presenting data about long term effects.

In December of 2020 they presented a paper characterizing Long Covid. There are now 3-4 biomedical papers coming out each day.

She states that there are multiple myths about Long Covid: “It’s mysterious, we don’t know anything about it.” is not true. She listed other myths, but I have to go back through the slides.

The group is still highly active in research and is advocating for patient involvement in research. They have developed score cards for the level and quality of patient engagement. Tokenizing gives a score of -1 or -2, where instead of patient engagement in all stages of the research project, they are told “Come look at our final paper and give us the patient engagement gold star.” That is not adequate engagement. Other diseases have also made patients push for engagement in research: HIV, Parkinsons, PANDAS and more. Patients just want to get better and they want research that matters.

Worrisome data include that 10-12% of vaccinated people who get Covid-19 still can get Long Covid. This is less than the unvaccinated, but it’s still one in ten.

Their data shows that the majority of that 10-12% are not recovered at one year.

Another myth is that there is no treatment, but there are treatments at least for symptom management.

They published the Long Covid paper in the January 2023 Nature, documenting the many many symptoms and ongoing early stage treatments, many taken from other diseases such as MECFS.

One third of people who get Long Covid do NOT have preexisting conditions. It attacks all ages, women more then men, and prior infection may increase risk. Respiratory problems are more likely to recover, barring lung scarring. 43% of Long Covid patients report a delayed onset of neurocognitive symptoms.

Regarding mental health, research shows that stigmatization is still common and that patients who have experienced that are more likely to be depressed, anxious or even suicidal. In contrast, even one non-stigmatizing encounter, medical or family or friends, makes people have lower rates of depression, anxiety or suicidal ideation.

It is abundantly clear that this is a biomedical illness. Enabling google research will allow those papers to be delivered daily. I am on a list where I get daily reports of Covid-19 research and papers.

Next she talked about the current treatments, many taken from other similar illnesses. I have to say that the microclots scare me the most. There are clinical trials ongoing as well as amazing bench science, but meanwhile physicians need to listen to patients, believe them, pay attention to the ongoing research and help patients.

I spoke to a provider yesterday that I last saw two years ago. I said I wanted to work with Long Covid patients. “Good!” he said, “Because I don’t want to!” I think that attitude may be very wide spread.

I also looked at our county (and only) hospital’s page on Covid-19. There is not ONE WORD about Long Covid. Isn’t that interesting? Denial ain’t just a river in Egypt.

This is just what I got from the lecture. There was and is more. Physicians and patients can attend and they file the talks so that you too can watch them. Here:

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-global-echo.html

Blessings.

The path forward

Today I attended this zoom, the Schmidt Initiative for Long Covid Global Echo Webinar Series:

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-global-echo.html

Today’s topic is Cardiac Complications of Long Covid.

Whew, it’s hard to see the forest for the trees! It’s complicated! The first distinction is lungs or heart or both. The next is worsened or new measurable heart disease, which is distinguished from heart symptoms without testable heart disease.

Heart disease can include inflammatory heart disease, ischemic heart disease, cardiomyopathy, arrhythmias or clotting disorders. These are called PASC-CVD. PASC-CVD stands for Post Acute Sequelae of Covid-19 – CardioVascular Disease.

If those are ruled out, there are three major categories of PASC-CVS – CVS is CardioVascular Symptoms. One is postexertional malaise, a second is POTS (postural orthostatic tachycardia syndrome) and the third is exercise intolerance. They are all different and treated differently. The formal test for POTS is a tilt table, but for places that don’t have access, they recommended the BatemanHorne NASA 10-Minute Lean test, here. That is hugely useful! This is the international conference, in English with simultaneous translation into French, Spanish, Portuguese and Arabic. Very impressive!

I will write more about today’s lecture, but I am still trying to sort out the trees in this complex forest.

For the Ragtag Daily Prompt: forest.

I took the photograph this month hiking Mount Zion with my daughter.

opioids international

The US is not the only opioid crisis.

Reblogging:

https://www.groundup.org.za/article/woman-battles-escape-whoonga-park/

Living in the hell of Whoonga Park

Murder, rape, crime, homelessness, abuse by police … daily life for whoonga users

Photo of a woman holding a beaded South African flag
Nobuhle Khuzwayo doing bead work during life skills training at the Denis Hurley Centre. Photo: Nomfundo Xolo
By

“Siqalo used to be the most promising child in our house … the last born. He got the best of everything. We took him to better schools than we did his younger sister and brother. He did well for the better half of high school.Then he met up with the wrong friends, and never even got to matric,” Fanele Ngcobo tells GroundUp about his son.

Siqalo is 22. He has been a whoonga user since 2015. By 10am, he has already smoked his second fix. Without the drug he struggles to function. Withdrawal effects – which people refer to as “arosta” – include stomach cramps, vomiting, and extreme anxiety.

Whoonga is a mixture of marijuana and heroin and rumoured to contain anti-retrovirals, detergents and even rat poison. Active addiction has spread in KwaZulu-Natal townships such as KwaMashu and iNanda. Hundreds of people now live in Durban’s ‘Whoonga Park’,

Siqalo was a keen soccer player, says his mother, Sizakele. Now his worn, black soccer shoes peek out from under the bed in his old room at home in iNanda, Durban.

“He always went for practice with his friends at the local playground. But after a while, soccer wasn’t the only thing he and his friends were playing with; he was also experimenting with dangerous drugs,” she says.

Siqalo lives in so-called Whoonga Park, under a bridge next to the Berea railway lines in Durban. The park has become a den for whoonga users. They have bright beach umbrellas to protect them from the heat and black plastic bags for shelter. The activities under the bridge are in plain view. People trade and smoke. In the afternoons and at night, many take to the city streets to hustle for food and the money they need to buy their fix.

“There are no beds here. Even if you can get a blanket or sheet to sleep in, it doesn’t last a week. The police will burn it,” says Siqalo. “So it’s easier just to use cardboard and plastic as it is easy to find in the streets. Although I miss home, I cannot go back home like this. I need to be clean. My family doesn’t trust me around the house and for good reason because I’ve stolen their money and appliances too many times. I tried to be clean when they first fetched me, but arosta is too painful – nobody can understand. But I still want to go home.”

Cooked meals, showers and clean clothes

Nobuhle Khuzwayo from eMpangeni, KwaZulu-Natal, is one of those trying to get off whoonga. She attends the iSiphephelo Centre housed at the Denis Hurley Centre in Durban, where she gets cooked meals and clean clothes three times a week. For a few hours she is free of whoonga.

Co-founder of the centre Sihle Ndima says it is a place of safety for young girls and women living on the streets of Durban. It offers meals, counselling, clean clothes and showers.

“Many of them return back to the streets soon after classes, and the work we do seems like failure, because in the end they go back to using whoonga,” says Ndima. “We work with a rehabilitation centre in Newlands East, Durban, and they offer free help.”

Khuzwayo, who is 30, came to Durban seeking a job in 2014, but after numerous failed attempts, she was left homeless and desperate.

“The shoe factory I was working for closed down after a month. Thereafter it was difficult to get employment. I had been staying at the Dalton hostel with some friends, who later introduced me to smoking. They would tell me it was marijuana, but after becoming a frequent smoker … I would get headaches, pains and stomach cramps when I hadn’t smoked. I just could not cope without it. When I confronted them, they told me it was in fact whoonga. I was already deeply hooked,” says Khuzwayo.

She could no longer live at the hostel. She moved to Whoonga Park. To get money she would have to resort to sex work, crime or selling cigarettes. She found a boyfriend who sold cigarettes at taxi ranks to help get them food and the R30 a day they needed to buy whoonga.

“To survive on the streets, I got myself a boyfriend because you can’t survive a day alone under the bridge as a woman. There are men known as amaBhariya, who claim to own the spots in Whoonga Park. They do not smoke or deal the drug; they do not speak local languages or even English. They are ruthless. They rape and kill women under the bridge and make sure the park functions the way it does. They wear blue workmen’s clothes and hats and use the underground drains to move around. So if you don’t have a man to protect you, they will always take advantage of you,” says Khuzwayo.

Merchants outside the park sell whoonga for R30. “They are usually in the streets or in nearby flats but not many sell whoonga under the bridge,” she says.

Hundreds now live in Whoonga Park beside the railway lines in Berea, Durban. Photo: Nomfundo Xolo

Khuzwayo has now moved to a local shelter, paying R20 a night. Her closest friend had TB and when she died it was a turning point.

“I am tired of this life. I am determined to change. I don’t want to die a senseless death without dignity,” she says.

She is now a part-time cleaner at iSiphephelo. After attending all counselling and life skills classes she will qualify for rehab. “After rehab, I am going to go back home and stay with my sister in eMpangeni. You cannot stay away from whoonga in the city,” says Khuzwayo.

Siqalo and Khuzwayo say whoonga users are known as amaPhara. “Because we look like zombies. We’re dead people walking. We sleep standing. We stab you for your phone and sell it for a fix. Plastic and rubble is our shelter, faeces and rubbish are everywhere, and we run from police who destroy our things and chase us away every week. But we always come back. We can’t survive anywhere else,” says Siqalo.

Khuzwayo says she has seen people high on whoonga killed by trains.

“You can’t save them, because it’s like the railway shocks you, and you’re unable to move … seeing the train come at you but unable to run. I’ve seen some getting crushed in half and some losing their limbs. Even a security guard, who was chasing us one time, got stuck and the train crushed his foot.”

“One way or the other, you’re lucky to survive under the bridge.”

reblogged from: https://www.groundup.org.za/article/woman-battles-escape-whoonga-park/