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

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Arnie Pye said:
Referring to post #3868 ...

This is the first reference I can remember seeing to an Institute which has Tony Blair's name tacked on. Since he is/was a politician and has no medical training his name being involved actually puts me off reading what has been published. I realise this probably makes me sound like I'm prejudiced against politicians - and to be honest, yes I am.
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I've never heard about this institute before either. Noticed a tweet about this paper on twitter that was retweeted by Long COVID Physio and thought it was interesting to see among other a call for a Long Covid minister. Seems they've at least involved some patients during the process.
 
Wyva said:
Is this Gwyneth Paltrow's Goop?
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She is famous for often promoting and selling pseudoscientific healthcare products (Goop is the brand) and has been criticized many times for this. I mean I am happy that ME/CFS and the possible link to long covid gets more attention, but I think it is worth adding what Goop is known for. :)
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Thanks for posting! I was going to post a similar comment.

For example, here's a review from 2018 of products sold on the goop website:
Dr. Jen Gunter said:
Objective: To identify evidence that Gwyneth Paltrow is correct in her statement that the website GOOP does not sell pseudoscience.

Materials and Methods: A search of the products sold on GOOP.com in the wellness section.

Results: Biologically implausible therapies and ill-researched products were identified. The majority of health products (90%) could not be supported by science.

Conclusions: There is no evidence to support Gwyneth Paltrow’s claim that goop is free of pseudoscience. In fact the opposite is true, goop is a classic example of pseudoscience profiteering. The bulk of their products are useless, but some could be harmful.
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One of Ireland’s earliest Covid cases still suffering symptoms one year on
https://www.breakingnews.ie/ireland...l-suffering-symptoms-one-year-on-1094854.html

"While her condition has improved since then, Ms Moore is still dealing with a range of symptoms including chronic fatigue, severe coughing, difficulty concentrating, inflammation, swelling, mouth sores and various aches and pains.
“I constantly feel like I’m being knocked back and knocked back. It’s really hard,” she said.
“The worst one would be the chronic fatigue. It’s a whole body thing. Your head is too heavy to lift off the pillow. Your arms are heavy and so are your legs.
“I would get that on top of my symptoms. So I had to try and find a balance between doing too much and doing too little.
“If I did too much, I’d be in bed for up to a week if I pushed myself too far. I would not be able to get out of bed.”
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“I can’t lift the kids from a standing position. I can’t bath them. I can’t do simple things like getting their dinner together.

“From day to day I have to assess what my energy is like. My energy dictates my ability to do anything. I constantly have to prioritise and make choices.

“If I decide I’m going to go for a shower, that might be my activity for the day. That means I can’t do something else.”
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Kalliope said:
Tony Blair - Institute for global change
A Long-Term Plan for Long Covid

Conclusion
It is almost six months since we last wrote on Long Covid. In one sense, a number of things have changed, with progress having been made in certain areas.

We now have a recognised diagnosis for Long Covid. Specific funding has been provided by the government, and specialist clinics have been set up. Through the work of Professor Spector, King’s College London and ZOE, we also have a clearer picture of the scope and scale of the problem.

In another sense though, few things have changed. Long Covid is a significant challenge and we remain in a position where we are not meeting the scale of the challenge with the requisite resources. Our conversations with key groups indicate that many people are struggling to get referrals to these clinics, with geographic proximity to a clinic a further barrier.

Long Covid sufferers are still struggling to access the right resources. While specialist clinics have been set up, they are too few in number. Funding has been given by government but not on the scale needed to match the growing need. Further and deeper research is also needed, particularly the effects of vaccination on those with Long Covid.

This report sets out how government can put in place the long-term plan we need to respond to the challenge of Long Covid.

Recommendations
  • Conduct further research on the causes of Long Covid, the best practices for treatment and the potential impact of Covid-19 vaccines on Long Covid symptoms.
  • Release additional Long Covid awareness campaigns or publicly support existing campaigns put forward by Long Covid support groups that target young people who may not be aware they can suffer from Long Covid regardless of their initial infection.
  • Provide additional funding for Long Covid clinics.
  • Expand the list of symptoms that warrant a Covid-19 test beyond a fever, new or continuous cough, and loss/change of taste or smell.
  • Monitor the prevalence of Long Covid by creating Long Covid patient registers and implementing Long Covid surveillance.
  • Continue to develop and refine Long Covid guidance for both patients and GPs.
  • Create a Long Covid taskforce charged with improving Long Covid care and the wider societal issues of Long Covid, such as its impact on employment, education and welfare.
  • Appoint a Long Covid minister to lead the government’s Long Covid response.
  • Recognise Long Covid as an occupational disease and compensate workers where necessary.
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(Also mostly time and rest but whatever)
 
Kalliope said:
IF THERE IS any reason for hope in the growing epidemic of long COVID, it is that some academic medical centers are taking these patients seriously and tailoring treatment to them. Medicine’s history with hard-to-identify chronic illnesses, particularly those that mainly affect women, has not been a good one. For decades now, marginalized patients who have felt mysteriously unwell—with ME/CFS, with post-treatment Lyme disease syndrome, with Ehlers-Danlos syndrome, and more—have banded together into activist groups to try to legitimize their suffering. The same is happening online in the long-hauler groups, which are full of patients who have been met with disbelief by local physicians. But the Mount Sinai doctors (along with collaborative teams in various other academic centers) have responded promptly to the problem. Recently, the NIH and the World Health Organization recognized long COVID as a syndrome that warrants more research.
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In my personal experience with ME, I find that the acceptance that ME is a real, debilitating, and physiological disorder from my family, work colleagues, doctors, researchers, etc, and legitimization of suffering is an important but all too little step.

It helped me a lot during the first few years. But in the end, none of it mattered all that much because I was still stuck with an ever worsening disorder sending me into more severe disability. I thought to myself it’s all well and good that everyone believes me, but that not enough anymore I’m past that and need real help.

I have a feeling LC people are going to go through the same phase. So it’s a good reason for hope that support is building and people are together with this, but if you only get that for years to come hope will be dashed after a while.
 
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About long covid in children. Paywalled article in a Swedish newspaper.

Läkarna om misstänkt postcovid hos barn: ”Katastrof om vi inte kan hjälpa dem”
https://www.dn.se/sverige/lakarna-o...hos-barn-katastrof-om-vi-inte-kan-hjalpa-dem/

Google Translate said:
Doctors on suspected postcovid in children: "A disaster if we can not help them"

For three months, Sweden's first team focusing on postcovid in children has been trying to understand how the virus affects young people in the long term.

Now they want more clinics to be started to investigate the children who do not get well.

- It is a disaster if children and young people are this unwell and we can not help them, says pediatrician Olof Hertting. [...]

In November 2020, Olof Hertting began receiving reports from adult healthcare. Patients examined for postcovid told that their children did not recover. At first he was not surprised. In his work, he meets such children regularly. Infections - both bacterial and viral - can affect the body many months after the illness.

- I hoped that it would be about a very small group and thought, maybe a little naively, that this was more a thing for adult medicine. But more and more testimonies came [...]

In a hurry, he and his colleagues, inspired by how adult patients with suspected postcovidity were investigated at the same hospital, built a team of pediatricians, pediatric nurses, physiotherapists, counselors, psychologists and a dietitian. [...]

The team expected that almost none of the children had a positive PCR test - for a long time, hardly any children were tested for covid-19. What surprised them was that there were also few who had measurable antibodies.

- We still know a little about children and antibodies, but there is research that points to differences in antibody production between children and adults, says Olof Hertting.

He and his colleagues had to go by other parameters: They looked at how the children became ill, if others in the family had been ill, and assumed that, in addition to the corona, there were few other viruses circulating during the first wave of the pandemic. The majority of the children were between 10 and 16 years old. Most girls. [...]
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If the thing that already exists is a possibility it could be a disaster... that we will neglect and not care for because it's already standard practice? Ok.

The same people saying that very likely already dismiss chronically ill patients experiencing the same as not a real problem, the "if" answered. Medicine is weird. Problems can be serious or not depending entirely on arbitrary circumstances.
 
Time - A Year Into the Pandemic, Long COVID Is Still Burdening Patients - and Their Caregivers

quote:
- One of the leading theories in the field is that some patients have an abnormal immune or inflammatory response, such that the immune system revs into overdrive, attacking the body in the process. Another hypothesis is that Long COVID is not a unique disease, but rather that a COVID-19 infection is a new trigger for myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral syndrome that comes with similarly long-lasting and debilitating—and baffling—symptoms. The National Institutes of Health in February announced that—with the help of more than $1 billion in Congressional funding—it would coordinate new research into Long COVID. The agency hopes to determine who is at risk and why and, ideally, develop new treatments.
 
The ABC in Australia had a report on Long Covid tonight. Given that the pandemic here was not as bad as other countries, they say Australia 'only' has around 1000 LC cases.

Disappointingly the program did not mention ME/CFS. And, of course, the journalist and doctors interviewed implied that this phenomenon had never been seen before.

https://iview.abc.net.au/video/NC2101H042S00
The story starts at 4:25

(I'm not sure if people outside of Australia will be able to view the video.)


Edit: see the link in @Colin's post below for a better link to the segment.
 
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