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

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Kalliope said:
Sadly, research on the biological and neurological mechanisms of ME/chronic fatigue syndrome have been marred over the years by doctors and society believing the symptoms were imaginary.
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I would correct that by saying that it was obstructed and sabotaged. "Marred" does not come close to cover the breadth and depth of what happened, this was no ordinary failure of people not understanding something, but of deliberately and maliciously misrepresenting it to fit their personal convictions, then fabricating extremely weak evidence to support conclusions that had been promoted for well over a century.

Sabotaged, with full awareness of the reported consequences, which amounts to criminal negligence.
 
What is post-viral fatigue syndrome, the condition affecting some COVID-19 survivors?

https://theconversation.com/what-is...tion-affecting-some-covid-19-survivors-146851

Generally pretty good summary and history, though I disagree with that part:
Psychological treatments such as cognitive behavioural therapy or mindfulness might also help relieve some symptoms.
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There is no need for a special delivery system. Just tell it straight to people, give them the right information, give them the right support, do not mislead them, respect them and actually follow through on efforts to make significant progress and there is absolutely no need for additional support in the vast majority of cases.

There is no need to change how people think, they are not thinking wrong. Those who think this is a psychological or behavioral issue are, and if they need CBT for that than all the more power to them but that doesn't concern us, stop projecting your insecurities onto others.
 
History repeats itself because the people who learn lessons the hard way are not at the table to prevent the same mistakes from being committed by the very same people who committed all the same mistakes before and reject the very premise that they made any mistake whatsoever. How can we learn from the past if we don't even learn from the present?!

There is no fixing this for Covid without fixing the system that created this problem in the first place. The ideology that created this failure has a stranglehold on most current discussions, things cannot change without reforming the whole thing. Time will not help, it will only make those with long Covid easier to ignore. Especially while things are not counted and research is not seen as a priority, everyone seems to bet on some magical "rehabilitation" that not a single person has explained why, let alone how, let alone that this very approach has completely failed in practice for decades.

Unless that changes, the BPS/MUS/FND monster will eat these people whole, the ends justify the means and nothing else matters to these people, they don't check, don't want to hear bad news, they only want confirmation of their beliefs.

 
Dolphin said:
Here’s a UK GP with long Covid. Might be an interesting person to keep an eye on.



Indeed perhaps a list of doctors could be interesting to compile.
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Dr Peter Bagshaw is:

https://pjbagshaw.wordpress.com

Senior clinical fellow at Bristol University, Clinical Lead for mental health, dementia, learning disabilities and adult safeguarding at South Gloucestershire (now BNSSG) clinical commissioning group, Clinical Director for dementia and talking therapies at the South West Clinical Network, as well as editor at Chronic Conditions online magazine and freelance conference speaker.
 
Doctors with long COVID

Doctors who contracted COVID, and thought the symptoms would be over in weeks, tell Jennifer Trueland about their continuing pain, exhaustion and – sometimes – struggle to be believed
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Looks like doctors subject to the patient side of medically unexplained symptoms are not particularly impressed by the concept.

From the British Medical Association. This article basically debunks every single one of the tropes that had been pushed on us for decades. Interesting.

https://www.bma.org.uk/news-and-opinion/doctors-with-long-covid

Her own GP has been helpful and sympathetic, she says, but not everyone has found NHS services so understanding. For example, Kerry Smith, a salaried GP in Chichester, has spent around £3,500 of her own money on an MRI and other investigations, and a private consultation with a cardiologist, having hit a brick wall with local health services. The private tests revealed a variety of conditions, including angina, positional orthostatic tachycardia syndrome, and mild tricuspid and mitral regurgitation.
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At the very least I'm seeing growing recognition of POTS without the direct implication that it's clearly anxiety.
Dr Smith paid for private tests after finding local health services unresponsive. At one point, when her GP sent her to emergency care she went through a battery of tests but was told everything was normal and sent home. ‘I burst into tears – I was at my wits’ end; I felt nobody believed me,’ she says. ‘People don’t seem to believe what’s happening because they can’t see it in front of them and that’s the thing I’ve struggled with the most.’
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‘We got some really good data out of the sequential survey that the BMA has been doing with doctors, which asked some questions about long COVID. We had 5,650 people answer the question about whether they’d had COVID, and of that, 12 per cent have had a positive test, and 16 per cent believe they’ve had it but didn’t have a test because it was early on and tests weren’t available. Of those who reported having COVID, just under 30 per cent said they’d been left with physical fatigue, generalised shortness of breath, and about 18 per cent – 270 people – had been left with the brain fog and memory loss and generalised difficulty in concentrating.’
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Around a fifth had taken additional sick leave and 10 per cent had taken annual leave to give themselves more time before returning to work, he adds. ‘So around 30 per cent of doctors were affected beyond the acute COVID.’ This in itself is significant, he says, because doctors are less likely than other professions to take sick leave.
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More research is needed, he says, including into similarities with chronic fatigue syndrome, as well as awareness-raising about the public health implications.
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‘Since then, it’s been this ongoing saga of things not getting better. There’s been days when I’ve felt reasonable and been able to put on a pair of trainers and walk round the block. There have been days and weeks when I’ve just felt awful and spent all day in bed. The symptoms that have really dragged on have been fatigue – I’m a doctor and I don’t think I really understood what fatigue was until I experienced it, a feeling of just being like your whole body is drowning in treacle, inside and out, and you can’t make your body or your mind function. I’m somebody who, with my job, is used to having a hundred thoughts and making a hundred decisions at any one moment, and I was finding it impossible even to watch Netflix or listen to music. I was just staring into space.’
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All four doctors The Doctor spoke to for this article said they had learned from the experience of people with ME/CFS – particularly around the need to ‘pace’ rather than attempt graded exercise. It has also improved their understanding of this group of patients. ‘I think I was always sympathetic – now I can be empathetic,’ says Dr Ordys.

Dr Campbell has made a lot of progress but is still far from well. ‘I’ve been building up gradually. I had been trying to exercise but I found that exercise made me worse, so I’ve been adopting more of a pacing approach to my symptoms, so when I feel they’re coming on, I stop and rest.’
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One small caveat here, though: this is precisely what empathy is not. With empathy, one does not have to live the experience to appreciate its features and gravity. Empathy is supposed to bridge that gap, not happen out of personal experience's hindsight. With more empathy in medicine, we wouldn't be in this mess. Without people lacking in empathy, a universal feature in the BPS/MUS/FND ideology, this could have been entirely avoided.
 
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Long COVID: let patients help define long-lasting COVID symptoms
The terminology for long-lasting COVID symptoms — and the definition of recovery — must incorporate patients’ perspectives.

Breathlessness and fatigue are among the continuing and debilitating symptoms being reported by people with COVID-19 — often months after the onset of the disease, and often long after they have been declared recovered.

Researchers and clinicians have yet to agree on a name for these ongoing symptoms. The literature includes “post-COVID syndrome” and “chronic COVID-19”. Now, researchers, patient groups and those affected by the condition are urging that “long COVID” be used.

They are also calling for the definition of recovery from COVID-19 to be based on criteria that extend beyond just testing negative for COVID. People’s symptoms should be considered, too, such as chest heaviness, breathlessness, muscle pains, palpitations and fatigue, as Nisreen Alwan, a public-health researcher at the University of Southampton, UK, wrote in a World View article in August (N. A. Alwan Nature 584, 170; 2020).
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https://www.nature.com/articles/d41586-020-02796-2

 
John Mac said:
Long COVID: let patients help define long-lasting COVID symptoms
The terminology for long-lasting COVID symptoms — and the definition of recovery — must incorporate patients’ perspectives.



https://www.nature.com/articles/d41586-020-02796-2
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That was a really great editorial from Nature!! Accompanied with a picture from a #MillionsMissing demonstration :thumbup:

... although COVID is well known, long COVID isn’t — at least, not yet. It is crucial that those with the condition are listened to in a way that, tragically, people with ME/CFS were not.

The difficulties faced by people with ME/CFS and their representatives resulted, in part, from the fact that the patient voice was marginalized. This contributed to delays in the condition being recognized.
 
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And also
The difficulties faced by people with ME/CFS and their representatives resulted, in part, from the fact that the patient voice was marginalized. This contributed to delays in the condition being recognized. Sonya Chowdhury, the chief executive of the UK-based patients’ group Action for M.E., says that even today, ME/CFS is not well studied.

Moreover, the name chronic fatigue syndrome suggested a condition whose primary symptom was tiredness, when people’s experiences are both more painful and more complex. They commonly include recurring pain, which often fluctuates in severity; being unable to sleep; difficulty concentrating; and becoming exhausted after even relatively mild physical activity.
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Dolphin said:
Here’s a UK GP with long Covid. Might be an interesting person to keep an eye on.

Indeed perhaps a list of doctors could be interesting to compile.
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I remember when I was first diagnosed the whole cold showers and baths thing was still kicking around for ME patients.

My consultant mentioned it one day, commenting it's one thing for a healthy person in summer but for a sick person.....and also that as some patients were so desperate to get well they did this in the depths of winter and then when it didn't work they did it more frequently or for longer or both. Naturally, this made an ill person even more unwell.

It's only natural that people want to look for things that will at least ease symptoms, if not help them get well. Long covid seems like a very heterogenous group though and what apparently cures one might seriously harm another. Of course, if someone gets better it might be they recovered despite what they did & not because of it.

There's another risk our community are all too familiar with - the old if you really wanted to get well, you'd try everything. This leaves the community open for the predators and peddlers of woo. In hunting for recovery you can expend all your resources, physical & financial, and be left in worse health than when you started.

As a patient where are your resources better spent - getting behind the battle for recognition of the true nature of the condition, high quality research and fair access to much needed support or individuals shelling out lots of money for anecdotal treatment? Something I wish I had known enough to think about before I spend thousands making myself worse & other people better off.
 
STAT News: Covid-19 long-haulers and the experience of 'hidden' disabilities Opinion piece by Harry T. Paul - second year M.D.-Ph.D. student at the Johns Hopkins University School of Medicine

The lack of discussion around hidden disabilities creates barriers for people experiencing invisible symptoms like pain or fatigue for which there is no provable medical etiology. As reported in The 1619 Project, the history of doubting patients stretches at least as far back as the beginning of slavery in the U.S. In the intervening centuries, before a syndrome or disease is categorized and accepted as “real,” patients with these symptoms have been written off. Chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and fibromyalgia are just a few examples.
 
Edit - cross posted with Kalliope - referring to

Shared by Nature on social media, for those who'd like to like/comment and share from the source:
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Hmmm....

Not bad but the article makes it sound a bit as though ME is recognised now and the discrimination is a thing of the past. We wish.

Also that ME was first reported 40 years ago. I doubt this is true. For example I know of fellow ME sufferer who is older than me who recollected her grandmother who always sat right by the stove as she was always freezing and could only do the bare minimum in terms of self care - what she later recognised as all the classic hallmarks.

Maybe it seemed to become a lot mire prevalent 40 years or so ago? Or is it just that coincides with the BPS rise to power and when the patient blaming started?
 
Invisible Woman said:
Hmmm....

Not bad but the article makes it sound a bit as though ME is recognised now and the discrimination is a thing of the past. We wish.

Also that ME was first reported 40 years ago. I doubt this is true.
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Wasn't it described already in the 1930's? So more like 90 years..

ETA: However the term "ME" arrived in the 1950's, didn't it? So 70 years, then..
 
‘Long Covid’ sufferers 'frustrated' as they struggle to return to work
From migraines to fatigue, coronavirus patients say they are continuing to suffer debilitating symptoms months after first becoming infected, in what has become known as "long Covid."

Read in CNBC: https://apple.news/A5fwsXAG5T1KjmIbdkjwWrw

Antibody testing of “long Covid” sufferers has been reported to give negative results, making it hard for long-haulers to prove their prolonged illness.

If is similar to the difficulties that those with chronic fatigue syndrome have long endured in being mis-diagnosed with psychosomatic illnesses. “People really do need some kindness and understanding,” he added.
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