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

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Dolphin said:
https://www.huffingtonpost.co.uk/en...emic_uk_5f7ad1e6c5b64b480ab05d55?guccounter=1
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The article links to this:

Long Covid: Reviewing the Science and Assessing the Risk
Paper
Posted on: 5th October 2020


https://institute.global/policy/long-covid-reviewing-science-and-assessing-risk

Our understanding of long Covid is still in its early stages, but the most commonly reported symptoms, cited in various studies, include:

  • Excessive fatigue/exhaustion
  • Breathlessness
  • Headache
  • Insomnia
  • Muscle fatigue/pains
  • Chest pain
  • Persistent cough
  • Loss of taste and smell
  • Intermittent fevers
  • Skin rashes
  • Post-exertional malaise-when overdoing it leads to symptoms coming back
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Includes:
Some doctors are beginning to take non-medication, non-surgical rehabilitation approaches to treat cases of long Covid, according to Doctor Gerard Francisco of McGovern Medical School in the US. These types of approaches include reconditioning programmes for those experiencing chronic fatigue as well as sessions with neuropsychologists for those suffering from cognitive issues. 16
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rvallee said:
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.
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The one thing guaranteed to make a bad thing happen, is to be absolutely sure it couldn't happen.
 
'Long Covid': Why are some people not recovering?
For most people, Covid-19 is a brief and mild disease but some are left struggling with symptoms including lasting fatigue, persistent pain and breathlessness for months.

The condition known as "long Covid" is having a debilitating effect on people's lives, and stories of being left exhausted after even a short walk are now common.

So far, the focus has been on saving lives during the pandemic, but there is now a growing recognition that people are facing long-term consequences of a Covid infection.

Yet even basic questions - such as why people get long Covid or whether everyone will fully recover - are riddled with uncertainty.
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https://www.bbc.co.uk/news/health-54296223
 
From the BBC report, No mention of PVFS or ME or CFS. It seems, frankly, dishonest.

Post-viral fatigue or a post-viral cough are well documented and common - we've probably all had an infection that has taken ages to fully recover from.

Around one in 10 people with glandular fever has fatigue which lasts for months. And there have even been suggestions that flu, particularly after the 1918 pandemic, may be linked to Parkinson's-like symptoms.

"With Covid there seem to be more far-reaching symptoms and the number of people seems to be much greater," says Prof Brightling.

One wonders whether the SMC have been busy briefing.
 
chrisb said:
From the BBC report, No mention of PVFS or ME or CFS. It seems, frankly, dishonest.
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Not quite. There are two mentions but snuck in so even those sensitized to it might miss them. How much more those ignorant of the subject?
We've got no doubt long Covid exists," Prof David Strain, from the University of Exeter, who is already seeing long-Covid patients at his Chronic Fatigue Syndrome clinic, told the BBC.
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People who have had chronic fatigue syndrome are more likely to have it again and the concern is that future infections may cause more flare-ups.
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When they start to cover themselves by bunging in such oblique references, while not explaining the substance of it all, so they can later say that they didn't ignore it, one knows that they're worried that the dyke might just break anytime soon.
 
The Mirror - Long Covid: Your questions about lingering devastation of coronavirus answered

Viruses are also one cause of long-term illness termed myalgic encephalitis and chronic fatigue syndrome. While Covid-19 is a new virus that causes a wide variety of life-threatening illnesses, many of the symptoms of Long Covid have been seen before in other post-viral conditions. What is new here is the sheer volume of people now suffering, and doing so at the same time.

...

Many of this wide spectrum of conditions has been seen before. This includes viral damage to the heart, severe post-viral exhaustion, post-exertional malaise and brain fog. Specialists are looking at whether this is due to the immune system, due to disorders in the brain related to the nervous system and its control over our defence and healing systems, and disorders of how we perceive threats to our health.

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.

Now, with such huge numbers of people suffering these illnesses there will be a boost to research to people with Long Covid and post-viral illnesses.
 
Several people have commented here about breathlessness and said it's a feature of their ME too. I also get breathless when I do what might be regarded as minimal activity, and I also have mild allergic asthma. These two types of breathlessness are different and have different causes.

Breathlessness in Covid-19 can be due to Covid specific scarring of the lungs or damage to the heart which itself seems to have several pathologies.

I think we need to be very wary of assuming breathlessness of people with long Covid is the same as that experienced by pwME.
 
Trish said:
I think we need to be very wary of assuming breathlessness of people with long Covid is the same as that experienced by pwME.
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To be fair though, the reverse should be the case as well. There is too much that we don't know about ME due to lack of research, and there is much that we don't know about long Covid due to how new it is.

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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That's quite the statement for UK mainstream media. Do we know anything about Matt Roper, the journalist who wrote it?
 
Andy said:
To be fair though, the reverse should be the case as well. There is too much that we don't know about ME due to lack of research, and there is much that we don't know about long Covid due to how new it is.
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Fair enough, but it seems there is lung scarring seen in Covid-19 that the doctors say they have never seen anything like it before.
Of course some of the breathlessness being reported could have the same cause as some we experience in ME, but I felt there were assumptions being made that all breathlessness is the same.
 
Trish said:
but I felt there were assumptions being made that all breathlessness is the same.
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Do you think it could be useful to have a discussion thread about this to explore it and compare notes as to what people are actually experiencing?

I for once wonder if the extreme yawning I've experienced is recognisable to other ME patients, or if "air hunger" and/or "breathlessness" means different things for others.
 
Trish said:
Several people have commented here about breathlessness and said it's a feature of their ME too. I also get breathless when I do what might be regarded as minimal activity, and I also have mild allergic asthma. These two types of breathlessness are different and have different causes.

Breathlessness in Covid-19 can be due to Covid specific scarring of the lungs or damage to the heart which itself seems to have several pathologies.

I think we need to be very wary of assuming breathlessness of people with long Covid is the same as that experienced by pwME.
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I look on it another way as well. For those of us who develped ME after a viral illness we may have the specific unique viral symptoms on top and at the same time as the ME ones.

So anyone who developed ME after an acute viral onset with a viral that caused lung problems or heart damage can have both. It's not unique to a post viral illness after Covid.

The POTS groups have people who developed this after a viral illness.
 
ukxmrv said:
I look on it another way as well. For those of us who develped ME after a viral illness we may have the specific unique viral symptoms on top and at the same time as the ME ones.

So anyone who developed ME after an acute viral onset with a viral that caused lung problems or heart damage can have both. It's not unique to a post viral illness after Covid.
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I agree, I don't think what I said disagreed with that, it is very likely some with covid specific lung damage may also have ME. It's not either/or. And some post Covid patients have breathlessness without reporting fatigue or PEM, so they don't have ME. And some won't have lung damage, but may still have breathlessness with ME.

I think this is a fine example of why ME is so complicated. As has been discussed on another thread, for those with ME who can identify a viral trigger, some of the variation in ME symptoms we experience may reflect the symptoms of our particular viral trigger, and of course some of us have comorbid unrelated conditions.
 
Increasing reports of lingering malaise and exhaustion akin to chronic fatigue syndrome may leave patients with physical debility
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Not really relevant, but this infuriates me. Since CFS was invented and said to be the same as ME it has all been about fatigue. Further up the report they spoke about vertigo and this is so prevalent in ME that it was called epidemic vertigo in some places.

The name change made all the myriad ME symptoms disappear so it is impossible for a doctor to have any feel for what is making us sick.

Thirty odd years of expertise were thrown out and we have been left with thirty years of ignorance that could have been helping us but also saved the country from the disaster of having so many productive adults becoming chronically ill.

I hope that long covid does not turn out to be the lifelong disease ME but a time limited post viral syndrome because that will make life very difficult for all of us.

Rant over, back to the discussion, thank you for listening :)
 
Mithriel said:
Thirty odd years of expertise were thrown out and we have been left with thirty years of ignorance that could have been helping us but also saved the country from the disaster of having so many productive adults becoming chronically ill.
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Arguably, if they had taken it seriously in the first place many of those chronically ill adults might be productive if an effective treatment, if not cure, had been found.

Compared to the potential cost to economies world wide of long covid it might well prove a seriously expensive mistake.
 
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