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

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

Includes:

 

https://twitter.com/user/status/1313277976025260032

 

'Long Covid': Why are some people not recovering?

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.

 

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?

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 BBC does frequently mention them in items about various aspects of medicine, especially on R4 and News 24, so it wouldn't be in the least surprising.

 

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.

 

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.

That's quite the statement for UK mainstream media. Do we know anything about Matt Roper, the journalist who wrote it?

 

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.

 

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.

 

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

 

https://twitter.com/user/status/1313448730994114560

 

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.