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

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mango said:
Another news website summarises the news article in DN:

Aftonbladet: Coronasymtom kan vara något annat än covid-19
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These are symptoms that are also described in anxiety disorders
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Clearly showing those are wrong and that those "anxiety disorders" very likely describe chronic illness patients while incorrectly ascribing a false cause. That there is in fact likely no such thing as an anxiety disorder that is not explained by an external factor. Category errors are the most important failures possible in all of science, this here is no different from biology somehow having given life status to some types of rock. Those errors are unacceptable.

All of mental health research and clinical practice will have to start over from scratch, it is entirely polluted with disinformation and false attribution error syndrome and this here is the proof that most of what has been promoted in this field for decades is a mix of illusion and delusion.
 
Coronavirus: They avoided hospital but they still aren't getting better

By Zoe Kleinman

https://www.bbc.co.uk/news/health-53269391

Extreme fatigue, nausea, chest tightness, severe headaches, "brain fog" and limb pains are among the recurring symptoms described by some sufferers of Covid-19 for weeks - and even months - after their diagnosis.

They call themselves "long-haulers" and their symptoms persist long after the 14-day period that's officially said to be the average length of the illness.

There are calls for both health professionals and employers to recognise that some people will take a lot longer than two weeks to recover...

Professor Paul Garner from the Liverpool School of Tropical Medicine is an epidemiologist who has been studying his own post-Covid19 long-haul journey since he first fell ill on 19 March.

He describes his condition now as being like Chronic Fatigue Syndrome (CFS) or ME.

More at link
 
Leila said:
When long-hauler's symptoms are being described, there's no mentioning of light and sound sensitivity, is there? At least I haven't read of it.

If post covid turns into ICC ME, at least some would have that symptom?
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The post-COVID syndrome symptoms themselves aren't well characterised as reported in the media.

I propose that light and sound sensitivity are secondary and arise from cognitive fatigue/related and these symptoms probably do exist in severe post-COVID patients, however are not considered to be central symptoms.
 
I was absolutely no different from you...
I was fresh out of university, working at my summer job, applying for graduate schemes and full-time work...
And then I got a virus and I never got better. It’s been 10 years. And the symptoms of that virus have never left me. From the start, I did everything right to recover. I rested. I gave in to it, rather than fighting it. But M.E. doesn’t care...
They estimate that 10% of people with some viruses can develop M.E...
You are not untouchable. Anyone could develop M.E
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https://the-slow-lane.com/
 
Leila said:
When long-hauler's symptoms are being described, there's no mentioning of light and sound sensitivity, is there? At least I haven't read of it.

If post covid turns into ICC ME, at least some would have that symptom?
Click to expand...

I didn't have these symptoms in my first years of ME/CFS (sudden "mild" onset after flu-like illness) When these symptoms begun it was difficult to put them into words. Today sensory oversensitivities are one of my worst symptoms.
But it is an interesting observation you mention because severe sensory symptoms seem quite unique to ME/CFS.
 
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Leila said:
When long-hauler's symptoms are being described, there's no mentioning of light and sound sensitivity, is there? At least I haven't read of it.
Click to expand...

People may not yet realise that it's a symptom. It might seem an odd thing to say, but I had a lot of issues that I wouldn't have been able to identify as individual symptoms until I started having conversations with other patients.

It was only when I realised that some people didn't have particular symptoms – whilst others had them to an extreme degree – that I started thinking about them separately.
 
@Kitty yes, that makes sense.

I had moderate light/sound sensitivity from the very beginning - but I just really thought the outside world was brighter and louder (versus me being overly sensitive to it). I asked people to turn off the light and be more quiet.

It became more severe when I was more severly ill.

There's also no mentioning yet of people with severe post covid compared to pwME that are severly ill. I don't mean Covid patients from the ICU but people with a rather mild manifestation that became bedbound. From what I understand there is a fraction of pwME that have a very severe onset from the getgo.

But it could also be that there are severe post covid cases that remain unseen and unheard..
 
"I am also discovering new areas of damage: I have now become incredibly clumsy. I was never the most lissome person, no one ever called me graceful, but my clumsiness is off the chart. If I reach for a glass, or take something out of a cupboard, I will knock it, or drop it on the floor. I have tripped over the curb and gone flying. I fall over furniture. It is as if that part of my brain, which subconsciously adjusts hand and movement to obstacles it sees, isn't working".
 
lycaena said:
I didn't have these symptoms in my first years of ME/CFS (sudden "mild" onset after flu-like illness) When these symptoms begun it was difficult to put them into words. Today sensory oversensitivities are one of my worst symptoms.
But it is an interesting observation you mention because severe sensory symptoms seem quite unique to ME/CFS.
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Light and sound sensitivities are prominent in autism though they probably don't come from the same damage.

It's always difficult to talk about what symptoms you have with your ME because they change so much over the years. I've found that a problem with questionnaires.

You are right about needing the words to sort out the symptoms.
 
When they are talking about the long term consequences of covid-19 they are not being careful enough about preventing everything being lumped in together. I am suspicious about that with our experiences.

I've read that being ventilated in a coma in ICU is known to cause post traumatic stress and that will be important to treat. My father had an operation for cancer which left a scar right round the front of his torso and it left him traumatised. It took ages for him to come to terms with it.

Then there is the the lung damage in particular and the other damage that caused by the infection like strokes and the consequences of blood clots which will take a long time to recover from. Some people will need lung transplants. The new guidelines on post covid are about COPD so people may never be the same again.

Post infectious fatigue can take up to 3 years to get back to normal and that is bound to happen to quite a few folk.

The last group are the ones who seem to be getting ME like symptoms where good management now might stop them being severely ill long term and it doesn't look hopeful for them getting it.
 
Trish said:
I agree people may not think of it as a specific symptom. Many are reporting headaches, and they can be accompanied by light and sound sensitivity, so they may just see this as part of the picture of having a bad headache.
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I've seen quite a lot of reports of people who suffer from migraines and thought it was that at first. So there should be some similarity between the two. Light and sound sensitivity are common with migraines so it would make sense.

Would be interesting to test some migraine drugs.
 
MeSci said:
Coronavirus: They avoided hospital but they still aren't getting better

By Zoe Kleinman

https://www.bbc.co.uk/news/health-53269391

Extreme fatigue, nausea, chest tightness, severe headaches, "brain fog" and limb pains are among the recurring symptoms described by some sufferers of Covid-19 for weeks - and even months - after their diagnosis.

They call themselves "long-haulers" and their symptoms persist long after the 14-day period that's officially said to be the average length of the illness.

There are calls for both health professionals and employers to recognise that some people will take a lot longer than two weeks to recover...

Professor Paul Garner from the Liverpool School of Tropical Medicine is an epidemiologist who has been studying his own post-Covid19 long-haul journey since he first fell ill on 19 March.

He describes his condition now as being like Chronic Fatigue Syndrome (CFS) or ME.

More at link
Click to expand...
It's difficult to pin down whether there are more or less people affected in the case of Covid-19, because existing studies into other conditions give inconsistent results. But Dr Head says the variety of its symptoms could be more unusual.

"What may well be different with Covid-19 is the sheer range of observed long-term health consequences."
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Stares angrily in "those patients with a long list of symptoms that physicians tune out after the first 2".

Old stories may sound entirely new when you actually bother listening to them for the first time.
 
Gotta live it to understand it. Bit of a problem in medicine.

One of the few things that are constant: physicians who live it immediately see the massive conflict between what they were taught and reality. Major major failure in a science-based profession.

Still, it's good to hear those. Can't really fault people for being mislead on purpose as part of extensive training.

 
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