Long Covid

[ruben]

Just seen this morning on BBC website that scientists have detected irregularities in the blood of "long covid" patients. It's predicting a diagnostic test will be available within 6-18 months.

 

[Martin aka paused||M.E.]

https://www.bbc.co.uk/news/health-5...cLZYjTPNfwXe8IWdUgpmfq-k7frVzsCDJL5JFh3YPMnzY

 

[splusholia]

Does this mean anything for CFS patients? I guess we wouldn’t have the same irregularities?

 

[Celandine]

Another piece on this in The Guardian--
https://www.theguardian.com/society...-antibody-discovery-raises-hope-of-blood-test

I wonder whether the antibodies would only show up in people with fairly recent infection. Would a test looking for those antibodies find anything a year or more out from initial infection? And, of course, would the test pick up anything in ME patients with no known covid infection?

 

[bertiedog]

I would love to know which antibodies they are talking about? Wouldn't it be amazing if they tied up with the recent study of Klaus Wirth and Carmen Scheibenbogen's findings of autoantibodies against the ß2AdR but I guess that is just me dreaming of a real breakthrough?

However it has to be encouraging that antibodies are even being mentioned in relation to Long Covid because so many researchers have found the possibility of antibodies playing a part in ME/CFS, at least in a subset of patients.

Pam

 

[Martin aka paused||M.E.]

I would love to know which antibodies they are talking about? Wouldn't it be amazing if they tied up with the recent study of Klaus Wirth and Carmen Scheibenbogen's findings of autoantibodies against the ß2AdR but I guess that is just me dreaming of a real breakthrough?

However it has to be encouraging that antibodies are even being mentioned in relation to Long Covid because so many researchers have found the possibility of antibodies playing a part in ME/CFS, at least in a subset of patients.

Pam

This breakthrough has already happened so I think they are talking about other antibodies

 

[IThinkImTurningJapanese]

https://www.bbc.co.uk/news/health-5...cLZYjTPNfwXe8IWdUgpmfq-k7frVzsCDJL5JFh3YPMnzY

Scientists say they have detected irregularities in the blood of long Covid patients that could one day pave the way for a test for the condition.
Imperial College London researchers found a pattern of rogue antibodies in the blood of a small number of people with long Covid.
They hope it could lead to a simple blood test within six to 18 months.
Dr Elaine Maxwell, from the National Institute of Health Research, said the early findings were "exciting".
She said there could be "a number of different things happening after a Covid-19 infection" and an autoimmune response "has been one of the suspected mechanisms".
But she warned that long Covid was a "complex condition", saying it was important to continue to research the other causal factors so all different types of post-Covid syndrome could be diagnosed and treated.

Long Covid is not yet fully understood and can cover a range of symptoms lasting long after initial infection including fatigue, breathlessness, headaches and muscle pain.
There are currently no tests to diagnose long Covid.
Prof Danny Altmann, who is leading the research team at Imperial, said he believes the work will lead to a test which could be done in a doctor's surgery.

• More than 2m in England may have had long Covid
• Long Covid: Fears others will suffer when restrictions end
• Patients call for long Covid clinics in Wales

But he said he was concerned the UK government's plans to "live with" Covid-19 could be stoking the next wave of cases of the condition.
The government plans to end most coronavirus restrictions in England in a week's time, on 19 July.
But amid rising cases Prof Altmann warned that it is not yet known if vaccinations will protect people from long-term symptoms.

"If we're heading into a phase of 100,000 cases per day, and, we're saying that 10-20% of all infections can result in long Covid, I can see no certainty that we're not brewing those long Covid cases despite having a vaccinated population," he said.

'I had long Covid, and then caught Covid again'

media captionBBC reporter Lucy Adams explored long Covid in a film with Panorama
I am 44 years old - but in my body, I'm like someone twice my age.
I caught Covid in March last year. Having long Covid means I wake up in pain and go to bed with pain. I have vertigo, migraines and blurred vision.
After 11 hard months, I began to feel exactly as I had almost a year previously.
I went for a test and that evening I got an email saying I had Covid again.
Read Lucy's story here.

Long Covid passes, unlike ME/CFS. Then you catch a variant.

 

[Celandine]

This twitter thread from yesterday from Dr. David Lee talks about new research findings around anti-Annexin2 antibodies. Mostly pertaining to acute covid, but he also says--"Furthermore, Annexin A2 is also expressed in the vasculature of the brain. Therefore, antagonism of Annexin A2 can cause microvascular stroke and damage to the blood-brain barrier, which would result in neuro-inflammation and long-term neurological injury."

Not sure if these are the antibodies being talked about in the Imperial findings above.

Here's the twitter thread--

https://twitter.com/i/web/status/1413816139055083520

 

[godlovesatrier]

So it takes 70 years (ME research) for Ron Davis to pioneer and see something in the blood and postulate that there are anti bodies, but it takes 6 months with focused human effort to figure out .... the same thing?

I mean I won't get over excited, it's probably great news but jees...

 

[Celandine]

Lee also says---
"We are also misdiagnosing Long COVID, which is also characterized by lung perfusion deficits, pulmonary fibrosis, and various neurologic sequelae. Our next studies will establish whether these autoantibodies are also present among patients with persistent post-COVID symptoms."

 

[Bergkamp]

I don’t want to be a party pooper but I have a really hard time seeing this will have any implications for us. I just fear long COVID and ME are two completely different things. For most people, like 80% is what I’ve read, long COVID improves over time, after a few months even. We all know for ME this is not the case.

hope to be wrong though

 

[hapl808]

I actually think it's the case for ME/CFS as well, depending on how you define 'improves over time' and such. I don't think they're different things at all (personally), but since they'll be treated as disparate disorders, we can only hope that some table scraps will fall down within our reach.

 

[Bergkamp]

I actually think it's the case for ME/CFS as well, depending on how you define 'improves over time' and such. I don't think they're different things at all (personally), but since they'll be treated as disparate disorders, we can only hope that some table scraps will fall down within our reach.

Why do you think improvement is the case for ME/CFS as well? What I read from people is that they improve a bit over a few years but not within the first year. Furthermore, I read today about research in Norway on Long COVID, and fatigue was only a symptom in 21% of cases. No taste and smell (a typical COVID symptom) in 28% cases. That tells a lot IMO

 

[dylemmaz]

For most people, like 80% is what I’ve read, long COVID improves over time, after a few months even. We all know for ME this is not the case

i think for most with ME, we would have improved in the beginning of our illness if we were told to rest and pace as a lot of the long haulers are being told right now (at least those in the forums who have found the long hauling community which offers great advice, advice i never had access to). at least, i know for certain i would not have become severe if i wasn’t gaslit by every doctor i saw and told to exercise, and if millions of people at once were developing my same illness and i could hear about it on the news and then find a wealth of information about it online and that it’s important to pace. i blame that solely for my worsening and am almost 100% sure i would have had a full recovery if i knew what pacing was in the beginning of my illness.

them recovering or improving at higher rates is not reason enough to suggest that they are not the same illness. long haulers have been born in to a completely different world of post viral illness and how it’s approached than we were. of course many are still gaslit by their doctors, but the majority at least have access to information online and great communities that only i could have dreamed of in the beginning of my illness. i went undiagnosed for 4 years and thought i was just insane despite trying to figure out what was wrong with my body every day on the internet

just my take at least

 

[hapl808]

I would posit that all those percentages and numbers are meaningless - because we can't diagnose or even describe the disorder.

Improvement is the norm - for instance, many people who come down with viruses eventually get better. Some have lingering symptoms for days or months or years, but they learn to live with them. Are they ME/CFS if they experience mild PEM after activities or lingering fatigue and IBS?

Anyone who varies on the 'mild' part of the ME/CFS scale I think would kind of count as improves over time from their initial trigger. Again, we have to define these terms because we don't know the trigger(s), who is susceptible, how to diagnose, or really much of anything. We have made up criteria, that's it.

For the first five years, exercise intolerance and heat intolerance and digestive issues (new allergies and such) were my main symptoms. Weight loss followed, then more and more PEM from activities, and so on. But I was functional and varied from mild to moderate.

I thought I had it 'under control' in that range. Still debilitating, but I learned to live with it. Now I'm more on the severe end of the scale and trying to get back to the 'glory days' of moderate debilitating illness. Why do I no longer heal properly with rest? Who knows.

So I'll be a broken record - until we can define the illness properly and diagnose it accurately, any numbers or observations are a function of the yardstick used.

 

[hapl808]

i think for most with ME, we would have improved in the beginning of our illness if we were told to rest and pace as a lot of the long haulers are being told right now

Yep! For me, even if I had listened to the extreme rest and pacing advice I'm pretty sure I never would've moved from moderate to severe. But pretty much all my doctors told me to push through, take a few NSAIDs for muscle pain, try to get better sleep, exercise more, etc. And here I am.

 

[Rufous McKinney]

until we can define the illness properly and diagnose it accurately, any numbers or observations are a function of the yardstick used.

agree.....

In my long winded case- I'll never know what happened during the 55 years I had my chronic eppstein barr syndrome- what i called it. In 1993, I had medical insurance thru my work for the first time (nobody has money for doctors)...and went to a doctor and said "I must have mononucleosus, again). ....doctor said stressed and should take a yoga class. Sent home. Of course, no tests. They never run tests. Insurance hates tests.

He never said- do you think you have Chronic Fatigue syndrome? No. So I know that exists but frankly, I do not believe I considered my chronic Eppstein state go be that. And I'm not a yuppie, either. Those people have money and wear suits.

its amazing, how many illnesses can be cured with yoga classes.

 

[Rufous McKinney]

Improvement is the norm - for instance, many people who come down with viruses eventually get better.

its just ironic you said that- since that seems to be the crux of the matter- improvement is not the norm in our case, and they should figure out why?

so people just assume - bodies make corrections, repair and fix things, OR you have a famous disease with a name and many specilialists eager to help you.

 

[Pendergast]

Could this news be related to this? :

"Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?"

https://www.nature.com/articles/s41380-021-01148-4

In both disorders neurotransmitter receptor antibodies against ß-adrenergic and muscarinic receptors may play a key role. We found similar elevation of these autoantibodies in both patient groups.

(I can't see the reference supporting that affirmation).

 

[Rufous McKinney]

Could this news be related to this? :

seems likely....and how do we get this treatment they discuss?

extracorporeal apheresis (INUSpherese)