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 Post subject: Re: Long Covid.
 Post Posted: Fri May 26, 2023 10:05 am 
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Doddie wrote:
has investigative journalism died?


Yes, yes it has.

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 Post subject: Re: Long Covid.
 Post Posted: Fri May 26, 2023 8:35 pm 
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sboots wrote:
Doddie wrote:
has investigative journalism died?

Yes, yes it has.

I'm at the point now where i feel i've done everything i can to try and wake people up about this issue but for some stubborn reason the generations younger than me either can't or won't wake up and see the truth.

I'm very close too feeling well you've made your own bed and now you can lie in it and that makes me very sad... but you know what, i'm not going to be on this planet forever so maybe the time has come that i step back and let future generations deal with the bed they are making for themselves now if all they are interested in is a social media led news.

There are so many things that i could rant on about here that are not being reported in the media that i'd probably be typing about for a month of Sunday's, but one that has been gaining traction with me is the new proposed changes (read that as sweeping Orwelian powers) that the WHO [World Health Orginization] are currently seeking.

For example and without getting into the details... this video explains it better than i ever could:

WHO New Health Regulations
https://youtu.be/ooKyYEvIhYk

Should you want to read the full WHO proposal it is here:
Article-by-Article Compilation of Proposed Amendments to the International Health Regulations (2005) submitted in accordance with decision WHA75(9) (2022) Source: https://apps.who.int/gb/wgihr/pdf_files/wgihr1/WGIHR_Compilation-en.pdf

I'm certain that eventually the truth will come out because deep down people are inquisitive and want truth, how much pain future generations have to go through if they don't quickly wake up is the question.


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 Post subject: Re: Long Covid.
 Post Posted: Sun Jun 04, 2023 7:03 pm 
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Understanding the burden of post-covid-19 condition
https://www.bmj.com/content/381/bmj.p932

Quote:
A complex picture is emerging, along with urgent priorities for future research

Covid-19 cases and deaths have decreased globally,1 yet, the long term consequences of infection, including post-covid-19 condition (often known as long covid), are still being managed. Most people who have covid-19 recover soon after the acute phase of the disease but others experience persistent health problems for months or longer, and these problems can impact quality of life and ability to work.23456 Understanding the trajectory of symptom burden and recovery from post-covid-19 condition is crucial for policy making, treatment decisions, and care coordination.

Early studies reported widely varying estimates of post-covid-19 condition prevalence and symptom trajectories, mainly due to differences in sample representativeness and survey designs. As commented on by previous work,236 research has been limited by: data sources not representative of the general infected population because much covid data are based on patients admitted to hospital; scarcity of information on symptom trajectory because population level studies rarely survey a comprehensive set of symptoms or the change in their severity; absence of a comparable covid-free control group because some symptoms might result from existing conditions or seasonal illness; and recall bias because the experience that respondents are asked to recollect can easily date back to months, or even years, ago....


For anyone who doesn't know, when you see "wild type" variant posted anywhere (not just in this article) they are referring to what is commonly known as the original variant first discovered in Wuhan, China... it is not currently known if the 'wild type' variant ever evolved prior to discovery or not, all we know for sure is it is the first variant that science knows about.


Last edited by Doddie on Sun Jun 04, 2023 7:25 pm, edited 1 time in total.

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 Post subject: Re: Long Covid.
 Post Posted: Sun Jun 04, 2023 7:21 pm 
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I was going to add this to my post above but as i was trying to explain the articles it quickly became clear that if i did that it would confuse matters, so:

This is really facinating and if it turns out to be true it's no wonder my brain was so screwed (i hope i'm allowed to use that word?).

It's not an easy watch at circa 59 minutes long, but Dr Mobeen Sayed does his best to explain all the details... i'm by no means a medic and i was able too keep up with most of what he was covering... i should point out that the spike protein in question IS the spike protein from the virus itself and NOT the spike protein from a vaccine... Dr Mobeen makes that clear at the end of his video during the Q&A... i was wondering about that all the way through the video myself so if i have any criticism about the video it would be he should have made that clear in the beginning.

Spike Protein Accumulates in Brain and Skull and Causes Damage. Brand New Study
https://www.youtube.com/live/Jmje9djPd5o?feature=share


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 Post subject: Re: Long Covid.
 Post Posted: Sat Jun 24, 2023 10:03 pm 
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It's been a while since i've looked into what the scientific community now knows about Long Covid and i have to say what i've found is a mixture of head slapping, vindication, eye-rolling, and frustration.

Starting with the latter, trying to find published medical papers be they pre-prints or peer reviewed is becoming harder and harder now the WHO has declared the pandemic over... more and more sources are reverting back to their pre-pandemic paywall practices (best i leave that there).

Head slapping and eye-rolling because much of what mainstream media now talks about has already been either debunked or discussed ad nauseam so many times that i wonder why they even bother to print it now claiming it as "new" news... i.e. much of what they claim as new has been around for a very long time (in the pandemic timeframe).

Vindicated because when i was being treated for PTSD and other mental health issues when i began to recover from 'my experience' of Long Covid i honestly felt like a fraud for the way i felt... even though i knew i wasn't lying on the floor curled up in a ball when i was alone during the night, on the floor crying in desperation, trying to understand what was happening to me... something i strongly believe was at least 90% down to the fact there were no reports (that i found) of that happening to anyone else, so i simply couldn't understand what was happening to me and it terrified me.
Thankfully we have at least moved on from that and mental health issues are very much accepted as a potential consequence now!

All the links below are as i found them on June 25th 2023 apart from the Phyto-v link which for obvious reasons is 2020 onwards.

Gastroenterology & Endoscopy News:
JUNE 24, 2023
Altering Microbiome Alleviates Symptoms of Long COVID
https://www.gastroendonews.com/PRN/Article/06-23/Altering-Microbiome-Alleviates-Symptoms-of-Long-COVID/70511

The above is already known about, maybe the formula has changed but the gut microbiome has long since been known, since circa 2020 and indeed it helped me:
The UK Phyto-V covid Study
http://phyto-v.com/
----------------------------------
Long COVID: Here are 9 mental health warnings highlighted in a new federal advisory
https://www.sfchronicle.com/health/article/long-covid-9-mental-health-red-flags-highlighted-18164394.php

Long COVID link to mental health conditions prompts federal advisory
https://www.latimes.com/california/story/2023-06-23/long-covid-link-to-mental-health-conditions-prompts-federal-advisory

CDC: Research Says Long Covid “Contributing” to Labor Shortage
About 18% of those with Long COVID have not returned to work for over a year. The CDC says it's "hurting the U.S. economy."
https://tech.co/news/cdc-research-long-covid-labor-shortage
The article above applies equally to any economy anywhere on the planet.

Substance Abuse and Mental Health
Services Administration

IDENTIFICATION AND MANAGEMENT
OF MENTAL HEALTH SYMPTOMS AND
CONDITIONS ASSOCIATED WITH LONG COVID

[Apologies for the cap lock, i simply copied and pasted from the pdf]
https://store.samhsa.gov/sites/default/files/pep23-06-05-007.pdf

As an aside, as much as i'll never forget Aug 23rd 2020 (the day my world changed thanks to Long Covid) i'll also never forget the idiot who replied to a post i made somewhere on the internet... due to the brain fog i don't remember where exactly i posted but i don't believe it was here, but wherever it was i was angered to the point of disbelief when i posted i think i might be suffering from PTSD and the reply i got was (putting it politely)... [paraphrased] "oh **s what are you going to blame Covid on next?"
I was so angry that even with a brain functioning at 100% i'd have struggled to find the words to reply to him, i hope whoever he was he can look back at that post and feel nothing but utter shame.


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 Post subject: Re: Long Covid.
 Post Posted: Sat Jun 24, 2023 11:50 pm 
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I haven't been online very much for the last few weeks due to the move from NJ to VA, but in scanning my news feeds periodically, I've not seen any recent news about Long COVID. In fact, I've not seen any COVID news, either. It seems that mainstream media has moved on. I can tell you that my wife and I are among the very few still wearing masks when out and about. And even my wife is tiring of mask wearing... I will keep wearing a mask as I've not been sick in 3 years now -- not even a cold -- and I hope to keep going that way!

There are so many people who still believe as the respondent to your post from 3 years ago and that's unfortunate. I do hope that your respondent has seen the light and feels shame...

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 Post subject: Re: Long Covid.
 Post Posted: Wed Jun 28, 2023 10:59 pm 
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This video, although a little over 2 and a half months old now is both incredibly enlightening and informative.

It is 1h12m long and quite heavy with drug names i don't recognise, but please if you have a vested interest in any of the conditions i mention in the next paragraph don't let that put you off, watch the video and take notes for your next visit when you see your medic.

It's mainly about what is being seen now by some medics during the acute phase of Covid-19 and Long Covid in the US... that are potentially being misdiagnosed by other medics... they also discuss how Epstein Barr Virus may be playing an important part in the cause of Long Covid, ME/CFS, POTS etc.

It is important to first say, any medications or treatments they mention should not be taken as fact.
My understanding is that this is anecdotal to what they are seeing on the ground and at no point in the video are any peer reviewed papers mentioned, if anyone wants to try anything mentioned please take the information you find within the video to your Doctor first and have an informed discussion with him/her before doing/taking anything.

I watched the video for the first time last night and by the time i got to 40 minutes i'd already filled a page on my A5 notepad of questions i wanted to ask my GP.
I stopped taking notes at that point because it was clear i was going to fill pages and too expect a GP in the UK to sit and spend that amount of time in a surgery is never going to happen, instead i'll print off the link for the YouTube channel and ask her to watch it when she has time so she can do whatever research she needs to do, and get back to me.

Dr. Keith Berkowitz Discusses Long COVID Management (April 11th, 2023)
https://www.youtube.com/live/4IF3KKNEZrQ?feature=share

It really is a fascinating watch that had me saying to myself 'oh that makes sense' and 'omg could that be the reason' all the way through.

I do have a recollection there was a medical paper published for peer review a long time ago into whether EBV could be a latent cause of Long Covid but i forgot about it until i watched this video, i don't know if it passed peer review but i'll try and find it, if i do i'll post it here.


Last edited by Doddie on Wed Jun 28, 2023 11:47 pm, edited 1 time in total.

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 Post subject: Re: Long Covid.
 Post Posted: Wed Jun 28, 2023 11:37 pm 
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I've had a quick look through my bookmarks and i don't think i'll be able to find my original source about EBV triggering Long Covid (or is it Covid triggering EBV?) but this seems very similar to my original source, July 27 2021:

Long COVID: Epstein-Barr virus may offer clues
https://www.medicalnewstoday.com/articles/long-covid-epstein-barr-virus-may-offer-clues

The links below are way over my pay grade, but i hope it makes the point that science has now perhaps caught up and maybe has a good understanding that EBV could be (at least in some cases) a trigger for Long Covid, and potentially other viruses.

Peer-reviewed and published, Jan 31 2023:

Epstein Barr Virus Reactivation during COVID-19 Hospitalization Significantly Increased Mortality/Death in SARS-CoV-2(+)/EBV(+) than SARS-CoV-2(+)/EBV(−) Patients: A Comparative Meta-Analysis
https://www.hindawi.com/journals/ijclp/2023/1068000/

A slightly easier read but still a difficult read to understand:

Epstein Barr Virus Reactivation during COVID-19 Hospitalization Significantly Increased Mortality/Death in SARS-CoV-2(+)/EBV(+) than SARS-CoV-2(+)/EBV(−) Patients: A Comparative Meta-Analysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9904914/


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 Post subject: Re: Long Covid.
 Post Posted: Wed Jun 28, 2023 11:59 pm 
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I had read about the possible link with Epstein Barr and Long COVID before. I think that there is good reason to believe that there is a relationship. EBV is suspected to be linked with quite a few other conditions, too, I believe.

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 Post subject: Re: Long Covid.
 Post Posted: Thu Jun 29, 2023 12:22 am 
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Steve, you might want to consider watching the video with Doctors Berkowitz and Mobeen, i was shocked to hear of the changes they are both now seeing in their practices since the start of this year in not only acute Covid symptoms, but also Long Covid symptoms.

My take from what they talk about in the first quarter of the video is that something has dramatically changed with the Omicron variant but no-one is talking about it.


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 Post subject: Re: Long Covid.
 Post Posted: Thu Aug 31, 2023 7:10 pm 
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In my ongoing quest to find out what the hell happened to me, and how, i found this very intersting:

Newly identified pathway provides insight into long COVID brain fog
Quote:
A new study has identified a key metabolic pathway that is abnormally activated in people with brain fog, a common symptom of long COVID. The discovery opens the door to developing a way of diagnosing, monitoring and treating people with the condition.

Long COVID can lead to cognitive deficits such as poor concentration, impaired thinking, forgetfulness, and mental fatigue, commonly called brain fog. Researchers from the University of New South Wales Sydney and St Vincent’s Hospital have now identified a biological pathway linked to the condition...
Source and more: https://newatlas.com/medical/newly-identified-pathway-provides-insight-into-long-covid-brain-fog/

The research article can be found here:
The kynurenine pathway relates to post-acute COVID-19 objective cognitive impairment and PASC
https://doi.org/10.1002/acn3.51825

Needless to say i'd never heard of the "kynurenine pathway" so i had too look it up, this abstract from Nature.com appears to explain it in layman's terms
[only the Abstract is freely available, the rest is behind a paywall]
:
The kynurenine pathway: a finger in every pie
https://www.nature.com/articles/s41380-019-0414-4


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 Post subject: Re: Long Covid.
 Post Posted: Thu Aug 31, 2023 7:23 pm 
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When i posted my previous post i knew there was a link i wanted to include but at the time i couldn't find it so i hit submit... i've found it now so rather than edit the post i'll post it here - it's a much easier read:

Long COVID Brain Fog Treatment Breakthrough: Key Biological Pathway Discovered
https://scitechdaily.com/long-covid-brain-fog-treatment-breakthrough-key-biological-pathway-discovered/


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 Post subject: Re: Long Covid.
 Post Posted: Thu Aug 31, 2023 10:14 pm 
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Fascinating stuff, Doddie. I'd never heard of this kynurenine pathway, either, so thank you for the Nature link that gives a high level explanation in the abstract. It would make sense that the immune response is a major factor in Long COVID.

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 Post subject: Re: Long Covid.
 Post Posted: Tue Oct 10, 2023 12:22 am 
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This is UK specific and was given during evidence from the ongoing UK Covid inquiry.

It does make me wonder how many other world leaders are/were treating Long Covid in the same disgusting manner, it also potentially explains why i have been treated so poorly by my governing bodies and social care system.

Quote:
Gaslighting and scepticism at the top of government

Today some light was thrown on this in a shocking revelation from the Long Covid Groups' KC, Anthony Metzer.

During his opening speech to the Inquiry today Metzer disclosed that in October 2020 former Prime Minister Boris Johnson scrawled the word ‘BOLLOCKS’ in capital letters across a Dept of Health and Social Care document providing guidance about Long Covid. Johnson has admitted in his own witness statement that he didn’t believe that Long Covid ‘truly existed’, and we now know that he thought it should be dismissed as “Gulf War Syndrome stuff”.

Deep-rooted scepticism at the very top of government may explain why the millions damaged by Covid-19 have faced huge struggles to have their illness recognised and to get the care they so desperately need.

Source, with more context:
Long Covid Groups Express Dismay as it is revealed Boris Johnson believed Long Covid to be BOLLOCKS
https://www.longcovidsos.org/post/long-covid-groups-express-dismay-as-it-is-revealed-boris-johnson-believed-long-covid-to-be-bollocks


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 Post subject: Re: Long Covid.
 Post Posted: Tue Oct 10, 2023 10:07 am 
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I despise politicians.

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 Post subject: Re: Long Covid.
 Post Posted: Tue Oct 10, 2023 11:16 pm 
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Steve, i cannot argue with that sentiment at all but in line with this boards policy i try not to get to political about things even though i'm in 100% agreement with you.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Oct 11, 2023 9:26 am 
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Doddie wrote:
i try not to get to political about things even though i'm in 100% agreement with you.


That's an excellent policy that I fully support. :-)

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 Post subject: Re: Long Covid.
 Post Posted: Tue Oct 17, 2023 12:41 am 
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Going back to my previous post about what the then UK Prime Minister thought of Long Covid in 2020, another article has has since made it's way into mainstream media of what he thought in 2021 via a WhatsApp message, I haven't checked out the original source yet but i suspect this won't need checked for it to be factual...

This is a short part of the article that has left me gobsmacked and in complete disbelief [note the part about hedging, whatever that is in this context?!]:
Quote:
Boris Johnson described long COVID as "b*******", the inquiry into the pandemic in the UK has heard.
A document from October 2020 described the symptoms of the condition, beside which the then prime minister wrote "b*******" and "this is Gulf War Syndrome".
Mr Johnson repeated similar remarks in a WhatsApp message four months later, the UK COVID-19 Inquiry heard.
In February 2021, Mr Johnson wrote: "Do we really believe in long COVID? Why can't we hedge it more? I bet it's complete Gulf War Syndrome stuff.
Edited for emphasys


To say i'm angry beyond belief would not even get close to how angry and let down i feel.

Source:
Boris Johnson asked if government 'believes in long COVID', coronavirus inquiry hears
The then prime minister described the condition as "b*******" in a document and again in a WhatsApp message months later, the UK COVID-19 Inquiry hears. In February 2021 Mr Johnson wrote: "Do we really believe in long COVID?... I bet it's complete Gulf War Syndrome stuff."
https://news.sky.com/story/boris-johnson-asked-if-government-believes-in-long-covid-coronavirus-inquiry-hears-12984294

Not only did he ridicule the now well acknowledged battlefield injuries of The Gulf War, he also ridiculed a consequence of the virus... and all this from a man who claims to have nearly died because of the virus post infection.

It's disgusting.


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 Post subject: Re: Long Covid.
 Post Posted: Tue Oct 17, 2023 11:46 am 
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Disgusting, indeed. Unfortunately, there are many politicians (and others) in that camp. It boggles the mind how they can be so far from the medical and scientific community in their thinking.

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 Post subject: Re: Long Covid.
 Post Posted: Thu Oct 19, 2023 7:25 pm 
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I'm not a fan of quoting mainstream media these days because they more often than not get their facts wrong about anything to do with Covid, so here is a link to a BMJ article (published 17th Oct 2023) that almost quotes what Sky News reported (14th Oct 2023) above word for word in my previous post in this thread... you can't get better than a medical journal corroborating what a news reporter publishes... it doesn't happen very often these days so well done Samuel Osborne of Sky News UK.

Long covid: Researchers “extremely angry” at Boris Johnson’s “bollocks” comment
https://doi.org/10.1136/bmj.p2406

As an aside for @Steve, i'm sitting on something i want to share with you but i feel somewhat guilty every time i PM you... it's off-topic for CH but not off-topic for Covid if you know what i mean... it's to do with something that's due to take place in the UK parliament tomorrow (Fri 20th), PM me if you'd like to know more. I won't be offended if you don't.


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 Post subject: Re: Long Covid.
 Post Posted: Wed Nov 15, 2023 11:38 pm 
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From Time magazine, i say that loosely because i'm not at all sure if it's still available as a magazine, or if it's solely online now?
In any case, this is a global issue so please don't take this as an attack on the US, it equally applies to the UK and everywhere else in the world.

How to End the Futile Blame Game Over Failed Long COVID Research
https://time.com/6335177/long-covid-research-failure/
Quote:
The health outlook for Long COVID sufferers is no better today than it was when the condition was first recognized in early 2020. This has been attributed in large measure to the disappointing results of clinical research, particularly when compared to the magnitude of the problem.

Now with hundreds of published results emerging from federally conducted or sponsored research, outraged experts and patient advocates say that there is little to show for it. The critique is that the pace of the work is slow and opaque, and that little has emerged that directly impacts prevention or patient care. The biomedical community has been under steady attack for lack of progress in prevention and treatment underlying a failure to help patients.

There is a lot at stake in getting the U.S.’s Long COVID research strategy right. With a national prevalence of the disease in the range of 5% to 15%, an estimated 10 to 35 million working-age adults have Long COVID, and it may be keeping as many as 4 million people out of work. There is a desperate need for effective treatments to mitigate their devastating frustration, suffering, functional impairment, and disability.

But what if the medical research community spends years and hundreds more millions of dollars digging a dry hole? The answer is not to dig deeper but to dig elsewhere with a more promising outlook and sharper tools... continues...


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 Post subject: Re: Long Covid.
 Post Posted: Thu Nov 16, 2023 11:41 am 
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It most certainly isn't a US only issue. The lack of real progress on treatments for Long COVID is worldwide. The articles I've read show that the studies are revealing much about Long COVID, but not much in the way of mitigation of the suffering for those affected.

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 Post subject: Re: Long Covid.
 Post Posted: Thu Dec 07, 2023 8:28 pm 
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From the current ongoing UK Covid inquiry with Boris Johnson (the then UK Prime Minister) under oath, where he is questioned about Long Covid (the video is very long so hopefully the YouTube timestamp i've set works as intended), the segment i want you to see is about 10 minutes long and ends at 1:38:50:

UK Covid-19 Inquiry - Module 2 Hearing PM - 7 December 2023
https://youtu.be/G-R6Xx_Oemk?t=5264

Aside from wishing i could be locked in a room alone with the then UK PM i'll refrain from commenting on the content.

Fyi this info might help understand who was who at that time if you watch the video:
Matt Hancock was the then UK Health secretary
Domonic Cummings was the then Chief Political advisor to the UK PM, Boris Johnson
Sir Patrick Vallance was the then UK Chief Scientific Officer
Sir Chris Whitty was the then UK Chief medical Officer
NPI is Non Pharmaceutical Intervention... e.g. lockdown and similar measures


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 Post subject: Re: Long Covid.
 Post Posted: Thu Dec 07, 2023 11:08 pm 
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The YouTube timestamp worked perfectly to bring me to the start of the 10 minute segment ending at 1:38:50.
I like the line of questioning and was not surprised by the denials made repeatedly by Mr. Johnson. Messaging about the risks of COVID leading to Long COVID was absolutely lacking. My wife and I were and are very aware of that risk because we consume lots of information from many sources, but the average person doesn't do what we do. Many people still see COVID as a Flu or Cold and that's more of a problem now that interventions and treatments are available to prevent most from being hospitalized or worse.

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 Post subject: Re: Long Covid.
 Post Posted: Fri Dec 08, 2023 4:12 pm 
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Joined: Sun Jan 13, 2013 4:13 pm
Posts: 1756
Location: Dunedin, Alba.
sboots wrote:
Messaging about the risks of COVID leading to Long COVID was absolutely lacking.

In the UK i'd argue it still is, yes mainstream media are now at long last occasionally talking about Long Covid, but at government level (UK and Scottish) the silence is deafening in that i don't recall ever seeing a public information campaign from any UK government department warning about the risks and dangers of Long Covid.

Boris Johnson's arguement every time "different risk profile" was mentioned was an eye-opener... i believe he doesn't have a clue what 'risk profile' means so he fell back on his get out 'sound bite' of 'the way to stop Long Covid was not too catch Covid', something that is laughable now that all restrictions have been lifted because to not catch Covid now would be like trying not to catch the common cold, impossible to do unless you sealed yourself into a sterile environment for the rest of your life.

I know you are aware of what i'm about to say Steve, but i think it's important to say it again... the risk of developing Long Covid has not gone away after a bout of Covid and there are still no treatments for Long Covid.


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