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Long CoViD or ME-CFS ?

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Dutch Josh View Drop Down
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    Posted: January 16 2022 at 9:47am

[url]https://www.publichealth.columbia.edu/public-health-now/news/long-covid-really-chronic-fatigue-syndrome-another-name[/url] or https://www.publichealth.columbia.edu/public-health-now/news/long-covid-really-chronic-fatigue-syndrome-another-name ;

Even after the World Health Organization declares the end of the global pandemic, COVID-19 will continue to cast a long shadow. By some estimates, nearly a third of people with a symptomatic infection still experience debilitating symptoms months later. Much about Post-Acute Sequelae of SARS-CoV-2 infection (PASC), the clinical term for what is commonly referred to as Long (or Long-haul) COVID, is unknown. However, one intriguing clue can be found in its similarity to myalgic encephalomyelitis, a disease also known as chronic fatigue syndrome or ME/CFS.

Mady Hornig, a Columbia Mailman School psychiatrist renowned for her research on ME/CFS, joined Walter J. Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS), for a late June panel discussion on post-acute COVID. The panel was part of WNYC Radio’s 2021 Health Convening, hosted by Nsikan Akpan, health and science editor at New York Public Radio.

Individuals with PASC/Long COVID rarely continue to test positive for an active infection (at least by standard tests) but continue to experience a constellation of symptoms, from fatigue to trouble with cognition and chest and abdominal pain. While the condition is most common in those with severe COVID, it is also seen in 19 percent of those with asymptomatic infections, according to an analysis by FAIR Health, although studies vary widely. But how the virus triggers these symptoms and why it happens in some people not others is so far unknown.

“We’re really dealing with a mystery right now,” said Koroshetz. Yet the similarities of Long COVID to ME/CFS are striking, starting with a significant overlap in the symptoms, notably fatigue, unrefreshing sleep or “post-exertional malaise”—a general sense of being unwell after even minor physical or cognitive exertion affecting a majority of those with long COVID, along with high rates of problems with memory and attention (“brain fog”). Pain is another feature in common. And the onset of both Long COVID and up to 75 percent of ME/CFS cases can be traced to a viral infection. Indeed, one might easily ask: could Long COVID and ME/CFS be one and the same?

and [url]https://www.sciencefocus.com/news/long-covid-patients-may-have-chronic-fatigue-syndrome/[/url] or https://www.sciencefocus.com/news/long-covid-patients-may-have-chronic-fatigue-syndrome/ ;

Some of the symptoms are consistent with what we know about COVID-19. The 39 per cent of long COVID cases that have shortness of breath could be linked to the damage the coronavirus can cause to lungs, while a third of people with long COVID still experience the loss of smell common with COVID-19 infection.

However, the most common long COVID symptom reported is fatigue, which has made some question whether the condition could in fact be the same as chronic fatigue syndrome (CFS).


Also referred to as myalgic encephalomyelitis (ME), CFS is a long-term condition that makes people experience extreme fatigue, particularly after exercise, in addition to problems sleeping, bodily pain and confusion known as brain fog. Scientists still don’t know what causes ME/CFS, but many patients’ onset of the condition follows infection with a virus or bacteria.

Until now, experts haven’t been able to confidently say whether ME/CFS is a part of long COVID. But a new study, by researchers at Icahn School of Medicine at Mount Sinai in New York, has tested 41 patients against ME/CFS diagnostic criteria.

Of the group, 46 per cent had four or more symptoms of ME/CFS and had experienced a substantial impact to their lives as a result of fatigue. A further 13 long COVID patients met the criteria but were excluded on account of having a large BMI or a cardiac disease.


And [url]https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Viral_and_other_infections[/url] or https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Viral_and_other_infections

The term post-viral fatigue syndrome (PVFS) is used to describe CFS-like symptoms that occur after a viral infection.[7] A recent review found Epstein-Barr virus (EBV) antibody activity to be higher in patients with CFS, and that a subset of patients with CFS were likely to have increased EBV activity compared to controls.[54] Viral infection is a significant risk factor for CFS, with one study finding 22% of people with EBV experience fatigue six months later, and 9% having strictly defined CFS.[55] A systematic review found that fatigue severity was the main predictor of prognosis in CFS, and did not identify psychological factors linked to prognosis.[56] One review found risk factors for developing CFS after mononucleosis, dengue fever or the bacterial infection Q-fever include longer bed-rest during the illness, poorer pre-illness physical fitness, attributing symptoms to physical illness, belief that a long recovery time is needed, as well as pre-infection distress and fatigue. The same review found biological factors such as CD4 and CD8 activation and liver inflammation are predictors of sub-acute fatigue, but not CFS,[57] however these findings are not generally accepted due to the use of the Oxford criteria in selecting patients. The CDC does not recognize attribution of symptoms as a risk factor.[6]

A study comparing diagnostic labels found that people labelled with ME had the worst prognosis, while those with PVFS had the best. Whether this is due to those with more severe or longer lasting symptoms results in a label with the description of ME, or if being labelled with ME adversely causes a more severe or prolonged illness is unclear.[58]


DJ Post viral problems are known to exist for decades. But what is causing it is-yet-unknown. Maybe we may learn more from Long CoViD ? 

We cannot solve our problems with the same thinking we used when we created them.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 09 2023 at 1:27am

Let me restart this...(january 9-2023) 


Agree fully with Eric that this explanatory model doesn't explain much of the evidence around long COVID.  Much focus on psychology with no evidence, and so little on viral persistence, immune dysregulation, inflammation, activation of clotting pathways, and vascular damage.

related to;

Eric Topol

@EricTopol
·
A new explanatory model proposed for #LongCovid https://thelancet.com/journals/lanres/article/PIIS2213-2600(22)00501-X/fulltext @LancetRespirMed  "an embodied condition with heterogeneous biological, psychological (experiential), and social (or environmental) factors integrated in complex relationships"

DJ;

Replying to 
Honestly find this quite offensive given all the evidence on long COVID now. 'Catastrophisation', 'de-conditioning' - really? I thought we had moved beyond this but this pseudoscientific rubbish with zero evidence behind it gets published.

and

Interesting how they talk about 'traumatic experience of illness' without realising their gaslighting directly contributes to this. There is zero evidence that long COVID is 'functional'. Loads of evidence of immune dysregulation and viral persistence.

may be much to "friendly". Immmune dysregulation and viral persistence means CoViD developing further...and then they are supposed to get "training to think their illness is mental"...Criminal insane !!!!








Replying to 
From a patient and carer perspective this is just the same old same old.   Something is poorly understood or hard to treat so it gets pushed to the psychological  category. Treatments on offer include cognitive therapy and 'helpful' suggestions such as "have you tried swimming?"

DJ, In the past also with ME-CFS "science" published all kinds of pseudo-science...Psychology can help dealing with grief and sorrow-but "Long CoViD" often is linked to long term damage -90% of cases even the virus still IN the host !!!- because of CoViD...Worldwide there must-by now-be hundreds of millions of "long CoViD cases"...You would need millions of extra psychology-helpers to deal with these numbers...!

I think dealing with grief and sorrow, taking their issues serious, may prevent people sinking into depression ON TOP !!!! of Long CoViD ! Long CoViD itself is NOT !!! mental ! 

Treating it as a mental issue could be wasting billions of pounds, dollars, euro's that could be used in a more effective way. Treating long CoViD patients as "mental cases" is increasing the problem...again !!!

Lots of scientists admit long term post-viral damage may be overlooked. "Post Viral Syndrome" is real...not "mental"....

(DJ-I realy can get very angry over this...HCW-ers here in NL who got sick in the early stages of the pandemic (no masks, no protection) now end up in legal fights to get some basic income...).

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Post Options Post Options   Thanks (0) Thanks(0)   Quote KiwiMum Quote  Post ReplyReply Direct Link To This Post Posted: January 09 2023 at 10:38am

My personal theory on Long Covid is that, in some cases, people simply haven't given themselves, or been given, enough time to fully recover from Covid. I'm fit and healthy but it took me 3 months to feel I'd got over Covid. I was exhausted, run down, even the slightest exertion - whether it was mental or physical - saw me feeling totally bushwhacked the next day, often with a sore throat or a cough. 

And I'm not alone in this. My hubby had the same,  as had a number of friends. But if you are in a job that is full time you only have limited sick pay and need to get back to work, and personally I think the majority went back too soon. 

So Long Covid is perhaps a rumbling, enduring, Covid infection that sticks around because the body hasn't been able to clear it because the person hasn't had the time/opportunity or resources or support to fully recover. 

Please bear in mind, I'm not a doctor and this is just based on my observations and my opinion.

Those who got it wrong, for whatever reason, may feel defensive and retrench into a position that doesn’t accord with the facts.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 09 2023 at 9:44pm

KiwiMum, good points, recovery may take time...more time then "just a flu/cold". People are used to the idea that "illness/sickleave" "has to be maximum one week" or so....

In the Long CoViD discussion -like in many other CoViD discussions (what is a "CoViD case"? A positive test ? Or positive plus symptoms ?) there is no real good definition-as far as I know...

An "old" criterium was "recovery within four weeks"...so that resulted in lots of "long CoViD cases"...three-six months may be now be seen as more realistic at some levels...

I am also not a doctor/scientist but you do not need a university degree to see "definitions matter"....


Another "wisdom" is "statistics is a great way to lie"...When looking at excess deaths one could compare excess deaths with the 3 years before...2020-2022..."so no excess deaths"! Well 2020,21,22 are pandemic years...so if 2023 has even excess deaths compared to those years excess deaths still increase...

I think "long CoViD" -in my eyes a form of CoViD-may be the most widespread form. However if one would define "CoViD" as a disease lasting up to one year to number of people dealing with Long CoViD will decrease a lot - in statistics....

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 09 2023 at 10:00pm

Maybe another point in the Long CoViD/ME-CFS discussion has to be-by now-do you need to have tested positive for CoViD before you may claim Long CoViD ? 

Or should we "go" for an "increase of ME-CFS" because a lot of Long CoViD cases never tested positive (PCR and/or at home LF) for CoViD as a start ? 

What I do get is there is some discussion in the medical world on "post viral disease"....The idea was; one catches an infection and fully recovers...however a.o. in ME-CFS that picture is different. 

Lyme-disease is another discussion-although with lots of links...The ELIZA-test used is very unreliable...You may not find signs of a tick-bite...Chronic Q-fever, long term Legionella also are part of this chronic=6 months + diseases. However for some diseases "chronic" may mean a year...in "Chronic CoViD" I would define as "virus still hanging out in the host" maybe after 4 weeks...

"Politics" seem to be in denial over the CoViD pandemic...(now "endemic" however excess deaths per year may be 2 million worldwide...) and it looks like some "politicians" "love to deny" Long CoViD as well ..."to save the economy"....

Sick workers can be replaced-by importing other workers (and returning the sick one if possible). Lost profits can not be replaced...this CoViD pandemic is indicating a mental disease "dominating" profit oriented societies...

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 10 2023 at 2:31am

Maybe more on long lasting health issues after initial infections;

SARS-1 survivors still experiencing fatigue, muscle and joint pain, shortness of breath and some newly developing problems such as neuropathy, numbness in the feet and hands after 10 years.

see  (march 2013) [url]https://globalnews.ca/news/404562/sars-10-years-later-how-are-survivors-faring-now/[/url] or https://globalnews.ca/news/404562/sars-10-years-later-how-are-survivors-faring-now/ ;

TORONTO – It took all of Bruce England’s strength to sit up in bed. He felt aches and pains all over his body, shortness of breath and a fever simmering through his forehead while he rested in hospital.

He recalled a day two weeks earlier when he’d seen a very sick patient while on the job. His staff had followed all the proper protocols and gave the patient medication. Still the patient wasn’t responsive, so they called England in.

It was March 2003. He was superintendent of Toronto’s office of emergency management.

“It was the first time in my career I ever stopped what I was doing and went to address a crew to see their concern,” England recalls.

-

It’s been a decade since England was infected with SARS, but he’s still feeling the effects.

Chronic fatigue. A compromised immune system that’s more vulnerable to pneumonias and colds. A feeling of numbness in his feet and hands. Some post-traumatic stress.

“I got the flu between Christmas and New Year’s. I’m still fighting it,” he told Global News.

Another example could be Q-fever;

[url]https://www.umcutrecht.nl/nl/over-ons/nieuws/details/nog-steeds-sterven-mensen-aan-chronische-q-koorts?lang=en[/url] or https://www.umcutrecht.nl/nl/over-ons/nieuws/details/nog-steeds-sterven-mensen-aan-chronische-q-koorts?lang=en ;

People still die of chronic Q fever

About the National Chronic Q fever Database
The Dutch Q fever outbreak, the largest ever in the world,

DJ...as far as is known that is.....it may be Q-fever outbreaks were missed/misdiagnosed...

The world's largest ever Q fever outbreak took place in the Netherlands between 2007 and 2011, and still results in deaths. That's according to the latest update of the National Chronic Q fever Database which reports 116 deaths in the latest update compared to 95 in 2018. At that time, a very large number of people became infected with the Q fever bacterium, Coxiella burnetii. Q fever is caused by this bacteria that passes from animals to humans, a so-called zoonosis. In most people, the bacteria disappear from the body, but not in everyone. In that case, we speak of chronic Q fever.

-

New numbers
From almost all hospitals in the Netherlands the data have been supplemented again. The chronic Q fever database now counts 585 chronic Q fever patients (350 with a proven chronic Q fever infection, 97 with a probable chronic Q fever infection and 138 with a possible chronic Q fever infection). This is 66 more than were recorded in 2018. Interestingly, even 10 years after the end of this major outbreak, new cases of chronic Q fever have continued to be diagnosed in patients infected years ago.

Mortality numbers
Of the 585 chronic Q fever patients, 107 patients died due to or related to chronic Q fever. An additional 21 have died since the last update in 2018 (86 deaths). With the already known 9 deaths due to acute Q fever during the outbreak, this brings the total number of deaths to 116. In the group of 350 patients with proven chronic Q fever infection, over 29% died from the infection. Because the diagnosis of chronic Q fever was often missed due to ignorance of it, the actual number of deaths from Q fever will be higher. These data show that an outbreak can cause new victims for a long time afterwards. Preventing Q fever and other zoonoses remains of great importance to prevent illness and death in humans.

So still after 10 years people die from chronic Q-fever in NL....

[url]https://en.wikipedia.org/wiki/Chronic_Lyme_disease[/url] or https://en.wikipedia.org/wiki/Chronic_Lyme_disease ;

Chronic Lyme disease (CLD) is the name used by some people with "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to Borrelia burgdorferi infection" to describe their condition and their beliefs about its cause.[2] Both the label and the belief that these people's symptoms are caused by this particular infection are generally rejected by medical professionals, and the promotion of chronic Lyme disease is an example of health fraud.[2][3] Chronic Lyme disease is distinct from genuine Lyme disease, a known medical disorder caused by infection with Borrelia burgdorferi, or with post-treatment Lyme disease syndrome, a set of lingering symptoms which may persist after successful treatment of infection with Lyme bacteria.

Despite numerous studies, there is no evidence that symptoms associated with CLD are caused by any persistent infection.[4] The symptoms attributed to chronic Lyme are generic and non-specific symptoms, such as fatigue and muscle pain, and in many cases are likely due to fibromyalgia or chronic fatigue syndrome.[5][6] Fibromyalgia can be triggered by an infection, and antibiotics are not a safe or effective treatment for post-infectious fibromyalgia.[7]

okay then;[url]https://en.wikipedia.org/wiki/Lyme_disease#post-treatment_Lyme_disease_syndrome[/url] or https://en.wikipedia.org/wiki/Lyme_disease#post-treatment_Lyme_disease_syndrome ;

People who have nonspecific, subjective symptoms such as fatigue, joint and muscle aches, or cognitive difficulties for more than six months after recommended treatment for Lyme disease are said to have post-treatment Lyme disease syndrome (PTLDS). As of 2016 the reason for the lingering symptoms was not known; the condition is generally managed similarly to fibromyalgia or chronic fatigue syndrome.[200]

DJ...in practice loads of bla-bla...."it is mental" ...at best dealing with sorrow, grief....

[url]https://en.wikipedia.org/wiki/Legionella#Pathogenesis[/url] or https://en.wikipedia.org/wiki/Legionella#Pathogenesis

In the natural environment, Legionella lives within amoebae such as Acanthamoeba spp., Naegleria spp., Vermamoeba spp., or other protozoa such as Tetrahymena pyriformis.[12]

Upon inhalation, the bacteria can infect alveolar macrophages, where they can replicate. This results in Legionnaires' disease and the less severe illness Pontiac feverLegionella transmission is via inhalation of water droplets from a contaminated source that has allowed the organism to grow and spread (e.g., cooling towers). Transmission also occurs less commonly via aspiration of drinking water from an infected source. Person-to-person transmission has not been demonstrated,[4] though it could be possible in rare cases.[13]

Once inside a host, the incubation period may be up to two weeks. Prodromal symptoms are flu-like, including fever, chills, and dry cough. Advanced stages of the disease cause problems with the gastrointestinal tract and the nervous system and lead to diarrhea and nausea. Other advanced symptoms of pneumonia may also present. However, the disease is generally not a threat to most healthy individuals, and tends to lead to severe symptoms more often in immunocompromised hosts and the elderly. Consequently, the water systems of hospitals and nursing homes should be periodically monitored.

 chronic form...[url]https://en.wikipedia.org/wiki/Legionnaires%27_disease#Epidemiology[/url] or https://en.wikipedia.org/wiki/Legionnaires%27_disease#Epidemiology indicating NL march 1999, Spain july 2001 had major outbreaks...[url]https://en.wikipedia.org/wiki/1999_Bovenkarspel_legionellosis_outbreak[/url] or https://en.wikipedia.org/wiki/1999_Bovenkarspel_legionellosis_outbreak ;

The Bovenkarspel legionellosis outbreak (DutchLegionellaramp; Legionella disaster) began on 25 February 1999 in Bovenkarspel, the Netherlands, and was one of the largest outbreaks of legionellosis in history.[1] With at least 32 dead and 206 severe infections, it was the deadliest legionellosis outbreak since the original 1976 outbreak in Philadelphia, United States.

Between 19 and 28 February 1999, the Westfriese Flora took place in Bovenkarspel, one of the largest indoor flower exhibitions in the world (later the Holland Flowers Festival). A vendor had several recreational hot tubs on display, with one of them filled from a long-inactive firehose and heated to 37 degrees Celsius (98.6 degrees Fahrenheit). In the water that had previously stagnated inside the hose, a very aggressive type of legionella pneumophila bacterium had developed.[2][3] The vendor did not add chlorine to the tubs, since customers were not permitted in them.

From 7 March, 13 patients were admitted to the Westfries Gasthuis in Hoorn. Unable to diagnose the patients, hospital staff called the Academic Medical Center (AMC) in Amsterdam. The AMC initially diagnosed six patients with legionellosis and a link with the Westfriese Flora was soon made. On 12 March, the Netherlands National Institute for Public Health and the Environment (RIVM) issued an epidemic warning to all doctors and hospitals, alerting them to Flora visitors and people with pneumonia-like symptoms. In the following weeks, 318 cases throughout the Netherlands were reported to the RIVM. All patients had visited the Westfriese Flora after 22 February and had become ill between 25 February and 16 March. 


It is known that 32 people died of the infection, one of them in 2001 after prolonged illness.

 A further 206 people became severely ill and many developed permanent health problems after visiting the Flora.


The 318 cases exceeds the 221 in the 1976 Philadelphia outbreak. While the Philadelphia outbreak had two more fatalities (34 versus 32), there is a possibility that others died in the 1999 Bovenkarspel outbreak, but were interred before the infection was recognized.

DJ...so is there any scientific reason to deal with Long/chronic CoViD as a "mental issue" ? NO !!!!!! Several other infectious diseases see long term health issues as well !

[url]https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome[/url] or https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome may indicate the medical world has a problem with long term effects of infectious diseases...Of course there is an economic aspect; avoiding chronic diseases cost money...

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 16 2023 at 1:00am

Our comprehensive review of #LongCovid has just been published https://nature.com/articles/s41579-022-00846-2 Phenomenal work by     

link [url]https://www.nature.com/articles/s41579-022-00846-2[/url] or https://www.nature.com/articles/s41579-022-00846-2 ;

Abstract

Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. 

At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily. 

Biomedical research has made substantial progress in identifying various pathophysiological changes and risk factors and in characterizing the illness; further, similarities with other viral-onset illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome and postural orthostatic tachycardia syndrome have laid the groundwork for research in the field. 

In this Review, we explore the current literature and highlight key findings, the overlap with other conditions, the variable onset of symptoms, long COVID in children and the impact of vaccinations. 

Although these key findings are critical to understanding long COVID, current diagnostic and treatment options are insufficient, and clinical trials must be prioritized that address leading hypotheses. 

Additionally, to strengthen long COVID research, future studies must account for biases and SARS-CoV-2 testing issues, build on viral-onset research, be inclusive of marginalized populations and meaningfully engage patients throughout the research process.

DJ, Long (and 90% of cases-some studies suggest chronic-with virus still in the body) CoViD is ignored in most countries strategies...The "political" idea tends to believe CoViD will become a "flu/cold-like illness". The-DJ in my idea WRONG !!!-thinking is the four known corona-COLD viruses would have started like some sort of "SARS" in history...SARS-1, MERS may indicate that way of thinking is wrong ! Severe Acute Respitory Syndrome is "severe" often...not "cold-like"...but it can become chronic, go further then respitory...

[url]https://www.thailandmedical.news/news/long-covid-news-japanese-researchers-find-cure-for-post-covid-chronic-coughs-associated-with-chronic-epipharyngitis-using-zinc-chloride[/url] or https://www.thailandmedical.news/news/long-covid-news-japanese-researchers-find-cure-for-post-covid-chronic-coughs-associated-with-chronic-epipharyngitis-using-zinc-chloride has some links...

Long lasting viral infections are NOT new....The body may need help in dealing with getting rid of the virus...somehow "politics/experts" keep denying these facts....

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 16 2023 at 1:37am

A problem with any "syndrome" is its complexity...DJ-I am NOT an expert; just give my view on it...

-There may be an ongoing disease-infection...Maybe lasting longer then "medical theory" expects them to last...

-On top/aside from that an infection may have done damage...

-Long lasting healthissues also have a mental aspect...from depression-like to decrease of condition...

So the answers will be "complex" as well;

-What works for one person may not de a thing for someone else

-Medication/supplements may need time to have effects-need the right dosages....

-[url]https://me-pedia.org/wiki/Graded_exercise_therapy[/url] or https://me-pedia.org/wiki/Graded_exercise_therapy -ignoring symptoms- has NO place in dealing with long lasting health issues...However regaining (some) condition may help improving quality of life...

[url]https://me-pedia.org/wiki/MEpedia:How_to_contribute[/url] or https://me-pedia.org/wiki/MEpedia:How_to_contribute and [url]https://www.meaction.net/[/url] or https://www.meaction.net/ may provide lots of info also of use for long/chronic CoViD.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote cobber Quote  Post ReplyReply Direct Link To This Post Posted: January 17 2023 at 7:06pm

I have had CFS for the last 30 years. I spent the first 3 years bed ridden.

It was caused by a vaccination I received when i went to Jakarta in 1993

Hence my reason for being against vaccinations.


By the way... I Have heard two people say they have long Covid. My neighbour. She talks about shortness of breath, dizziness and heart issues. And my best mate's wife. Who has immense fatigue and heart inflammation. She is degenerating and its quite scary. 

Both people have been told by doctors that they have post Covid complications. Both got their symptoms about a week after their Covid jab. Both had Covid at a mismatch time with their symptoms. 

I'm pretty sure my mate and his wife now realize its not Covid and instead a vax injury. My neighbour on the other hand is oblivious. She mentions how dangerous Covid is every time I see her. 


Post Covid or Vax Injury????


Anywho...

The thing which pulled me out of CFS was graded exercise. The progress was excruciating. I would often push it too far and relapse back into a limp lifeless state. It was really difficult. 

Diet was a factor. Essentially I ate only organic raw food and some fish for protein. I took Fish oil, which made quite a difference. No alcohol.

I was living like an athlete competing in a marathon. My marathon was getting out of bed. 

I have over the years learnt that CFS is associated with the body's inflammation response. Somehow there is an over reaction to exercise and the fatigue is something to do with inflammation. There is a feed back loop. 


Thats my two cents worth. If you have any questions about CFS. Maybe i can help





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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 17 2023 at 9:11pm

Cobber, thanks for your story. 

Do I think vax can cause CFS ? Maybe it can-maybe other words; the body reaction to the vaccine results in ME-CFS-like symptoms....

To blame ME-CFS on a vaccine one has to have had a/"the" vaccine....I would welcome further study on that....Is there a "sub-group" of people developing CFS-ME-like symptoms 3-6 months after a vaccination ? (Just basic statistics...it should not be that hard !) 

I tried to see how ME-pedia.org does see the vaccine-ME link....(ME-pedia a short term project ?) Somehow the link now not functioning...

[url]https://www.trouw.nl/nieuws/defensie-erkent-jungle-zieken~b4b3ffd0/?referrer=https%3A%2F%2Fwww.google.com%2F[/url] or https://www.trouw.nl/nieuws/defensie-erkent-jungle-zieken~b4b3ffd0/?referrer=https%3A%2F%2Fwww.google.com%2F is a NL link on NL marines developing ME-CFS like symptoms after vaccination in the '90 s...It would be interesting to learn if one vax did cause the problem or it was the combination and/or timing of vaccines...

Maybe to much vaccines in a short time were/are a problem ? 

Can "graded excercise" help "heal the body"? My view on it-it has also a high risk of increasing damage...what works for one may not bring much good for another...I did read stories of people ending up in wheelchairs....

There is always a mental factor....having support from family/friends/fellow sufferers...

You did see full recovery ? Or you are still in the process ? Medical evaluation ? Did "graded exercise" do the job or "did you somehow grow out of ME-CFS" ? (Sometimes symptoms go away/deminish...maybe zinc related ? Supplements ? ) 

A "syndrome" always is complex-however basic statistics are not that hard....There may NOT be a very clear link (I think) between ME-CFS and (most) vaccines...but over reaction of the body after vaccination may be a factor. 


We cannot solve our problems with the same thinking we used when we created them.
~Albert Einstein
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dutch Josh Quote  Post ReplyReply Direct Link To This Post Posted: January 29 2023 at 11:07pm

[url]https://www.coronaheadsup.com/health/long-covid/long-covid-fatigue-caused-by-an-arginine-deficiency/[/url] or https://www.coronaheadsup.com/health/long-covid/long-covid-fatigue-caused-by-an-arginine-deficiency/ ;

The mechanism that leads to chronic fatigue in Long Covid patients has been discovered, according to new Italian research.

“The mechanism of action that leads to the state of fatigue, or disabling exhaustion, linked to Long Covid which affects 1 in 3 people who are victims of the Sars-CoV-2 infection has been discovered: it is triggered by a deficit of arginine, an amino acid naturally produced by the body.

This is demonstrated by a study on long Covid conducted by the Agostino Gemelli IRCCS University Polyclinic Foundation – Catholic University Campus of Rome, according to which the chronic fatigue of the post-Covid syndrome is precisely associated with an alteration in the metabolism of arginine.

The new study highlighted that in patients with long Covid there is an alteration of the metabolism of arginine, which stimulates nitric oxide, a key enzyme for proper immune and vascular function.

The researchers also demonstrated that the administration of 1.6 grams of arginine and 500 mg of liposomal vitamin C for 28 days restores the metabolism of arginine to a normal level and effectively counteracts fatigue.”

Ansa.it: The mechanism that leads to chronic fatigue in Long Covid has been discovered (in Italian)

 

RESEARCH: Long Covid, a condition characterized by symptom and/or sign persistence following an acute COVID-19 episode, is associated with reduced physical performance and endothelial dysfunction. Supplementation of l-arginine may improve endothelial and muscle function by stimulating nitric oxide synthesis. A single-blind randomized, placebo-controlled trial was conducted in adults aged between 20 and 60 years with persistent fatigue attending a post-acute COVID-19 outpatient clinic.

Effects of l-Arginine Plus Vitamin C Supplementation on Physical Performance, Endothelial Function, and Persistent Fatigue in Adults with Long COVID: A Single-Blind Randomized Controlled Trial

 

Arginine is classified as a semi-essential or conditionally essential amino acid, depending on the developmental stage and health status of the individual. Preterm infants are unable to synthesize arginine internally, making the amino acid nutritionally essential for them. Most healthy people do not need to supplement with arginine because it is a component of all protein-containing foods and can be synthesized in the body from glutamine via citrulline.

Wikipedia: Arginine

DJ, I think in SOME CASES (only !!!) Arginine may be the (main) problem in "long CoViD" (by now most people dealing with CoViD may have "long" CoViD...so why not call CoViD a long term illness in many cases ? ).

CoViD does see damage all over the body (micro)clots in blood vessels, inflamation possibly in many places...DJ-there seems to a growing understanding other infections also may result in long term healthissues...And -YES-  "minds matter"...When you feel ill AND not understood, accepted there will be "mental issues" like depression on top of the physical ones...

And sometimes (chronic) depression can result in ME-CFS like symptoms...

Just like B-12 (vitamin) injections/testing ( the good way-so before any extra B12 is given..) maybe arginine may help in some Long CoViD stories...support, understanding, acceptance the healthissues are real-will limit furter damage. 

Maybe this study on arginine also may help to avoid "post-CoViD excess deaths "? 

We cannot solve our problems with the same thinking we used when we created them.
~Albert Einstein
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