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

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Sarah94 said:
Why do you think that's unlikely?
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Hi Sarah. I don't have any evidence for that statement it was just a feeling.

I don't know the first thing about Ross River virus so let's exclude that, but with EBV and Q-fever, these are well know to cause prolonged post-infectious fatigue, and in my mind I was hoping the health outcomes of Covid-19 would be more similar to known common respiratory infections like flu or the common coronaviruses. But learning about the relatively high incidence of post viral symptoms following SARS and MERS is more concerning, though, as you've pointed out, it seems to correlate with the severity of the initial infection, and Covid-19 is less severe than it's cousins.
 
Simbindi said:
I'm not sure which thread to put this in, but here is an article on Clare Gerada's description of how she 'beat' the coronavirus. Somehow, despite having no underlying health conditions, she is being referred to as a 'veteran' of the illness...

https://www.thesun.co.uk/news/11186999/coronavirus-paracetamol-chicken-soup-lemonade-survivor/

I think the article goes a long way to explaining the lack of empathy that's been shown to ME/CFS sufferers, especially in the online training provided to GPs (as discussed on previous threads).
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They referred to her as a "veteran GP", I think that just means she's been a GP for a long time.
 
Sarah94 said:
They referred to her as a "veteran GP", I think that just means she's been a GP for a long time.
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I'm not sure quite how to take it - it struck me as an unusual way to describe a doctor. It certainly makes her out to be more than an average GP, especially as the sentence was using the battle term 'beat' to describe her experience with the coronavirus, as if she is some kind of hero with a special fighting spirit that should inspire us all.

It's probably an intentional choice of word, the Sun knows how to write propaganda well.
 
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Simbindi said:
I grew up sharing a bedroom with 2 sisters, not unusual for working class families even today - so how can most individuals in families self isolate? She is so far from understanding most peoples' reality, it's very scary.
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Absolutely. Me too, murder as we didn't get on! Plus the whole family shared one bathroom, that kinda makes it tricky too.

Some people have no idea just how privileged they are.
 
It was interesting to hear Koroshetz and Breen acknowledge yesterday on the NIH teleconference call that a portion of those who get COVID19 will end up with ME.
This future number of people with post-infectious onset seems like an opportunity (sad to say) to get additional participants for the NIH clinical study.
I wonder if NIH could publicize the need for studying them..... (I DO dream, don't I?)
 
I guess this is just an N=1 anecdote, but a couple of years ago I decided to try to look into the 1983 US flu season, the time at which I developed "the worst flu of my life," which was closely followed on by my onset of ME.

I believe the Dubbo study relied on subjective patient assessments of the severity of their flu symptoms in order to correlate them with the onset of ME in specific patients.

Another way of measuring the severity of a particular circulating infection on the broader population might be to measure the number of deaths it is causing relative to what is expected.

I found the chart below in the CDC's Weekly Morbidity Mortality Report [WMMR] for 7/29/1983. It covers flu / pneumonia deaths between late 1980 and the spring / summer of 1983 when I became ill.

More deaths might just mean more cases, but I believe the chart takes that into account by showing the expected number of deaths given the number of cases.

Another possible explanation for increased deaths might be that the flu strain had become more severe / lethal. The CDC didn't know what the explanation was, at least not back in 1983.



I have added colored annotations to the chart below.

The blue box outlines a period when the OBSERVED flu / pneumonia deaths (purple arrow) not only exceeded the EXPECTED deaths (blue arrow), but also well exceeded the THRESHOLD below which the increase might just have been a random variation (green arrow).

The red vertical line on the RIGHT indicates the date I came down with "the worst flu of my life." The green vertical line next to it indicates the date I mark as the onset of ME, some three weeks later.

The other red line on the LEFT indicates when I got the second worst flu of my life, in December 1980, about the date John Lennon died. There was an enormous spike in unexpected flu/pneumonia deaths in that epidemic as well.

Needless to say, I think that there probably is something to the idea that the severity of the infection has something to do with the triggering of ME, but, that's no doubt prejudiced by my N=1 experience.

Flu Deaths1980-1983 chart.jpg
 
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Invisible Woman said:
Absolutely. Me too, murder as we didn't get on! Plus the whole family shared one bathroom, that kinda makes it tricky too.

Some people have no idea just how privileged they are.
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Yes, 6 of us and one small bathroom and only the single toilet in an 'open plan' 70's new build house. For a lot of the 70's, 80's and 90's most 3 bedroom houses in the UK were built this way, older council houses used to have an additional downstairs toilet (as mine does). They've started building new builds this way again, sometimes even with 2 bathrooms, but that is still very middle class.
 
Sarah94 said:
Shit shit shit. Do we have data on what percentage of SARS survivors developed this ME-like syndrome?
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After a long term followup 4 years later:
  • 40% of SARS-CoV (2002 epidemic) survivors still reported Chronic Fatigue
  • 27% of SARS-CoV (2002 epidemic) survivors met CDC critera for ME/CFS
https://www.ncbi.nlm.nih.gov/pubmed/20008700/
Arch Intern Med. 2009 Dec 14;169(22):2142-7. doi: 10.1001/archinternmed.2009.384.
Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up.
Lam MH1, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP.
Author information

Abstract
BACKGROUND:
Short-term follow-up studies of severe acute respiratory syndrome (SARS) survivors suggested that their physical conditions continuously improved in the first year but that their mental health did not. We investigated long-term psychiatric morbidities and chronic fatigue among SARS survivors.
METHODS:
All SARS survivors from the hospitals of a local region in Hong Kong were assessed by a constellation of psychometric questionnaires and a semistructured clinical interview for the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) to determine the presence of psychiatric disorders and chronic fatigue problems.
RESULTS:
Of 369 SARS survivors, 233 (63.1%) participated in the study (mean period of time after SARS, 41.3 months). Over 40% of the respondents had active psychiatric illnesses, 40.3% reported a chronic fatigue problem, and 27.1% met the modified 1994 Centers for Disease Control and Prevention criteria for chronic fatigue syndrome. Logistic regression analysis suggested that being a health care worker at the time of SARS infection (odds ratio [OR], 3.24; 95% confidence interval [CI], 1.12- 9.39; P = .03), being unemployed at follow-up (OR, 4.71; 95% CI, 1.50-14.78; P = .008), having a perception of social stigmatization (OR, 3.03; 95% CI, 1.20-7.60; P = .02), and having applied to the SARS survivors' fund (OR, 2.92; 95% CI, 1.18-7.22; P = .02) were associated with an increased risk of psychiatric morbidities at follow-up, whereas application to the SARS survivors' fund (OR, 2.64; 95% CI, 1.07-6.51; P = .04) was associated with increased risk of chronic fatigue problems.
CONCLUSIONS:
Psychiatric morbidities and chronic fatigue persisted and continued to be clinically significant among the survivors at the 4-year follow-up. Optimization of the treatment of mental health morbidities by a multidisciplinary approach with a view for long-term rehabilitation, especially targeting psychiatric and fatigue problems and functional and occupational rehabilitation, would be needed.
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Merged
Blog: Listen Up: Chronically Ill People Know What We’re Talking About When it Comes to COVID-19 Friday, March 20, 2020'

Finally, there’s the long term. Many people with myalgic encephalomyelitis/chronic fatigue syndrome, for example, started with viruses such as Epstein-Barr and Ross River Virus. There are also post-Ebola syndromes. This means that even after the pandemic passes, we could have a new crisis on our hands. Why aren’t journalists speaking to people who had this happen to learn more about the threat it poses? There’s plenty of discussion on Twitter among those in the chronic illness community about this and many other issues. They’re not hard to find.

The bottom line is that the hospital system in this country is riddled with problems and issues that people like me know all too well. Seen from the inside, it’s a fragile system that will be tested in the coming weeks, months, and even years.

The public needs to learn what we’re up against. Changes must be made before it’s too late. The chronically ill could play an important role in making this happen, for our own sakes and those of millions of others. We need to be part of that conversation, not treated as a side issue to be ignored.
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https://rootedinrights.org/listen-u...were-talking-about-when-it-comes-to-covid-19/
 
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Posts moved from Coronavirus - worldwide spread and control

Lucibee said:
Well Dr Phil Hammond on Broadcasting House (BBC Radio4) this morning seemed to think it was a possibility, although his solution was not to be scared, because fear activates the immune system (mind-body connection, you know), which will just make it worse and make it more likely that you will get CFS. :facepalm:
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I’ve just read Phil Hammond’s M.D. column in Private Eye (free to read):
https://www.private-eye.co.uk/issue-1518/news

In the column he repeats the assertion he made on BBC BH:
Dr Hammond said:
M.D. works in the world of post-viral fatigue and so is expecting an increase in workload further down the line. Evidence suggests that if you’re fearful and anxious when and after you contract a virus, it makes the symptoms and long-term sequelae worse. And the UK is currently bingeing on fear.
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I would be very interested to see the evidence he is referring to.

There doesn’t seem to a date on his column but the data he refers to is from 15 March.

Although he never pulls his punches when criticising government’s treatment of the NHS, with other subjects he seems to be more of a calculated fence-sitter. I read the article twice and still wasn’t quite sure what point he was trying to make other than that he doesn’t seem to be too bothered about older people dying, and that we should all be less worried.

His prescription for Covid-19 is as follows:
Dr Hammond said:
Laughter is the best medicine – unless of course you have syphilis, in which case it’s penicillin. There are no effective drugs yet for Covid-19 and the best ways to boost your immune system are not the nonsense new age supplements doing the rounds (there’s a $200 magic yoghurt pill you can shove up your arse) but laughter and sex. The second drug my GP surgery ran out of (after paracetamol) was Viagra.
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Dr Hammond is rightly critical of nonsense new age supplements. Do we know if he promotes The Lightning Process at his CFS clinic? I wonder if he’s read Phil Parker’s advice on Covid-19 in The Sun. Maybe if you believe that pretend pills will protect you from covid-19 then that will make you less anxious, which would then reduce your risk of developing ME/CFS (or is it just post-viral fatigue?)
 
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Robert 1973 said:
I would be very interested to see the evidence he is referring to.
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That was the foundation of the BPS entry into ME quoting the Imboden, Canter Cluff papers on chronic brucellosis from 1959 and Asian flu from 1961 and 1965. The "science" looks wholly dubious. That seems to have been the great rediscovery of 1987, but just who rediscovered the papers is as yet a mystery.
 
Dr Hammond said:
M.D. works in the world of post-viral fatigue and so is expecting an increase in workload further down the line. Evidence suggests that if you’re fearful and anxious when and after you contract a virus, it makes the symptoms and long-term sequelae worse. And the UK is currently bingeing on fear.
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Great. Another self-fulfilling prophecy. So if there is an increase in ME-like cases after the epidemic, they can simply blame it all on the *fear* of the epidemic and not the virus itself. :sigh:
 
Lucibee said:
Great. Another self-fulfilling prophecy. So if there is an increase in ME-like cases after the epidemic, they can simply blame it all on the *fear* of the epidemic and not the virus itself. :sigh:
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Quite, in a way they have to do that don't they otherwise you'd have the legitimately physically ill patients who developed ME/CFS following the conoravirus, so they would be medically/socially/ benefit-wise acceptable while the rest of us would still be viewed as BPS cases, they might then find that a bit difficult to sustain, so if come out now with blaming the patients then that dichotomy is solved plus you already have the BPS model of treatments ready and waiting to go, no need for any expensive research for these new cases, just give them CBT/GET or LP, all solved at minimal cost tot he state/NHS and insurance companies.
 
Robert 1973 said:
Dr Hammond is rightly critical of nonsense new age supplements. Do we know if he promotes The Lightning Process at his CFS clinic? I wonder if he’s read Phil Parker’s advice on Covid-19 in The Sun. Maybe if you believe that pretend pills will protect you from covid-19 then that will make you less anxious, which would then reduce your risk of developing ME/CFS (or is it just post-viral fatigue?)
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The fact that he mentions the thing about fear being relevant in the inevitable surge of post-viral cases makes it clear his opinion on the topic is useless and best ignored. Unfortunately on this topic, it comes with dogmatic confidence and, here, a highly visible platform. Not exactly ideal when the self-proclaimed "experts" on a topic are pulling their advice straight out of their portable sewer system.

I assume we'll see plenty of Wessely on the topic for a while. Until the scam is revealed for what it is, but who knows how long that will take?
 
Robert 1973 said:
Dr Hammond is rightly critical of nonsense new age supplements. Do we know if he promotes The Lightning Process at his CFS clinic? I wonder if he’s read Phil Parker’s advice on Covid-19 in The Sun. Maybe if you believe that pretend pills will protect you from covid-19 then that will make you less anxious, which would then reduce your risk of developing ME/CFS (or is it just post-viral fatigue?)
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(hmm says a man who works for EC)
 
The Norwegian Institute of Public Health launched an online form March 22nd where people could report whether they suspected they'd been infected by the virus.

Anyone who's had symptoms as cough, breathing difficulties, fever etc from March 15th and onwards are asked to fill out the form.
So far 23 631 people have reported of symptoms, according to the Institute of Public Health's report of yesterday.

Here are some of the results thus far (my bold):
  • 59% are women and 41% men
  • Mean age is 37 years for both women and men
  • 25% had been in touch with a medical doctor
  • 2% had been tested for Corona virus
  • 45% had fever
  • 49% reports of being more tired than usual
    answer options were:
    as usual
    more tired than usual, but mostly up and about
    need a lot of rest but am sometimes up and about
    is bed bound and in need of some help
    is bed bound and in need of a lot of help
I realise it's still early days and that this might not tell us a lot as for now.

Selvrapportering av symptomer som kan være covid-19
google translation: Self-report of symptoms that may be covid-19
 
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