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

From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

Yeeeeeaaaah, I'm gonna go ahead and strongly disagree with that. Maybe "used to" telling people to get lost. At the very least it has been very selective in "dealing with".

"Medicine has been used to". Also "nobody knows". Anybody see a problem here? I mean, now there is a problem because it can't be brushed aside but surely the fact of having done nothing and have nothing more than ¯\_(ツ)_/¯ to offer is a problem in itself? One that needs systemic fixes?

Not very promising on the whole "learning from the past" thing. If that thinking right here had been applied decades ago we wouldn't be in this mess.

Since that small but very remarkable blip of a post-viral cohort is "alarming", what does that make of a patient population many times larger, made up of tens of millions, with the same problems? What was is again that we saw recently in how they perceive us? "Laughable"? "Made-up"? "Conspiracy"? Yeah, definitely "used to deal with this problem".

Anyway, it's a good article and signals progress. But it's frustrating to see people describe a bunch of trees, saying they know all about bunches of trees, but can't see the forest or know anything about what a forest is.

 

The article is excellent and it's amazing to see so much research into the sequelae of COVID19. My hope is that the pathophysiology of these long-term symptoms, although caused by COVID19, does not differ much from that of long-term symptoms in other viral infections (e.g. EBV) -- and thus the ongoing research could very well teach us a lot about ME. After all, fatigue, brain fog, reduced tolerance to exertion (hint for PEM?), even dysautonomia are all being widely reported.

 

Post-covid patients in Australia have this nonsense to look forward to:

https://www.abc.net.au/news/health/...zBxQm0-oVUWy3hPjq5T5ri1ltUv0H3hCqctWEteCbE6rs

I collected an IBS diagnosis last year. I knew getting the diagnosis wouldn't make my life any better or help me access better treatments.

 

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

Who was it who said the more symptoms a patient reports, the more likely psychological factors are involved in perpetuation of the illness?

 

Symptoms Reported Week Over Week

The symptoms reported by all respondents at any time are listed in order of percentage affected. For visual simplicity we have not included confidence intervals on the mean values. The top 10 symptoms reported over the entire 8 weeks by respondents are: Shortness of Breath (Mild), Tightness of Chest (Mild), Fatigue (Moderate), Fatigue (Mild), Chills or Sweats, Body Aches (Mild), Dry Cough, Elevated Temperature (98.8-100), Headache (Mild), and Brain Fog/Concentration Challenges.

 

https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists

Good news in general but also probably also for us as it may mean more of the long-term problems are more ME/CFS-like.

I’ve never heard this mentioned in relation to ME/CFS which followed EBV. I wonder could this happen in some ME/CFS patients.

 

https://twitter.com/user/status/1289849851149078528


https://www.theguardian.com/comment...rs-russian-meddling-is-at-the-heart-of-brexit

 

I thought David Oddie's name rang a bell - he was involved with the East Cornwall Green Party - as was I - in 1989!

 

IIRC Simon Wessely said the greater number of symptoms in the Canadian Consensus Criteria were more likely to capture mental health disorders than the CDC definition, and, contrary to what advocates for the CCC believed, would not identify CFS cases more accurately.

But in general it’s a well used rule of thumb by the time-pressed medic, that the greater the number of ‘non-red flag’ (or non specific) symptoms a patient reports, the higher the index of suspicion for somatisation.

 

Article in FT
Fatigue plagues thousands suffering post-coronavirus symptoms

full article here
https://www.ft.com/content/8a8c9630-7cce-417a-8732-f0589009be14

 

FT article:
Fatigue plagues thousands suffering post-coronavirus symptoms

‘Long-haul Covid’ has already become mired in controversy over causes and treatment
https://www.ft.com/content/8a8c9630-7cce-417a-8732-f0589009be14

I managed to access this article for free by using an incognito browser and clicking on the link from the FT Facebook page:


Selected quotes from article:

Disappointing to see the “death threats” allegation raised again by an anonymous “expert in the field”. If such threats have been made by individuals they do not represent the ME community, and I’m sure we would all condemn them, just as we condemn the flawed science and the unethical smearing of the ME community by those who are paid to do us no harm. Unfortunately there is no mention of the bad science and unethical behaviour of these so-called experts which have resulted in very real harms to patients.

[edit: crossed with @Sly Saint’s post above]

 

We also know that enterovirus has a predilection for nerve cells and the heart. Enteroviral endocarditis has been well researched in Japan for instance. We should have had decent research into cardiac problems with ME for years. Heart problems in people with ME are too easily dismissed as a result of our sedentary lifestyle.

 

Well, if an expert in the field said it, it must be true. If the charge is to be made, let us have some specifics.

Do journalists no longer believe in Who, What, Where, When, Why?

 

I missed this gem the first time I read the FT article:

I wonder if Dr Nicholson is aware that his KCL colleague and “expert in the field” once claimed: “we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced” (https://www.bmj.com/content/296/6623/696)

 

This really annoys me. If you ask people with MS about the symptoms they experience it makes a long list, the difference is that doctors stop asking at the main points.

Diabetes is diagnosed by high blood sugars but if you look online there is a long catalogue of other things from facial discolouration to high ferratin levels. The there are the comorbidities like candida and bladder infections up to heart disease and nerve pain.

If you are diagnosed you do not list symptoms, you only have to do that with a doctor who does not understand ME. If we could go in and say "I have PEM" and that was enough for the GP to understand our lives we would not need to give a long list either.

 

I expect that the BPS group are going to work to use C-19 as a way of entrenching their own positions, and encouraging the view that the problems around ME/CFS are a results of patients' misunderstandings of their sophisticated work.

 

Also the tedious use of the term "people suffering from chronic fatigue..." (no 'syndrome', although CFS is of course not the term favoured by most sufferers).

 

This article is so weird. It brings up the "controversy" without stating any of its nature or components, the simple fact that it is simply the presence of deniers who have dominated the field for decades and whose recommendations have been used in practice to disastrous outcomes, but bizarrely suggests not to discount the purveyors of the controversy. Or something. The whole dualism is not any more relevant than the precise nature of HIV deniers' beliefs is relevant to the fact that there is no real controversy over this, just weird people pushing a denial belief system. It has no place whatsoever in that article.

Total cheap shot of poor journalism to cite vague threats, debunked by a tribunal decision. Anonymous, of course, Professor Equipoise. What cheap cowards these people are.

 

From the memory hole. History doesn't repeat itself but it says the same things.


Swine flu fallout: many suffer nagging symptoms long after H1N1 subsides

https://www.thestar.com/life/health...agging_symptoms_long_after_h1n1_subsides.html


As is tradition, medicine only see these things when they happen in front of their eyes, otherwise they may as well not exist. The only noted cases of ME outbreaks happened in health care settings, not because they happened more often but because it's the only place they can get noticed. I really would like for medicine to master object permanence, it would help so many people.

Had the post-COVID-19 community not connected this much over the Internet medicine would not have been aware of this problem until years, if ever.

What do we call people who are surprised every time they see the same thing? Apparently the same as whoever graduated last in medical school. I know this is the fault of a small group of people but come on, there are higher expectations here. If bridges kept falling all the time civil engineers would react and fix the underlying causes, not just continue to build bridges that keep falling and killing people.