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

Thought this made for a nice summary of some of the main facts:

https://www.youtube.com/watch?v=WpPnwm9UGrM

 

Word is concerns were raised and it was cancelled, thankfully.

https://twitter.com/user/status/1328665037851029504

 

Article (paywalled) in Svenska Dagbladet about 'long covid' in children:

Långvariga covid-19 symtom hos barn undersöks
https://www.svd.se/langvariga-covid-19-symptom-hos-barn-undersoks

- Fatigue is the common denominator, he says."

Case report:
https://onlinelibrary.wiley.com/doi/10.1111/apa.15673

After the publication of the case study several parents have reached out to Professor Ludvigsson, suggesting that more than a few children are afflicted.

 

https://www.theguardian.com/world/2...erges-with-me-including-debate-over-treatment

Article in the Guardian quoting Amy Small.

Generally well written I think but at the end the inability of medical 'experts' to stop insisting that exercise is good and deconditioning is a problem shows through.

I think again this emphasises the risks involved in the NICE ME guideline draft. Health professionals cannot get it out of their heads that in order forepeople tone able todo more they should deliberately do more. WRONG.

 

I suppose the question to be asked of Dr Manoj Sivan is how he differentiates between those patients who he thinks may benefit from GET, and those who won't , or is he concerned only with the health of those who may?

 

Really pleased to have been able to work with #MEAction to get some better coverage in the Guardian (of all places) around ME. Thank you especially to our press volunteer for her work on this.

Agree though that it is so deeply ingrained that exercise can only ever be good - gonna be a long road to create wide understanding that this is not a universal truth.

 

https://twitter.com/user/status/1329443442028654595


"The heterogeneity in the physical activity pattern between subjects within the CFS and control group did not differ." https://pubmed.ncbi.nlm.nih.gov/21843746/

"There is no difference in variation of physical activity levels between patients with chronic fatigue syndrome and healthy control subjects" https://pubmed.ncbi.nlm.nih.gov/20943713/

"No between-group differences were found in the pattern or amount of sleep, activity, or cortisol secretion." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079947/

"the present study was not able to confirm the hypothesis of a more fluctuating activity pattern in patients with CFS, nor during the day, nor during the registration period." https://www.sciencedirect.com/science/article/abs/pii/S0003999311004175

"there were no significant group, gender or interaction effects for the number of absolute large or relatively large day-to-day fluctuations (Table 2 and Table 3)." https://pubmed.ncbi.nlm.nih.gov/11164063/

 

The COVID long-haulers: When the body gets better, but the brain does not

https://www.tampabay.com/opinion/20...dy-gets-better-but-the-brain-does-not-column/

If people (hell, especially medicine) understood how ruinous brain fog is, they would take this a whole lot more seriously.

 

I'm just waiting for the advice to appear suggesting that sufferers learn chess or start doing sudoku puzzles i.e. GET for the brain, although they'll call it something else.

 

Umm . . .

https://pubmed.ncbi.nlm.nih.gov/28765100/

 

That is horrifying! But, sadly, not surprising.

 

Oh I've seen that already. Someone recommending LC patients with brain fog to do puzzles or take online classes. To people who report struggling remembering simple things. Ugh. I can't remember who but it was a physician working at a rehabilitation clinic, I think, who said something like exercise will be the big thing to rehabilitate.

Anyway at least the evidence will speak for itself, as long as it's properly recorded and not distorted.

 

Definitely needs to be stronger but at least this is (roughly) the right message.


Exercise After Covid-19? Take It Slow

https://www.nytimes.com/2020/11/17/...recovery-complications-clots-heart-lungs.html

This makes it doubtful they know much about PVFS but whatever, trained wrong on purpose and all...

Right attitude:

It really does seem important that most doctors should have that information, then, because most will continue to advise the wrong thing until then.

The author:
https://twitter.com/user/status/1328671163246141442

 

I don't just get brain fog, I get actual brain pain. When thinking hurts even buying a toaster is traumatic.

 

https://twitter.com/user/status/1329764895986839552

 

Acta Pædiatrica: Case report and systematic review suggest that children may experience similar long-term effects to adults after clinical COVID-19 - Jonas F. Ludvigsson


Abstract

Aim
Persistent symptoms in adults after COVID‐19 are emerging and the term long COVID is increasingly appearing in the literature. However, paediatric data are scarce .

Methods
This paper contains a case report of five Swedish children and the long‐term symptoms reported by their parents. It also includes a systematic literature review of the MEDLINE, EMBASE and Web of Science databases and the medRxiv/bioRxiv preprint servers up to 2 November 2020.

Results
The five children with potential long covid had a median age of 12 years (range 9‐15) and four were girls. They had symptoms for 6‐8 months after their clinical diagnoses of COVID‐19. None were hospitalised at diagnosis, but one was later admitted for peri‐myocarditis. All five children had fatigue, dyspnoea, heart palpitations or chest pain and four had headaches, difficulties concentrating, muscle weakness, dizziness and sore throats. Some had improved after 6‐8 months, but they all suffered from fatigue and none had fully returned to school. The systematic review identified 179 publications and 19 of these were deemed relevant and read in detail. None contained any information on long COVID in children.

Conclusion
Children may experience similar long COVID symptoms to adults and females may be more affected.

 

https://twitter.com/user/status/1329809481513963524