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

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Robert 1973 said:
Supporting Patients Living with Covid-19 Long Term Effects

Wednesday 9th December 2020

Virtual Conference

https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/covid-long-term-effects

Brochure:
https://www.healthcareconferencesuk...erences/2020/dec-2020/long-covid-dec-2020.pdf

“Chaired by Dr Emma Ladds, Academic Clinical Fellow at University of Oxford who has been working alongside Prof Trish Greenhalgh to produce a report for the House of Lords round Long Covid, this virtual conference focuses on delivering services to support people who are living with long term effects of covid-19.”

Speakers Include:

Dr Clare Gerada
Medical Director
The Practitioner Health Programme

Prof Lynne Turner-Stokes
Consultant in Rehabilitation Medicine
and Director of the Regional Hyper-Acute Rehabilitation Unit Northwick Park Hospital

Professor Trudie Chalder
Professor of Cognitive Behavioural Psychotherapy, Kings College

Quite a line up.

I wonder if @dave30th @Jonathan Edwards @Caroline Struthers or anyone else from here might be able to register to take part in this.

It would be interesting to know what they all think of the new draft Guideline for ME/CFS given that Prof Greenhalgh said they were going to try to align them (or words to that effect).
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Word is concerns were raised and it was cancelled, thankfully.

 
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

"Children are also suspected of having long-term problems with covid-19.
This is the opinion of Jonas F Ludvigsson, professor at Karolinska Institutet, who in a case report describes five Swedish children with a probable "long covid".
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- Fatigue is the common denominator, he says."
"- The children in the study were between nine and 15 years old, of which four were girls. All five showed fatigue, difficulty breathing and palpitations or chest pain more than two months after they received covid-19, says Professor Jonas F Ludvigsson, also a pediatrician at Örebro University Hospital.

None of the children should have suffered from any underlying disease such as cardiovascular disease, obesity or diabetes - disorders that have been reported to make the disease course worse in adults in risk groups.

- Four of the children had headaches, difficulty concentrating, muscle weakness, dizziness and sore throat. Symptoms that are also seen in adults with long-term problems after covid-19, says Jonas F Ludvigsson.

The remaining symptoms persisted for six to eight months after falling ill. General fatigue was the most common symptom.

- No one had completely returned to school after six months. Healthcare needs to follow up on these children with significant problems. More research is needed on long-term covid-19 and its effects on children, says Ludvigsson."
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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.
 
Jonathan Edwards said:
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.
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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.
 
Jonathan Edwards said:
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.
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"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/

These COVID “long-haulers” experience ongoing muscle aches, fatigue, decreased endurance, dizziness and a constellation of cognitive symptoms, including slowed thinking, loss of concentration and decreased ability to focus, decreased immediate and short-term memory, headache, insomnia and problems with visual tracking (which can interfere with using a smart phone or computer). For some, this syndrome is bad enough to disable them from their jobs and seriously interfere with their daily lives. This cluster of problems suggests widespread involvement of the brain.
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In milder cases, the causes are less clear, but could include chronic inflammation, as is speculated to be the cause of the condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has been reported in patients after infection with a cousin of COVID-19, severe acute respiratory syndrome (SARS), as well as several other viral infections.
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As COVID-19 is a new disease, we do not know how many patients will contract this chronic syndrome, though early studies suggest tens of thousands have already been diagnosed in the United States alone, and that 50 percent to 80 percent of COVID patients have at least one bothersome symptom three months after infection. We do not yet know if or when any of these patients might recover.
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Vaccines are on the way, but even after they are released, it will be several months until we achieve enough population immunity for us to be confident such precautions are no longer needed. Until then we must use the very effective tools already at hand. The brain you save may be your own.
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If people (hell, especially medicine) understood how ruinous brain fog is, they would take this a whole lot more seriously.
 
Arnie Pye said:
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.
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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

For the past 20 years, when patients asked me about exercising while recovering from a viral illness like the flu, I gave them the same advice: Listen to your body. If exercise usually makes you feel better, go for it.

Covid-19 has changed my advice.
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Early in the pandemic, as the initial wave of patients with Covid-19 began to recover and clinically improve, my colleagues and I noticed that some of our patients were struggling to return to their previous activity levels. Some cited extreme fatigue and breathing difficulties, while others felt as if they just couldn’t get back to their normal fitness output.
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This makes it doubtful they know much about PVFS but whatever, trained wrong on purpose and all...
What was most surprising is that we saw these problems in previously healthy and fit patients who had experienced only mild illness and never required hospitalization for Covid-19.
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As the pandemic continues, we’ve heard countless stories of elite athletes in top physical condition struggling to regain their form after Covid-19. More than a dozen women on the U.S. Olympic rowing team who contracted the virus in March described persistent fatigue for weeks after the initial illness. Recreational athletes, including runners and triathletes, have complained of prolonged respiratory symptoms during exercise.
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Don’t exercise if you’re still sick. Do not exercise if you have active symptoms, including a fever, cough, chest pain, shortness of breath at rest, or palpitations.

Slowly return to exercise. Even if you had only mild symptoms, with no chest pain or shortness of breath, you should still wait until you have at least seven days with no symptoms before returning to exercise. Start at just 50 percent of normal intensity. A gradual, stepwise and slow return to full activity is recommended.
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Stop exercise if symptoms return. If you develop symptoms after exercising, including chest pain, fever, palpitations or shortness of breath, see a doctor.
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Right attitude:
And remember, as doctors we can run tests, but you know your own body better than anyone else. You know how you normally feel when you walk up the stairs, when you run, when you bike. If you’ve had Covid-19, are those things harder for you? Are you noticing a change in your body? If the answer is “yes,” it’s important to speak with your doctor.
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Even if you’ve never been diagnosed with Covid-19, be mindful of how you are feeling. Many people with Covid-19 don’t know they have it, or have general symptoms like gastrointestinal upset, fatigue or muscle aches. So if you’ve been feeling “off” during exercise, listen to your body, ease up and check with your doctor.
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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:
 
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Shinygleamy said:
I don't just get brain fog, I get actual brain brain. When thinking hurts even buying a toaster is traumatic.
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One of the more frustrating and frightening experiences with ME is standing in a supermarket trying to make a decision about which thing to buy. My brain just goes gaga. No amount of willpower or mental exercises fix that.

Best option here is to have a list of standard items (and alternatives), and learn their locations in the supermarket. IOW, minimise the amount of braining I have to do while there. Doing searches and research online before hand helps. Also helps a lot to go when it is least busy.

Being able to order online and get it delivered is a very good option too, where available.

Though doing some routine weekly shopping is a good excuse to get out of the house and have some social contact, even if limited.
 
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.
 
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