Status
Not open for further replies.
There are 2 references to "chronic fatigue syndrome" in this CBC (Canada) piece:
https://www.cbc.ca/news/canada/kitc...ity-of-guelph-covid-19-long-haulers-1.5811853

Guelph researchers look for answers on lasting misery of coronavirus long-haulers

‘There are people who will have these lingering presentations and they will want answers,’ researcher says

"It's like a snowball rolling down a hill with COVID now and so my question is, if we are seeing a chronic fatigue syndrome or fibromyalgia syndrome emerging from the COVID, is that finally going to shine a spotlight on these types of diseases that have been really ignored to our own peril?"
---
The other piece, of course, is that when we're evaluating chronic complications of infectious disease, there's a sense that it's going to dovetail, it's not going to be fully unique to COVID-19. This is going to help propel research into chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, none of which are going to go away with a COVID-19 vaccine."

 
HSJ podcast: Long-COVID care cannot be delayed any longer (19 November 2020)

Posted by PatientSafetyLearning Team

With delays to promised support and trusts accused of penalising staff during their recovery, HSJ dig into why the NHS must provide support sooner rather than later for those experiencing Long-COVID.

Patient Safety Learning has recently published a blog calling for better information and engagement with patients who have Long COVID: Clear NHS plan needed to reassure Long COVID patients. We have also co-produced a patient information leaflet with the Royal College of General Practitioners, to help patients understand what they can expect from their GP.

To listen to the HSJ podcast, click on the link below.
Patient Safety Learning 91
Posted 37 minutes ago
@Dr Charles Shepherd Thank you for sharing these resources and tips with us. We've added your guide to our Learn library so others can use it: https://www.pslhub.org/learn/corona...es-and-post-covid-mecsf-september-2020-r3623/
Please do share any other resources you have on long covid and also on ME/CFS or if you would like to write a blog on this we'd be happy to post it on the hub.
https://www.pslhub.org/learn/corona...november-2020-r3599/?tab=comments#comment-288
 
Long Covid: what teachers and pupils need to know


https://www.tes.com/news/long-covid-what-teachers-and-pupils-need-know


Looking through one of my NICE files and discovered that Dr David Vickers, quoted in above was on the 2007 NICE GDL Committee. Anyone know what the current approach is for the Cambridge Paediatric Clinic? From memory, some of their info is typically dire.
He seems to have a different view of prevalence of ME in youngsters, than Crawley.

"As for cases of ME/CFS and PVFS in children, Vickers says cases are far fewer among under-18s and he sees no reason for that not to be the case with long Covid, too.

Not too sure what he means here either:
Vickers puts it more bluntly: “Frankly, anyone saying this is a psychiatric diagnosis is being very, very simplistic.”

To be honest though the other expert quoted is Dr Gerald Coakley. Yes the one who highly recommends Jessica Bavinton, also of NICE 2007 fame. He is a rheumatologist whose specialities include CFS.

“Another common feature of PVFS is poly-symptomatic distress: patients in this category have numerous physical symptoms, which are bewildering to them and to doctors alike. So they will report, for example, restlessness, their heart racing, feeling faint, feeling dizzy or tingly and numb, or having irritable bowel symptoms. Unsurprisingly, people experiencing many symptoms like this feel anxiety, which in turn can drive more physical symptoms.”

So, my main concern is that this journo has at least 3 very dodgy contacts for info about ME, including Jo Daniels


 

What a dysfunctional mess. It's been months and exactly zero progress, no greater understanding out of sheer stubbornness with debunked myths. Not even able to compare two apples because it's not deemed worth the effort to pick them up for a comparison.

The outcomes here are a direct measure of the effort that is put into it. The effort is pathetic, basically non-existent. There is no sugar-coating it, this is pathetic system-wide failure.

I did not have high hopes but I did have some hopes of the most basic competence rearing its way by now. Nope. Not even a little. This is why we can't have nice things. Literally.
 
Frequent neurocognitive deficits after recovery from mild COVID-19

https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcaa205/5998660

Neuropsychiatric complications associated with coronavirus disease 2019 caused by the Coronavirus SARS-CoV-2 (COVID-19) are increasingly appreciated. While most studies have focused on severely affected individuals during acute infection it remains unclear whether mild COVID-19 results in neurocognitive deficits in young patients. Here, we established a screening approach to detect cognitive deficiencies in post-COVID-19 patients. In this cross-sectional study, we recruited 18 mostly young patients 20 to 105 days (median 85 days) after recovery from mild to moderate disease who visited our outpatient clinic for post-COVID-19 care. Notably, 14 (78%) patients reported sustained mild cognitive deficits and performed worse in the Modified Telephone Interview for Cognitive Status (TICS-M) screening test for mild cognitive impairment compared to 10 age-matched healthy controls. While short-term memory, attention and concentration were particularly affected by COVID-19, screening results did not correlate with hospitalisation, treatment, viremia or acute inflammation. Additionally, TICS-M scores did not correlate with depressed mood or fatigue. In two severely affected patients we excluded structural or other inflammatory causes by magnetic resonance imaging, serum and cerebrospinal fluid analyses. Together, our results demonstrate that sustained subclinical cognitive impairments might be a common complication after recovery from COVID-19 in young adults, regardless of clinical course that were unmasked by our diagnostic approach.
 
COVID-19 long haulers are developing debilitating, chronic condition called POTS

https://www.wate.com/health/coronav...g-debilitating-chronic-condition-called-pots/

Video report on POTS. Pretty good, the transcript is on the page.

I don't know how things differ elsewhere but in Canada, neither POTS nor dysautonomia officially exist, it has pretty much the same status as ME, some physicians accept it, most have never heard of it. What a mess.
 
Probably one for @Jonathan Edwards, given the strong assertion of a "definitive" case:





First flare of ACPA-positive rheumatoid arthritis after SARS-CoV-2 infection

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30396-9/fulltext

Why clinical polyarthritis occurs in some individuals with these elements is unknown, but external factors such as viral infection could act as a trigger. Indeed, although a definitive mechanistic link between viruses and the induction of autoreactivity is far from established, several studies in humans and animals have shown that viruses can induce or protect the host from autoimmune disease, depending on several factors including genetic background of the host, immune responses to infection, virus strain, viral load, and the timing of infection.
To the best of our knowledge, this is the first definitive case of ACPA-positive rheumatoid arthritis developing after SARS-CoV-2 infection (ie, with samples taken before and after arthritis onset), with infection as a potential trigger for epitope spreading and onset of clinical rheumatoid arthritis symptoms.
 
Oh dear. Video on BBC news website this morning

Long Covid: How knowledge of ME could help sufferers - BBC News

Woman looking fabulous recommending that people 'be selfish'
I mean i know what she's trying to say & that perhaps the editing has created something other that she'd have liked. Also recognising that it takes guts to go public like that. But this is not how i want to see my devastating illness represented. Resting isnt selfish!
 
Merged thread

Long Covid: How knowledge of ME could help sufferers - BBC News

Very annoying 'music' as so often with BBC videos, and featuring a young woman with lipstick and nail varnish.

Summary:

Long Covid: How knowledge of ME could help sufferers

While both ME and long Covid, or post-Covid syndrome, are long-term illnesses, they aren’t the same thing. But, there are ways in which our knowledge of ME has helped experts treat long Covid. It’s also helped those with the illness understand what they’re going through. Evan was diagnosed with ME in 2017, and she believes her experience can help her support those living with long Covid.
 
Last edited by a moderator:
Long Covid: How knowledge of ME could help sufferers - BBC News

Very annoying 'music' as so often with BBC videos, and featuring a young woman with lipstick and nail varnish.

Summary:

Long Covid: How knowledge of ME could help sufferers

While both ME and long Covid, or post-Covid syndrome, are long-term illnesses, they aren’t the same thing. But, there are ways in which our knowledge of ME has helped experts treat long Covid. It’s also helped those with the illness understand what they’re going through. Evan was diagnosed with ME in 2017, and she believes her experience can help her support those living with long Covid.
My main issue with it, apart from the issues you raised, was her repeated use of the advice to 'be selfish' as if self care were selfishness, reinforcing the meme that PwME are selfish & self absorbed. Its really not how i want to see my devastating illness represented. The BBC's focus on fatigue alone in the explainer was also aggravating. FGS no wonder people with long covid dont believe it's like ME!

I mean kudos to the lady who did it, it's never easy & the editing may have been unfortunate/against her wishes. But agggh! :banghead:
 
Last edited by a moderator:
While both ME and long Covid, or post-Covid syndrome, are long-term illnesses, they aren’t the same thing.

Ugh, I just hate when people do this with ZERO evidence like it’s settled science. Most evidence right now looks like long COVID is going to be ME/CFS for most of those that don’t recover. Most scientists right now would say the symptoms are alarmingly similar and they don’t know yet.
 
Last edited:
I didn't think this was a great video. Could have been so much better. Not sure the battery charging to 85% is a good analogy. Try 50% max. Cardinal symptom given as 'extreme tiredness'... etc. And yes, it looks like a sub-set of long-covid patients have post-viral illness and will progress to ME/CFS.
 
Last edited:
Oh dear. Video on BBC news website this morning

Long Covid: How knowledge of ME could help sufferers - BBC News

Woman looking fabulous recommending that people 'be selfish'
I mean i know what she's trying to say & that perhaps the editing has created something other that she'd have liked. Also recognising that it takes guts to go public like that. But this is not how i want to see my devastating illness represented. Resting isnt selfish!

And this bullshit:
While both ME and long Covid, or post-Covid syndrome, are long-term illnesses, they aren’t the same thing.

Can BBC spend a little more time doing some f—-ing research please? Most evidence right now looks like long COVID is going to be ME/CFS for most of those that don’t recover. Most scientists right now would say the symptoms are alarmingly similar and they don’t know yet.
 
SomersetLive Bath woman describes 'harrowing' impact of living with long Covid

Jenny, who has lived with chronic fatigue syndrome for 14 years after catching glandular fever aged 21, initially thought the symptoms of long Covid were linked to her condition, but she soon changed her mind.

“I knew it wasn’t the chronic fatigue syndrome, because I had terrible chest pressure and pain in my heart and my lungs, and headaches," she said.

Jenny's also on twitter

 
Status
Not open for further replies.
Back
Top Bottom