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

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Long Covid: Early findings bring hope for diagnostic tests
https://www.bbc.co.uk/news/health-57776010

Also, Panorama tonight may be worth watching: Panorama's Long Covid: Will I Ever Get Better? BBC One at 19:35 BST on Monday 12 July and on BBC iPlayer.

 

Wouldn't it be amazing if this simple home blood test get's made and circulated by GPs?
Just WOW.

Then hopefully that might mean that all ME/CFS patients could get sent to their homes a blood test checking for auto antibodies, so wherever on the spectrum, a pwME is, the data could be collected.
Awesome.

I know,...... I will settle soon back to our reality.
However I can't help believing and hoping that this would put an end to not being believed by HCPs and can only help pwME.

 

This article might be related to the show:

Long Covid: Will I ever get better?

Be warned: there's plenty of mentions of yoga, acupuncture and mindfulness.

ETA: and Paul Garner.

 

So according to Betteridge's law of headlines, the answer is No!

 

Lifemark Canada post-covid rehabilitation and recovery program acknowledges that exercise is not a 'medicine' for ME/CFS or post-viral syndrome , but still believe exercise can be safe and appropriate for post-viral syndrome states.

"While exercise can often help, we recognize it is not a medicine for all (especially those with ME/CFS, Post-Viral Fatigue Syndrome, and more) and it would only be included if deemed safe and appropriate".

 

And plenty of Carson.

"Several people got in touch to tell me I would never get better. That I needed to accept my position was permanent."

It could be that there are people stupid enough to do this, but also, I have seen some ME/CFS patients' comments being misinterpreted in this way when they were only warning of the possibility of not recovering or saying that they had not recovered. Either way, I think it's a sign that it's worth being clear that this is not a reasonable message to send to Long Haulers (at least until we know far, far more about who is/is not likely to fully recover).

There are people around ME/CFS (patients, doctors and researchers) who make unsupported claims on social media. One reason why I thought it was worth trying to avoid quickly linking Long Covid and ME/CFS is that this risked unleashing these people on another group of patients. We've all seen overly confident patients talking rubbish on social media, and I expect we just ignore it. To those completely unfamiliar to this they could cause real problems, which in turn can make things worse for all of us.

 

Just out of curiosity I searched twitter for messages with 'recover' in them sent to her account - there were a lot sent replying to this tweet, some from ME/CFS patients, but all were just wishing her well with recovery. I'm sure people send her messages in other ways though.
https://twitter.com/user/status/1324870991663730688

 

Lol, so you disproved your theory then?

There will always be people who put out extreme versions of any messaging, not communicating the 'right' message due to the fear of 'encouraging' the extremists will only leave the extremists as the ones communicating. And by highlighting early the possibility of PEM in a post-Covid condition those who did so will have saved a number of people with Long Covid from making themselves worse.

 

"It's not overstating the fact to state that PACING is the singular most important management strategy for Long Covid, as well as other chronic fatigue related conditions. But what exactly is it, and how should we be doing it?

In this, episode 8 of our expert interviews series, Dr Asad Khan and I talk to an expert panel about the hows, whys and whens of pacing and how all of us could learn to do it better, avoid relapses and give ourselves the best possible chance of recovery.

The panel includes: Prof. Todd Davenport, University of the Pacific, Dept of Physical Therapy Sue Pemberton, Specialist Occupational Therapist - Yorkshire Fatigue Clinic Darren Brown, Clinical Academic Physiotherapist - NHS Ruth Ainley, Clinical Specialist Respiratory Therapist"

Code:

https://youtu.be/gUPvNwvkOlA

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

 

https://twitter.com/user/status/1414971350071001097


Edit: it's on, live thread:

https://twitter.com/user/status/1415318204902170629

 

Hotez has been a solid voice of reason on US media, going out of his way trying to reach doubters. It's pretty wild that while there is discussion over the potential harm of vaccinating the youth, it seems mostly because the vaccines are "new", there has been essentially no discussion over the potential harm to children from the virus, it's largely accepted that it's OK for nearly all children to get infected.

Realization slowly sinking it. Here he advises to take it seriously but his quoted tweet contains links to several studies showing growing evidence that a significant % of children get Long Covid too. It's adding up to evidence that is hard to dismiss, and yet here we are, this evidence being largely absent from decision-making, and still largely ignored by medicine. Almost like it's not evidence that counts, so much as what is accepted as evidence, a conscious process of interpretation that is very prone to bias and incompleteness.

https://twitter.com/user/status/1415409008928776192

 

A Tsunami of Disability Is Coming as a Result of ‘Long COVID’

"Even as U.S. policy makers and business leaders seek to put the COVID pandemic in the rearview mirror with the help of highly effective vaccines, a fundamental policy and planning gap is looming. Many who survive the initial viral illness suffer debilitating long-term sequelae. Unlike the common cold or even influenza, this virus causes a bewildering array of symptoms that persist long after the acute illness is resolved and can render some affected unable to resume their usual activities. As scientists and clinicians continue to delineate the “long-haul” course of COVID, policy makers and planners must anticipate and prepare for the impact of this new cause of disability, including its implications for federal and private worker’s compensation and disability insurance programs and support services.

Consider the numbers we know. At least 34 million Americans (and probably many more) have already contracted COVID. An increasing number of studies find that greater than one fourth of patients have developed some form of long COVID. (In one study from China, three quarters of patients had at least one ongoing symptom six months after hospital discharge, and in another report more than half of infected health care workers had symptoms seven to eight months later.) Initial indications suggest that the likelihood of developing persistent symptoms may not be related to the severity of the initial illness; it is even conceivable that infections that were initially asymptomatic could later cause persistent problems."

https://www.scientificamerican.com/...coming-as-a-result-of-lsquo-long-covid-rsquo/

 

This article features on the front page/top slot of the Financial Times website today:

https://www.ft.com/content/ff63cd68-7281-4340-b1b6-5db3d891eaff

"Long Covid defies understanding as sufferers despair:
Doctors fear ‘tens of thousands’ of people could be afflicted by multiple symptoms"

This is the first time I've seen a major newspaper lead with a Long Covid story. The language is quite strong in places, e.g.: "Some fear that the syndrome could be this generation’s polio — recalling the infectious disease that held the world in its thrall for decades and caused survivors life-long problems."

I think a useful next step would be an FT Editorial Board article demanding action on specific policy measures as well as whole-of-government attitude change. This could, for example, outline in clear language the most urgent steps required to (i) accurately measure the current and projected number of Long Covid patients across all age groups (as a ratio of acute cases, and in absolute terms); (ii) accelerate biomedical research into Long Covid cause(s) and treatments by mobilising an unprecedented (multi-billion pound) amount of emergency funding, and by taking the same 'placing multiple bets' strategy that proved effective in the UK's vaccine procurement strategy; (iii) place efforts to tackle Long Covid squarely in the context of several decades of pre-existing research into ME/CFS and post-viral syndromes broadly, rather than treating it as something novel and new; (iv) put this subject front and centre of UK government policy and public messaging; (v) enhance awareness of the long-term, potentially indefinite, nature of these very debilitating symptoms in at least a subset of Long Covid sufferers - to correct the widely held assumption that Long Covid implies just a few months of lingering after-effects; and finally (vi) acknowledge that we currently have no tools to treat Long Covid, and that the priority must therefore be on biomedical research.

Does anyone know of an already-published press article, charity press release, blog or journal article that covers some or all of these points in concise language that will resonate with a policy-maker audience?

(Apologies if some/all of the above is repetitive of previous comments - I've found this a really helpful thread but haven't been able to read back through all posts).

 

https://twitter.com/user/status/1415833130771140608


Thread….

 

Are there psychologists/ psychiatrists with LongCovid asking awkward questions about CBT/GET?

 

The broader context and background of why CBT/GET is even a thing hasn't really made its way yet, it's more of a background noise to there being nothing at all. It's seen as one more part of the nothing, basically one component of the overall gaslighting and dismissal.

I do see the odd report, more lately, of long haulers saying they have been made severely worse from GET, but people being coerced into it seems rare, so it's not a big issue.

 

If I read this correctly, this is about one of the NIH-funded study as part of the $1.15B LC fund.

Meet the informaticist trying to solve the mystery of long COVID
https://www.healthcareitnews.com/news/meet-informaticist-trying-solve-mystery-long-covid

Still a bit understated but definitely closer to reality:

For whatever reason, the virus leaves many of us with trouble breathing, heart problems or neuropsychiatric problems. By far one of the worst ones is this chronic fatigue syndrome – myalgic encephalomyelitis. You get this brain fog where it's hard to concentrate. And of course with that comes depression. It's been a really difficult thing. And these symptoms can appear a long time – over 30 days – after COVID. So that's what we're trying to figure out.

The place to start is with the patients. The data is coming from 20 adult sites, 10 pediatric sites and seven autopsy sites: Some people don't survive the syndrome or they die from something else.​

 

In an interesting coincidence, my niece works as an office manager for this researcher. She has told him lots about my disease experience - maybe more than he wanted to know! - and she has told me that he is very excited about the possibility of helping those of us with ME/CFS as well as long haulers. Hopeful!