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

I copied this from Healthrising :

 

one year just isn't long enough their are many who take 18mnths or more to recover from viral infections . hence the mythical recovery stories various people like to promote pvs is not the same as m e .

 

I got an email update about a date change for one of the Solve M.E. webinars. The webinar scheduled for Wednesday, Dec. 9, has been moved to Thursday, Dec. 10, at the same time.

Cut/paste from the email:
================

**CHANGE OF DATE!**
Thursday, December 10, 2020 Webinar

COVID Long Haulers and the ME/CFS Community:
Joining Forces for Progress

Presented by Global Pandemic Coalition CEO Hunter Howard,
Covid-19 Long Hauler Advocacy Project Founder Karyn Bishof,
Solve M.E. President & CEO Oved Amitay, and
Solve M.E. Advocacy & Community Relations Director Emily Taylor





Webinar description:

The term “long haulers” refers to the growing number of people who contracted COVID-19 and continue to suffer from symptoms past the anticipated recovery time — even though tests might reveal no virus left in the body. COVID-19 “long haulers” continue to struggle with debilitating symptoms, often alone, in the shadows of this devastating disease. Having escaped the worst, they nevertheless struggle with symptoms that in many cases are indistinguishable from ME/CFS.

After contracting COVID-19 early in the pandemic, Hormone Therapeutics CEO Hunter Howard endured a long, painful recovery process. Shocked by the lack of solutions to the epidemic, he launched the Global Pandemic Coalition to drive much needed services and connected with other survivors to start the search for answers.

The Coalition now spans six continents and pursues COVID-related solutions with the hope of introducing them to the general public and governmental agencies. The Coalition aims to collaborate with government agencies and hospitals to make health recommendations for the reopening of public spaces, and is investigating efficient contact tracing for widespread use to help slow the spread of the virus.

Karyn Bishof is a firefighter and paramedic who has been dealing with the lingering effects of COVID-19, many of which are reminiscent of ME/CFS, for eight months. Ms. Bishof founded the COVID-19 Long Hauler Advocacy Project, which is focused on advocacy for survivors, long haulers and their care.

The group focuses on advocating for long haulers by pushing for comprehensive post-COVID care centers which includes communications with lawmakers and hospital systems. The group also provides resources and tips for how patients can organize and advocate for themselves with their own physicians and participates in community outreach via media appearances, articles, blogs and a PSA. The group values the support of other chronic illness communities and works with them to collaborate on common goals.

In this webinar, Solve M.E. President & CEO Oved Amitay and Advocacy & Community Relations Director Emily Taylor will talk to Howard and Bishof about their experiences with long-COVID and how their respective backgrounds in IT, health care, and emergency medical services have informed their approaches to gaining community-based knowledge. We’ll explore how COVID-19 long haulers and the ME/CFS community can join forces for progress in the study, understanding and management of both COVID-19 and ME/CFS.

When:
**New date**
Thursday, December 10 at 10 am PT/1 pm ET
Register here.

 

Insurers must prepare for 'Long Covid'

https://www.covermagazine.co.uk/news/4024359/insurers-prepare-‘long-covid’

 

It's possible that some will experience permanent loss of stamina, like those who contracted EBV but never developed ME. They're still functional, but can no longer exercise like they once did before the infection.

 

https://twitter.com/user/status/1334139688483958784

 

https://twitter.com/user/status/1334168752372510720

 

From: Dr. Marc-Alexander Fluks

 

It's still amazing that after months of a group of people having sounded the alarm, even prepared research and advocacy, long before medicine had generally started noticing anything, that absolutely no attention is being paid to those people who predicted something that still confuses the hell out of everyone, with no clue where to begin work. Zero interest. They are allowed to do their thing but otherwise no one pays attention.

I get that everyone hates Cassandras but you'd really expect that medicine, of all things, would find people who predict a massive problem and try to benefit from that knowledge. Predicting the future accurately is kind of a big deal, people rarely do that by pure chance, especially on scientific matters. I mean if people call out a disaster long before anyone else notices, surely they must have other useful bits of knowledge to contribute.

And yet, nope. People prefer to cling to the "mystery", the thing that "no one could have predicted", even though "we've always known about post-viral fatigue". Many people literally mapped the way forward, literally did predict it, and no one is interested.

And mostly because this is an explanation that no one wants to be true, it's completely irrational to the point of being self-defeating. Months are being wasted while people still refuse to ask the people who freaking predicted the whole thing and get them to lead on. Because surely it must be something different and new than "those" damn freaking "patients" who have said the very same things and yet, somehow, people claim loudly that they've never heard of this before. Not ever. Many have severe dysautonomia. Which obviously must exist, too. Prior to now. But it absolutely, somehow, MUST be all brand-new, or something.

Amazing. Amazingly bad, that is.

 

Supporting recovery from COVID-19, British journal of Nursing

https://www.magonlinelibrary.com/doi/abs/10.12968/bjon.2020.29.21.1272

Way too much emphasis on PTSD, still that damn anchoring that severe cases must be a significant factor, but mostly OK.

Has a few dubious bits but the important parts are at least somewhat in the direction of actual reality, which is nice:

Post-viral fatigue (PVF) can range from tiredness to extreme exhaustion (Ahlberg et al, 2003) and is relatively common after many viral illnesses. Most people will gradually return to normal functioning within a few weeks (WHO, 2020). Persistent fatigue, which continues for about 4 months and interferes with the person’s capacity to carry out their day-to-day activities may lead to a diagnosis of post-viral fatigue syndrome (PVFS), also known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) (National Institute for Health and Care Excellence, 2007). Patients experiencing this prolonged fatigue should be referred to their GP for further investigation and specialist management. The ME Association website also offers useful information (Box 1). It is important for nurses, and all healthcare providers, to remember that PVFS and other medically unexplained syndromes (MUS) are poorly understood and that distrust can develop between patients and health professionals if symptoms are dismissed as ‘all in the mind’ (Dirkzwager and Verhaak, 2007).

The experience of fatigue in most people can be minimised by ensuring that the return to normal activities, including work, is gradual (Kos et al, 2015). Nurses should encourage patients to ‘pace themselves’ by using behavioural strategies, such as prioritising, goal setting and action planning (ie setting small achievable goals and a manageable strategy as to how these can be achieved), gradually increasing exercise, taking scheduled breaks and practising good sleep hygiene. For some patients who work, a phased return or temporary change of role to minimise the need to undertake particularly strenuous activities may be required. Nurses can support patients to approach their employers, many of whom will have sickness/absence policies which cover this.

Whatever their situation, patients should be advised not to ‘push through fatigue’ but to ‘listen to their body’ and to stop before they become tired (Kos et al, 2015). Patients should be encouraged to manage expectations and ‘sit with’ rather than ‘act on’ self-critical thoughts, which might encourage over-exertion such as ‘I should be able to do more’ or ‘I am useless if I can’t achieve what I could before’. Paying attention to thoughts and emotions and how they can influence behaviour is key to managing mental health (Hayes and Hofmann, 2017) including during recovery from COVID-19.​

I see no need to turn this into a "behavioral strategy", just standard useless BPS fluff, but whatever the advice is mostly not so bad.

 

https://twitter.com/user/status/1334365172505464835

No one mentions of ME, CFS or even post viral illness that I recall.

 

https://www.cbssports.com/nba/news/...-diagnosis-theres-no-timetable-on-his-return/

Mo Bamba still dealing with COVID-19 symptoms despite June diagnosis: 'there's no timetable on his return'

 

Opinion piece in the journal of the Swedish Medical Association. 70 physicians from the support group for physicians with covid-19 are demanding better medical care for people suffering from long covid, and share some of their personal experiences/symptoms.

Sverige behöver en tydlig strategi för hantering av långtidscovid
https://lakartidningen.se/opinion/d...dlig-strategi-for-hantering-av-langtidscovid/

 

Rehabilitation involving exercise appears inadvisable. Treatment also seems dodgy - no one knows how to treat it yet.

 

https://www.youtube.com/watch?v=u7FosBHE_mE

It's a start, I guess. Still oblivious to neurological symptoms and much more but... baby steps.

 

Letter to: Long covid: doctors must assess and investigate patients properly

https://www.bmj.com/content/371/bmj...8LGjXFxWozyzZ3c8QpV3FQrXLUnmjL6s3G2cTAa8pmk_s

Who's gonna tell them that, actually, this usually gets the most cursory investigation in normal times, at best? Usually after a whole lot of "doctor shopping" and being assured, without a doubt, that it's "anxiety".

There's a really big trend in medical professionals who experience standard clinical care for chronic health problems and are outraged that it is completely inadequate. Which, yeah, "those patients" have been saying so for... ever, really. And anyway, standard investigations usually show nothing. So now what? Maybe let's pay attention to all of this? No? Not the time? Because only this affects you and only this should be treated with priority?

Turns out medicine ignoring illness is kind of bad. Who knew?!

Mod note: An excellent response here: BMJ Rapid Response: Dr Nina Muirhead

 

Long COVID in the Faroe Islands - a longitudinal study among non-hospitalized patients

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa1792/6012625

One trend I've noticed is that initially the word was 2 weeks. Then in the early days of Long Covid it was up to 3 months, then 3-6 months. Now I've seen recently people being told by physicians that it may take 12-18 months. This is a terrible way to go about things, just kicking the can down the calendar, leaving people to fend for themselves in the hope that it will just magically go away. Reckless and irresponsible.


Some highlights:

https://twitter.com/user/status/1334468633301450753