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

“I’ve been doing major research and finding some great stuff to support what I’m doing.”

 

Ah, a researcher! Pardon for my ignorance

 

Referring to post #3868 ...

This is the first reference I can remember seeing to an Institute which has Tony Blair's name tacked on. Since he is/was a politician and has no medical training his name being involved actually puts me off reading what has been published. I realise this probably makes me sound like I'm prejudiced against politicians - and to be honest, yes I am.

 

I've never heard about this institute before either. Noticed a tweet about this paper on twitter that was retweeted by Long COVID Physio and thought it was interesting to see among other a call for a Long Covid minister. Seems they've at least involved some patients during the process.

 

Thanks for posting! I was going to post a similar comment.

For example, here's a review from 2018 of products sold on the goop website:

 

One of Ireland’s earliest Covid cases still suffering symptoms one year on
https://www.breakingnews.ie/ireland...l-suffering-symptoms-one-year-on-1094854.html

 

https://twitter.com/user/status/1370338102066155524


(Also mostly time and rest but whatever)

 

Not sure what this lady thinks science and good medicine consists of in this case. Or why CBT and GET should've anything to do with private care.

I think Tony Blair needs to employ a few people from S4ME.

 

Maybe Blair wants to be "explainer in chief" - rather than owning up i.e. we don't have the solutions at this point.

 

In my personal experience with ME, I find that the acceptance that ME is a real, debilitating, and physiological disorder from my family, work colleagues, doctors, researchers, etc, and legitimization of suffering is an important but all too little step.

It helped me a lot during the first few years. But in the end, none of it mattered all that much because I was still stuck with an ever worsening disorder sending me into more severe disability. I thought to myself it’s all well and good that everyone believes me, but that not enough anymore I’m past that and need real help.

I have a feeling LC people are going to go through the same phase. So it’s a good reason for hope that support is building and people are together with this, but if you only get that for years to come hope will be dashed after a while.

 

Many interesting responses to this thread. Many long haulers are hitting year 1 this month.

https://twitter.com/user/status/1370814652867825674

 

About long covid in children. Paywalled article in a Swedish newspaper.

Läkarna om misstänkt postcovid hos barn: ”Katastrof om vi inte kan hjälpa dem”
https://www.dn.se/sverige/lakarna-o...hos-barn-katastrof-om-vi-inte-kan-hjalpa-dem/

 

If the thing that already exists is a possibility it could be a disaster... that we will neglect and not care for because it's already standard practice? Ok.

The same people saying that very likely already dismiss chronically ill patients experiencing the same as not a real problem, the "if" answered. Medicine is weird. Problems can be serious or not depending entirely on arbitrary circumstances.

 

Time - A Year Into the Pandemic, Long COVID Is Still Burdening Patients - and Their Caregivers

quote:
- One of the leading theories in the field is that some patients have an abnormal immune or inflammatory response, such that the immune system revs into overdrive, attacking the body in the process. Another hypothesis is that Long COVID is not a unique disease, but rather that a COVID-19 infection is a new trigger for myalgic encephalomyelitis/chronic fatigue syndrome, a post-viral syndrome that comes with similarly long-lasting and debilitating—and baffling—symptoms. The National Institutes of Health in February announced that—with the help of more than $1 billion in Congressional funding—it would coordinate new research into Long COVID. The agency hopes to determine who is at risk and why and, ideally, develop new treatments.

 

PHSA Canada
Mental Health in “Long-COVID” – A Resource for GPs
http://www.phsa.ca/health-info-site/Documents/post_covid-19_Mental_Health_in_Long-COVID_for_GPs.pdf

 

The ABC in Australia had a report on Long Covid tonight. Given that the pandemic here was not as bad as other countries, they say Australia 'only' has around 1000 LC cases.

Disappointingly the program did not mention ME/CFS. And, of course, the journalist and doctors interviewed implied that this phenomenon had never been seen before.

https://iview.abc.net.au/video/NC2101H042S00
The story starts at 4:25

(I'm not sure if people outside of Australia will be able to view the video.)


Edit: see the link in @Colin's post below for a better link to the segment.

 

I'm in the UK and it is currently viewable - very slow to start, well over a minute of black screen with no timer running, but it does start.

I will not be watching it until later tho

 

Yes, the LC-insularity policy seems to be in full swing.

It's also here as a separate report: ABC: 7.30: Up to a third of people take longer to recover from COVID (6:56m)

 

I’m happy if they at least think it
https://twitter.com/user/status/1371833318921093143

 

Oh wow that is absolute garbage. Actually it's the leaky stuff that comes out of garbage. This is what excessive bias looks like and it's completely unprofessional.