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

Status
Not open for further replies.
anniekim said:
All anecdotal of course but I’m noticing a fair few people on Twitter who have been sharing their experience of suffering long Covid for the last year on there now sharing they have a year on or longer from onset reached remission or back to 90-95% functioning and able to do aerobic exercise again. Happy for them but could indicate recovery rates may turn out to be better in LC than ME?
Click to expand...

I got the same impression, might be more similar to post Mono. I know a couple of people that took a year to recover from that without developing ME.

That's why we need good studies on LC so desperately.

If LC will be mostly self limiting drawing a premature connection to ME might harm us more than doing good.
 
All of the illnesses that can cause ME/CFS - EBV infection, Q-fever... have a long tail of people who have ME/CFS-like symptoms for months after the illness. Most get better, but most who reach the two year mark don't. At some point in that time, people who don't recover will probably get a label of CFS or ME/CFS.

There's an arbitrary drawing of the line as to when ME/CFS starts, and post-viral fatigue syndrome or post-infection fatigue syndrome stops. If we don't fold those with Long Covid who experience PEM into 'people with ME/CFS', then it's likely that they won't get the right sort of advice, and an opportunity to have society understand ME/CFS better will be lost.

In my family, three of us became ill with ME/CFS at the same time. One of us got better over two years; two of us remain ill after 8 years. To me, 'post-viral fatigue illness with PEM' or 'Long Covid with PEM' at 3 months are the same as ME/CFS except they haven't reached the requirement for 6 months duration. There's just an arbitrary drawing of the line in terms of time.
 
I have not watched yet, but Solve ME have done a webinar on long CoVid, a 3 part series apparently. Below is part 2.

ETA - apparently it will cover comparisons to ME.

 
Last edited:
"We need to get the word out there' - Irish long Covid patients share their stories"
https://www.breakingnews.ie/ireland...vid-patients-share-their-stories-1187408.html

Includes:
"She now suffers with post exertion malaise, a condition often associated with chronic fatigue syndrome, which brings on delayed symptoms after different activities."
Click to expand...
As with many Long Covid stories, these will resonate with many people with ME/CFS

Click to expand...



“One day I went to lift the mug [of tea] and I physically couldn’t lift it, she [friend] decanted it into an alternative. The next day I came down, and she had gone to Mr Price & bought a smaller mug, that doesn’t sound like a big deal, but that made my day”
Click to expand...
 
Last edited:
Digital Journal Long COVID and the connection with chronic fatigue syndrome by dr. Tim Sandle

Quote:
Based on evidence from past viral outbreaks, researchers expect that at least 10-12 percent of COVID-19 patients will go on to develop ME/CFS following COVID-19. This tallies with the fact that eighty percent of cases follow an infection. Studies show that viral outbreaks often lead to post-viral illnesses, like ME. In fact, the virus causing COVID-19, is not the first coronavirus to result in documented ME/CFS.
 
The Conversation Social media, activism, trucker caps: the fascinating story behind long COVID by professor Deborah Lupton

quote:

The outstandingly successful example of long COVID is the latest of a history of patient-led support, information sharing, activism, fund raising and involvement in research.

People with new or rare diseases or those whose conditions are contested have often had to fight hard to have their illness acknowledged and appropriately treated.

When HIV/AIDS first emerged in the early 1980s, patient activist groups had major successes in combatting stigma and fighting for support, health care, medical research and drug development.

The most well-known activist organisation was ACT UP, based in the US and led by the LGBTQI community. ACT UP members relied on street marches, protests and rallies to spearhead political action.

Chronic fatigue syndrome (CFS) is another example. People with this syndrome have had to challenge doctors’ assumptions their symptoms are “all in their mind” because the causes and markers of their illness are still open to speculation.

The medical profession has sometimes criticised advocates for being overly “militant” in their efforts to be heard and receive effective treatment.

Yet patient-led research and activism have made great strides in achieving their goals in achieving recognition for HIV, CFS and many other conditions.
 
Today's Times2 (print edition page 4) and online version:

https://www.thetimes.co.uk/article/...s-well-they-might-be-something-else-9lnf5tpw0

Got long Covid symptoms? Well, they might be something else

Dr Mark Porter

Monday September 27 2021, 5.00pm, The Times

Nearly a million people across the UK have long Covid-type symptoms, according to the latest survey by the Office for National Statistics (ONS). And for 40 per cent of them their symptoms — typically fatigue, shortness of breath, muscle aches and difficulty concentrating — have persisted for at least a year.

However, the ONS survey depends on self-reporting rather than confirmatory tests and Professor Sir John Bell, a leading researcher from Oxford University, believes the scale of long Covid has been “overblown”. And there is growing concern among other doctors that being too quick to attribute these complaints to a post-Covid syndrome may mask myriad other, often far more treatable conditions that produce similar symptoms...


porter280921.jpg
 
Last edited:
Verywell Health: What Long COVID Awareness Means for People with Chronic Illnesses

"Key Takeaways


    • People in the chronic illness community are noticing similarities between long COVID and conditions such as myalgic encephalomyelitis (ME) and fibromyalgia.
    • But people with chronic illnesses often have had to struggle for years to be taken seriously and receive a diagnosis.
    • Many hope that long COVID awareness will lead to more acceptance and better research for more conditions
(...)

“Doctors can’t be expected to know everything,” Muirhead says. But at the same time, once they’ve done all the tests and ruled out what they think a patient’s options might be, healthcare providers shouldn’t “turn around and tell the patient they’re making up [their condition],” she adds.


As a doctor who has a chronic illness herself, Muirhead acknowledges she is in a unique position.


“It was only by being on the patient side that I realized the medical profession have massively underestimated hidden disease,” she says. “I was completely ignorant to the knowledge gap between where I stood, and where [the patient] sat.”​


https://www.verywellhealth.com/long-covid-chronic-illness-research-5201370
 
Vision issues are often discussed but there's barely any research even acknowledging them. They seem to be as present in LC as other ME populations, roughly speaking. Usually little discussed since it's not especially disabling compared to other symptoms.

This is the first I've seen of a good visual representation of what some of it looks like. At least to me, and that guy. And I guess whoever did that image. There are probably dozens of us, even! Dozens!

 
Same old. Just the same old. Go back 2 decades and it's the same. Go back 4 decades and it's the same, only the medium changes. Also sometimes it's presidents of medical associations saying the same, or whatever. Or professors of economics. Anyone remember that Blanchflower dude from a few years back? Yeah he was at it this week, helping his buddy Sharpe (or was it White?).

To some, this is success. To medicine as a whole, this is success. I mean literally this is success as far as most are concerned, many are badly motivated at keeping things this way and even want to expand massively and never look back.

 
The Ed Yong video above is amazing. Worth watching and sharing.

Also missed this from 2 days ago, on CNN. Article and video. CNN has a bad habit of having mindlessly inept commentators for the infotainment value but Gupta as a medical reporter is genuinely solid, seems like a good physician.


Long Covid is a bigger problem than we thought
https://www.cnn.com/2021/09/29/world/coronavirus-newsletter-intl-29-09-21/index.html


Features a physician with mild LC symptoms who mentions Lyme as another example of post-infectious illness. At the 18+ month mark that even acknowledging the mass of prior evidence, not just ME and dysautonomia but literally a dozen or so post-pathogen syndromes, is still too difficult just an incredible level of inability to unhook from a belief system and look at reality as it is.

Or to put it in meme form:

ourexpectations.jpg
 
Time Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes

Quote:

“Deaths and severe disease and hospitalization are…understandably what we are focused on. But Long COVID is an absolutely debilitating disease,” Iwasaki agrees. “It’s really been ignored to a large extent, and I really don’t understand why.” She says better tracking of breakthrough infections, as well as follow-up surveys that track patients’ symptoms over time (like those used in the recent Lancet study), could help increase understanding of Long COVID and the risk it poses to U.S. public health.

Without that understanding, people who develop chronic issues after a breakthrough infection, like Zaleski and Kern, may be overlooked and left out of crucial efforts to develop treatments. The National Institutes of Health has earmarked more than a billion dollars for Long COVID research—but for it to be most effective, it needs to include a diverse, representative group of people.

Nichols also says health officials should look to the past, drawing on the lived experience of people who developed other post-infectious chronic illnesses, like myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme disease, to understand how to support Long COVID patients. Better access to specialized treatment centers; funding for patient-led advocacy and research groups; and collaboration with the entire chronic-disease community would all be good places to start, she says.
 
Long haulers unite! One thing the delays to the NICE guidelines process have done is that there are far more long haulers who understand we're all in this together. Of all the things the BPS ideologues and the colleges have factored in, this is not one and it may surprise them a bit, or a lot.

After a while, people stop expecting help from coming and, yes, justifiably, become more militant. And that's a good thing, because a small group of people challenging a broken status quo is how every single thing has changed. And it's been a long while by now.

 
Status
Not open for further replies.
Back
Top Bottom