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

Status
Not open for further replies.
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/1880957905385659
Thanks to Sean Moncrieff on Newstalk FM for interviewing me today about Myalgic Encephalomyelitis, sometimes also called Chronic Fatigue Syndrome

Among other things, it was mentioned some cases of Long Covid appear to be like ME/CFS

A link to a recording of this segment can be seen here https://www.newstalk.com/podcasts/highlights-from-moncrieff/chronic-fatigue

A lot of good comments were read out later in the show, including just after the break. In total, they probably took up as long as my interview itself. One can hear them by going to February 4 at https://www.newstalk.com/listen-back

Comment: In my discussions with the producer, I used ME and I'm not sure I use CFS at all. But Sean said at one stage later in the show that he wasn't even try to pronounce Myalgic Encephalomyelitis, so that might have been why they have focused on "Chronic Fatigue Syndrome" when plugging the interview. I have asked them to change the website heading to either "Myalgic Encephalomyelitis" or "Chronic Fatigue Syndrome"
Click to expand...
 
a lot of the time academic
rehabilitation research has focused on a
model that's very biomedical
and we know that obviously
rehabilitation is not biomedical it's biopsychosocial although
that term also has challenges

I can see that these people are trying hard to get things right - but I am not quite sure that they have quite got there!

Maybe we should start with: Why 'rehabilitation' at all?
Rehabilitation is for people whose illness is in the past.
 
Swiss study on Long Covid symptoms. The study is in... uh... another language but whatever only this abstract is in English.

https://www.corona-immunitas.ch/en/program/studies/e7-zurich-coronavirus-cohort-study/

Can't find the link to the paper itself.


Results:
We enrolled 437 SARS-CoV-2 infected individuals. Median age of participants was 48 years and 51% were female. Symptoms at diagnosis were reported by 90% of participants, of which 16%, 40%, 30% and 13% reported mild, moderate, severe and very severe symptoms, respectively. 20% of participants were hospitalized within two weeks of the infection. At 6 months, 26% reported not having returned to their normal health state; 31% among males and 21% among females. Furthermore, 23% among the non-hospitalized and 39% among the hospitalized reported not having fully recovered. Half of the participants reported at least one general practitioner visit post-infection. 54% of participants had fatigue in the FAS, and 26% and 32% had DASS-21 scores indicating depression and anxiety, respectively. One fourth had grade 1 dyspnea or higher based on mMRC scores.
​
Discussion:
Our results show that a relevant proportion of individuals suffer from longer-term consequences after SARS-CoV-2 infection. The proportion of individuals with Long COVID may be overestimated due to underdetection of mild cases during the first wave. But a relevant absolute number of affected individuals, ranging up to several hundred thousand persons in Switzerland is to be expected, who suffer from mild to severe symptoms months after the infection. Our findings indicate that a wide range of healthcare services and integrative approaches will be required to support the recovery of these individuals. Alongside measures to mitigate the spread of SARS-CoV-2, the early planning of resources and tailored services for those suffering from Long COVID will be crucial for reduce the burden from Long COVID.​

Nothing compelling but numbers mostly hold up, with the caveat that without a firm denominator it's very difficult to establish true prevalence. Almost like this requires a more systematic approach than the present "let's just hope it doesn't happen", while it has already been happening for nearly a year.
 
The cycle of failure in action:
  1. Hear and dismiss all symptoms
  2. Write down "tiredness" instead
  3. Trawl through medical records and find so many people who are "tired all the time" and nothing else
  4. Conclude that tiredness is the only outcome of Long Covid and nothing else
Also notable that the many meanings of the word fatigue, very often the same meaning as sleepiness/ordinary tiredness, is causing nothing but confusion because most people with LC or ME are not sleepy all the time and in fact commonly have insomnia. Words matter. Using them wrong is, well, wrong.



Ironically, this is why Pope is so hostile to LC having anything to do with ME, because it has been so massively distorted as fatigue and nothing else.

But the process of distorting LC is being noticed, not especially subtle:

 
Last edited:
Tomorrow said:
It is like watching the last 50 years of ME/CFS in time lapse.

As you always say: The same mistakes are made again.

In a perverse sense it is really fascinating how a profession, or a lot of its members, just doesn't want to learn anything.
Click to expand...
learning actually takes effort but ticking boxes in a production line approach to medicine seems to be the most financially rewarding .
 
I was wondering whether someone was at least bothering to research this. Hopefully it's high quality and not the only one as this is a critical question, despite being largely ignored.


Scientists want to know if vaccinated people can still become COVID-19 long-haulers

https://www.theverge.com/22266344/covid-vaccine-protection-chronic-long-haul


Duggal and Heinrich are hoping to find answers on the relationship between vaccination and long-haulers through their research on COVID-19 patients. Duggal is running a survey of 25,000 people who’ve had the disease, and it includes a question asking if they’ve been vaccinated or are participating in a vaccine trial.

Heinrich and his team are following people with persistent symptoms over time. “We’re looking for people who have been vaccinated and also become infected,” he says.

Duggal isn’t sure vaccines will reduce the risk for persistent symptoms entirely. “I think there is going to be a small percentage of people that could get infected even post-vaccination that could become long-haulers,” she says. ​


But this is not exactly encouraging:

To be clear, it’s not likely that vaccination, by converting severe cases of COVID-19 to mild cases, will create more long-haulers, says Jessica Dine, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine. “That’s not what we typically observe with other vaccines,” she says. “With the flu shot, you can still get the flu, even though you’ll get a milder case. But we don’t see an increase in stuff like post-viral inflammation.” ​

In that right now no one is actually tracking any of this. Would have been much better to say we don't know than to make a baseless affirmation about something that no one is actually doing. But that's a different person so hopefully the researchers are a tad bit more rigorous in their work and don't make such assumptions.
 
rvallee said:
I was wondering whether someone was at least bothering to research this. Hopefully it's high quality and not the only one as this is a critical question, despite being largely ignored.


Scientists want to know if vaccinated people can still become COVID-19 long-haulers

https://www.theverge.com/22266344/covid-vaccine-protection-chronic-long-haul

​
Click to expand...


I have been wondering about this a lot as well, especially as I have long covid which has now turned into a major relapse of my ME/CFS. I can no longer go out anyway and live alone. I am just scared about getting worse with long covid and MECFS. If you can still get long covid after being vaccinated, it changes the picture a lot. I hope good research is done.

The only reason I spend what little energy I have wiping down groceries/etc is that I am scared of getting more long covid again. The fact that the issue is generally being ignored makes me feel especially isolated, because of the way they discuss death as the only "severe" outcome. I have spent a lot of the last 10 months unable to leave my bed due to long covid/etc; would be pretty good to know what the position is!

(I am just expecting this to be circulating permanently at lower levels in any case). xx​
 
This NIH blog is really promising:
https://schorline.ninds.nih.gov/2021/02/05/long-term-covid-19/#more-1654

NINDS is leading and funding studies of this so-called PACS both at the National Institutes of Health and around the US and world:
  • NIH was recently appropriated 1.15 billion dollars to execute research that will lead to a better understanding of the heterogeneity in the recovery process after COVID and to develop treatments for those suffering from PACS.
  • Patient registries, some of which specifically enroll children or pregnant and lactating women, are being created and mined to search for and characterize neurologic dysfunction among individuals who have or have had COVID-19.
  • Biologic therapeutics, many of which modulate the body’s immune response to viruses, small molecule drugs, and implantable and external devices are being examined and tested for effectiveness in preventing or treating PACS.
  • Finally, studies are being done to identify the mechanisms responsible for this persistent illness and its relationship to prior COVID-19 infection. For example, Dr. Avindra Nath, NINDS’ clinical director, will be studying PACS patients using a protocol similar to that used in the comprehensive NINDS ME/CFS study.
Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS.

This post has been copied to the NIH thread
 
Last edited by a moderator:
New resources for large-scale ME/CFS research

https://www.ninds.nih.gov/News-Even...ages/New-resources-large-scale-MECFS-research

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and severe disease that, according to the CDC, affects up to 2.5 million Americans, many of whom have not been diagnosed. This debilitating disease causes pain, cognitive difficulties, severe fatigue that does not improve with rest, and an increase in symptoms following physical or mental exertion (called post-exertional malaise). The disease can have widespread effects throughout the body including in the immune, metabolic, cardiovascular, gastrointestinal, and nervous systems. Moreover, for the past several months similar symptoms have been reported in people who were infected with COVID-19. Although many people fully recover from the novel coronavirus, there is a subset of individuals who continue to experience severe and life-changing symptoms on a long-term basis, a condition that has been referred to as “Long COVID syndrome.” The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases.
Click to expand...

This post has been copied to the NIH thread


 
Last edited by a moderator:
Kalliope said:
The podcast is also available on YouTube. It was a great episode about listening to and cooperate with patients when researching, how important it is to make sure you're not harming trial participants, how much there is to build from the ME community, how it is crucial with more investment in research into ME. He also tells how he has adapted his planned trial on Long Covid and rehabilitation, based on everything he has learned from Long Covid patients and the ME community. He goes forward with among other #StopRestPace as principle and wants to continue raising awareness about ME.

Click to expand...


It's well worth a listen to the podcast with Simon Decary if you can manage it - he started off with a grant for a research programme for Long Covid including exercise. When he received feedback from people with ME on social media, he paused his research and has gone off and read up on everything including the PACE trial and has now shifted his emphasis into research for people with ME. I think he is still doing his Long Covid trial but looking at stop rest pace as the underpinning principle rather than exercise.

As physios for ME we have been in touch with him and hopefully will continue to work with him (watch this space for more info)

Compare and contrast with the REGAIN study.......
 
Status
Not open for further replies.
Back
Top Bottom