Long Covid in the media and social media 2022

Status
Not open for further replies.
If they are support groups for LC sufferers then membership is understandably confidential, as with Doctors with ME and S4ME.

Any research grants any of their members have will be public information by the granting body. I'm not sure why this is being described as secretive. What am I missing?
 
Last edited:
Has anybody got information about the RE
Trish said:
If they are support groups for LC sufferers then membership is understandably confidential, as with Doctors with ME and S4ME.

Any research grants any of their members have will be public information by the granting body. I'm not sue why this is being described as secretive. What am I missing?
Click to expand...
That's a good point actually some of these groups are peer support groups, I think the research / clinical learning networks should be more transparent
 
rvallee said:
It sure would be useful if they said something publicly instead of being closed off. The house of medicine needs to open its doors, the ivory tower model has run its course a long time ago.

Click to expand...


I had forgotten about the existence of this group. [Drs With Long Covid] Have they achieved anything? This tweet comes across like the LC issue being used as an opportunity for networking. Initially I was hopeful that such a group may draw attention to issues affecting LC and post-viral patients as they would have a lot of weight with the general public and the media. But this just seems like they have set up a closed group and lobby potentially in private only for the benefit of members of the group. I would be happy to be corrected. I hope they broaden their circle of perceived interest.

(I am sorry, I tried not to be snarky and did my best! It's been two years now since many of us got ill, including me, so I am a little disappointed and frustrated.)
 
Trish said:
If they are support groups for LC sufferers then membership is understandably confidential, as with Doctors with ME and S4ME.

Any research grants any of their members have will be public information by the granting body. I'm not sure why this is being described as secretive. What am I missing?
Click to expand...
Well, if they're happy with the way things are happening they can continue being a closed group no one's ever heard of other than the odd mention like that, having no visible impact on the widespread denial and mishandling of Long Covid.

But the way things are happening is definitely terrible, and the silence of physicians with LC plays into it. If it's because of the discrimination they don't want to face, all the more reason to speak out, this discrimination is immoral and will continue to hurt them. Non-physicians, as we know, have zero influence on health care, if they don't act nothing will change.

They could dramatically change the course of things. It would help them while helping millions. Doing nothing hurts everyone, they have a duty to speak out. Or that's the idea anyway, clearly duty is another meaningless word in medicine, it really refers to complying with rules. It's as if no one expects anything from anyone, no wonder everything's so broken.
 
rvallee said:
Well, if they're happy with the way things are happening they can continue being a closed group no one's ever heard of other than the odd mention like that, having no visible impact on the widespread denial and mishandling of Long Covid.

But the way things are happening is definitely terrible, and the silence of physicians with LC plays into it. If it's because of the discrimination they don't want to face, all the more reason to speak out, this discrimination is immoral and will continue to hurt them. Non-physicians, as we know, have zero influence on health care, if they don't act nothing will change.
Click to expand...

I completely agree with this. I have been quite stunned by the complete lack of what I would have previously thought was the bare minimum.

And "some have NIHR Grants on LC"? Okay. What grants? What is their theory of the case? What are they hoping to achieve? Who are they helping?
 
Press release published by the Swedish Covid Association today:

IVO riktar skarp kritik mot hantering av postcovidvård
https://www.mynewsdesk.com/se/svens...ritik-mot-hantering-av-postcovidvaard-3171208

Auto-translate said:
IVO sharply criticises handling of post-covid healthcare

The decision to close Sweden's first post-covid clinic should have been preceded by a patient safety analysis. The Health and Social Care Inspectorate (IVO) is now sharply criticising the Stockholm Region for not having complied with the applicable regulations.

- Now we have it in black and white that it was wrong of the Health Administration to close down a well-functioning operation without first analysing what it means for patient care, says Åsa Kristoferson Hedlund, chair of the Swedish Covid Association.

Sweden's first post-covid clinic was opened in the spring of 2020 at Karolinska University Hospital in Solna, and the learning about post-covid took off. But already in April 2021, the Stockholm region decided to replace the clinic with a new facility, located in Huddinge. However, the decision was not preceded by any medical risk analysis or planning to secure key competences, something that IVO is now criticising.

"The Stockholm region has failed to plan, manage and control its activities in connection with the change of the clinic for patients with post-acute covid-19 syndrome. This is because the change was not preceded by sufficient planning to ensure that the change could be carried out in a patient-safe manner," IVO writes in its decision.

The authority also points out that patients had to wait a long time for highly specialised post-covid care and that the queues for care worsened as a result of the decision. In addition, it says that patients were not informed about the changes in their care. [...]
Click to expand...
 
After producing vaccines and treatments for acute COVID-19 in record time, researchers and drugmakers are turning to finding a cure for long COVID, a more elusive target marked by hundreds of different symptoms afflicting millions of people.

Companies including GlaxoSmithKline (GSK.L), Vir Biotechnology (VIR.O) and Humanigen (HGEN.O) confirmed they had spoken to researchers on trials using their current treatments against long COVID. Others including Pfizer (PFE.N) and Roche (ROG.S) said they are interested but would not elaborate on plans.

https://www.reuters.com/business/he...-begin-hunt-long-covid-treatments-2022-03-25/
 
It's a running gag/gallows' humor in LC forums that the only relevant help and advice they ever got was from... the ME community and LC forums. Meanwhile the ideological bubble of medicine is still harping the same claptrap and selling it, even though it's less useful than the comments section of forums that experts never frequent.

 
Confusing sentence here—are there clinical trials of meds for chemo brain?

“Monje believes that knowing those similaritiesgives the field of research into long covid “a real foundation.” She’s optimistic that some of the symptoms people are experiencing post-covid are reversible, and there’s already talk about testing drugs in clinical trials to treat “chemo brain” for those suffering from severe covid brain fog.”


According to this site, there are no approved meds for chemo brain

https://www.mayoclinic.org/diseases-conditions/chemo-brain/diagnosis-treatment/drc-20351065

Actually weak pipeline for chemo brain

https://ichgcp.net/amp/clinical-trials-registry/research/list?cond=Chemo-brain
 
Last edited:
mango said:
Press release published by the Swedish Covid Association today:

IVO riktar skarp kritik mot hantering av postcovidvård
https://www.mynewsdesk.com/se/svens...ritik-mot-hantering-av-postcovidvaard-3171208
Click to expand...
Article in the journal of the Swedish Medical Association:

Ivo påtalar brister när Stockholms postcovidvård flyttades till Huddinge
https://lakartidningen.se/aktuellt/...kholms-postcovidvard-flyttades-till-huddinge/
Auto-translate said:
Ivo points out shortcomings when Stockholm's post-covid care was moved to Huddinge

[...] However, Heidi Stensmyren, theme manager at the hospital and responsible for the post-covid clinic in Huddinge, does not think that the hospital has done anything wrong and refers several times to Ivo's review as technicalities and formalities.
Click to expand...
 
One of my rules of thumb for judging an interview about LC or ME is how many times the phrase 'we don't know yet' is used. The more often someone says it the more credible I'm inclined to think they are. The two interviewees here scored pretty well.

33min audio, ME gets a short mention.
Warnings about Long Covid

As more New Zealanders recover from Covid, we're exploring what is known about the health effects of Long Covid.

As a nation our quick and stringent initial COVID-19 pandemic response has been praised, but two years on, focus is now turning to the long-term health effects and ongoing recovery.

A WHO policy brief has suggested around 25 percent of people who have had the virus, will continue to have symptoms for at least a month, and three months on, around one in 10 people are still feeling unwell.

So just how much is understood about this pandemic, the after effects of Long Covid and how to best manage it. Anna Brooks, is an immunologist and Senior lecturer at the University of Auckland, and she is part of a team of international researchers investigating the debilitating post viral condition.

Dr Brooks says even asymptomatic people can get Long Covid. Kathryn will also talk to Dr Bronwyn Lennox Thompson about the implications for returning to exercise.

She is a lecturer in Pain & Pain Management and Musculoskeletal Medicine at the University of Otago, Christchurch
Click to expand...
https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018836119/warnings-about-long-covid
 
New rticle in Aftenposten about exercise and covid. The positives are that they say they screen patients so that anyone that get worse following exercise should not do it, but at the same time I wonder how well that screening process works. I also think some of the people who are able to exercise more during the treatment is learning to plan their ue of energy better, not necessarily "doing more". They are not back to normal.

Stupid stuff about deconditioning, even with mild illness.

Denne gjengen prøver å løpe seg friske fra senfølger etter korona
This gang is trying to recover from late sequelae of the corona (A better translation of the headline would be "This gang is trying to exercise their way to recovery from late sequelae of corona")

Some quotes from patients:
Article said:
- Now I can train much more than a few months ago. But I have not been able to work after I became infected with the delta variant in August last year, says Anne K. Nordvik.
...
She still gets the feeling that her head is boiling due to stress or too much talk, she says.
...
- After both 24-hour and day stays, I felt in much better physical shape. I have become stronger mentally and can handle everyday tasks more easily. It is progressing slowly, even though I can not work or drive a car, says Nordvik. She says it has been crucial to meet others who experience the same "weird" symptoms - such as brain fog and boiling head.
Click to expand...

About the program:
Article said:
- In order to participate in such interval training, they must have managed to complete half a day of rehabilitation without their symptoms worsening. They must also see that they have the surplus to function at home after a day of training, says Bjørgen.
...
- If you have late sequelae after corona and do not exercise, what will happen?

- The alternative is then a gradual deterioration of physical fitness and reduced health. Physical activity is an important medicine for ailments that can be experienced after a coronary infection. Our job here is to dose the medicine correctly for the individual health condition, he says.

They use a lot of nonverbal instructions during training. Many of the patients react negatively to too much noise. They are encouraged to use the pool or do their own training, where they are to a greater extent shielded from various sound sources. Some need to sit alone at lunch.
Click to expand...

It ends with Flottorp from our national institute of public health saying long covid is rare.
 
Long Covid isn’t the first illness of its kind — one where a patient has an infection or sickness, but the symptoms never truly go away.

Researchers have struggled for years to understand post-viral diseases like myalgic encephalomyelitis/chronic fatigue syndrome and dysautonomia, a disorder of the autonomous nervous system. Currently there are no cures available. Patients with chronic, post-viral illnesses have often felt misunderstood and dismissed by the medical establishment.

https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/
 
Status
Not open for further replies.
Back
Top Bottom