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

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petrichor said:
Why does talking/thinking about ME create anxiety and fear?

Because it makes people worried about getting permanently sick?
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I suspect it's an evolutionary defense measure, and that like many things 'suspected' of causing issues the underlying cause is 'disgust'.

It doesn't matter if there is any rational behind this, once an association is formed between something, and an undesirable 'health' outcome, then the response is 'disgust', and all sorts of irrationality is the natural outcome when 'forced' to endure contact with the trigger.

Anxiety and fear being some of them.

Anger and othering being others.

This is not a rational process, and whilst there is a conscious input into the initial attribution this is not on a level of making a decision.

Sick people, keep them away, or you and your family might get sick. Self statements that you are sick, and that this is untreatable, and that it has a major impact on what you can do, may, for some (a lot) people, kick in this primitive defense mechanism against sickness.

The 'altruistic' part of human nature is blocked, as far more capable people have tried, and failed, to 'cure', and the person hasn't got better, therefor the defensive instinct switches on - can;t have sick people wandering around as they may spread it sorta thing.

Reason has no place in this - it's probably built in, and probably a large part of the reason why the things that later became hospitals existed, to keep all the sick people in one place, away from others.

Not to treat the sick, but to protect those who weren't, currently, sick.

Just my opinion.
 
petrichor said:
Why does talking/thinking about ME create anxiety and fear?

Because it makes people worried about getting permanently sick?
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Yes, that is my impression. As one of the admins put it, the information scares people and they get really anxious and stressed out. Reading about ME makes people experience unpleasant thoughts and emotions. Simply scrolling past posts mentioning ME isn't enough, they would rather ME isn't mentioned at all.

Several of them are already using pacing and say that they are aware there's a chance they already have ME. But they don't want to know or think about it.

Someone explained that they want to keep hope up, and therefore doesn't want to accept the possibility of already having or getting ME, because they are aware of the prognosis for ME, the lack of treatments, the underfunded research etc.
 
mango said:
Yes, that is my impression. As one of the admins put it, the information scares people and they get really anxious and stressed out. Reading about ME makes people experience unpleasant thoughts and emotions. Simply scrolling past posts mentioning ME isn't enough, they would rather ME isn't mentioned at all.

Several of them are already using pacing and say that they are aware there's a chance they already have ME. But they don't want to know or think about it.

Someone explained that they want to keep hope up, and therefore doesn't want to accept the possibility of already having or getting ME, because they are aware of the prognosis for ME, the lack of treatments, the underfunded research etc.
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That's very interesting. ME seems to have this reputation as a permanent illness amongst some people, when it's actually really people that have had it for at least 2-5 years that are unlikely to recover. On the covidlonghaulers subreddit I've seen some people talk about not talking about ME so they don't get anxious about it, but for the most part they seem okay with discussing it.

Do you think this is partially a result of the media attention ME has gotten in sweden? And do you think not wanting Long Covid to be ME because it's stigmatised or controversial is a factor?
 
petrichor said:
That's very interesting. ME seems to have this reputation as a permanent illness amongst some people, when it's actually really people that have had it for at least 2-5 years that are unlikely to recover. On the covidlonghaulers subreddit I've seen some people talk about not talking about ME so they don't get anxious about it, but for the most part they seem okay with discussing it.

Do you think this is partially a result of the media attention ME has gotten in sweden? And do you think not wanting Long Covid to be ME because it's stigmatised or controversial is a factor?
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Yes, a few of those who don't want to read about ME have mentioned the media attention (it being "too much"). I haven't seen any mentions of stigma as a factor.
 
Sean said:
I am guessing it is not the first time in history either.
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You can say that again.

Although not a trade union, here is medicine begrudgingly admitting that maybe millions of reports over several decades may have somehow possibly been true even though they insisted the whole time that there is nothing to it, got angry at those reports even. Not that I expect them to change anything until forced to...

Seriously look at this hubris, that they "come to realize" after decades of unavoidable evidence. This is pathetic failure to learn from experience and explicitly not following the evidence.



Although how much of those are chronically ill people who were prescribed this medication for no good reason and are simply continuing to be ill? Literally impossible to tell, no one's counting.
 
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Study from Norway on Long Covid. Among the references are studies from White, Wessely and Chalder.
The Norwegian public broadcaster NRK has an article today about the study saying that over half of young people with milder symptoms during Covid-19 infection got long term issues afterwards. It's good to final see some articles here that are not dismissive of Long Covid.

Nature Medicine Long COVID in a prospective cohort of home-isolated patients - Bjørn Blomberg et al

Abstract
Long-term complications after coronavirus disease 2019 (COVID-19) are common in hospitalized patients, but the spectrum of symptoms in milder cases needs further investigation. We conducted a long-term follow-up in a prospective cohort study of 312 patients—247 home-isolated and 65 hospitalized—comprising 82% of total cases in Bergen during the first pandemic wave in Norway. At 6 months, 61% (189/312) of all patients had persistent symptoms, which were independently associated with severity of initial illness, increased convalescent antibody titers and pre-existing chronic lung disease. We found that 52% (32/61) of home-isolated young adults, aged 16–30 years, had symptoms at 6 months, including loss of taste and/or smell (28%, 17/61), fatigue (21%, 13/61), dyspnea (13%, 8/61), impaired concentration (13%, 8/61) and memory problems (11%, 7/61). Our findings that young, home-isolated adults with mild COVID-19 are at risk of long-lasting dyspnea and cognitive symptoms highlight the importance of infection control measures, such as vaccination.
 
mango said:
I've been following the discussions in several Swedish long covid/post-covid groups on Facebook for a while now. One thing I've noticed is that ME appears to be an increasingly controversial topic.

Lots of people argue that discussions about ME shouldn't be allowed in the long covid groups (basically because talking/thinking about ME creates fear and anxiety, and also because ME is "a different disease" with its own groups), while others (including pwLC who have recently been diagnosed with ME, and pwME who have long covid) believe it should definitely be allowed.

One of the groups seem to have solved the issue for now by requiring a trigger warning for posts that mention ME.

I haven't seen any similar resistance to other diagnoses such as POTS, for example.

Is this happening in other countries as well?
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Here's a Twitter thread in Swedish, by a pwME who came down with long covid as well, and replies by a pwLC.
Auto-translate said:
@Spetspatient
Am deeply shocked and heartbroken, am part of a PACS group that has now introduced rules about avoiding mentioning ME, and that posts about ME should be marked TW [Trigger Warning]. Can't find the words for this. As well as adding to the stigma for a whole patient group, it increases the risk of serious patient harm.

I hope the admin realizes the seriousness. Moderating large groups is difficult, but hiding the facts is dangerous. We know far too little yet to lump PACS in with other diagnoses, but also to differentiate. Don't silence sufferers! Any data on the consequences of covid is important!

I was affected by PACS myself, but have been quiet about comparing or advising how others with PACS should relate to symptoms. I can only start from myself, and my ME started with another severe infection. I wish I had been advised about pacing early on, but by doctors, researchers, health care providers. Would I have prevented worsening? There is no way to know. All I know is that exercise and cbt made my condition worse.

@ar_covid
They are unbelievable in many of those groups. They recommend the Lightning Process and various think-yourself-healthy crap completely uncritically. But if anyone mentions people getting chronically ill from viruses in the past, all hell breaks loose. Left a long time ago.

@Spetspatient
Agree, so much tips and advice that can harm and based only on anecdote, not science. The worst thing is that such false sense of security/recovery hits so incredibly hard later when the effects (usually) wear off. Ignoring the facts harms in the long run!

Translated with www.DeepL.com/Translator (free version)
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In Swedish: Recording of an online seminar about long covid, 7 June 2021.

(I haven't watched it, so I'm sharing this as info only, not a recommendation.)

Judith Bruchfeld, infectious disease doctor.
Michael Runold, pulmonologist.
Malin Nygren Bonnier, physiotherapist.
Marcus Ståhlberg, cardiologist.

An event organised by the Swedish Covid Association in collaboration with the Swedish EDS Association, RME/the Swedish ME Association and the Swedish Fibromyalgia Association.



https://covidforeningen.se/seminari...xa-symtom-behover-multidisciplinara-insatser/
 
BMJ feature: Chronic fatigue syndrome and long covid: moving beyond the controversy

Long article, which starts with fun stuff like:

“I submitted the first positive trial of cognitive behavioural therapy [CBT] as a treatment for chronic fatigue in the ’90s,” recalls Michael Sharpe, a professor of psychological medicine who was then a lecturer at Oxford University. “Next thing, my head of department got an unsigned letter, sent to The BMJ, saying that the research study was made up.”

It was the start of a lengthy campaign to prevent and undermine his research by some advocates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) who object to suggestions that their illness has a psychological element.​

After a period of “a lot of awfulness” Sharpe moved to Edinburgh University, where he initially decided to abandon the field but was drawn back by the Pace trial.1 Pace examined the effectiveness of CBT and graded exercise therapy (GET), in which the patient does progressively more exercise over time, combined with medical care. It was always going to be controversial.

“The Medical Research Council was being lobbied, people were trying to stop participants joining the trial—we had so much flak,” he says. Published in 2011 in the Lancet, the Pace trial found that both CBT and GET led to greater improvements in some participants than medical care alone. Since then the trial has been a lightning rod for ME/CFS advocates’ anger, drawing ceaseless attacks on the conduct of the research, the researchers, and the results.​

The article goes into great detail about how BPS folks are always under fire by "some" patients who reject all psychological element and all forms of exercise. Paul Garner gets extra attention from the article: no mention of LP but that pacing didn't work for him and a recovered ME/CFS patient helped.

Garner believes that the non-specific concept of post-exertional malaise can cause patients to fear activities and overexertion. He also suggests that the malaise after exercise is normal early on but that it then becomes a learnt automatic brain response.

“I think it is really important not to emphasise post-exertional malaise as if it is a disease,” he explains. “Early on I got suckered into it as something that might never go away. Part of my recovery has been around changing my thoughts around different body signals. If you see any signal as abnormal you feel insecure or get stressed, the most minor feelings get exaggerated by your brain, and you take to your bed.”​

Charles Shepherd is also quoted though:

"We are not against exercise,” Shepherd told The BMJ. “Our view is that graded exercise can be harmful.”

In a 2019 survey of more than 2000 ME/CFS patients commissioned by the charity Forward ME,16 most patients reported worse symptoms after GET. In the National Institute for Health and Care Excellence’s recent draft guidelines on ME/CFS2—which considered other research including a separate survey of patients with severe ME/CFS, as well as criticism of therapist delivered treatments—a recommendation for GET/CBT has been removed, saying that the evidence is mixed or unclear. Meanwhile, long covid researchers are also learning to live with the increased level of scrutiny and complaints that teams working on CFS/ME have come to expect.​

Ben Marsh (doctor wME) and doctors dealing with long covid are also mentioned but I don't want to quote the whole article. In short, it tries very hard to look like it gives a balanced picture. Take a look and see if it worked.

Full article: https://www.bmj.com/content/373/bmj.n1559
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This post has been copied and the discussion moved to a new thread here:BMJ: Chronic fatigue syndrome and Long Covid, moving beyond the controversy, 2021, Newman
 
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The Guardian: More than 2m adults in England have had long Covid for over 12 weeks - study

Quote:
The study, one of the largest to date, found that people with ongoing symptoms tended to fall into two categories: those with respiratory symptoms, who often experienced more severe illness when they first got sick, and a second group with fatigue-related symptoms.

Like previous studies, it found that women were more commonly affected and that the prevalence of ongoing symptoms increased with age. Researchers described the findings as “alarming”.
 
‘Your body just stops’: long Covid sufferers face new ordeals as sick pay runs out

https://www.theguardian.com/world/2...fferers-face-new-ordeals-as-sick-pay-runs-out

Nurses, teachers and shopworkers who have lost their health and their jobs talk about their struggle for support


No mention that this was an existing problem, but yeah we are pretty hitting the big bump of too many people having run out of savings and facing destitution all at the same time.
 
mango said:
Here's a Twitter thread in Swedish, by a pwME who came down with long covid as well, and replies by a pwLC.

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The Swedish Covid Association has made a statement :thumbsup:


Auto-translate said:
We would like to stress that we do not support this. We see ME sufferers as "cousins" who have been mistreated without help for far too long. We also have subgroups of our members who meet the criteria for ME/CFS.

We believe that stigma should be countered and knowledge should be built for both groups.

However, we see that patients need to be able to protect themselves from frightening messages that are not yet backed up by research.

But then it is not the ME issue specifically that should be avoided, but unsubstantiated claims in general.

What was said in this particular group we do not know.

Translated with www.DeepL.com/Translator (free version)
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Looks like the use of a limited denominator is all the rage these days. When standards are lowered all you get in outcome is lowered standards.


Long covid military rehab programme 'helping to save careers'

https://www.bbc.com/news/uk-england-nottinghamshire-57599256


Look at the sleights of language:

Nearly all the patients that took part last year were able to return to work within three months.

...

At the centre they are tested for signs of long-term organ damage and taught how to overcome the key symptoms - shortness of breath, fatigue, low mood and "brain fog".

So far, about 150 patients have taken part in the programme.

...

Lt Col Sadar Bahadur, a DMRC consultant, said more than 90% of the 55 patients who completed the programme last year were back in work after three months.​

Just like IAPT's 50% "recovery", as long as you only count the 10% or so who complete the program. It "works" as long as you define "work" as being compatible with "doesn't actually work".

Unless they mean that 55 took part last year and 95 this year, but it still would align with the 90% natural recovery rates and suggests no meaningful impact from that program.
 
rvallee said:
Looks like the use of a limited denominator is all the rage these days. When standards are lowered all you get in outcome is lowered standards.


Long covid military rehab programme 'helping to save careers'

https://www.bbc.com/news/uk-england-nottinghamshire-57599256


Look at the sleights of language:

Nearly all the patients that took part last year were able to return to work within three months.

...

At the centre they are tested for signs of long-term organ damage and taught how to overcome the key symptoms - shortness of breath, fatigue, low mood and "brain fog".

So far, about 150 patients have taken part in the programme.

...

Lt Col Sadar Bahadur, a DMRC consultant, said more than 90% of the 55 patients who completed the programme last year were back in work after three months.​

Just like IAPT's 50% "recovery", as long as you only count the 10% or so who complete the program. It "works" as long as you define "work" as being compatible with "doesn't actually work".

Unless they mean that 55 took part last year and 95 this year, but it still would align with the 90% natural recovery rates and suggests no meaningful impact from that program.
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Mm.
Is this the same team that the Cochrane patient rep tweeted about ?
 
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