Series of Guardian articles on Long Covid, October 2022

Sly Saint said:
‘They can’t ignore us any more’: five women on long Covid and medical misogyny


https://www.theguardian.com/society/2022/oct/18/long-covid-women-symptoms-medical-misogyny
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The issue I always have with this argument is that men are being dismissed right alongside them, for ME/CFS and Long Covid. Its not like there aren't plenty of men as well that are getting anxiety and depression diagnoses, they are not receiving real treatment, that isn't happening.

This isn't a womens issue its a health care issue around an unknown neurological prejudice one where Psychiatry has built up high walls. Everytime these arguments are made it just makes me a little bit less welcome. About a year ago there was a post about this on /r/cfs where men were getting treated with prejudice by the women and the moderator (premium-cat) dismissed the lot and deleted the entire chain, all the evidence all gone. So misandry is to me common place in the CFS community already and dismissing one third of your fellow sufferers I don't think is a good strategy. Some of the worst offenders today in the field are female doctors. It might be the historical context but nowadays its just societies prejudices.
 
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PwME and LC get gaslighted regardless of gender, but I believe it's worse for men than women.
 
RedFox said:
PwME and LC get gaslighted regardless of gender, but I believe it's worse for men than women.
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Don't know, when I see my aunt struggle with LC the last year and a half or so and my own struggle with ME that started in 2003 there are overlaps, there are differences but they are mostly down to people either being ill-informed or misinformed or people being jackasses. There was no disbelief from my GP, there was no disbelief at the hospital that ran the standard gamut of tests on me, and I even had a specialist diagnose me with M.E.

My aunt has the backing of her insurance doctor who is specialized in LC and echoes much of our sentiments.

We both had the experience of not understanding the disease, the journey was shorter for my aunt because more is know these days and her insurance doctor is very knowledgeable + she could lend my ear for information. We both had the experience of family members not understanding and being a bit disgruntled at first. We both had the experience of that turning around when they saw what things were like for us.

We both too had our run of ignorant jackasses remarking the disease must be psychological(between the ears they say in Dutch) and some that just seemed to go out their way to make grievous remarks or make life difficult for us.

Luckily we're both in a relatively good place now, surrounded mostly by people that understand or at least try to understand. But our journeys have been pretty similar me being male her being female. It might just be about the people you encounter. We're lucky to have mostly supporting families and the backing of either a GP and a specialist(me) or an insurance doctor(her). Others seem to be much worse off with some of the people in their lives.
 
The mystery of long Covid: Inside the 21 October Guardian Weekly

Our cover story this week steps back from the news agenda to explore the impact of living with long Covid. For millions of people worldwide who have survived initial infection with the virus, recovery is slow. Symptoms such as breathlessness, fatigue and loss of smell or taste persist for months and, as our science editor Ian Sample explains, treatments that work for some may not be successful for others. Through case studies and data our main feature examines how patients are facing up to the long tail of infection and how research may lead to painting a fuller picture of the aftermath of such a debilitating illness and finding treatments.
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https://www.theguardian.com/news/20...g-covid-inside-the-21-october-guardian-weekly
 
BrightCandle said:
The issue I always have with this argument is that men are being dismissed right alongside them, for ME/CFS and Long Covid. Its not like there aren't plenty of men as well that are getting anxiety and depression diagnoses, they are not receiving real treatment, that isn't happening.

This isn't a womens issue its a health care issue around an unknown neurological prejudice one where Psychiatry has built up high walls. Everytime these arguments are made it just makes me a little bit less welcome. About a year ago there was a post about this on /r/cfs where men were getting treated with prejudice by the women and the moderator (premium-cat) dismissed the lot and deleted the entire chain, all the evidence all gone. So misandry is to me common place in the CFS community already and dismissing one third of your fellow sufferers I don't think is a good strategy. Some of the worst offenders today in the field are female doctors. It might be the historical context but nowadays its just societies prejudices.
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I remain to be convinced that prejudice against long Covid is due to “medical misogyny” to use the language of this article as I’m not sure most doctors would know of any big gender differences in the numbers affected.

It is possible that either men or women with the condition are treated worse but as I say I’m not convinced that prejudice against the condition in general is due to the gender breakdown of those affected.
 
Sly Saint said:
‘They can’t ignore us any more’: five women on long Covid and medical misogyny


https://www.theguardian.com/society/2022/oct/18/long-covid-women-symptoms-medical-misogyny
Click to expand...
The language historically used to describe the illness – in the 1980s,
ME/CFS was called a disease of “depressed menopausal women” and widely
referred to in the media as “yuppie flu” – shows how it has been
disregarded because it mostly affects women, she says.
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I have seen a lot of media coverage over the years along with medical articles. I’m not sure ME/CFS was that often called or seen as a disease of “depressed menopausal women”.

It was seen as yuppie flu but I don’t think that has a strong association to women over men. Indeed my stereotyped impression of a yuppie when yuppie flu was being used in late 80s and early 90s was a man with a mobile phone or car phone (when these were still newish)
 
Sly Saint said:
‘They can’t ignore us any more’: five women on long Covid and medical misogyny


https://www.theguardian.com/society/2022/oct/18/long-covid-women-symptoms-medical-misogyny
Click to expand...
I’ve finished reading this now. Not convinced it showed their experiences were down to medical misogyny. Nearly all of it were just five random patients describing their experiences and they could have found men to say similar things.

Saying that it is possible women in a similar situation do face worse experiences. Or perhaps men do. Who knows.
 
Art Vandelay said:
It's a quote attributed to Stephen Straus (NIH) after the Incline Village Outbreak.
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Thanks. My point remains that the evidence they cite in this paragraph to explain why the illness has been disregarded is weak:
The language historically used to describe the illness – in the 1980s, ME/CFS was called a disease of “depressed menopausal women” and widely referred to in the media as “yuppie flu” – shows how it has been disregarded because it mostly affects women, she says.
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Over 2,000 Guardian readers told us about their long Covid fight. Here are their stories

The chronic condition has an array of physical and neurological symptoms, but most remain misunderstood.
From overwhelming fatigue to brain fog that makes it impossible to complete daily tasks, long Covid is having a devastating impact on people’s lives around the world.

But with no test for the chronic condition, it has proven difficult to measure how many people are living with the syndrome weeks, months and even years after contracting the virus. It is an umbrella term describing an array of physical and neurological symptoms, including ones like memory issues.

A recent call out asking Guardian readers for their experience with long Covid received nearly 2,000 responses from people in the Americas, Asia, Africa, Europe and Oceania.

Many respondents described their struggle to have their condition taken seriously by doctors, family and friends; others spoke of difficulties getting an official diagnosis and being recognized as disabled by their workplace or government. Some also said they had been financially affected after having to take significant time off work, reduce their hours or stop working entirely, reflecting a survey that found one in five workers were not working as a result of illness, while almost half of those had reduced their hours.

Here, seven people from around the world share their experiences of living with long Covid, and the impact it has had on their physical and mental health, ability to work and relationships.
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https://www.theguardian.com/society/2022/oct/25/long-covid-fight-guardian-readers
 
Long Covid: ‘fraction’ of sufferers getting NHS help in England

Only 60,000 of an estimated 277,000 people have been seen by specialist service, figures show

Just a “fraction” of long Covid sufferers are getting the help they need, with a third of them waiting more than three and a half months to be assessed after a GP referral, rising to almost half in some areas.

More than 60,000 people in England had a first assessment for post-Covid syndrome in an NHS specialist service between July 2021 and August 2022.

But the latest estimates released by the Office for National Statistics (ONS) show that about 277,000 long Covid sufferers in England report that the disease has limited their day-to-day activities “a lot”. These are the people that experts would expect to be referred for an assessment; however, the numbers who have been seen are far lower.

Dr Helen Salisbury, a GP and columnist for the BMJ, said: “A fraction of the people who have got this problem are actually being seen” within the existing services.

She said reasons could include patients not realising that the help is available to them; GPs not recognising long Covid in those who do not self-label as having the condition; and a lack of knowledge of, and local access to, specialised clinics.

While Salisbury conceded that there was no current cure for long Covid, she added that patients require treatment that involves symptom management, psychology and knowing they are not alone in their diagnosis, which she said was “really, really important” for sufferers.

Otherwise the lack of access to specialist care may leave patients “prey to all sorts of snake-oil salesmen”, she added.

https://www.theguardian.com/society...tion-of-sufferers-getting-nhs-help-in-england

 
That is an interesting take given the number of long covid sufferers is 2.3 million, seeing a fraction of the worst is pretty terrible. It's also notable it was 28,000last year so there hasn't been much increase in acceptance. But one of the issues is that the long covid clinics are just a rename of the cfs clinics and they refuse to do house visits so despite comparing to the worst affected I doubt that is the sub population they are actually seeing. The NHS really needs to show how many diagnosed it has and explain the gap to the estimates.
 
The guardian said:
More than 60,000 people in England had a first assessment for post-Covid syndrome in an NHS specialist service between July 2021 and August 2022
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How does that even qualify as "getting help"? The mere act of seeing a "specialist" in sham clinics for a first assessment is not a serious definition of "getting help". That fraction is actually zero, because there is no evidence that anyone with LC is getting any help from those clinics that doesn't mostly constitute of undoing harm, say in the form of bad advice, from healthcare services in the first place, and even that is the exception, not the norm. Most of that advice was developed by patients and all the few clinics that aren't doing more harm than good do is pass those as their own.

There is such a weird "build it and you're done" mentality in healthcare, where purely symbolic acts are essentially considered the exact same as effective and comprehensive healthcare. It's the main flaw in mental healthcare, that it's still so primitive and ineffective it barely qualifies as professional, but that's all people ever have to say: just see a professional. As if it's 100% effective, when it's basically less effective than a coin toss.

A system that can't assess its own performance is not able to perform.
 
rvallee said:
How does that even qualify as "getting help"? The mere act of seeing a "specialist" in sham clinics for a first assessment is not a serious definition of "getting help". That fraction is actually zero, because there is no evidence that anyone with LC is getting any help from those clinics that doesn't mostly constitute of undoing harm, say in the form of bad advice, from healthcare services in the first place, and even that is the exception, not the norm. Most of that advice was developed by patients and all the few clinics that aren't doing more harm than good do is pass those as their own.

There is such a weird "build it and you're done" mentality in healthcare, where purely symbolic acts are essentially considered the exact same as effective and comprehensive healthcare. It's the main flaw in mental healthcare, that it's still so primitive and ineffective it barely qualifies as professional, but that's all people ever have to say: just see a professional. As if it's 100% effective, when it's basically less effective than a coin toss.

A system that can't assess its own performance is not able to perform.
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You're spot on here. 277k disabled by LC. 210k didn't visit a LC clinic, but those who did got very little. We need to research treatments badly.
 
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