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

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rvallee said:
It's annoying to still see the trope of "this illness used to be stigmatized" going on. It's technically true that it used to be discriminated. It still is, but it used to be, too. But the far more important point is that it currently is 100% discriminated against. Nothing has changed.
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Could be the law of unintended consequences at play. Consider how so many patients, advocacy groups and biomedically orientated researchers and clinicians talk about ME. Our intention is to move the discourse to a point where ME is naturally discussed in much the same way as MS or Parkinson's but the way we frequently express ourselves may not be having the desired effect:

- It used to be considered psychological but now there's a lot of biomedical evidence to show it's not.

- CBT used to be recommended but now the CDC [or substitute other relevant health authority] no longer recommends it.

- It used to be called Yuppie Flu but now it's called ME.

- And so on.

It's really no surprise journalists conclude that past=psychological=stigma but now=biomedical=no stigma.

I don't think we can blame the average journo for coming to that faulty conclusion, however annoying it is (very!). But I am disappointed there aren't more specialist health and science journalists looking more deeply into the whole MUS morass. I have a faint hope long covid might spark more interest in the matter but I fear any attention it does get is going to be short-lived and then any unfortunate long-haulers not recovered within a year or two will be joining our ranks to find out just how much stigma and discrimination there is. Would love to be wrong on that one!
 
Ravn said:
I don't think we can blame the average journo for coming to that faulty conclusion, however annoying it is (very!).
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Yes we can. Journalists are well aware that there are social consequences to their writing. They are well aware that (misleading) attention grabbing statements can cause stigma and harm. They continue to write such, because there are no personal consequences.
 
Ravn said:
- It used to be considered psychological but now there's a lot of biomedical evidence to show it's not.

- CBT used to be recommended but now the CDC [or substitute other relevant health authority] no longer recommends it.

- It used to be called Yuppie Flu but now it's called ME.
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I agree with your first two points and would add to these, patients and carers using adjectives like "mysterious" when talking to journalists.

And I never liked the UK ME Association's tee shirt slogan:

it's real!
it's physical!
it's ME!​

and I think they should drop it.

But it was journalists who latched onto the term 'Yuppie flu' in the '80s and it is journalists who perpetuate its usage as "...used to be known as 'Yuppie flu'..."

We play a game in our household - how many lines into a media article before the journalist felt compelled to slip in "...which used to be known as..."

 
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Snow Leopard said:
Yes we can. Journalists are well aware that there are social consequences to their writing. They are well aware that (misleading) attention grabbing statements can cause stigma and harm. They continue to write such, because there are no personal consequences.
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Indeed. Here in the UK, non medically or scientifically qualified journalists, for example, The Times and Sunday Times' David Aranovich and Rod Liddle, are permitted to write opinion pieces on the aetiology of ME. Their papers don't give them space to write opinion pieces on other diseases.
 
Long Covid: 'My fatigue was like nothing I've experienced before'

By Natasha Lipman

Thousands of coronavirus patients, including many who were not ill enough to be hospitalised, have been suffering for months from fatigue and a range of other symptoms. While professionals struggle to support them, what can they learn from those living with chronic illnesses?

If you've been following the stories of people who have contracted coronavirus and are experiencing debilitating symptoms that won't go away, Jade Gray-Christie's story may sound familiar. Because her symptoms were considered "mild", she was not hospitalised, but her life has been turned upside down since falling ill in March.

Before the pandemic, Jade had been living an extremely busy life. The 32-year-old from Stoke Newington in London was balancing a fulfilling job supporting young people from disadvantaged backgrounds, with an active social life, and going to the gym three times a week.

But in the early hours of the morning on 15 March, Jade came home from a long day at work, and knew something wasn't right.

"I felt horrendous. I was starting to feel really hot and cold and I just kept coughing and coughing and coughing," Jade told me, speaking softly, through laboured breaths.

More at https://www.bbc.co.uk/news/stories-54106272
 
Long Covid: 'My fatigue was like nothing I've experienced before'

https://www.bbc.com/news/stories-54106272

Jade was taken aback. "What do I do about my breathing? I'm asthmatic. I live by myself so if something happens I've got nobody to support me. What do I do?"

But she was told that they weren't taking anyone under the age of 70 in case she made someone else in the hospital ill.

"So I was kind of just left," Jade says. "I understood what they were saying, but at the same time I was really poorly and I didn't know what would happen. I was quite scared to go to sleep at night."
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And then people turn around and gasp at how this must be hard for mental health. Medicine is literally the biggest factor of uncertainty and despair here, by failing to work with reality.
As time went by, she did seem to slowly improve. But every time she thought she was making a recovery, her symptoms returned.

In May, Jade felt well enough to start working part-time from home. She was still experiencing chest pains and some tiredness, but as someone who was used to a busy life, she felt she could manage.

Then, at the end of the month, something changed.

"My chest got really bad again. I was struggling to breathe and I wasn't able to get out of my bed," she says. "My fatigue was like nothing I've ever experienced before."
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When I checked in on Jade at the end of July, she told me that her doctor said she had post-viral fatigue - but she hadn't been given any advice on how to manage her symptoms beyond being told to "pace" and have a routine for sleeping and waking.

Pacing is a skill that involves breaking challenging elements of your life into smaller, more manageable ones. The idea is to learn coping strategies to help improve quality of life and stabilise your health.
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Not really, but even if the advice is incorrectly described at least the patients can look it up themselves. Hopefully they do look it up because so many physicians advise to stay away from social media, which countless post-Coviders have hailed as a lifeline, precisely because medicine is failing them.
But Jade struggled to understand how to apply the idea of pacing to her life. Keeping to a routine felt almost impossible, as she often woke up exhausted and just fell back to sleep again.

"When I did speak with the doctor regarding my dizziness, the fact I have fainted, and also about my fatigue, he openly stated that he did not know how to support me and that the virus is still so new. This of course left me feeling even worse."

"If the doctors cannot help, then who else can?" she asked.
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Some struggle to be taken seriously at all, with people being told, especially early on, that their symptoms are caused by anxiety, she says.

Others have sympathetic GPs who will arrange blood tests and chest X-rays or CT scans for lung issues - but once those examinations have been carried out, they are not sure what specialist services to refer them to, or how to help them.

"I think most GPs are at an absolute loss, they don't know what to do for people," Barbara says. "It's about policy. Doctors don't have the guidelines yet to know what to do, so everybody is shooting in the dark."
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One main problem here is that they do have guidelines, just wrong ones. Guidelines that not only guarantee failure in clinical practice but stifle and block research from moving forward.
Looking for answers, she turned to the chronic illness community and realised that many of their symptoms overlapped. She found a huge amount of useful advice and support about how to cope with a long-term health condition - learning that with the right adjustments it was still possible to have a fulfilling life.

"If you've never been ill before, it takes a lot of emotional and physical resilience," she says.

She also noticed that early on in the pandemic, people living with chronic illness were already speculating about the potential long-term repercussions of coronavirus, and were concerned for this new influx of patients.

There was a palpable fear that some people wouldn't make a full recovery, and also that this would strain a system where many already struggle to get the care and support that they need.
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Time to operationalize this fact, that the chronic illness community has a better handle on this than medicine. It's time for genuine patient engagement, nothing about us without us. It will work. As Garner said: NO MORE FAFFING.
"The chronic illness community is used to waiting 12 months to see a specialist or spending three hours in a clinic waiting for a 10-minute test, but this may well come as an unpleasant shock to previously healthy folks," says Jo Southall, an occupational therapist who specialises in supporting people with chronic illness.
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I don't think it's fair to say we are used to this since we constantly complain about this and never get any useful replies. It is imposed on us and we adapt, but just because it's not surprising anymore doesn't make it any less shocking and immoral.
 
Covid Everlasting

https://www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness/

After six months’ experience with Covid-19, medical researchers have learned a lot about the disease. But among the still-open questions is this big one: How many people who’ve been infected will suffer lasting symptoms and health problems?

Like many other illnesses, Covid-19 can cause enduring problems. Some victims report serious symptoms weeks and months after infection, even many who were never ill enough to be hospitalized. Nearly 100 different long-term problems, detailed in the chart below, were reported to Indiana University Medical School researcher Natalie Lambert, in a survey of more than 1,500 patients. Some of these issues go well beyond typical Covid symptoms.
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In studies of Covid patients, researchers have found evidence of damage to the lungs, kidneys and heart, and one recent paper described a mechanism by which the virus may have lasting effects on the brain. Some Covid long haulers report weakness after exertion and brain fog, which are signs of chronic fatigue syndrome, a poorly understood condition that has been linked to other viral infections.
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To be prepared for long-term Covid-19 problems, all health systems will need to monitor “recovered” patients, assess the prevalence of lingering symptoms and look for ways to help these patients.
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No big deal, just have to overturn decades of denial aggressively blocking this, involving a full reform of how medicine functions and acknowledging catastrophic negligence ongoing for decades harming tens of millions. It's needed but definitely no small task. This could have been avoided, we told you so, but let's rip the band-aid, the only option is abandoning everyone, just like they abandon the rest of us.

There are great graphics on the page but are built in HTML/CSS and I don't have the energy to make screenshots.
 
There's been a growing message these past few weeks over how only a small minority of very old people are at risk and that's going to cause enormous problems mixed with the sewerage of ME denial and general discrimination of chronic health problems. Especially now that death rates are falling significantly in part because acute care has gotten much more effective. Lots of people sending the message that it should be allowed to run through populations.

This is very bad. Denial has consequences. Ignorance is definitely weakness.
 
"The chronic illness community is used to waiting 12 months to see a specialist or spending three hours in a clinic waiting for a 10-minute test, but this may well come as an unpleasant shock to previously healthy folks," says Jo Southall, an occupational therapist who specialises in supporting people with chronic illness.
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We're expect this but some of us are no longer used to it because we simply can't afford the toll it would take on our health to do it. Many of us just don't bother anymore.

Never mind going to an outpatient clinic some of us take risks by not attending A & E on occasion when we should, crossing our fingers and hoping for the best. Even if we could magically teleport there, there is no way we could cope with the waiting times and the environment.

The health care system isn't designed to be accessible to people like us.
 
rvallee said:
It's annoying to still see the trope of "this illness used to be stigmatized" going on. It's technically true that it used to be discriminated. It still is, but it used to be, too. But the far more important point is that it currently is 100% discriminated against. Nothing has changed.
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An off-topic tangent here sorry but that was a New Zealand TV item, with the reporter based in Christchurch. He was in contact with MECFS Canterbury, the regional patient support group. The Canterbury District Health Board has been good, for nearly a year now the official guidance for doctors for ME/CFS specifically recommends against GET and says ME/CFS isn't a psychological issue. There are other District Health Boards in NZ with similarly enlightened official standpoints. Of course there's still a great deal of stigma, not helped by key people in the national ME/CFS patient advocacy organisation (ANZMES) clinging stubbornly to ideas of an ME personality predisposing people to getting the condition. But to be fair to the reporter, ME/CFS is not 100% discriminated against here. (maybe 70% :grumpy:)

Also, I personally think a 'this illness used to be stigmatised but there are still some health professionals who haven't caught up with the news who are causing great harm' is a useful line in my part of New Zealand. It's not completely true but it paints the BPS crowd as the prejudiced slow learners that they are.
Ravn said:
But I am disappointed there aren't more specialist health and science journalists looking more deeply into the whole MUS morass.
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. Yes, I'm not sure if things are getting better or worse in NZ regarding MUS in general, rather than ME/CFS specifically.
 
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rvallee said:
There's been a growing message these past few weeks over how only a small minority of very old people are at risk and that's going to cause enormous problems mixed with the sewerage of ME denial and general discrimination of chronic health problems. Especially now that death rates are falling significantly in part because acute care has gotten much more effective. Lots of people sending the message that it should be allowed to run through populations..
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It is shocking how the people who keep saying "covid19 isn't so bad once you get to know him" or "covid19 only harms your granny, so we should just protect our grannies and allow it to circulate in younger people" don't realise their false premises. The fact remains that the only nations that have successfully protected the older generation are nations that strove for elimination.
 
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