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

https://twitter.com/user/status/1307994506881642497

 

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!

 

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.

 

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..."

 

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

 

‘Second Opinion,’ Episode 4: The Long-Haulers

https://www.latimes.com/about/bfvpf5rbj2e-123

Rather good. First half is focused on 4 long-haulers. The 2nd half talks about autopsy findings with an expert pathologist at Mt Sinai.

https://www.youtube.com/watch?v=bfvpf5rbj2E

 

Long Covid: 'My fatigue was like nothing I've experienced before'

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

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.

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.

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.

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.

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/

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.

 

https://twitter.com/user/status/1308452315762958344

 

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.

 

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.

 

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.

 

Next week 29th sept on BBC radio 4 Adam Rutherford is doing a program on long covid. As he has it. This program might be rather good,
https://www.bbc.co.uk/programmes/m000mzms

 

https://www.youtube.com/watch?v=gRJ5_bMggWQ

 

https://efpia.eu/news-events/events...rnt-from-covid-and-the-future-of-neuroscience
https://twitter.com/user/status/1308693894008393728

 

Hadn't seen this before. As expected, complete trash. Written by BACME.

https://www.nbt.nhs.uk/our-services...syndromeme-service/post-viral-fatigue-a-guide

 

A Long Hauler on Twitter has put out a request for information from the ME/CFS/PVFS community.

https://twitter.com/user/status/1308786554547171334