📰 News coverage of the NMCB research consortium on ME/CFS.

Science editor of De Volkskrant, one of the largest papers in the Netherlands, interviews Jos Bosch consortium project leader.

Some highlights below and a link to the article.

1/ Facts noted about the project:
➡️ All academic hospitals participating
➡️ Over €7m euro gov. funding available
➡️ Large biobank being established
➡️ 6 studies underway
➡️ Expansion thereof is planned

2/

In my opinion, the potential for repeated PEM episodes to trigger a longlived or permanent decline in baseline health should be included in the definition of PEM.

Then re-examine the common assertion that PEM occurs in many illnesses on that basis. Maybe even more precise - a longlived or permanent decline in baseline health accompanied by an increasing tendency to trigger PEM with less and less exertion.

I'm impressed by this handout on PEM. This is attached along with the information every GP needs to register patients with the Long COVID clinics in the Netherlands.

I will put the salient text below in thread. What is PEM?

Post-exertional malaise (PEM) is the worsening of symptoms after physical, cognitive and/or emotional exertion. In addition to the worsening of existing symptoms, it can also lead to physical and/or cognitive symptoms that have not occurred before.

...

"The Long Shadow of COVID"

The 7th documentary by German doctor and presenter Eckart von Hirschhausen is now up on YouTube. It's 44 mins long and the quality is high.

Below I'll set out:
1. Overview of topics covered
2. More detailed summary of each part
3. Relevant links

👇 1. Topics covered (with timestamps)

(00:00) - Intro / catchup with a severe patient
(03:39) - Segment on anti-vax misinformation
(06:30) - Long COVID feat. PostX @TeamPostX!
(10:00) - Liegendemo in Berlin
(11:26) - ME/CFS
(13:21) - Patients taking action, feat. @U2Fight_World

2/

Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment. Living with the consequences of (a) not doing anything, (b) doing something that doesn't go well. Educating people in your life. Pushing through misunderstanding, disbelief, dismissal, or ridicule. Managing expectations. Deciding when to push and attend and when to disappoint.

@DrDavidACox @BBC_Future Thanks so much, Dr. Cox, for spending the time and going into detail on this topic and for bringing in such a wide array of experts.

The article does a good job of painting a line between standard fatigue and the beast that is PEM, which is neuroimmune in character.

1/ @DrDavidACox @BBC_Future I also really like how you've chosen to draw a line between various forms of fatiguing illness, which might be regarded as infection-associated chronic conditions (IACCs) - I think this is appropriate.

It's nice to see mention of how inadequate the term fatigue is...

2/

This video about Long COVID and ME/CFS is now trending #5 on YouTube 🇩🇪

Below I'll do a summary of the piece for those who don't have the energy to go through it 👇

🧵

https://twitter.com/h_lebt/status/1830162965116436835

It opens with a quite from Der Spiegel journalist Nikolaus Blome describing psychological instability as a risk factor for LC (paraphrasing),

"People who were not doing so well before now have an official ticket to get compensation"

1/

Ren's comment under the music video for his new single, "Troubles":

"May is Millions missing month, or M.E. awareness month. When I was first diagnosed with M.E. the amount of support and understanding of this illness was very low... "

1/ "...I was left to suffer with no real explanationas to why. I wasn’t told at the time that this can be a by product of conditions like Lyme, POTS, MCAS, reactivating viruses.

I had to figure that out by myself and it took years of trial and error, and treatments that ..."

2/

Hey, journalists! 😃

Happy new year!

Here are 5 things about Long COVID or Post-Acute Sequelae of COVID that I'd love you to understand better in 2024.

Short 🧵... 1. Precedent

There are precedents not only for the illness itself, but for how it will be ignored/downplayed/psychologised by medical and government institutions. Please look into myalgic encephalomyelitis / chronic fatigue syndrome and chronic Lyme disease, for starters.
...

Just so I'm clear on the medium term plan for the next 3-5 years in relation to disabled and immunocompromised people.

Let me know if I'm missing anything.

Our leaders plan to:
> Ignore that disabled and vulnerable people are essentially condemned to permanent lockdown...

1/ > Let the virus that disabled many of us circulate freely and mutate

> Not mention and actively stigmatise mentioning the virus itself by name

> Make the vulnerable mask at their own expense to participate in society at an absolutely baseline level

2/

The scope of what people with Long COVID, ME/CFS and other virus-triggered disabilities are expected to forfeit in life is something I mostly don't think about because it's too sad.

But meanwhile we've got doctors ignoring our symptoms and telling us to exercise... ... We've got public health telling us
- it's not happening
- the virus that disabled us causes no lasting immune harm

... we've got journalists telling us
- long COVID problem is disappearing
- lockdowns were actually more dangerous than the virus that disabled us...

A thread of socialists not mentioning Long COVID or not having mentioned it for a long time.

Feel free to contribute. @DSA_Labor