Long Covid in the media and social media 2023

Podcast: The Long Covid Podcast
78 - Dr Lucy Gahan - Long Covid, Psychology, Loss & Activism

The guest is an NHS clinical psychologist with LC (who sounds to have improved from severe to mild-moderate over 18 months). Previously worked in palliative care, now part-time in an LC clinic.

Good discussion, eg drawing a sharp distinction between "depression" vs "chronic sorrow"; recognising and validating grief and loss; dismissal and 'unwitnessing' forming layers of trauma on top of the symptoms, representing a further injury.

 

This post has been copied to the thread on the NIH Recover program here

 

I've never been completely convinced that Blitshteyn has 'got' ME/CFS in the past, and her recent tweets advocating for 'well-designed' LC exercise studies hasn't changed my mind.

 

The whole "well-designed" is a classic No true Scotsman fallacy. What does it even mean? There have been many hundreds, in addition to likely above a million clinical applications of the very same model. A process that doesn't record any meaningful data, making any accountability impossible.

Does that mean they were all poorly designed? I sure agree. But what does it say about an entire discipline who produces 100% garbage? It's genuinely hard to find a more blatant "zero professionalism to be found here". Professionals do not produce useless garbage. So they'll somehow be able to do what they never managed to do so far? Which hasn't changed the widespread adoption of this model without any actual evidence.

As if someone is keeping the right design in their back pocket just in case. Too powerful to use, or something. It was just waiting for the right moment to be used by the right person.

I guess it's just gumption, or whatever.

 

If hearsay is the standard by which Prof Kell rates clinical evidence, I’m afraid that there is reason to be doubtful about his research.

https://twitter.com/user/status/1645705461876883463

 

Oh no, he's bringing back memories from my juicing days in the mid 90's.

I'd estimate I drank at least a few gallons. CBT- Celery Behavioral Trials

 

oh for crying out loud. Is this seriously a researcher saing this? i mean ??????? things like this just make me despair

 

With friends like these…

One of the reasons BPS figures can convince others to dismiss us so readily, in my estimation, is through highlighting posts like this. It makes those looking into potential organicity, and by extension us, seem wholly devoid of repute.

 

Nah, I've eaten kale and vegetables still exist.

All eating kale does is make me not want to eat kale.

Of course there is nice'er kale, but as a matter of policy, it seems that in the UK this is unavailable, having been replaced by chopped up bits of wood.

 

I did a quick internet search, and did not verify anything, but came up with a list of potential negative side effects from over consumption of celery and some situations where celery overconsumption is potentially counter indicated such as during pregnancy or for people with IBS.

Some of the potential issues related to over consumption of dietary fibre and potential malnutrition because of celery’s low calorie content, both of which might not be such an issue with celery juice, but still throw away remarks that might lead to some people believing celery will cure their Long Covid and behave very stupidly reflects how foolish people making such remarks are. You can not manage the stupidity of people reading your tweets.

 

Cognitive impacts from mild COVID infection ...
https://twitter.com/user/status/1645200506518740993

 

I'm not sure if you could get me to drink celery juice, even if it was the cure to ME lol.

 

The invisibility of Long Covid has an even longer history
“We need to take a look back in history to tackle prejudice towards Long Covid today”, argues Long Covid patient Rebecca Siddall

It turns out that for centuries, patients have survived epidemics only to have their lives changed by the seemingly endless nature of their symptoms. In the late 1800s, doctors noted ‘altered cognition’ (what we might now call ‘brain fog’, a common symptom of Long Covid) in survivors of the 1889 and 1892 Russian flu pandemics. Similarly, smallpox and polio are now known to cause long-lasting conditions in the months, years, and decades following initial infection. Recently, the scale of post-polio syndrome has become clear – thirty years after infection, up to 85% of survivors, including those who had a relatively mild original case, may develop muscle weakness and pain. Long Covid is far from the first post-viral condition to emerge en masse in the wake of a pandemic.

The marks of epidemic-triggered post-viral conditions can be seen throughout history; but these patients are often forgotten as soon as the acute phase is over. Even the 1918 ‘Spanish Flu’ pandemic, to which COVID-19 is most often compared in the media, provoked post-viral conditions in survivors. Historian Laura Spinney describes the scale of the issue as significantly impacting economies, just as Long Covid has begun to do today: in Tanzania, ‘Long Flu’ triggered “the worst famine in a century” as fatigue prevented workers from planting the fields. The ‘Spanish Flu’ infected one in three people on Earth, and left up to 100 million dead – and yet was largely written out of collective memory, along with those who suffered from ‘Long Flu’.

Long Covid patients have had to combat a wave of misinformation and prejudice in order to access medical care. This is far from unique: Chronic Fatigue Syndrome (also known as ME, another prevalent post-viral condition) was widely dismissed as hypochondria or a psychological problem until the late 1990s. I hope that there is a chance now for history to stop repeating itself: by sharing our symptoms, knowledge and stories, Long Covid patients can challenge the common tendency to dismiss our experiences.

https://www.varsity.co.uk/science/25380

 

judging by the replies to that post, his suggestion was not very well received.
I was amazed to see he didn't know what FODMAPs are, nor apparently was he aware of the high oxalates in celery juice, and the potential effect on kidneys.

 

According to Kell, it’s available as a powder so you could just do a couple of healthy lines.

 

Blood-thinning medications (anticoagulants and antiplatelets): Celery seed contains chemicals that may thin the blood. This could make the effects of blood thinners stronger and raise the risk of bleeding. Blood thinners include aspirin, warfarin (Coumadin), and clopidogrel (Plavix).

Not so good if his followers are taking other blood thinners #teamclots followers.

 

S4ME thread: https://www.s4me.info/threads/selec...rrelation-findings-2022-de-paula-et-al.28390/

 

https://twitter.com/user/status/1646271970449952769