Long Covid in the media and social media 2023

With the headline I expected the usual bad but this is a pretty good article from an MD with Long Covid.

Are We Ready for the Long COVID Long-Haul?
— The COVID public health emergency may be over, but this condition isn't going away
https://www.medpagetoday.com/opinion/second-opinions/104481

Why are so many people failing to consider that their new forgetfulness, persistent cough, unexplained anxiety and depression, or their crushing fatigue after engaging in normal exercise might be related to their case of COVID-19? Why are people not taking the risk of long COVID seriously? And perhaps the most important question for us as medical professionals: Are we ready to care for millions suffering from long COVID for the long haul?

Early on in the pandemic, those of us who developed long COVID had no idea what was happening. We had luckily survived the initial viral infection, some mostly asymptomatic like myself and others recovered from mild to severe illness, but then we suddenly found ourselves struggling with various symptoms and unable to function normally. There was no formal diagnosis for the condition; in fact, the term "long COVID" was initially created by the people experiencing it, many of whom were feeling dismissed by the medical community and found each other online. We were called long haulers.

Over the next couple years, researchers and medical professionals also embraced the term, and it became clear that a particular set of symptoms of long COVID met criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Many with long COVID will recover, but some have had years of symptoms, some have become disabled from severe ME/CFS, and others have experienced other symptoms and conditions, such as postural orthostatic tachycardia syndrome and mast cell activation syndrome. Since mid-2020, there has been an estimated cumulative increase of 1.7 million Americans of working age who have reported a disability, and one study found that about 26% of those with long COVID, or about 4 million people, have altered their employment status or working hours.
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https://twitter.com/user/status/1658908078614487053


(Visible app is a mobile app health tracker for chronic illness, created by long haulers but applicable for ME as well. Thread here.).

 

Opinion article in today’s Times on Long Covid and ME by Sean O’Neal:

“Research into long Covid is crucial to get people working again”
https://www.thetimes.co.uk/article/...crucial-to-get-people-working-again-v98k82jdg

Sean on Twitter:

Screenshots of full article for those who can’t get past the paywall:

For anyone who is not aware, Sean is a Times journalist. His daughter Maeve had ME for many years and died aged 27 in 2021:

 

Hope this Token works:

https://www.thetimes.co.uk/article/...7?shareToken=6482011779dc1135989a6d20c292f7b7

 

Thread

Equally relevant to ME/CFS which does get a mention

 

Student gives up dream of becoming a doctor after contracting Long Covid
Dylan had been offered a place at medical school before he fell ill

https://www.walesonline.co.uk/news/uk-news/student-gives-up-dream-becoming-26946144

 

National Geographic An overdose drug shows promise for long COVID patients

quote:
For decades, low-dose naltrexone, or LDN, has been used to treat a number of chronic conditions, including autoimmune disorders such as multiple sclerosis and Crohn’s disease, post-infectious conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and disorders that cause chronic pain, such as fibromyalgia. Now, as millions of people are suffering from long COVID, LDN is one of the very few treatments that can relieve their symptoms.

 

No, not really.
for some reason I have access to the full article. Here are some more quotes:

“It is a remarkable drug,” said David Kaufman, a physician and founder of the Center for Complex Diseases in Mountain View, California, who has been prescribing LDN to patients since the 80’s, when it was originally used as a last-resort treatment for people with HIV. “I have a feeling we’ve only scratched the surface of what this drug can do.”

...

“Chronic inflammation is always bad,” said Jarred Younger, a neuroscientist at the University of Alabama Birmingham, whose research focuses on low-dose naltrexone. “Inflammation tends to spread, and it tends to migrate, and it tends to cause other inflammation.” As Younger notes, the advantage of low-dose naltrexone, compared to other anti-inflammatories, is that it can enter the brain in large enough quantities to have an effect.

For conditions such as ME/CFS, which is often triggered by a viral illness, and has many symptoms that overlap with long COVID, studies suggest inflammation in the brain is an issue. “That’s probably what’s causing the symptoms” such as brain fog and fatigue in long COVID patients, Younger said.

...

The drawback is that most research on the effectiveness of LDN is in the form of retrospective studies, which analyzes the benefits to patients who have taken the medication, rather than in the form of randomized, controlled trials, where the effectiveness of low-dose naltrexone is compared against a placebo. The lack of randomized controlled trials makes it hard to parse out what the effect of the medication was, versus what may have been from another factor.

 

Not bothering to find the article, doubtful it's any more substantial than this. But... tiredness, fatigue, so mysterious. So misleading. Must be a huge coincidence with this massive rise in chronic illness and disabled. Fortunately, this is just tiredness, not illness. Or whatever. Clearly must be all that hunching over a laptop at home, which no one has ever done at work. Ever.

Yes, it sure is bad that we don't know much about... "fatigue". If only we did know things.

 

Teen who thought she was suffering from LC diagnosed with dementia aged 19.

https://metro.co.uk/2023/05/19/teen...d-was-diagnosed-with-dementia-at-19-18812571/

 

I would have thought that antidepressants would have increased her memory problems, not helped to solve them.

Nobody thought that the girl's problems could have been brain damage from the accident she had? Do doctors normally test electrical activity in the brain of people who've had car crashes? I bet they don't.

 

I think it might depend on what class of antidepressants? My understanding is that some are neuroprotective.

 

Very disappointing quotes from Leonard Jason.

A cardiologist wanted to prevent long COVID. He turned to meditation.
A recent review of research suggests meditation may be effective for some in treating long COVID and other post-viral conditions.

https://whyy.org/segments/a-cardiologist-wanted-to-prevent-long-covid-he-turned-to-meditation/

https://www.s4me.info/threads/mindf...roimmune-functioning-2022-porter-jason.30373/

 

Response to Sean’s article from consultant liaison psychiatrist Dr Catherine Symonds…

 

From the BBC:

 

I could come up with a few suggestions as to why this is.

1) In England (I'm not familiar with events in other parts of the UK) I think an alarming number of surgeries have sprung up as for-profit private businesses.

https://www.theguardian.com/society...hour-to-see-private-gps-amid-nhs-frustrations

People who can't afford to pay for private treatment will just stay sick.

2) The relentless growth of diagnosing patients with FND diagnoses rather than actually investigating and treating the patient properly means fewer and fewer people are getting effective treatment for their physical ailments.

3) Gynaecological problems (a female only problem), such as endometriosis, adenomyosis, and PCOS are more and more being polluted by the rise of FND. And they weren't taken seriously even before the rise of FND and MUS.

4) Earlier this month patients with hypothyroidism ( a problem with approximately eight or nine times more female patients than male patients) got accused of somatization (based on a questionnaire) in this new paper :

https://pubmed.ncbi.nlm.nih.gov/37134204/

5) FM and ME (majority female) are not taken seriously by many doctors.

6) Long Covid patients (again, majority female) are being steered towards the mental health dustbin.

https://www.theguardian.com/society/2022/feb/03/long-covid-fight-recognition-gaslighting-pandemic

7) MUS - also suffered by more females than men. And when men suffer health problems normally associated with women they have a hard time getting taken seriously as well.

The medical profession has given itself permission to ignore more and more medical conditions, so they can dump more and more patients into dustbins labelled FND, MUS, Mental Health, and they want to treat more and more patients with anti-depressants.

I read a large thyroid forum. Whenever the subject of flagging patients' medical records comes up there are many anecdotes of members being ignored and gaslighted rather than them being taken seriously. When a patient's records get flagged it is a life sentence because no health discoveries (about the patient's health) in the future are ever taken as evidence that the flagging was wrong.

There are loads of reasons why patients are left to rot, and the list of reasons seems to be getting longer with every passing month.

 

how does one know if one's records are flagged?

 

I think most people just guess based on the level of rudeness/dismissal/rolling eyes they get. I can't remember the number of times I've given my identifying details to a receptionist or nurse in a GP surgery or a hospital, they've looked me up on their computer, and then they look up at me and scowl.

I thought I might have broken my arm in a fall about five years ago and went to A&E and wanted to have an x-ray. I got a scowl from the receptionist that time when I gave my details. Then when I was called into triage, before I'd said a single word, the nurse there gave me a big smirk and called out in a sing-song voice as I reached the threshold "I can't give you any pain killers." (I hadn't asked for any.) I turned so that she could see the big lump on my arm, and then, still smirking and still with the sing-song voice she said "Oh, it's a haematoma." I did get the x-ray which showed no breaks. I was given a sling before I left, and I'm sure it was one intended for a child (just to make me look ridiculous ?) because my hand was so far up with this sling that it was behind my ear. I took the sling off as soon as I left the building.

There is a letter in my GP records from the surgeon who did my hysterectomy saying they had found "very severe endometriosis". The NHS never treated the pain I had with that endometriosis, and I pleaded for help many times over 25 years. I think I might have got flagged every time I asked. And I think I was flagged for the first time in my teens. I'm in my 60s now, and I'm still tarred with the drug-seeker brush even now.