Long Covid in the media and social media 2022

Status
Not open for further replies.
Healthwatch
What people told us about Long Covid

Report – 30 May 2022
Following the emergence of the COVID-19 virus, a new condition known as Long Covid has emerged. Find out what people told us about their experiences of getting treatment for this new condition.
We looked at a sample of 122 people’s experiences, shared with us between September 2020 and March 2022, to explore what it is like for people seeking help with symptoms of Long Covid. Ten local Healthwatch also conducted dedicated research into this condition which contributed to the following findings.

Key findings:
  • GPs are unsure of the symptoms of Long Covid – people often felt that their GP did not understand Long Covid. We also heard that many felt their GPs dismissed their symptoms and their experiences were not listened to, making it difficult to access help and support.
  • GPs are unaware of what support is on offer or how to access it – even if GPs acknowledged symptoms, they were not always clear what support for Long Covid was available. Some people told us that it felt like their GP simply didn’t know what to do with them. Some GPs were unaware of the existence of Long Covid clinics. We also heard that GPs did not know how to refer people to a Long Covid clinic.
  • People have mixed experiences of Long Covid support – we heard that people are waiting months for appointments at Long Covid clinics. People’s opinions are mixed, with some people finding the clinics not very helpful and others who said they helped them cope with their symptoms.
  • Long Covid can affect every aspect of life, but patients are not being offered holistic support - when people could access support, it mainly focused on physical symptoms, despite Long Covid also affecting people’s mental health and cognitive abilities.
  • Some people struggled to access support more than others – people with pre-existing conditions told us that doctors often didn’t consider how conditions such as MS and chronic fatigue syndrome affected Long Covid. We also heard from many older women who felt that doctors used their age to dismiss their concerns
As a result of these issues, people are often left to manage their symptoms themselves and may be unsure of what support is available.

What does this tell us?
The stories shared with us so far suggest that the goals outlined in NHS England’s Long Covid plan 2021/22 are not yet being achieved for everyone with Long Covid.

The plan aligns with the concerns which were shared with us, and emphasises the importance of continuous, holistic care and enhancing support for GP services.

But what we have heard indicates that the policy is not being implemented consistently, leading to failures to provide adequate support for patients with Long Covid.
Click to expand...
https://www.healthwatch.co.uk/report/2022-05-30/what-people-told-us-about-long-covid
 
Here is what the Canadian Physiotherapy Association promoted about PESE in people with Long Covid:

Many of the symptoms experienced by those living with Long COVID are very similar to those of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). The World Health Organization recommends that Long COVID rehabilitation should include educating people about resuming everyday activities conservatively, at an appropriate pace that is safe and manageable for energy levels within the limits of current symptoms, and exertion should not be pushed to the point of fatigue or symptom exacerbation.
Click to expand...

https://world.physio/sites/default/...1-InfoSheet3-Fatigue-and-PESE-Final-A4-v1.pdf
 

Attachments

  • upload_2022-5-30_16-31-25.png
    upload_2022-5-30_16-31-25.png
    747.4 KB · Views: 4
Beloved Principal Who Fought DeSantis Over In-Person Learning Dies of Long COVID

https://news.yahoo.com/beloved-principal-fought-desantis-over-215024685.html
In July 2020, after a second employee who worked at Florida principal Jimbo Jackson’s school died of COVID, he fought back against Gov. Ron DeSantis’ push to reopen schools for in-person classes.

Jackson, who was the head of Fort Braden School and a Leon County commissioner, had also just recently tested positive for COVID himself.

Now, nearly two years later, Jackson has died after suffering complications from long COVID, according to the Tallahassee Democrat. He was 55.
Click to expand...

Edit - found a slightly longer article about Jim Jackson which uses the term "long-term COVID" so I'm not sure now what his diagnosis was:

https://www.tallahassee.com/story/n...-principal-jimbo-jackson-has-died/9976263002/
 
Potentially significant. The chairman/big boss of the Los Angeles Times, a multibillionaire physician, seems rather alarmed about Long Covid. He has the kind of media influence, the LAT is a huge publishing network, to affect public perception.

In the end it's all about who gets sick, who they know, who they are, how they can influence things. It's always the case so I doubt there isn't some personal connection here. There needs to be, ugh... influencers, who change public perception away from the constant minimization coming out of medical and public health institutions.

Medical research and healthcare are basically a popularity contest at times. What a disaster. TikTok could literally have more direct impact than the main medical institutions in the world, who have so far chosen to simply do nothing and ignore the whole issue.

Click to expand...


Moderator note - because the interview deals at some length with LC we are allowing it, but members are reminded of the 'no politics' rule and other issues raised are outside the scope of this forum and not to be discussed.
 
Last edited by a moderator:
Two million people in UK living with long Covid, find studies
Nicola Davis Science correspondent
Wed 1 Jun 2022 16.19 BST
https://www.theguardian.com/world/2...ople-in-uk-living-with-long-covid-say-studies
Figures from the Office for National Statistics (ONS) reveal that as of 1 May this year, 2 million people living in private households in the UK – or 3.1% of the population – reported they were still experiencing Covid symptoms more than four weeks after their first suspected coronavirus infection.

About two in five of those with long Covid, or 826,000 people, noted that infection was at least a year ago while one in five, or 376,000 people, said it was at least two years ago. In addition, 71% of those with long Covid said their symptoms had a negative impact on their day-to-day activities, with 20% saying their ability to undertake such activities had been “limited a lot”.

The latest figure is a 10% rise on the number of people with long Covid reported last month, and is almost twice as high as the figure reported as of 2 May last year when just over 1 million people self-reported having long Covid.
Click to expand...
Includes comment from Dr David Strain, Layla Moran and Professor Danny Altmann.

Edit: further discussion here.
 
Last edited:
ME/CFS Skeptic said:
Disappointed that Dr. Khan is promoting his personal discount code for a questionable medical test.
Click to expand...

If I understood correctly, this is a promotion for a) a microbiome test, b) an alleged treatment for LC and many other conditions and also c) a study[*] you can participate in if you paid for the test and the treatment.

https://biomesight.com/blog?category=research

Thanks for highlighting @ME/CFS Skeptic and thanks to the few (too few so far) people on Twitter asking critical questions:

Click to expand...


Click to expand...


[*] Couldn't find a reference to a study protocol on their website, only 'updates' on how successful they think their results are already (study still going on).
 
Last edited:
From the website providing the microbiome test (post above) :

"I am excited to provide the first update on our Long-term COVID-19 study. Firstly, a big thank you to all participants and the long COVID communities for supporting this study and thereby enabling what I believe to be the current largest gut microbiome study on long COVID."

"I should state that these findings have NOT yet been peer reviewed and our study and analysis process is evolving and ongoing. So please consider these draft findings."
 
You can't blame patients for trying quack treatments for Long Covid when mainstream medicine is also offering quackery. In particular, they are still assuming that 'rehabilitation' is useful:

Long COVID remains a mystery. We followed one patient's struggle to get treatment.

Buck told Hinda, “I believe you have long COVID. There is no cure, no treatments, but we’re going to do what we can for you.” He enrolled Hinda in physical and occupational therapy, which she continued for six and four months, respectively.

The first physical therapist didn’t work out. The second one looked up long COVID and other post-viral syndromes and adjusted the length and difficulty of the exercises. “I went from walking short distances and dribbling a ball, to walking longer distances, lifting light, small weights, and then rowing.” After six months she had enough strength to run on a treadmill, though only for five minutes.

Many of the occupational therapies were the same as for stroke victims: card games, mind games, word puzzles, and other brain therapies. “My brain just did not function well,” Hinda said. “I had this brain fog where I couldn’t remember my middle name, I had paranoia, I had these mental blocks where I couldn’t remember who I spoke to that day.”
Click to expand...

Patel focused on Hinda’s diet, potential allergies, and vitamin levels. She put her on IFM’s ReNew diet, which the Center for Functional Medicine describes as “a nutritional pathway to health for those who have autoimmune, gastrointestinal, neurological, and other chronic health conditions.”

The diet, which consists of meat, vegetables, low-glycemic fruits and healthy fats, removes foods that can trigger metabolic dysfunction and reduces intake of all sweeteners and processed foods.

Patel also prescribed a range of supplements: GI-Revive, for gut healing and heartburn; magnesium glycinate for stress, sleep, and energy; a multivitamin; omega-3 fish oil; Quercetin, an antioxidant and anti-inflammatory, and a probiotic.
Click to expand...

There's a mention of ME/CFS at least:

It took Hinda months to get that diagnosis. “The first doctor I saw dismissed me and said I had anxiety,” she told me. Many women have experienced the same treatment, I said, not just with long COVID but with many other chronic virus-related conditions, such as chronic fatigue syndrome or lethargy following infection with Epstein-Barr. In the not-too-distant past, they got a diagnosis of “hysteria.”
Click to expand...
 
Last edited:
rvallee said:
The Forever Disease: How Covid-19 Became a Chronic Condition
https://newrepublic.com/article/161102/covid-19-long-haulers-chronic-disease-health-care
(Paywalled but it says I can read 3 free articles per month)

Long-form article so mostly skimmed. Not bad overall, mostly on the overlap with ME and how denial left us with nothing to work with here.
Click to expand...
I put the link into Twitter and lots of results came up for the start of February, 2021. Is it definitely new? Don’t want to use up my free articles.
 
Status
Not open for further replies.
Back
Top Bottom