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

Looks like the theme of the day. When you affect the money-making machine alarms start to go off.


Long COVID patients and doctors detail the growing 'mass disabling event' in America
https://finance.yahoo.com/news/long-covid-patients-doctors-america-172004184.html

“We’ve had [pandemics] before but never to the point where it’s been an absolute public health crisis where 10 to 20 million people in the United States are going to be suffering from this for months and years,” Ely said. “It’s something that our medical community and society at large really were not prepared to handle, this issue of long COVID.”​

It turns out that not preparing, indeed, leaves you unprepared. Surely no one could have foreseen that. Even when you have decades to prepare, the not preparing part leaves you unprepared. Now why is no one pointing out that this has been a deliberate failure? That there had been decades to deal with this and it was refused with extreme prejudice.

There's only muted reference to this having existed before. The truth is still taboo, unspeakable.

 

https://twitter.com/user/status/1469004994871500801

 

This is from 17th November, but I don't think it has been shared yet

IDEAS.TED.COM I was a healthy 38-year-old... but now I have long COVID by Margot Gage Witvliet PhD

quotes:

People with chronic diseases have reported the same pattern of not being believed. I knew these alarming statistics before I got sick, but as a health researcher with the knowledge I needed to advocate for myself, I didn’t think I would get the same treatment I had read about.

...

I am not alone in feeling that long COVID is a profoundly hellish experience. Reports highlight that some people with long COVID have been dying by suicide because of their pain. It is possible COVID is neurotoxic, causing changes to the normal operation of the body’s nervous system, which might explain why many people like me have painful neurological problems. Almost all people with long COVID are experiencing symptoms similar to mononucleosis and myalgic encephalomyelitis/chronic fatigue syndrome.

 

" I didn’t think I would get the same treatment I had read about." This from members of the medical profession is the reason for the same profession excepting the its all in your head answer to every disease they do not have a thorough understanding of . For some strange reason they think the systems they help put in place will never effect them .

 

Worrying article about children and long Covid from Association of American Medical Colleges.

AAMC 'Scary and confusing': When kids suffer from long COVID-19

“It’s incredible to me the number of really high-functioning kids who are completely disabled for a period,” says Alicia Johnston, MD, co-director of the Multidisciplinary Post-COVID Program at Boston Children’s Hospital, which has treated over 100 youngsters since launching in March 2021. “The recovery is a long and arduous journey for many kids.”

...

When it comes to physical therapy for long COVID-19, Johnston recommends using providers who understand post-viral syndromes that sometimes strike after a condition like mononucleosis. “It’s important to design a graduated program to address what can be incredible deconditioning for these kids, or they risk injury,” she notes. Sometimes, that may mean just walking to the mailbox until doing so can be tolerated without exhaustion before moving up to the next level of effort.

...

Looking ahead, Yonts also hopes to help bolster care by improving providers’ understanding of long COVID-19. Together with the National Institutes of Health, researchers at Children’s National will track up to 1,000 patients age 21 and younger who tested positive for the coronavirus to monitor their physical and mental health for three years and compare them to uninfected household contacts.

 

Does anyone know of good resources to help a mother whose child has recently been diagnosed with Long Covid in the UK?

 

They might know of this already, but here's the website to Long Covid Kids
https://www.longcovidkids.org

 

Many thanks @Kalliope I will pass that on. I like their 'Cautious Tortoise' recovery programme.

 

https://twitter.com/user/status/1468708993904168960

 

It's been almost 2 years, exactly how long do people "wait for a picture" here. There's zero urgency and the efforts deployed so far are mostly pathetic. The WHO is doing the same thing as the NIH: all talk no action. They are fully paralyzed because of the conflict ending the psychologization of chronic illness represents, a true ideological block.

Complacency has already cost lives, not acknowledging that is insulting to the lives lost. And it's not that this "could" happen, it has been happening for nearly 2 years.
https://twitter.com/user/status/1468609573925892103

 

This is mostly about a letter written by some NHS doctors saying they were failed, the health care system did not protect them from Long Covid. It doesn't place the proper context that this was all avoidable and predicted, health care managers acting surprised by this has long run out of credibility.


Long Covid among staff adding to healthcare pressures, say NHS leaders
https://www.independent.co.uk/news/health/long-covid-nhs-staff-latest-omicron-b1973157.html

Some 40,000, 3.26 per cent, of healthcare workers in the UK are estimated to have long Covid, according to the Office for National Statistics. This figure has risen by 5,000 since July.

Many will be unable to work, though others are continuing to work despite their debilitating symptoms, experts say.

...

Dr Shaun Qureshi, a palliative medicine physician in Scotland, said he has been off sick from work for over a year due to long Covid. He is one of 58 doctors with the condition who have written a letter to the prime minister warning that NHS staff are still “not adequately protected”.

“We strongly feel the government must answer why we were treated as if we are expendable,” he said. “The number of people with long Covid are accumulating. It's an epidemic within a pandemic. Yet not a lot of acknowledgement.”

Dr Qureshi said that many of the signatories of the letter are unable to work, while others have lost their jobs. He said he had suffered damage to his autonomic nervous system and now has to take medication to slow his heart rate.

“I also have problems concentrating, with short term memory,” he added. “I was previously high functioning but now doing any mental task is extremely taxing.”

...

Greater Manchester mayor Andy Burnham said on Thursday that healthcare workers shortages in the region are being made worse by the region’s high prevalence of long Covid.

Some 11 per cent of NHS staff in the area have the condition, he said. “That is presenting challenges to frontline staffing.”

The NHS continues to report a high overall sickness absence rate in England, at 4.6 per cent for June. This was up from 4.3 per cent in May and 4 per cent in June.

Anxiety, stress, depression and other psychiatric illnesses is consistently the most reported reason for sickness absence, accounting for over 502,000 full-time equivalent days lost in June.​

So it seems that they also automatically tack on the psychosocial labels to themselves. Talk about shooting yourself in the foot, then salting it for good measure.

 

To be honest, at least in the Hungarian LC groups I see many people who say anxiety and depression are part of their LC symptoms. However, they tend to say this has a biological basis (maybe neuropsychiatry is the right word here?) and is a direct biological result of their covid infection, somehow covid affecting their brain in an odd way, as opposed to actual psychological problems.

On the other hand, there are also tons of long haulers who reject any such label.

(Edit: I have no idea how many of them have anxiety and how many of them maybe just accepted that explanation for POTS for example. This always makes me wonder.)

 

GP could not ‘lift phone to make a call’ due to Covid illness
https://www.independent.ie/irish-ne...ake-a-call-due-to-covid-illness-41124661.html

“Finally went back to work at the end of August, and in September, the fifth day back, I could not get out of bed.

“When I went in, my practice partner Dr Bernard Healy said, ‘look Adrian, you should be in hospital’.

“I said ‘No, I’m just tired, post-viral’. I tried to come back the following week, but I had to go home and he said just take a month out – I saw a consultant who said it was post-viral fatigue, but over the following month I was getting worse and worse, to the stage where I physically couldn’t lift my phone and make a phone call, the fatigue was so profound.​

That GP doesn't seem to have gotten the lesson that this is what this so-called "post-viral fatigue" actually is in many cases.

 

Sounds as if maybe he should have retired from GP a while ago - and concentrate on being medical officer to the Turf Club?

The medical material here is so scattershot and incoherent I don't think one can draw any useful conclusions.

 

Here's the original article from the Medical Independent.

A lot of it is very similar until towards the end when he starts talking about cardiac MRIs and post viral fatigue/postviral syndrome

https://www.medicalindependent.ie/gp-i-physically-couldnt-lift-my-phone-and-make-a-phone-call/

---

 

Edit: on the CDC website: https://www.cdc.gov/me-cfs/programs/meetings.html#anchor_1635465043868

 

The NIH has published a funding announcement for more of the $1.15B initiative. It's tracked at https://recovercovid.org/funding.

Notice of Special Interest (NOSI): Availability of Administrative Supplements for Research on Pathobiological Mechanisms of Post-Acute Sequelae of SARS-CoV-2 Infection
https://grants.nih.gov/grants/guide/notice-files/NOT-OD-22-038.html

This Notice of Special Interest (NOSI) is being issued to encourage investigators with expertise and insights germane to post-acute sequelae of SARS-CoV-2 infection (PASC) pathobiology to apply for supplemental funding that would enable them to leverage current awards to rapidly advance understanding of the pathobiological underpinnings of PASC, including the pathogenic mechanisms responsible for persistent symptoms after acute infection and/or pathology in multiple organ/systems that has, or will, lead to clinically significant health problems.​

 

"

NICHD News
@NICHD_NIH
Learn about the CLOCK consortium, which seeks to understand long-term outcomes of COVID-19 in children & adolescents. The research is part of NIH’s RECOVER Initiative. Learn more: https://bit.ly/3EyQUT0. #NICHDimpact"

hope it's a coincidence that they've picked the same name as the Clock study(?)
https://www.s4me.info/threads/non-h...lock-study-2021-stephenson-and-crawley.19061/

 

In the file of "misguided good intentions".


Promotion of non-evidence-based therapeutics within patient-led Long COVID support groups
https://www.nature.com/articles/s41591-021-01589-y

Long COVID support groups play an essential role in advocacy, patient support and research development. However, patient-led support groups are vulnerable to people joining the group who then use their access to promote experimental, unproven or ineffective therapeutics and treatments. The combination of potential adverse effects and the often false hope offered by these non-evidence-based therapeutics can be damaging to patient health and wellbeing. The promotion of these therapeutics also suggests that there are existing treatment options for Long COVID patients, diminishing the ability of groups to advocate for new Long COVID research that may lead to actual evidence-based therapeutics.​

The idea that sick people who have been facing life-ruining illness for an extended period of time should just shut up and wait is absurd. It's been almost two years. This is a sound argument when the context isn't considered, with the context it's beyond naïve. Mostly because there simply is no help in the meanwhile and time is the biggest factor, while medicine is completely paralyzed and hasn't budged one bit so far. Denial remains the norm.

But more importantly, I almost never see any discussions over those drugs in most patient communities. They were discussed for a while, now they barely get the odd mention. Meanwhile there is a constant stream of outrage at physicians denying the illness and giving harmful advice that harmed many. So most of the harmful pseudoscience is coming from health care, not the patient communities. If anything, most of the discussions I see are far more substantial than what physicians are discussing among themselves, but that's just because they don't take it seriously so of course they aren't discussing anything of substance.

This is a textbook case of "clean your own house before you start giving house-cleaning advice". Medicine currently has a huge problem with misinformation being spoken recklessly, is pushing a lot of pseudoscience all on its own and so it is poorly place to speak out against it, when it is the main purveyor in this context. Especially with a starting point of "something like Long Covid cannot possibly exist and this discussion is final". Gonna have to eat a lot of crow to regain credibility here.