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

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The passive voice here is weird and bad and way too common. Patients aren't struggling to access, there simply is nothing to access, nothing competent anyway. Especially "support" clinics. Long haulers don't need generic "support", a shoulder to cry or, or just be listened to, the entire point of "being listened to" is with the direct expectation that actions will be taken.

Without actions it's like a broken machine, it's not the idea of a machine that functions that is useful, it's the function the machine does that is useful. And when the machine refuses to do its job then it is broken, it is not a fault of the user (although to be fair it often is but not here).


‘Only a fraction’ of long Covid sufferers able to access NHS support clinics
https://www.independent.co.uk/news/health/long-covid-nhs-clinic-support-treatment-b1917924.html

This is literally backwards:
Exclusive: Patients denied care by some support centres, while others have reported never receiving a physical assessment under the overwhelmed service
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Medical services are denying services to patients, not the other way around. This is not a patient issue, it's a health care issue, a supply issue. There are people making bad decisions, none of this is happening naturally like rain or the tides, it's 100% within the control of people who make those choices in large part because of the BPS nonsense.
 
I think it's safe to say at this point that those were nothing but cheap words. He said the same thing over a year ago. As the director of the NIH institute best equipped to deal with his issue, repeating the same cheap words and doing nothing is just as bad as saying nothing. He is talking about looking back in 6 months, which he said last year. We're 18+ months in and his needle is stuck in the same loop.

At what point do people, say journalists, start asking questions about the complete lack of action by the only people in a position to do so? This is basically the equivalent of "thoughts and prayers", it lands especially poorly coming from the only people who can do something. And the total silence over the $1.15B, having now reached 6 months after being signed. Accountability doesn't happen by magic, if no one holds medical and public health institutions they sure as hell won't do it themselves, they clearly can literally say the same thing for months, probably years, and no one bats an eye. No wonder progress is so rare and expensive.

 
This article is a big mess that doesn't explicitly fall in the psychologization but mostly accomplishes the same. "Post-illness"? What?


Post-illness symptoms like long Covid are probably more common than we think
https://www.theguardian.com/commentisfree/2021/sep/12/long-covid-post-illnes-symptoms-common


This is completely false, we have been screaming and ignored and continue to be, no one but us has "realized" that, LC is the clearest evidence of that:

In recent years, doctors and researchers have increasingly realized that many of those who survive an illness of any kind, or who go through serious physical trauma, are at high risk for a range of debilitating and chronic physical, cognitive and mental health symptoms – problems that closely resemble long Covid.​

When you try to help but actually don't:

But in many cases, survival does not mean complete recovery: some patients find that their bodies, brains and psyches continue to bear the scars of what they have gone through. One non-Covid study found that a year after hospitalization, a third of patients with severe respiratory failure or shock had significant cognitive impairment. Another found that between a quarter and a third of patients who were treated in the ICU had significant and long-lasting symptoms of anxiety, depression or PTSD. Researchers have found similar results for survivors of other medical conditions, including cancer, multiple sclerosis and ALS.​

They don't pay less attention, they pay no attention whatsoever and instead obsess over irrelevant nonsense:

Unfortunately, people with long Covid, as well as other chronic post-illness symptoms, often find that the medical establishment doesn’t understand their experience, and so minimizes or questions it. This is not surprising: clinicians tend to pay less attention to how patients with severe illness do once they are out of mortal danger, or once symptoms extend beyond an arbitrary time frame.​

We're already doing that, buddy, what exactly do you think we're doing if not that?!

So what can we do to help these people with long Covid, or long versions of other conditions? One key is self-management. Patients with chronic post-illness problems can learn to cope effectively with many symptoms related to their condition, making decisions, tailoring their activities and forming effective relationships with clinicians. Through self-management, patients become active agents in the oversight of their condition.​

Trying to help but actually not helping at all, instead mostly pushing the very problem and misrepresenting reality. Same old cycle of failure, well-paved with good intentions but leading to the same hell.
 
Guardian article said:
So what can we do to help these people with long Covid, or long versions of other conditions? One key is self-management. Patients with chronic post-illness problems can learn to cope effectively with many symptoms related to their condition, making decisions, tailoring their activities and forming effective relationships with clinicians. Through self-management, patients become active agents in the oversight of their condition.
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'Oversight' is quite a troublesome word in English, with two quite different meanings.
Screen Shot 2021-09-13 at 10.15.18 AM.png

In this article, they obviously meant that patients can become active agents in the management of their condition, but the other meaning is more accurate. By promoting the idea that patients can just manage their condition themselves, patients do become active agents in the 'overlooking' of Long Covid, just quietly restricting their life down to the level their energy allows and becoming invisible.
 
Hutan said:
'Oversight' is quite a troublesome word in English, with two quite different meanings.
View attachment 15055

In this article, they obviously meant that patients can become active agents in the management of their condition, but the other meaning is more accurate. By promoting the idea that patients can just manage their condition themselves, patients do become active agents in the 'overlooking' of Long Covid, just quietly restricting their life down to the level their energy allows and becoming invisible.
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Also notable that oversight is made of two part: sight and, more importantly here in this case, over.

One person cannot "oversee" themselves, unless they are capable of astral projection, and even then the entire point is of someone else with a different perspective so it would have to be more of a mix of astral projection and multiple personalities. Such a muddle of concepts that mean nothing whatsoever in real life.
 
Looks like a big report but frankly I rarely read those articles anymore, they never add anything we didn't know on day 1 and since nothing useful is happening, obviously there is nothing useful to report.

Someone might want to, I don't know, look into why nothing useful is happening yet? All this fluff about "doctors striving to understand" is a whole lot of embellishment for what amounts to very little genuine efforts for which only a very few understand why things are completely stuck.

 
Changing close contact rules for children risks complications of Long Covid, says expert

[..]

"Young adults are getting Long Covid - you can have mild symptoms, you can be 16-years-old, and you can have 15 months of chronic fatigue syndrome and all sorts of neurological problems as part of Long Covid," Dr Lambert told Newstalk.

https://www.echolive.ie/nationalnews/arid-40696898.html
 
Fatigue and post-exertional symptom exacerbation in Covid
Fatigue is a feeling of extreme exhaustion. One feels over tired, low level of energy and extreme urge to sleep. It is the most common symptom of long Covid. It is easily relieved by rest or sleep. It is not the result of usually difficult activity. It can limit functioning in day to day activities. It negatively impacts the quality of life.
Now talking about post-exertional symptom exacerbation (PESE), it is a disabling and often delayed exhaustion disproportionate to the effort made. It is something described as crash.
The activity that can trigger this worsening of symptoms can be something that was easily tolerated before such as a daily activity e.g., a shower, a social activity, walking, reading, writing or working at a desk, an emotionally charged conversation, being in a sensory environment e.g., loud music or flashing lights.
Many of the symptoms experienced by those living with long Covid are very similar to those of myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
According to WHO, 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 limit of current symptoms and exertion should not be pushed to the point of fatigue or symptom exacerbation.
PESE is most often triggered by physical activity and exercise. 75% of people living with long Covid still experience PESE after 6 months.
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Many of the symptoms experienced by those living with long Covid are very similar to those of myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
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Your physiotherapist can guide you in pacing as activity management tool that is also used successfully for people with ME/CFS to prevent triggering PESE.
  1. STOP trying to push your limits.
  2. Overexertion may harm your recovery
  3. REST is your most important management strategy. Do not wait until you feel symptoms to rest.
  4. PACE your daily activities and cognitive activities. This is a safe approach to navigate triggers symptoms.
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"Graded exercise therapy should not be used, particularly when post exertion symptoms exacerbation is present."

https://www.fitnortheast.org/articl...exacerbation-in-covid&CID=1011093&FID=Article
 
Covid-19: Long covid must be recognised as occupational disease, says BMA
https://www.bmj.com/content/374/bmj.n2258

In a motion passed at the BMA annual representative meeting, doctors called on the body to “seek the recognition of occupationally acquired acute covid and long covid in doctors as an occupational disease.” They also called for a multidisciplinary approach to the management of long covid that includes primary, specialist, and occupational medicine.
...
The only opposition to the motion was regarding the wording around doctors, rather than all healthcare workers. It was accepted, however, that the BMA should work to support the unions of other healthcare professionals to ensure that all health and social care staff are included.​

"Recognizing" Long Covid for physicians and no one else is just about what I expected out of the BMA. Privilege is nice.
 
rvallee said:
Covid-19: Long covid must be recognised as occupational disease, says BMA
https://www.bmj.com/content/374/bmj.n2258

In a motion passed at the BMA annual representative meeting, doctors called on the body to “seek the recognition of occupationally acquired acute covid and long covid in doctors as an occupational disease.” They also called for a multidisciplinary approach to the management of long covid that includes primary, specialist, and occupational medicine.
...
The only opposition to the motion was regarding the wording around doctors, rather than all healthcare workers. It was accepted, however, that the BMA should work to support the unions of other healthcare professionals to ensure that all health and social care staff are included.​

"Recognizing" Long Covid for physicians and no one else is just about what I expected out of the BMA. Privilege is nice.
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It does seem odd to phrase it in relation to physicians rather than health care workers more broadly, though if it is accepted for one sub group it would be hard to such deny recognition to other workers in the same setting at equal or even higher risk.

Also it then raises the issue for care workers, ambulance drivers and paramedics, the police, etc. Basically any one whose job forces them into close proximity with people with Covid.
 
rvallee said:
Covid-19: Long covid must be recognised as occupational disease, says BMA
https://www.bmj.com/content/374/bmj.n2258

In a motion passed at the BMA annual representative meeting, doctors called on the body to “seek the recognition of occupationally acquired acute covid and long covid in doctors as an occupational disease.” They also called for a multidisciplinary approach to the management of long covid that includes primary, specialist, and occupational medicine.
...
The only opposition to the motion was regarding the wording around doctors, rather than all healthcare workers. It was accepted, however, that the BMA should work to support the unions of other healthcare professionals to ensure that all health and social care staff are included.​

"Recognizing" Long Covid for physicians and no one else is just about what I expected out of the BMA. Privilege is nice.
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and train drivers . Bus drivers. Key retail staff. Social and outreach workers .......
Lots of key workers kept society going and suffered the consequences ....or do they no longer count
 
Leila said:
Edit: Oh but it's 50% of those 0.2% that reported breakthrough infection, right?
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Yes, but the claim of "50%" is not actually based on reasonable quality research.

It is the severe persistent symptoms (>3 months) that we care about and there are no prospective studies that follow community based (not hospital based) prospective cohorts reporting severity of symptoms after 3 months.

The overall incidence of severe LongCovid (similar to housebound ME cases) is much lower than the often quoted 20-30%...
 
NIH has just held a call for the “Recover” project (https://recovercovid.org/) regarding their announcement today of a $470M project to build a study population of tens of thousands of enrolled patients:
https://www.nih.gov/news-events/new...s-support-research-long-term-effects-covid-19

I’m not sure if this money is part of the 1.15B or separate.

Emily Taylor spoke very well on behalf of the Long Covid Alliance. They are working with the NIH to represent the long covid and ME patient voice in designing study protocols. The long covid alliance is built of mostly ME patients groups so we can feel very well represented, along with long covid advocates like Body Politic. https://longcovidalliance.org/

They are saying they hope to have trials within a year to 18 months.
 
https://www.irishexaminer.com/news/arid-40698590.html

Professor Philip Nolan, the head of NPHET’s modelling group, said
[..]

there appear to be two broad strains of Long Covid — one which sees a body affected by issues such as kidney problems, the other with more “vague” symptoms such as fatigue and brain fog.

He said the best research at present indicates an average recovery period from the illness of between 8 and 12 weeks.
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