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

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I just read something that reminded me that NICE guidelines for “CFS/ME” currently use a 4-month wait period which means by these criteria, some COVID cases could now be eligible for a diagnosis. These criteria are fairly loose so a lot more would satisfy them than say the ICC ME criteria.
 
Chicago Tribune: COVID-19 patients could be at risk for chronic fatigue syndrome: "Your whole life can change if you get this"

Jason says that when chronic illness sets in, patients tend to question why they can’t resume their previous lifestyle. But if researchers get out ahead of this now, the medical field can start finding ways of accommodating people with post-viral fatigue, being sensitive to their needs.

“That’s what’s important,” he said. “We don’t want to retraumatize them or stigmatize them as if this is something that is their fault. Fatigue and pain are primary reasons people go to their physicians. The problem is if you see 25% of your patients are fatigued, and someone comes in with some kind of post-viral fatigue, they just get put into that larger category and doctors don’t understand that one can be much more serious and much more limiting.”
 
Kalliope said:
Chicago Tribune: COVID-19 patients could be at risk for chronic fatigue syndrome: "Your whole life can change if you get this"

Jason says that when chronic illness sets in, patients tend to question why they can’t resume their previous lifestyle. But if researchers get out ahead of this now, the medical field can start finding ways of accommodating people with post-viral fatigue, being sensitive to their needs.

“That’s what’s important,” he said. “We don’t want to retraumatize them or stigmatize them as if this is something that is their fault. Fatigue and pain are primary reasons people go to their physicians. The problem is if you see 25% of your patients are fatigued, and someone comes in with some kind of post-viral fatigue, they just get put into that larger category and doctors don’t understand that one can be much more serious and much more limiting.”
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Hey, great article!

Strong start:
As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those recovering from coronavirus to listen up.
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I will very much be saying WE TOLD YOU SO until my dying breaths. Many great quotes.
“The ME/CFS community is saying 80% of us had some sort of virus and that went away, and we’re still stuck with all of these symptoms,” said Sanna Stella, an Oak Park resident who was diagnosed with ME/CFS. “If you’re a patient, you really have to listen to your body and not all those ‘shoulds’ we tell ourselves. ... Because if you keep pushing, for some of these patients, it really will make things a lot worse.”
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“At some point, we’re going to get things under control. But what about those people who never recover?” Jason said. “We can’t just forget about those people. This is a challenge to the whole health care system. Just like George Floyd’s death was the tip of the iceberg, we need to figure out how to fix this system because there are going to be a lot of people who are at risk, who are going to probably get sick and be in the same situation unless we do something.”
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NelliePledge said:
Andrew Gwynne UK MP interviewed by Matt Frei on LBC Radio about post viral symptoms
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Andrew Gywnne talking about his post-covid symptoms could be me talking about my post-infectious symptoms 37 years ago.

It does seem like there are at least two (possibly more) distinct, but not necessarily mutually exclusive, post-Covid processes that can occur. One sounds like the result of lung damage - i.e. low work capacity due to insufficient oxygen, while the other sounds a whole lot like ME/CFS.

It's kind of amazing to hear post-Covid patients talking about things as specific and unusual as "word finding" problems, which I've only heard of in relation to ME/CFS. Hopefully, this will turn out to be a short-lived, post- infectious syndrome for most of these patients - but its similarity to ME/CFS (except for duration, so far) certainly seems to be put the lie to the idea that ME/CFS symptoms are the result of "deconditioning."
 
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A couple of things strike me about the interview. It seems much easier now to describe the condition now that the descriptive vocabulary is available, even if far from perfect. Forty years ago it was a nightmare trying to find words when no-one, or no-one you knew, knew of the possible existence of such a condition.

It will be interesting to see parliamentary interventions on post-covid matters and compare them with actions taken previously on ME or PVFS related matters.
 
Two thirds of nurses recovered from COVID still experiencing fatigue

(In Ireland)

https://www.inmo.ie/Home/Index/217/13598

This could have stopped at Royal Free. Instead it was allowed to fester and grow into a massive problem. Denial is not a serious position in any profession.
65% of nurses who have recovered from COVID-19 are still experiencing post-viral fatigue, according to a recent survey by the Irish Nurses and Midwives Organisation (INMO).

Of the 545 respondents who said they had recovered from the virus, 497 (91%) stated they continued to experience symptoms, which also included mental health difficulties, headaches and breathing problems.

Other post-viral symptoms cited by respondents included:
• Anxiety, trouble concentrating or “brain fog”
• Dizziness/ light headedness
• Recurring fever
• Palpitations
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This whole thing where we lack a basic vocabulary to talk about things is very problematic and amateur:
“As winter approaches, frontline staff face a toxic combination of fatigue and understaffing. Safe staffing levels are the only way to ensure that our health service is not overwhelmed. We urgently need a clear plan to ramp up health service capacity before winter hits.”
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Here fatigue is used to mean something different than what it means in other parts of the same report. What a confused mess. Sort out your crap, medicine, this is embarrassing.
Below are the ongoing symptoms reported by those who have recovered from the virus (545):

- Fatigue 65%

- Nausea 4%

- Breathing/respiratory problems 21%

- Headaches 22%

- Mental health difficulties such as stress or anxiety 33%

- Chest pain 10%

- Other 40%

Other post-viral symptoms cited by respondents included:
  • Loss of taste and smell
  • Shortness of breath
  • Muscle and/or joint pain
  • Congestion or sinus pain
  • Dizziness/ light headedness
  • Insomnia
  • Recurring fever
  • Palpitations
  • Chest tightness
  • Anxiety and trouble concentrating or “brain fog”
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"Recovered"

I imagine physicians likely have similar numbers. It costs about $1M to train a doctor. That's a very significant waste that health care systems are ill-equipped to deal with.

We told you so.
 
Medics With 'Long COVID' Call for Clinical Recognition

https://www.medscape.com/viewarticle/934287

Thousands of coronavirus patients risk going without treatment and support for debilitating symptoms lasting months because of a lack of awareness of 'long COVID', according to a group formed by clinicians with extended serious after-effects of the virus.

Many members of the 100-strong Facebook group UK doctors: COVID 'Long tail' have been unable to work for weeks after failing to recover from an episode of COVID-19. They warn of the need for clinical recognition of 'long COVID', along with systems to log symptoms and manage patients in the community. Without this, there could be major consequences for return to work across all professions, as well as implications for disease prevention.
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The recently-announced NHS portal for COVID-19 patients has been welcomed by the authors as an opportunity for long-standing symptoms to reach the medical and Government radar. But Dr Taylor believes it should have been set up from the start with input from patients with symptoms, to make sure that any support provided reflects the nature of the problems experienced.
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Same reaction from the patient community: the data are not reliable because not all the relevant questions are being asked. Exact same reaction from the ME community to decades of doing that...
One issue is the lack of a reliable estimate of the prevalence of post viral symptoms for other viruses, let alone for COVID-19. Even a 1% chance of long-term problems amongst survivors would suggest 2500 with a need for extra support, but experience with post-viral syndrome generally suggests the prevalence may be more like 3%.

The BMA has been carrying out tracker surveys of its own members at 2-week intervals since March. The most recent, involving more than 5000 doctors, indicated that around 30% of doctors who believed they'd had COVID-19 were still experiencing physical symptoms they thought were caused by the virus, 21% had taken sick leave, and a further 9% had taken annual leave to deal with ongoing symptoms.
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He told Medscape News UK: "Once COVID-19 enters the nervous system, the lasting symptoms on people can range from a mild loss of sense of smell or taste, to more severe symptoms such as difficulties in concentration. A small number have also been left with chronic fatigue syndrome, which is poorly understood, and can be difficult to treat. This does not appear to be dependent on the initial severity of COVID-19 symptoms.

"Currently, it is impossible to predict the prevalence of longer-lasting effects. A full assessment of COVID-19's impact will only be possible once people return to work on a regular basis and the effect on their physical health becomes evident. Of the doctors in the BMA survey who had experienced COVID-19, 15% took sick leave beyond their acute illness, and another 6% used annual leave allowance to extend their recovery time.
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The authors of The BMJ article stress the wide-ranging nature of 'long COVID' symptoms and warn of the dangers of treating them for research purposes under the banner of chronic fatigue. They say: "These wide-ranging, unusual, and potentially very serious symptoms can be anxiety-provoking, particularly secondary to a virus that has only been known to the world for 8 months and which we have barely begun to understand. However, it is dismissive solely to attribute such symptoms to anxiety in the thousands of patients like ourselves who have attended hospital or general practice with chronic COVID-19."
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Oh, it's not "just fatigue"? Weird how nobody has been pointing that out for decades. Oh, wait.

Nothing beats lived experience to understand the severity of a disease. But this is a very lousy system to work with if we expected all oncologists to live with cancer or any combination thereof.

Can we now move on from the stupid behavior junk? Or do enough physicians have to go through the insult of gaslighting and iatrogenic harm to get this moving?
 
It takes a critical mass of medics to be affected to change things. Only when the glass houses have broken under the weight of stones will enough light be cast to see a clearer picture.

Similar to professions such as police. There was a terrible junction on a main road near us. Guaranteed fatal accidents for year upon year. When this happened to the traffic cops themselves the junction was quickly revised and speed reduction introduced along the stretch of road. Funny that.
 
@rvallee Aren't you forgetting something? This all counts for nothing

In addition, we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced.
 
There is an enormous amount that we still do not know about covid-19. Many symptoms do not appear to be “post viral” as they emerged with the first manifestations of covid, some symptoms appear later, and it is still uncertain if the relapses represent viraemias or not
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Patients’ experiences of “longcovid” are missing from the NHS narrative
July 10, 2020
Patients and carers must be involved in any initiatives to explore the long term impacts of covid-19
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https://blogs.bmj.com/bmj/2020/07/1...longcovid-are-missing-from-the-nhs-narrative/

I’m not sure that’s a good definition of post viral.
 
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rvallee said:
Medics With 'Long COVID' Call for Clinical Recognition

https://www.medscape.com/viewarticle/934287



Same reaction from the patient community: the data are not reliable because not all the relevant questions are being asked. Exact same reaction from the ME community to decades of doing that...



Oh, it's not "just fatigue"? Weird how nobody has been pointing that out for decades. Oh, wait.

Nothing beats lived experience to understand the severity of a disease. But this is a very lousy system to work with if we expected all oncologists to live with cancer or any combination thereof.

Can we now move on from the stupid behavior junk? Or do enough physicians have to go through the insult of gaslighting and iatrogenic harm to get this moving?
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These include cardiac, gut and respiratory symptoms, skin manifestations, neurological and psychiatric symptoms, severe fatigue, and relapsing fevers, sometimes continuing for more than 16 weeks, and which they say go well beyond definitions of chronic fatigue. The authors are also aware of a pattern of symptom clusters recurring every third or fourth day, which in some cases are so severe that people are having to take extended periods of sick leave.
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