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

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rvallee said:
¯\_(ツ)_/¯

All evidence points to the fact that some viral infections leave a % with PVFS, a % of which remain ill and this is what we typically call ME, or a major subset of it anyway. The overlap is massive but that means little until adequately-funded research actually begins.

More than that I don't know and would rather science figure out than speculate.
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I hear you we need more science to be able to categorise groups better. However, I am aware there are a group of patients who can experience post viral fatigue after viruses such as influenza or mono/glandular fever for a few months or even up to a couple of years (Alex above mentions he knows someone who was ill for 5 years though rare) but ultimately they thankfully make full recoveries. I know science might not yet be able to identify who ends up having self limiting post viral fatigue - though Ramsay and ICC criteria may help - and who do not go on to develop ME but I think there needs to be acknowledgement and consideration of this possible cohort in any studies. It is why I think too any research on post CoVid patients and ME must be done clearly separating the two groups in a study.

Dr Ramsay refers to these self limiting post viral conditions in a letter to the Lancet in 1988. He writes:

“Dr Lloyd and colleagues (June 4, p 1286) present a well-reasoned case for the clinical identity of myalgic encephalomyelitis (ME) as I have observed it over the past 30 years but I disagree strongly with their conclusion that the term "myalgic encephalomyelitis" is inappropriate."

"Of all the synonyms used for this condition ME is the most apt since all the clinical features derive from either the myalgic or the encephalitic component and usually from both. I agree that postviral fatigue syndrome is totally inappropriate."

"Indeed the mistaken assumption that ME and PVFS are synonymous has given rise to a lot of unnecessary confusion. Used in its correct context PVFS covers several conditions such as post-influenzal debility or the more severe post-infectious mononucleosis fatigue state, which are clinically in complete contrast to the three cardinal features of ME—namely,

a unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3 or more days elapse before full muscle power is restored;

the extraordinary variability or fluctuation of symptoms even in the course of one day;

and the alarming chronicity, which exceeds anything encountered in a postviral fatigue state."
https://sci-hub.tw/10.1016/S0140-6736(88)90028-1
 
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Title : The patients who just can't shake off Covid-19
https://www.bbc.co.uk/news/health-52548843

In the last section of the article is this paragraph :

Part of the problem is that so much about the coronavirus is unknown, including why some people experience relatively mild symptoms lasting a few days, while other perfectly healthy people are left struggling for weeks.

Having read that the thought immediately popped into my head that it should say :

Part of the problem is that so much about the coronavirus is unknown, but don't worry doctors and the DWP will invent whatever they need to.
 
Justy said:
Hi! i'm in that slack - just joined the autoimmune section because i was bored of people waiting to return to 'normal' when we never will. Hope to see you there. (ive got same photo)
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Hi Justy

So sorry to hear you are so up against it right now. I do hope you start to feel a bit better soon. It’s horrible isn’t it?

I’ve had to give up on Slack; I just can’t keep up!

There is something else that you and me have in common with our illnesses but I can’t quite remember what.. positive Lyme test maybe or hypothyroid or both?

I wonder if these underlying issues might offer some clues.

I have never had lung issues before but I am still breathless on slightest exertion and the chest pain refuses to shift. I was a smoker my whole life until 20 years ago so maybe my lungs weren’t in the good shape I thought they were.

Sending you very best wishes
 
NewStatesman - Scientists and doctors are grappling to understand the fiendish complexity of Covid-19 - by Phil Whitaker

My longest-running patient has been intermittently unwell for over seven weeks now. At present, we don’t know whether these people represent an ongoing infection risk, periodically shedding the virus. It makes decisions about the duration of self-isolation challenging.

Some other viral infections can cause relapsing symptoms, the most common being glandular fever, which is an important precipitant of chronic fatigue syndrome (sometimes called ME)
 
University of Leicester
Patients at higher risk of developing ME after COVID-19 diagnosis
06 May 2020
Patients who have had coronavirus could be at higher risk of developing Myalgic Encephalomyelitis (ME), researchers at the University of Leicester have warned.

From previous studies involving patients with Epstein Barr and SARS, it has been estimated that up to 10% of people recovering from COVID-19 could develop ME. Whilst the exact causes of all cases of ME are not known, viral infection is commonly identified as a trigger.

As part of their rehabilitation, patients who have been critically ill with COVID-19 may require physiotherapy, and so physiotherapists could play an integral role in spotting the initial signs of the disease developing in patients.

Dr Nicola Clague-Baker, Associate Professor in the School of Allied Health Professions at the University of Leicester said: “The link between severe viral infection and ME is clear, as evidenced in the previous outbreaks of SARS and Epstein Barr, which saw an 8 - 10% corresponding rise in the number of patients diagnosed with ME.

“During the national COVID-19 crisis, many physiotherapists will have been redeployed to front-line services, but as time goes on our attention will shift to the rehabilitation of patients that were critically ill with coronavirus.

“Now is the time for physiotherapists to heighten their awareness of this serious complication from viral infection. ME develops from post-viral fatigue syndrome and is usually diagnosed between four and five months from the start of the viral infection.”

ME currently affects approximately 250,000 people in the UK and causes a severity of disability that often exceeds conditions such as heart disease or cancer. Around 25% of patients are completely bedbound, with symptom duration that can last indefinitely.

A defining feature of ME is Post-Exertional Malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.

The challenge for physiotherapists who are working to rehabilitate COVID-19 survivors is to identify those who start to display symptoms of ME so that they can adapt their approach to avoid triggering PEM and worsening the condition.

Dr Clague-Baker recommends looking for indicators that there has been a change to the patient’s daily life, for example they may have returned to work but are now having to use their weekends to recover or are finding daily tasks a struggle.

Dr Clague-Baker continues: “After a period of illness, people will be keen to recover and return to their normal activities, and many may try to ignore symptoms and believe they can ‘push through’ their fatigue.

“Careful questioning and an awareness of the viral infection in their history may help to identify potential new ME patients. It may be several months, or even years, before their symptoms are accurately identified.”
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https://le.ac.uk/news/2020/may/coronavirus-me-risk

@PhysiosforME
 
Sly Saint said:
University of Leicester
Patients at higher risk of developing ME after COVID-19 diagnosis
06 May 2020
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That actually looks like a very good article.
Proper recognition of PEM, the importance of avoiding triggering it, and good recognition of severity.
And no mention of the dreaded CBT/GET, instead a very sensible:
The challenge for physiotherapists who are working to rehabilitate COVID-19 survivors is to identify those who start to display symptoms of ME so that they can adapt their approach to avoid triggering PEM and worsening the condition.
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Edit: And I've just realised why it's such a good article. The author is one of the founders of @PhysiosforME. Thank you.
 
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Sly Saint said:
BBC Breakfast segment on Covid-19 & possible ME
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Is this the one where an MD made the weird comment that people used to think that mono could lead to ME but don't anymore? It would be swell to correct and especially try to understand where that disinformation came from. It's really weird how sometimes random opinions about ME seem to be voiced coming out of nowhere, like one comment from an MD a few months ago who somehow got in his head the idea that "CFS" cases have dropped 75% in the last few years. So many opinions. Almost all of them wrong.

Mono used to cause ME in some cases. It still does. But it used to, too.
 
Getting more coverage. Still frames it as a completely new thing, though. It's not as if there's a long-documented history of viral outbreaks leading to this clinical presentation or anything...

Because even if 99.9% of those patients end up fully recovering, the very idea of prolonged illness past the acute infectious stage remains largely denied by medicine. We're not talking about people sick for over a year. Even just after a few weeks and their GPs are all: "well, this is impossible". It seems that only mild fatigue is an accepted symptom of prolonged viral illness. The "and other symptoms" part remains wholly unacknowledged.


Fever, fatigue, fear: For some recovering COVID-19 patients, weeks of illness, uncertainty

https://www.nbcnews.com/health/heal...ring-covid-19-patients-weeks-illness-n1197806

After an initial positive COVID-19 test, Porter has since tested negative for the virus, yet symptoms persist.
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Andrew Dumont, 32, of Seattle, has also tested negative for the virus after a previous positive COVID-19 test. Two months since first falling ill, Dumont still suffers from numbness in his limbs and shortness of breath — prompting two visits to the emergency room twice in the past week.

CT scans and lung x-rays showed no additional infections.

"It's really scary, because you're just kind of left at home by yourself essentially trying to treat it," Dumont said.
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Even doctors with a keen understanding of how viruses typically act understand recovering patients' concerns.

"As a physician, I know what can happen," Dr. Michael Saag, a renowned infectious disease expert at the University of Alabama at Birmingham, said. Saag was diagnosed with COVID-19 in March and described the illness as a "horror" that included fever, muscle aches, fatigue and difficulty thinking.
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It's really telling that infectious disease experts are so oblivious to viral illnesses. They understand the disease mechanism but the illness that they cause? Total ignorance beyond the acute infectious stage. The fact that they respond the exact same way we all did, a response they would readily label as illness-seeking behavior, is amazingly ironic. Especially the whole seeking other patients thing. Just wow.
Patients like Porter and Dumont, who have had long-term symptoms, understand the value of sharing their stories.

"I was desperate for someone to tell me I'm not crazy," Porter said. "It's scary to go through this for so long when there's so many unknowns about the virus."

Dumont shared his COVID-19 symptoms on Twitter, and said he's since received hundreds of messages on the social media site from other patients with similar stories.
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If only medicine had not ignored the millions of similar stories that were voiced for decades over this. But those angels were making such pretty dance moves on the hairpins...
 
rvallee said:
Total ignorance beyond the acute infectious stage.
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Grumble:
The acute infectious stage often doesn't seem to perturb ID specialists at all. When initially sick with an infection, the primary care physician wanted a patient to see an infectious disease specialist. In trying to make an appointment with the specialist the person was told the wait was 9 months. What part of "infectious" did they not understand? Was it the part where the person might have infected umpteen others in 9 months? Was it the part where the person might have died in 9 months because they hadn't been seen and treated?.....
 
Trish said:
That actually looks like a very good article.
Proper recognition of PEM, the importance of avoiding triggering it, and good recognition of severity.
And no mention of the dreaded CBT/GET, instead a very sensible:


Edit: And I've just realised why it's such a good article. The author is one of the founders of @PhysiosforME. Thank you.
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You're welcome! We've been working with the Chartered Society of Physiotherapy to try and use the opportunity of COVID to raise awareness
It's really nice to get positive feedback so thank you
 
cassava7 said:
An interview of Dr Alain Moreau in Radio Canada, in French. Mentions the OMF post-COVID19 study, his hospital will participate.

Link: https://ici.radio-canada.ca/nouvell...es-maladies-soins-intensifs-sante-coronavirus
Google Translate: https://translate.google.com/translate?sl=auto&tl=en&u=https://ici.radio-canada.ca/nouvelle/1701011/covid-19-autres-maladies-soins-intensifs-sante-coronavirus
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Good article. It's really a sign that things are changing that it's straight and to the point, no fluff about controversy of any of that crap. It treats it as a serious issue that deserves attention and runs with it. CBC is the Canadian equivalent of the BBC, by the way. Radio-Canada is the French branding.

It's sad but Montreal is a huge hot spot right now. Being right next door to the worst outbreak in the world really doesn't work great. Mistakes were made obviously but the timing was a perfect storm.

This is especially interesting, quote from Moreau:
"There isn't a day that goes by without receiving calls from clinicians, patients or organizations asking us to investigate this because many anticipate the risk of developing ME"
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I wonder how much of that would have happened regardless vs how big was the impact last fall with the announcement of ICanCME. Anyway what this suggests is this simple thing that we have lacked all along: it's a problem worth solving. HELL. YEAH.
 
I'm not sure if this article has been posted yet:
For a growing number of COVID-19 patients, symptoms last more than a month. Four young patients who've been sick 30-plus days say they're 'terrified.'
  • Four young coronavirus patients with “mild” cases told Business Insider they are still experiencing symptoms after more than a month.
  • Many of them feel guilty for not being able to fully return to work. Some say their families and colleagues are sceptical of their lingering illness.
  • All four patients said they expected to be recovered within two weeks, based on CDC guidance.
  • But doctors aren’t sure how long coronavirus symptoms typically last, meaning patients can’t plan for life post-recovery.
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https://www.businessinsider.com.au/...covery-symptoms-last-a-month-2020-4?r=US&IR=T

There's some familiar themes in the article for those of us with a post-viral onset. I suspect a lot of post-covid patients are about to discover the complete disinterest and disdain the medical profession has for people whose illness trajectories don't correspond with the CDC guidelines and textbooks.
 
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rvallee said:
Good article. It's really a sign that things are changing that it's straight and to the point, no fluff about controversy of any of that crap. It treats it as a serious issue that deserves attention and runs with it.
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Agreed. I cringe every time an article mentions the word 'controversial'. Often a well-intentioned attempt at increasing credibility but unfortunately tends to have the opposite effect.

Anyway, Moreau is not sitting on his hands. This sounds promising:
We have the window of opportunity to study early events, which is quite unique , says Alain Moreau.

The researcher's team therefore hopes to convince intensive care patients from the Verdun hospital and the Notre-Dame hospital in Montreal to participate in its research. By analyzing the saliva and the morning urine, he will monitor every 3 to 4 months, for 12 to 18 months, the genetic and metabolic changes.
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From https://translate.google.com/transl...es-maladies-soins-intensifs-sante-coronavirus
 
Article today in Berliner Zeitung - Corona könnte krankhaft - chronisches Erschöpfungssyndrom auslösen
google translation: Corona could trigger disease - Chronic Fatigue Syndrome

Article has a summary of recent research and quotes from Carmen Scheibenbogen.

Approximately 17 million people worldwide suffer from the severe neuroimmunological disease ME / CFS, commonly known as chronic fatigue syndrome. The corona pandemic could make the situation worse.

ETA: Also includes Bhupesh Prusty, Naviaux, the recent victory in the European Parliament, 12th of May and more
 
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