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

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Wasn't sure where to post this:
https://www.cambridge.org/core/serv...19-finding-an-intervention-that-works-div.pdf

BJPsych Open

Reducing fatigue-related symptoms in Long COVID-19: finding an intervention that works

Adrian Heald1*, Lisa Riste2, Andreas Walther3, Mike Stedman4, Annice Mukherjee2 and Ray Perrin2
1 Salford Royal Foundation Trust;
2 University of Manchester;
3 University of Zurich
and
4 Res Consortium
*Corresponding author. doi: 10.1192/bjo.2021.681

Aims.

In the early days of the first global wave of the COVID-19 pandemic, the potential for a post-viral syndrome to manifest following COVID-19 infection was highlighted. It was pointed out that an early intervention applying management techniques used in patients with CFS/ME appeared to help reduce the fatigue related symptoms of Long COVID. Here we present an analysis of a consecutive case series of the first twenty patients’ data collected. Our aim was to evaluate the potential of this mode of treatment for Long COVID.

Method.

Face to face treatment sessions with the practitioners occurred once a week, involving effleurage and other manual articulatory techniques. The individuals being treated also undertook a daily selfmassage along with gentle mobility exercises and alternating warm and cool gel packs on the upper spine, to encourage a reduction of spinal inflammation and further aid lymph drainage of the brain and spine. Symptom severity was recorded using the self-reported 54-item Profile of Fatigue Related States (PFRS).

Result.

The mean age of the men was 41.8 years with a range of 29.1-53.1 years with the corresponding mean age for women being 39.3 years with a range of 28.3-50.4 years. The average time interval between onset of Coronavirus symptoms and start of treatment for Long COVID was just over 20 weeks. The average number of treatment sessions was similar at 9.7 in men and 9.4 in women.
The change in Profile of Fatigue Related States (PFRS) score was similar in men with a significant decrease (-45%) as in women (-52%) (F 4.8, p < 0.001). None of the individuals had any prior diagnosis of chronic fatigue syndrome. All were new attendees to the clinic at the time of initial assessment.

Conclusion.

Our findings indicate that this intervention based on massage and mobility exercises significantly reduced fatigue related to Long COVID. It may be that early intervention and supportive treatments at the end of the acute phase of COVID-19 can help overcome acute phase symptoms and prevent them becoming chronic/enduring
 
The Swedish group Vetenskapsforum Covid-19 is hosting a Facebook live event about ME/CFS on 1 July at 8pm local time.

(I'm sharing this only as information, not a recommendation.)

Vetenskapsforum Covid-19 ("Science Forum Covid-19") are perhaps better known as the infamous ”22 researchers”, a pretty controversial group of people in the context of covid-19. One of them is Sture Eriksson, the vice chairperson of RME (the Swedish ME Association).

The text on the Facebook event cover photo says (roughly translated):

"Is this a recently discovered condition?

How do you tell the difference between ME and other conditions with similar symptoms?

What are the causes for ME?

Is Covid-19 one of the triggers?

What are the most important pathological changes in ME?

How is it diagnosed?

What are the consequenses of the illness?

What are the treatments for ME?

What do we know about the long-term prognosis?"
 
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Guardian article: ‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome

This is another article in "The pain that can't be seen" series that we keep seeing in the last couple of days and I think this one is the best written so far. Anthony Komaroff, David Tuller, Nina Muirhead are quoted, the CDC recommendations and NICE guidelines regarding CBT and GET are mentioned, also the stigma around the disease:

Muirhead said her colleagues didn’t know what to do for patients with the baffling mix of symptoms of ME/CFS. The lack of a single diagnostic test or a biomarker added to the confusion. Many attributed the symptoms to mental health, and blamed the patient for not working harder to get better, she said.

“There’s a major, major stumbling block and that’s that the medical profession still doesn’t know the difference between a post-viral multi-system disease and anxiety,” she said.

(...)

But change is happening too slowly, say patients. Sanna Stella, a mental health therapist in Chicago who has ME/CFS, said she had never revealed her illness to colleagues when she was training because she worried about stigma. “Part of me feels like I need to let people know, but … what if it affects their perception of [my] competency?” she said.

Many experts in the ME/CFS community hope that research into long Covid ends the debate over whether these disorders are psychogenic.

“Right now, what we’re having is a natural worldwide experiment, in which we’re seeing that many, many people after a viral assault are reporting prolonged, non-specific symptoms, and they’re not crazy. It’s not psychogenic,” said Tuller.​

https://www.theguardian.com/austral...patients-living-with-chronic-fatigue-syndrome
 
Dolphin said:
Face to face treatment sessions with the practitioners occurred once a week, involving effleurage and other manual articulatory techniques. The individuals being treated also undertook a daily selfmassage along with gentle mobility exercises and alternating warm and cool gel packs on the upper spine, to encourage a reduction of spinal inflammation and further aid lymph drainage of the brain and spine. Symptom severity was recorded using the self-reported 54-item Profile of Fatigue Related States (PFRS).
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What on earth are they talking about? :emoji_rolling_eyes:
 
Kalliope said:
TUC (Trades Union Congress) - Workers' experiences of long Covid - A TUC report

Quote:

Treatment of disabled people with energy impairments

In seeking solutions to the negative experiences of people with long Covid at work it is clearly vital to ground all solutions in the lived experiences and preferences of those who have this. However it is also important to reflect on the previous experiences of disabled workers with energy impairments like fatigue. Although Covid-19 and long Covid are new, it is estimated that around 250,000 people in the UK experience chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME).

ME or CFS is a long-term, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.

People with ME/CFS experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy. Not everyone will experience the same symptoms. Preliminary reports and data about long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as ME/CFS.

Workers with energy impairments have faced widespread discrimination and disbelief at work. Scepticism about the existence and extent of energy impairments like ME/CFS is widespread as highlighted in a report by Chronic Illness Inclusion which stated that“negative perceptions and misunderstandings around ‘fatigue’ and chronic illness create formidable yet unnecessary barriers to work. The widespread notion that fatigue is not a real disability stands firmly in the way of disability equality in work. Systemic disbelief of energy impairment affects disability disclosure and access to reasonable adjustments, and contributes to strained employment relations, sometimes causing unnecessary departure from the labour market.”

The parallels between workers with energy limiting impairments and long Covid are clear. Going forward it is imperative employers understand energy impairments and learn the lessons from the previous experiences of people with ME/CFS, so that appropriate reasonable adjustments are put in place for workers who have long Covid, ME/CFS or other energy limiting impairments.


Methodology

In order to better understand the experiences of workers who have, or have had, ongoing symptoms after having Covid-19, commonly known as ‘long Covid’, the TUC conducted research using a self-selecting online survey. The survey was open between 3 April and 27 May 2021 and was promoted on social media, through affiliated unions and long Covid support groups. We received 3,557 responses from people who self-reported that they had had Covid-19. Of these, 3,296 were from people who self-reported that they had long Covid.


...
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This is tonight,
 
Dolphin said:
Wasn't sure where to post this:
https://www.cambridge.org/core/serv...19-finding-an-intervention-that-works-div.pdf

BJPsych Open

Reducing fatigue-related symptoms in Long COVID-19: finding an intervention that works

Adrian Heald1*, Lisa Riste2, Andreas Walther3, Mike Stedman4, Annice Mukherjee2 and Ray Perrin2
1 Salford Royal Foundation Trust;
2 University of Manchester;
3 University of Zurich
and
4 Res Consortium
*Corresponding author. doi: 10.1192/bjo.2021.681

Aims.

In the early days of the first global wave of the COVID-19 pandemic, the potential for a post-viral syndrome to manifest following COVID-19 infection was highlighted. It was pointed out that an early intervention applying management techniques used in patients with CFS/ME appeared to help reduce the fatigue related symptoms of Long COVID. Here we present an analysis of a consecutive case series of the first twenty patients’ data collected. Our aim was to evaluate the potential of this mode of treatment for Long COVID.

Method.

Face to face treatment sessions with the practitioners occurred once a week, involving effleurage and other manual articulatory techniques. The individuals being treated also undertook a daily selfmassage along with gentle mobility exercises and alternating warm and cool gel packs on the upper spine, to encourage a reduction of spinal inflammation and further aid lymph drainage of the brain and spine. Symptom severity was recorded using the self-reported 54-item Profile of Fatigue Related States (PFRS).

Result.

The mean age of the men was 41.8 years with a range of 29.1-53.1 years with the corresponding mean age for women being 39.3 years with a range of 28.3-50.4 years. The average time interval between onset of Coronavirus symptoms and start of treatment for Long COVID was just over 20 weeks. The average number of treatment sessions was similar at 9.7 in men and 9.4 in women.
The change in Profile of Fatigue Related States (PFRS) score was similar in men with a significant decrease (-45%) as in women (-52%) (F 4.8, p < 0.001). None of the individuals had any prior diagnosis of chronic fatigue syndrome. All were new attendees to the clinic at the time of initial assessment.

Conclusion.

Our findings indicate that this intervention based on massage and mobility exercises significantly reduced fatigue related to Long COVID. It may be that early intervention and supportive treatments at the end of the acute phase of COVID-19 can help overcome acute phase symptoms and prevent them becoming chronic/enduring
Click to expand...
It's really getting hard to avoid the conclusion that a disease that resolves itself naturally in most cases is basically medicine's worst-case scenario, it completely cripples every process and method normally used. It's just too easy to attribute to themselves this natural recovery, not only is there no resistance or awareness of this possibility but it's actively encouraged and rewarded.

Medicine without science is useless. Time to say it, it's effectively completely useless and EBM, a process to bypass science, may end up being one of the worst ideas in history.
 
News segment about Long Covid
Matthew Bartels, professor of physical medicine and rehabilitation at Montefiore Medical Center says exercise seems to help and compares the condition with CFS, mild dementia, metabolic conditions.
 
To understand why long Covid represents a looming catastrophe, we need look no further than the historical antecedents: similar postinfection syndromes. Experience with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, post-treatment Lyme disease syndrome, chronic Epstein–Barr virus, and even the 19th-century diagnosis of neurasthenia could foreshadow the suffering of patients with long Covid in the months and years after infection.
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Some of the disregard can be attributed to the fact that long Covid has disproportionately affected women. Our medical system has a long history of minimizing women’s symptoms and dismissing or misdiagnosing their conditions as psychological. Women of color with long Covid, in particular, have been disbelieved and denied tests that their White counterparts have received.
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https://www.nejm.org/doi/full/10.1056/NEJMp2109285
 
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rvallee said:
Is there a good general one? I've seen some variations of... immune-mediated, immunological or something like that, but they aren't typically used.
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It all depends on what you are actually wanting to mean by the word. It is alto easy house words like inflammation or immunological without actually having any specific concept in your head! Just as people talk of economic growth without necessarily having a clear idea what the term means.
 
Jonathan Edwards said:
It all depends on what you are actually wanting to mean by the word. It is alto easy house words like inflammation or immunological without actually having any specific concept in your head! Just as people talk of economic growth without necessarily having a clear idea what the term means.
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So it really sounds like a vacuum word, used simply because a correct term has not been agreed on. Bit like how fatigue is used to cover every damn possible symptom in existence, stripping away all meaning those words have. Where there is a vacuum for a correct term, people will use another one, less correct. Otherwise we can't agree that we are talking about the same thing. Even if that word does not carry that exact meaning.

That problem is way too common, especially on basic concepts. One that has an easy technical fix blocked by human weirdness.
 
Collaboration intensifies



Iwasaki is an immunologist running a study on Long Covid prevalence in vaccinated people (and I think also the effect of vaccines on long haulers?) and also been cited many times in the last year in articles, seems motivated to research beyond LC.
 
Article in Discover Magazine on Long Covid. Experts quoted are Walter Koroshetz and Daniel Chertow from NIH, and professor of radiology Gholamrezanezhad.
Garner is mentioned as a recovery story.

What We Know and Don't Know About Long COVID

Quote:
Many of the theories about long COVID aren’t mutually exclusive — it could be a combination of various biological responses. Post-viral conditions are not entirely uncommon, and can cause similar symptoms: chronic fatigue, lingering pain. Historically, the treatment for these conditions has largely been managing symptoms. Some see COVID as an opportunity to learn more about post-viral conditions generally.
 
Kalliope said:
Historically, the treatment for these conditions has largely been managing symptoms.
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Why do people keep repeating this obviously false claim? If only we had anything to manage symptoms things would be so much better. Suffering symptoms and managing symptoms are entirely different things, when they are managed it's when you've alleviated at least some of the suffering. "You're on your own" is obviously not "management" in any shape or form, that's just neglect, dereliction of duty, whatever.

Symptom management is systematically refused to most. Sometimes smugly. Why are blatant lies so common out of medicine? None of this is true, it's never been true, it's literally one of the most common complaints that we have no help or support whatsoever.

That will be the day, when obviously false statements are restricted to historical accounts.
 
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