Post-viral fatigue: implications for long Covid

Posted on 01/13/2021 by wames

Post-viral fatigue: Implications for long Covid, by A P Smith in Asian Journal of Research in Infectious Diseases 6(1): 17-23, 2021 [doi : 10.9734/AJRID/2021/v6i130182]

 

Review abstract:

There has been extensive research on post-viral fatigue, and the present mini-review and
commentary provides an overview of the effects associated with different infecting agents.

Fatigue is not only a subjective state, rather it has an impact on our ability to carry out everyday functions, and its effect can be demonstrated using performance tasks. It is not surprising, therefore, that persistent effects of COVID-19 are observed, and the key features of Long Covid are reviewed here.

Suggestions for further research which will provide a better understanding of Long Covid and  provide a basis for prevention and management are also discussed.

3. CONCLUSIONS
Post-viral fatigue has been recognised and studied for a long time. The present article summarises previous research on post-viral fatigue. [Influenza, Common cold, Rabbit fever, Mononucleosis, Human Herpesvirus, Enterovirus, Parvovirus, Retrovirus, Ross River virus]

Upper respiratory tract infections often lead to short-lived fatigue, and this demonstrates the importance of considering time periods when the person no longer has the acute symptoms. More severe infections can lead to long-lasting fatigue, and there is good evidence that human herpesviruses and enteroviruses can lead to chronic fatigue syndrome.

It is not surprising, therefore, that a severe disease such as COVID-19 can lead to persistent syndromes. Long Covid has recently been recognised, and the features of the condition are described here.

At the moment, we are at the stage of having identified the condition. Further urgent research is now required to get a better understanding of underlying risk factors and mechanisms, and to develop appropriate prevention and management strategies

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For many COVID-19 survivors, another devastating syndrome may follow – ME/CFS

Posted on 01/12/2021 by wames

For many COVID-19 survivors, another devastating syndrome may follow, by Barbra Williams Cosentino, in Next Avenue, January 8, 2021

 

Myalgic encephalomyelitis, or Chronic Fatigue Syndrome, is on the rise.

Lisa Shanks, 48, was a healthy, energetic cardio-dance and fitness instructor before March 2020.

But three weeks after coming down with COVID-19, she felt worse instead of better, coughing nonstop and feeling as if she was wearing a tight corset preventing her from taking deep breaths. She was weak, dizzy and had blurred vision.

A COVID-19 “long hauler,” Shanks, of Vacaville, Calif., felt disconnected from herself and from the world. Her heart rate soared if she did something as simple as get out of bed. She was afraid she would die.

Though never hospitalized due to the coronavirus, by four months into the illness, Shanks lost 20 pounds and had muscle wasting and sagging skin that she says “looked like a deflated balloon.”

‘A Body Nothing Like the One I Had Before’

Now, nine months after Shanks was first laid flat, she says,

“I feel like an alien has taken over my body. I’m like a car that has run out of gas, stuck inside this body that is nothing like the one I had before.”

Recently, after pulmonary function tests revealed that her lungs were only working at 50% capacity, Shanks was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, often referred to as Chronic Fatigue Syndrome.

Read more about the rise of ME/CFS following Covid-19 infections in the USA

“Individuals with the disorder need to learn pacing, in which they are taught to respect their own triggers and limitations.”

says Adriane Tillman, editor of #MEAction, an international organization of people with ME, caregivers and family members.

“This means stopping and resting at the first signs of overexertion. Pacing helps patients to avoid a cycle of push-and-crash which can worsen symptoms significantly.”

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ME/CFS: organic disease or psychosomatic illness? A re-examination of the Royal Free Epidemic of 1955

Posted on 01/10/2021 by wames

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, by  Rosemary Underhill and Rosemarie Baillod in Medicina Vol 57 Issue 1 p12 [10.3390/medicina57010012] (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Abstract:

Background and Objectives:

Controversy exists over whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an organic disease or a psychosomatic illness. ME/CFS usually occurs as sporadic cases, but epidemics (outbreaks) have occurred worldwide.

Myalgic encephalomyelitis was named to describe an outbreak affecting the lymphatic, muscular, and nervous systems that closed the Royal Free hospital for three months in 1955. Fifteen years later, two psychiatrists concluded that epidemic hysteria was the likely cause.

ME/CFS research studies show multiple pathophysiological differences between patients and controls and a possible etiological role for infectious organisms, but the belief that ME/CFS is psychosomatic is widespread and has been specifically supported by the epidemic hysteria hypothesis for the Royal Free outbreak. Our objective was to obtain accounts from ex-Royal Free hospital staff who personally experienced the 1955 outbreak and evaluate evidence for it being an infectious illness versus epidemic hysteria.

Materials and Methods:

Statements in the newsletters of two organizations for staff who had worked at the Royal Free hospital invited anyone who had experienced the 1955 Royal Free outbreak to contact the authors. Accounts of the outbreak from telephone interviews and letters were evaluated against the “epidemic hysteria hypothesis” paper and original medical staff reports.

Results:

Twenty-seven ex-Royal Free hospital staff, including six who had developed ME, provided descriptions typical of an infectious illness affecting the lymphatic, muscular, and nervous systems, and were not consistent with epidemic hysteria.

Conclusions:

The 1955 Royal Free hospital epidemic of myalgic encephalomyelitis was an organic infectious disease, not psychogenic epidemic hysteria.

1955 Royal Free Hospital outbreak – MEpedia

Trial by error: New study reports first-hand accounts of 1955 hospital outbreak

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COVID-19 & CFS: is the worst yet to come?

Posted on 01/07/2021 by wames

COVID-19 and chronic fatigue syndrome: Is the worst yet to come? by Peter Wostyn in Med Hypotheses 2021 Jan 2 [doi: 10.1016/j.mehy.2020.110469]

 

Article abstract:

There has been concern about possible long-term sequelae resembling myalgic encephalomyelitis/chronic fatigue syndrome in COVID-19 patients. Clarifying the mechanisms underlying such a “post-COVID-19 fatigue syndrome” is essential for the development of preventive and early treatment methods for this syndrome.

In the present paper, by integrating insights pertaining to the glymphatic system and the nasal cerebrospinal fluid outflow pathway with findings in patients with chronic fatigue syndrome, idiopathic intracranial hypertension, and COVID-19, I provide a coherent conceptual framework for understanding the pathophysiology of post-COVID-19 fatigue syndrome.

According to this hypothesis, this syndrome may result from damage to olfactory sensory neurons, causing reduced outflow of cerebrospinal fluid through the cribriform plate, and further leading to congestion of the glymphatic system with subsequent toxic build-up within the central nervous system. I further postulate that patients with post-COVID-19 fatigue syndrome may benefit from cerebrospinal fluid drainage by restoring glymphatic transport and waste removal from the brain.

Obviously, further research is required to provide further evidence for the presence of this post-viral syndrome, and to provide additional insight regarding the relative contribution of the glymphatic-lymphatic system to it. Other mechanisms may also be involved. If confirmed, the glymphatic-lymphatic system could represent a target in combating post-COVID-19 fatigue syndrome.

Moreover, further research in this area could also provide new insights into the understanding of chronic fatigue syndrome.

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ME/CFS: major impact on lives of both patients & family members

Posted on 01/07/2021 by wames

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major impact on lives of both patients and family members, by Esme Brittain, Nina Muirhead, Andrew Y Finlay and Jui Vyas in Medicina 2021, 57(1), 43; [doi.org/10.3390/medicina57010043]  (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Research abstract:

Background and objectives:

To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments.

Materials and Methods:

A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire.

Results:

ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores.

Conclusions:

This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

More about the study from Esme Brittain

Larger global Family Impact study from Cardiff University, deadline 5 Feb 2020

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Are circulating FGF21 & NT-proBNP promising novel biomarkers in ME/CFS

Posted on 01/05/2021 by wames

Are circulating FGF21 and NT-proBNP promising novel biomarkers in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome?, by Prof Joan Carles Domingo, Dr Begoña Cordobilla, Dr Roser Ferrer, Dr Marina Giralt, Dr Jose Alegre-Martin, and Dr Jesus Castro-Marrero in Antioxidants & Redox Signaling, 22 Dec 2020 [doi.org/10.1089/ars.2020.8230]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, disabling, and complex multisystem illness of unknown etiology. The protein FGF21 regulates glucose homeostasis and lipid metabolism, and the protein NT-proBNP is strongly associated with an elevated cardiovascular risk; however, little is known about their role in ME/CFS patients. To address this gap, we explored the association between FGF21 and NT-proBNP and oxidative stress and inflammatory markers in ME/CFS.

Twenty-one ME/CFS patients and 20 matched healthy controls were included in the study. Participants filled out validated self-reported questionnaires on their current health status covering demographic and clinical characteristics. Plasma showed significantly decreased total antioxidant capacity and increased lipoperoxides levels (p = 0.009 and p = 0.021, respectively) in ME/CFS. These ME/CFS patients also had significantly increased levels of inflammatory cytokines (IL-1β, IL-6, IL-10, TNF-α, and C-reactive protein (p < 0.05 for all) but not for IL-8 (p = 0.833) in ME/CFS, indicating low-grade systemic inflammation status.

Circulating FGF21 and NT-proBNP levels were significantly higher (p < 0.0001 and p = 0.005, respectively) in ME/CFS patients than in healthy controls. Significantly positive correlations were found between NT-proBNP levels and IL-1β and IL-6 (p = 0.04 and p = 0.01) in ME/CFS patients but not between FGF21 and these cytokines. In contrast, no significant correlations were found for either FGF21 or NT-proBNP in controls.

These findings lead to the hypothesis that elevated FGF21 and NT-proBNP levels and the association between NT-proBNP and inflammation may be promising novel diagnostic and therapeutic targets in ME/CFS.

Read full article

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The prospects of the two-day Cardiopulmonary Exercise Test (CPET) in ME/CFS patients

Posted on 01/05/2021 by wames

The prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS patients: a meta-analysis, by  Eun-Jin Lim, Eun-Bum Kang, Eun-Su Jang and Chang-Gue Son in JCM Vol 9 Issue 12 Dec 2020 [10.3390/jcm9124040] (This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Diagnosis and Treatment)

 

Review abstract:

Background:

The diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is problematic due to the lack of established objective measurements. Post-exertional malaise (PEM) is a hallmark of ME/CFS, and the two-day cardiopulmonary exercise test (CPET) has been tested as a tool to assess functional impairment in ME/CFS patients. This study aimed to estimate the potential of the CPET.

Methods:

We reviewed studies of the two-day CPET and meta-analyzed the differences between ME/CFS patients and controls regarding four parameters: volume of oxygen consumption and level of workload at peak (VO2peak, Workloadpeak) and at ventilatory threshold (VO2@VT, Workload@VT).

Results:

The overall mean values of all parameters were lower on the 2nd day of the CPET than the 1st in ME/CFS patients, while it increased in the controls. From the meta-analysis, the difference between patients and controls was highly significant at Workload@VT (overall mean: −10.8 at Test 1 vs. −33.0 at Test 2, p < 0.05), which may reflect present the functional impairment associated with PEM.

Conclusions:

Our results show the potential of the two-day CPET to serve as an objective assessment of PEM in ME/CFS patients. Further clinical trials are required to validate this tool compared to other fatigue-inducing disorders, including depression, using well-designed large-scale studies.

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‘Tis the season – a poem by Carw

Posted on 01/04/2021 by wames

‘Tis the season –  a poem by Carw

 

Surprised, yet again, by Autumnal torpor,
and, in wondering what to do,
as is our pain,
I settle to observing rain,
and the consequent habits of snails,
and the number of blackbirds that take  to my lawn,
with their wet and muddy probing beaks.

A manifesto at least
would offer some certainty,
but in the absence of whence,
stuff happens,

I think I will give up thinking,
and accede to cycles,
there is just conceit in complications.
When hungry, I’ll eat,

and then check the rain
for humility and common sense.

Or I could  carp at the stars in the night,
are you listening, stars…
well pay attention…
you send me to sleep, do you hear?
Well might you hide behind that cloud.

Or, having recovered from that,
I could shout the dawn down
for waking me up.

I will not be buying
full spectrum daylight
in prescriptive Watts,
or in likelihood less,
Googling Amazon for darkness in June.

It’s so much better
to deliquesce.

Carw   Dec  2020

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In memoriam 2020

Posted on 12/31/2020 by wames

Gone, but not forgotten

 

As we approach 2021 we want to remember those we lost this year, including members of the ME community in Wales.

 

Helen Price

Helen was a long time member of the Carmarthenshire ME support group. She played an active role in spite of her illness. She was also a welcome contributor to the WAMES magazine, keen to share something helpful she had learnt with others. She died suddenly at home on 8th November and will be sorely missed by her husband, who also has ME, her adult children who live locally and many friends.

 

Sandra Ozolins    1966-2020

Sandra had severe ME for 20 years and associated chemical sensitivity for the last 10, which made it difficult for her to visit buildings to discuss her medical or social care needs. Even ambulances were a difficult environment for her and her health had been deteriorating for some time. She suffered a lot of misunderstanding and dismissal over the years from people whose job it was to help her. In spite of this she fought hard to explain severe ME to them. She contributed her experiences to the Hywel Dda ME stakeholder group, although it cost her a lot.

Her determination to improve care for people with ME went far beyond a desire to improve her own situation and she made sure that WAMES and a local disability access group were well informed, so we could share in her campaign. After the local hospital refused to make adjustments for her chemical intolerance so she could access care, her condition deteriorated further and she slipped away peacefully on 14th September.

Her death certificate gives her cause of death as ME, a fact that would have given her much satisfaction, after years of campaigning for recognition. She is survived by her husband in Carmarthenshire, and family in England.

Read Simon’s obituary

 

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Christmas greeting from WAMES 2020

Posted on 12/24/2020 by wames

Wishing you all a relaxed and enjoyable Christmas, with working phone lines and good broadband access, to make contact with family and friends possible!

 

 

Thank you for all the support you have given WAMES during a challenging year. The challenges will continue during 2021 but with each other’s support we can find a way through!

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