Research: POTS found in long-haul COVID-19 patients: similarities with ME/CFS

Posted on 03/03/2022 by wames

Orthostatic symptoms and reductions in cerebral blood flow in long-haul COVID-19 patients: similarities with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
by  C (Linda) MC van Campen, Peter C Rowe and Frans C Visser in Medicina 2022, 58(1), 28 [doi.org/10.3390/medicina58010028]  24 December 2021
(This article belongs to the Special Issue Chronic Fatigue Syndrome: From Clinical Observations to Unifying Hypotheses of Disease Mechanisms)

 

Research abstract:

Background and Objectives:

Symptoms and hemodynamic findings during orthostatic stress have been reported in both long-haul COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but little work has directly compared patients from these two groups. To investigate the overlap in these clinical phenotypes, we compared orthostatic symptoms in daily life and during head-up tilt, heart rate and blood pressure responses to tilt, and reductions in cerebral blood flow in response to orthostatic stress in long-haul COVID-19 patients, ME/CFS controls, and healthy controls.

Materials and Methods:

We compared 10 consecutive long-haul COVID-19 cases with 20 age- and gender-matched ME/CFS controls with postural tachycardia syndrome (POTS) during head-up tilt, 20 age- and gender-matched ME/CFS controls with a normal heart rate and blood pressure response to head-up tilt, and 10 age- and gender-matched healthy controls. Identical symptom questionnaires and tilt test procedures were used for all groups, including measurement of cerebral blood flow and cardiac index during the orthostatic stress.

Results:

There were no significant differences in ME/CFS symptom prevalence between the long-haul COVID-19 patients and the ME/CFS patients. All long-haul COVID-19 patients developed POTS during tilt. Cerebral blood flow and cardiac index were more significantly reduced in the three patient groups compared with the healthy controls. Cardiac index reduction was not different between the three patient groups. The cerebral blood flow reduction was larger in the long-haul COVID-19 patients compared with the ME/CFS patients with a normal heart rate and blood pressure response.

Conclusions:

The symptoms of long-haul COVID-19 are similar to those of ME/CFS patients, as is the response to tilt testing. Cerebral blood flow and cardiac index reductions during tilt were more severely impaired than in many patients with ME/CFS.

The finding of early-onset orthostatic intolerance symptoms, and the high pre-illness physical activity level of the long-haul COVID-19 patients, makes it unlikely that POTS in this group is due to deconditioning. These data suggest that similar to SARS-CoV-1, SARS-CoV-2 infection acts as a trigger for the development of ME/CFS.

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Research review: Unknown aetiology: The case of ME/CFS and beyond

Posted on 03/02/2022 by wames

Current insights into complex Post-infection Fatigue Syndromes with unknown Aetiology: The case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and beyond, by Francisco Westermeier, Eliana Mattos Lacerda,  Carmen Scheibenbogen and  Nuno Sepúlveda in Front. Med., 24 February 2022 [doi.org/10.3389/fmed.2022.862953]

 

Excerpts from journal editorial:

With the WHO notification of the COVID-19 as a pandemic on March 11, 2020, our third and final objective was to debate for the first time about ME/CFS as a sequela of post-SARS-CoV-2 infections. The graphical summary of all the contributions received is shown in Figure 1.

Old and new viral triggers for ME/CFS:

  • herpesviruses
  • enteroviruses
  • Ross River virus, which is an arbovirus endemic to Australia, Papua New Guinea, and other islands in the South Pacific
  • herpesviruses in patients from the United Kingdom ME/CFS biobank
  • SARS-CoV and SARS-CoV-2

Other studies published elsewhere provide further evidence that some long-COVID patients suffer from ME/CFS and, as such, there is a window of opportunity to improve the understanding of both conditions.

New perspectives on disease pathology and treatment

  • the same “vicious circle” between inflammation, oxidative and nitrosative stress, and low thyroid hormone function is operating in both some ME/CFS and patients in an intensive care unit (ICU)
  • pre-disease and early disease call for rehabilitation strategies that could avoid long-term co-morbidity while the management of the established disease should be more holistic and tailored to the specific needs of each patient
  • vascular abnormalities in ME/CFS – endothelial dysfunction
  • endothelial dysfunction and inadequate regulation of blood flow resulting in hypoperfusion of the brain and muscles
  • autoantibodies directed against vasoregulatory receptors contribute to the vascular dysregulation in ME/CFS
  • target autoreactive B cells or autoantibodies
  • the use of drugs that help regulating vascular function is another possibility to treat patients with ME/CFS.

Conclusions
In conclusion, this Research Topic collects further pieces of evidence about how various viruses including SARS-CoV-2 can trigger ME/CFS. The neglect of research in ME/CFS during the last decades has left patients, carers, and clinicians alike adrift without a licensed drug to use in the disease.

On the one hand, the COVID-19 pandemic will result in an unprecedented explosion of ME/CFS cases. At the same time, this pandemic is the perfect storm that can motivate different stakeholders, including funders and clinicians, to take the necessary steps to accelerate research on ME/CFS and other post-infectious syndromes. If taken, these steps will bring hope to all those outstanding patients who have been homebound or even bedridden for many years but neglected by national health authorities.

Read the full editorial

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Management: Lessons from ME/CFS for long COVID: Heart rate monitoring to manage PESE (PEM)

Posted on 02/28/2022 by wames

Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID:

Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation, by Todd E Davenport, Staci R Stevens, Jared Stevens, Christopher R Snell, J Mark Van Ness in JOSPT February 23, 2022 [doi.org/10.2519/jospt.blog.20220223]

 

Blog post extract:

Summary

A combination of HRM (Heart Rate Monitoring) and symptom journaling will best assist patients and clinicians to track outcomes and adjust the HRM program as needed.

The patient and clinician should collaborate to determine the “Key 3” symptoms of PESE that are most functionally limiting to the patient. Symptoms may be assessed using a formalized questionnaire or they may be qualitatively determined based on discussion with the patient. The presence and severity of Key 3 symptoms can be reassessed over time to determine the effectiveness of the HRM program.

The Rationale for Heart Rate Monitoring

…PESE is characterized by aerobic system dysfunction. Pacing based on heart rate can help the patient avoid the dysfunctional aerobic system by keeping their activity intensity at a level anaerobic metabolism will dominate.

Heart rate monitoring (HRM) provides an element of predictive potential for the patient to understand when their activities exceed physiological limits and eventually may result in PESE. In this post, we will discuss activity pacing to manage PESE that is based on HRM.

Read full article for information about:

  • Selecting the Heart Rate Monitor
  • Identifying the Ventilatory Anaerobic Threshold Heart Rate
  • Some Pitfalls and Pearls of Heart Rate Monitoring

Lessons from ME/CFS…:

Read Part 1: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity

Read Part 2: Physiological characteristics during acute exercise are abnormal in people with Postexertional Symptom Exacerbation

Read Part 3: “Energy System First Aid” for People With Post Exertional Symptom Exacerbation

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#LearnFromME – theme for #WorldMEDay

Posted on 02/28/2022 by wames

#LearnFromME on #WorldMEday

 

 

2022 is set to be another year of a global health crisis that has caused a wave of post-viral disease, specifically the collection of symptoms known as “Long COVID” which overlap with ME.

For decades people with ME have been unheard, but Long COVID has helped to put a spotlight on our common post-viral disease.

#LearnFromME will work to bring the knowledge people with ME and health professionals working in this field have to the wider world when we all come together to shine a light on ME on World ME Day

Why learn from ME? our experiences can help each other

People with ME are experts in our own illness and experience. By providing platforms for our voices across the world, we can share that collective expertise.

Most of us have a strong desire to be involved in research. BUT there is a woeful lack of investment in ME research across the globe.

It is only through research, which chooses to #LearnFromME, that we can find treatments and one day a cure for ME and related illnesses like Long COVID.

Why learn from ME? our experiences can help healthcare professionals to help us

And now in Wales health and social care professionals have a NICE guideline on diagnosis and management which acknowledges the nature and severity of ME.  WAMES will continue to run our #ImplementNICEmecfs campaign alongside the #LearnFromME campaign.

Why learn from ME? to help others with post-viral illness

Post-viral illness is not new. We could learn so much about Long COVID if we recognised the knowledge and experience we already have from other post-viral illnesses like ME!

More information

More information will be released in the run up to World ME Day on May 12th so that you can take action to help the world #LearnFromME.

Find out more about the campaign by following WAMES’ social media and visiting the World ME Day website.

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Announcing the first ever World ME day – May 12th 2022

Posted on 02/28/2022 by wames

#WorldMEday 2022

 

The World ME Alliance, a collaborative of national organisations from across the globe, is launching World ME Day on 12th May this year.

All organisations everywhere are invited to join this effort to raise awareness and campaign together on Myalgic Encephalomyelitis (ME) on a common theme.

The theme for the first year of World ME Day is #LearnFromME

 

WAMES is proud to be a partner in the World ME Day initiative.

By working with others round the world we aim to raise the profile of ME at home and abroad, especially by making the voice of people with ME heard in global institutions like the World Health Organization (WHO).

What’s different about a World Day?

This campaigning day follows in the footsteps of other successful initiatives such as World Cancer Day and World MS Day. By focusing on one specific day, and sharing materials, logos and content, these campaigns have grown to have a major impact.

The aim is to create a shared library of resources that all organisations can use to promote their own work around World ME Day. This will demonstrate the incredible global collaboration and unity that the ME community can achieve.

Why May 12th?

May 12th has been designated as ME Awareness Day or  International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).

May 12th honours the birthday of Florence Nightingale, founder of modern nursing. She established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS.

Find out more about the campaign by visiting the World ME Day website 

National Organisations are invited to join the World ME Alliance but anyone can join in World ME Day! [8 languages so far!]

See also:

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Paediatric long COVID & ME/CFS: overlaps & opportunities

Posted on 02/24/2022 by wames

Pediatric long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue
Syndrome: overlaps and 0pportunities, by Vikram GR Siberry MS and Peter C Rowe MD in The Pediatric Infectious Disease Journal: February 4, 2022  [doi:10.1097/INF.0000000000003477]

 

Extracts from Commentary:

Zimmermann et al provide a masterful application of Spodick’s exhortation. Their review of the existing evidence regarding long COVID in children enumerates important methodologic challenges in interpreting this literature… Despite such limitations, it is clear that pediatric patients are at risk for prolonged symptoms following acute SARS-CoV-2 infection.

Although many persistent symptoms, such as anosmia, dysgeusia and shortness of breath are unique to the post-COVID state, many other symptoms such as fatigue, cognitive dysfunction, lightheadedness and postexertional malaise overlap with symptoms found in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

In this commentary, we review case definitions for long COVID and ME/CFS, emphasize recent research findings on the biologic basis of ME/CFS, discuss the overlap with long COVID, and consider opportunities posed by the pandemic to improve the understanding of both conditions.

Overlaps between Long COVID and ME/CFS

The overlap of symptoms between long COVID and ME/CFS is substantial and includes fatigue, postexertional malaise, cognitive impairment, sleep disturbance and lightheadedness. Both conditions are more frequent in females than males. Neither condition can be reliably diagnosed with laboratory findings, although such testing
can help exclude other similar conditions.

Diagnosis for both consists of a thorough history to elicit symptoms along with a full physical exam; to identify orthostatic intolerance, we recommend at least a 10-minute period of orthostatic stress, such as with a passive standing test. Treatment focuses on symptom management.

While no single pharmacologic agent is effective for all long COVID or ME/CFS patients, this should not encourage therapeutic nihilism, as many effective treatments exist for the common features such as orthostatic intolerance, pain, headaches and insomnia.

More work will be needed to identify whether the prevalence of orthostatic intolerance is as high in long COVID as it is in ME/CFS, and whether the risk factors for pediatric ME/CFS (including allergic inflammation, female sex, peak onset in adolescence and heritable risk factors such as joint hypermobility) apply to post-COVID conditions.

Read full article – pdf

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Lessons from ME/CFS for long COVID: “Energy System First Aid” for people with PESE (aka PEM)

Posted on 02/24/2022 by wames

Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID

 

Part 3: “Energy System First Aid” for People With Post Exertional Symptom Exacerbation, by Todd E Davenport, Staci R Stevens, Jared Stevens, Christopher R Snell, J Mark Van Ness in JOSPT, February 16, 2022 [https://doi.org/10.2519/jospt.blog.20220216]

 

Blog post extract:

In a previous post, we demonstrated that the symptoms and physiology of postexertional symptom exacerbation (PESE) are inconsistent with deconditioning. PESE worsens in response to exercise and demonstrates a variable clinical presentation. We will build a clinical rationale for energy system first aid as a place to start helping people with PESE.

Summary

First aid is an important part of rehabilitation. Energy system first aid for people with PESE focuses on helping patients to use the metabolic systems that function well, and to limit the use of the aerobic system that current evidence suggests is functioning abnormally. Working together, patients and clinicians can use widely available tools and simple insights from physiological data to promote improvements in symptoms and functioning.

How to Explain Energy System First Aid to Patients

Recommendations for energy first aid in people with PESE have been made based on symptom acuity and irritability. The energy envelope hypothesis is a patient-friendly way to summarize energy system first aid for patients (FIGURE). A patient’s energy envelope is the physiological capacity for function at any moment in time. Although not curative, people can be coached to stay within their energy envelopes to avoid accessing a dysfunctional aerobic energy system. In turn, adherence to the energy envelope can improve predictability of daily energy level and the capacity for function.5

Heart rate monitoring can be an effective, objective way for patients to monitor the intensity of their daily activities, stay within the energy envelope, and predict PESE before it occurs. The predictive ability of heart rate monitoring is important because of the time delay between an exacerbating activity and resultant PESE.

Read the full blog post

Read Part 1: Postexertional Symptom Exacerbation is an Abnormal Response to Exercise/Activity

Read Part 2: Physiological characteristics during acute exercise are abnormal in people with Postexertional Symptom Exacerbation

Read Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation

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Treatment research: …restoration using Naltrexone in natural killer cells of ME/CFS patients

Posted on 02/23/2022 by wames

Impaired TRPM3-dependent calcium influx and restoration using Naltrexone in natural killer cells of myalgic encephalomyelitis/chronic fatigue syndrome patients, by Natalie Eaton-Fitch, Stanley Du Preez, Hélène Cabanas, Katsuhiko Muraki, Donald Staines & Sonya Marshall-Gradisnik in Journal of Translational Medicine volume 20, Article number: 94 (2022)

 

Research abstract:

Background:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious disorder of unknown aetiology. While the pathomechanism of ME/CFS remains elusive, reduced natural killer (NK) cell cytotoxic function is a consistent immunological feature. NK cell effector functions rely on long-term sustained calcium (Ca2+) influx.

In recent years evidence of transient receptor potential melastatin 3 (TRPM3) dysfunction supports the hypothesis that ME/CFS is potentially an ion channel disorder. Specifically, reports of single nucleotide polymorphisms, low surface expression and impaired function of TRPM3 have been reported in NK cells of ME/CFS patients.

It has been reported that mu (µ)-opioid receptor (µOR) agonists, known collectively as opioids, inhibit TRPM3. Naltrexone hydrochloride (NTX), a µOR antagonist, negates the inhibitory action of µOR on TRPM3 function. Importantly, it has recently been reported that NTX restores impaired TRPM3 function in NK cells of ME/CFS patients.

Methods
Live cell immunofluorescent imaging was used to measure TRPM3-dependent Ca2+ influx in NK cells isolated from n = 10 ME/CFS patients and n = 10 age- and sex-matched healthy controls (HC) following modulation with TRPM3-agonist, pregnenolone sulfate (PregS) and TRPM3-antaognist, ononetin. The effect of overnight (24 h) NTX in vitro treatment on TRPM3-dependent Ca2+ influx was determined.

Results
The amplitude (p < 0.0001) and half-time of Ca2+ response (p < 0.0001) was significantly reduced at baseline in NK cells of ME/CFS patients compared with HC. Overnight treatment of NK cells with NTX significantly improved TRPM3-dependent Ca2+ influx in ME/CFS patients. Specifically, there was no significance between HC and ME/CFS patients for half-time response, and the amplitude of Ca2+ influx was significantly increased in ME/CFS patients (p < 0.0001).

Conclusion
TRPM3-dependent Ca2+ influx was restored in ME/CFS patients following overnight treatment of isolated NK cells with NTX in vitro.

Collectively, these findings validate that TRPM3 loss of function results in altered Ca2+ influx supporting the growing evidence that ME/CFS is a TRP ion channel disorder and that NTX provides a potential therapeutic intervention for ME/CFS.

Research features: Understanding the intricacies of ion channels in ME/chronic fatigue syndrome – The background to the work of Griffith University’s research into ion channel dysfunction in ME/CFS and their search for treatments.

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Pillow writers: International ME/CFS writers’ group

Posted on 02/23/2022 by wames

Writing from our ME lives – the Pillow writers

 

An international group of writers with ME and long COVID invite you to join them.

Pillow writers is a friendly, supportive encouraging space where we share our thoughts on chronic illness, poetry and creative writing.

Find them on Facebook

See the website for:

  • poems
  • haikus
  • art
  • prose
  • the January 2022 Writers Salon

 

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Social research: The circuit of symbolic violence in CFS/ME

Posted on 02/22/2022 by wames

The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study, by Xavier Gimeno Torrent in Health Care for Women International Volume 43, 2022 – Issue 1-3

 

Research abstract: 

Objective

How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general population? The answer given to this question is based on Pierre Bourdieu’s analyzes of symbolic violence.

Method

The ‘letters to the editor’ by CFS patients to three national Spanish newspapers were subjected to various qualitative and quantitative analyzes.

Results

Based on the qualitative analyzes and their theoretical interpretation, 13 mechanisms of symbolic violence were identified: non-recognition, institutionalized un-care, condescension, authorized imposition of illegitimate verdicts, delegitimization, disintegration, imposition of discourse, euphemization, silencing, invisibilization, isolation, uncommunication, and self-blaming.

Multiple Correspondence Analysis made it possible to identify that the structural mechanisms (non-recognition, disintegration) were combined with the most symbolic ones, which came to the forefront producing the observed effects of symbolic violence. The 13 clusters obtained in the Agglomerative Hierarchical Clustering confirmed this result.

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