Adolescent & young adult ME/CFS after confirmed or probable COVID-19

Posted on 05/20/2021 by wames

Adolescent and young adult ME/CFS after confirmed or probable COVID-19, by Lindsay S Petracek, Stacy J Suskauer, Rebecca F Vickers, Neel R Patel, Richard L Violand, Renee L Swope, Peter C Rowe in Frontiers in Medicine Vol 8, p 668944 , April 29, 2021 [doi.org/10.3389/fmed.2021.668944]

 

Research abstract:

Introduction:

Fatigue is a common acute symptom following SARS-CoV-2 infection (COVID-19). The presence of persistent fatigue and impaired daily physical and cognitive function has led to speculation that like SARS-CoV-1 infection, COVID-19 will be followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods and Results:

We describe three adolescent and young adult patients who had confirmed or probable COVID-19 infections early on during the pandemic and were referred for evaluation to the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center. All patients reported orthostatic intolerance symptoms within the first 2 weeks of illness, and 10-min passive standing tests were consistent with postural tachycardia syndrome. After 6 months of illness, all three patients met criteria for ME/CFS.

Clinical features of interest included strong histories of allergies in all three patients, two of whom had elevations in plasma histamine. Each demonstrated limitations in symptom-free range of motion of the limbs and spine and two presented with pathological Hoffman reflexes. These comorbid features have been reported in adolescents and young adults with ME/CFS.

Conclusion:

ME/CFS can be triggered by COVID-19 in adolescents and young adults.

Further work is needed to determine the pathogenesis of ME/CFS after COVID-19 and optimal methods of treating these patients. Our preliminary study calls attention to several comorbid features that deserve further attention as potential targets for intervention. These include neuromuscular limitations that could be treated with manual forms of therapy, orthostatic intolerance and POTS for which there are multiple medications and non-pharmacologic therapies, treatable allergic and mast cell phenomena, and neurologic abnormalities that may require specific treatment. Larger studies will need to ascertain the prevalence of these abnormalities.

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Elements of suffering in ME/CFS… in the severely & very severely affected

Posted on 05/19/2021 by wames

Elements of suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the experience of loss, grief, stigma, and trauma in the severely and very severely affected, by Patricia A Fennell, Nancy Dorr and Shane S George in Healthcare 2021, 9(5), 553; [doi.org/10.3390/healthcare9050553] 9 May 2021 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

 

Research abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness.

This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences.

The four phases represent a progression of coping. They are crisis, stabilization, resolution, and integration. The model allows for therapeutic intervention in a flexible phase-specific manner so that individuals may integrate their illness into a meaningful life despite physical limitations.

We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients.

Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

5.2. How Health Care Professional Can Help

While pilot assessment and treatment programs, in all domains, are underway worldwide, patients, their families and friends live and suffer with ME/CFS. They struggle to have whole lives and clinicians and caregivers struggle to help them manage. How can health care professionals help?
During the brief time available in a patient visit, here are some important things health care professionals can do, in addition to the medical protocols:

  • Demonstrate to patients an appreciation and understanding of the ME/CFS experience;
  • Convey to patients the compassion that comes from an appreciation of what the severely and very severely affected patient is experiencing;
  • Communicate to patients that you believe what they are saying about their experiences and symptoms;
  • As time and opportunity permits, be open to learning more about this poorly understood syndrome;
  • Have available a short list of therapists and specialists, including those who do trauma work, grief work, family therapy, couples therapy, sleep hygiene and occupational therapy, for referral, or to be part of the treatment team;
  • Become familiar with the suicide hotline;
  • Have available a list of patient support groups for information, education and support;
  • Have a list of available support groups and assistance for caregivers;
  • Remember that it is very difficult to care for those who do not recover in any conventional sense and clinician resources for support are always a good consideration as well.

Severely and very severely affected patients suffer profoundly. In order for health care professionals to adequately treat their patients, they need to understand all that composes and creates their suffering: struggling with uncertainty, ambiguity, chronicity, stigmatization, trauma, and rejection.

These elements create losses for the patient and they subsequently grieve these many and varied losses, including lost friends, family, career, and life as they knew it (or imagined it). Not only do the patients grieve their losses and traumas, but so do the loved ones around them—spouses, parents, and children. Thus, in order to assess and treat, the suffering must first be described, understood, witnessed, and, most importantly, abided.

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If you are living with ME – #YouAreNotAlone #MillionsMissing

Posted on 05/13/2021 by wames

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ME Awareness day 12th May 2021 – Post-viral illness is not new!

Posted on 05/12/2021 by wames

May 12th is International ME Awareness day

International ME Awareness Day May 12th. ME prevalence: Wales 13,00; UK 240.000; World 17 million.0

 

During 2020 and 2021 the world has been shocked, particularly in the West, by the indiscriminate damage that a virus can have.  Chronic post-viral illness has been catapulted into the spotlight.

But post-viral illness is not new.  Multiple viruses have triggered the majority of cases of Myalgic Encephalomyelitis (ME/CFS).  13,000 people in Wales are thought to be affected by the illness, 17 million globally. Following COVID-19 that number is likely to grow.

During 2021 WAMES is sharing through our website, social media and galleries:

  • Key facts about ME/CFS
  • Quotes from people experiencing and working with ME/CFS in Wales

A lot is not known about ME/CFS or long COVID but what is known, needs to be acted on.

Wales has been been a healthcare desert for people with ME. It is time to take action to change that!

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Humility and acceptance: working within our limits with Long COVID & ME/CFS

Posted on 05/11/2021 by wames

Humility and acceptance: working within our limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Simon Decary, Isabelle Gaboury, Sabrina Poirier, Christiane Garcia, Scott Simpson, Michelle Bull, Darren Brown, Frederique Daigle in Journal of Orthopaedic & Sports Physical Therapy Vol 51, #5, pp 197-200, April 30, 2021

 

Article abstract:

The term long COVID was coined by patients to describe the long-term consequences of COVID-19. One year into the pandemic, it was clear that all patients-those hospitalized with COVID-19 and those who lived with the disease in the community-were at risk of developing debilitating sequelae that would impact their quality of life.

Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight postviral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly similar to those of myalgic encephalomyelitis (ME). Community-based physical therapists, including those in private practice, unaware of safety issues, are preparing to help an influx of patients with long COVID.

In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.

The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Community to the Rescue

One community that understands the impact of living with prolonged debilitating symptoms and multisystem dysfunction from postviral illness is the myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) community. Myalgic encephalomyelitis/ chronic fatigue syndrome is a severe multisystemic disease characterized by the hallmark symptom of postexertional malaise (PEM), a disabling and often delayed exhaustion disproportionate to the effort exerted. Millions of patients live with ME/CFS, and in 80% of them the illness followed an infection.

The scale of the COVID-19 pandemic concerns the ME/CFS community, because the postviral illness will affect many. In response to the increasing emphasis on exercise-based rehabilitation for long COVID, those in the ME/CFS community have raised their voices to warn clinicians of the dangers of recommending such protocols.

The history of ME/CFS with exercise is one of false hope.

More than 3 decades of trying exercise in this population can be summed up in one sentence: exercise can be harmful, sometimes life threatening, and should be avoided.

Postexertional malaise manifests as an abnormal physiological response to physical or cognitive exertion. It can be triggered after a daily activity, such as a shower, and result in a severe combination of flu-like and neurological symptoms and crushing fatigue. In most patients, the onset of PEM is often delayed by 24 to 72 hours, followed by unpredictable severity of immune, neurological, cognitive, and gastrointestinal symptoms that may persist for days, weeks, or permanently. Anecdotes of PEM are emerging from people living with long COVID.

The organization Patient-Led Research for COVID-19 describes PEM as a persistent symptom of COVID-19. In an online survey of 3762 people living with long COVID, 89.1% of respondents experienced “worsening or relapse of symptoms after physical or mental activity during COVID-19 recovery.” Postexertional malaise was most often triggered by physical activities and exercise. Close to 75% of people living with long COVID still experienced PEM after 6 months. Even accounting for sampling biases from this online survey, this description of symptoms after the 6-month mark makes the overlap between diagnoses of long COVID and ME/CFS a serious possibility. The potential global scale of people affected is staggering.

First, Do No Harm

The beloved “exercise is medicine” maxim is rooted in ancient Greek medicine,12 as is the oath of “do no harm.” Clinicians may be promoting a dangerous message that could lead people with long COVID down a path of endless cycles of overexertion and relapse. We propose 2 key, immediate patient-safety actions for all clinicians, including physical therapists in private practices, who are involved in delivering care for people with long COVID and ME/CFS.

Screen and continuously monitor for the presence or development of PEM during follow-up of people living with long COVID and ME/CFS. We propose that clinicians use the validated 10-item DePaul Symptoms Questionnaire (Appendix A in Cotler et al2). This questionnaire helps clinicians describe the frequency and intensity of PEM. For clinicians involved in developing service pathways for long COVID, an extended form is also available and should be combined with additional assessment procedures, such as orthostatic intolerance testing.

To all people living with long COVID and ME/CFS, promote the message “Stop. Rest. Pace.”

This approach, proposed by the ME/CFS community, emphasizes that clinicians’ main advice to patients should be to avoid continuous overexertion cycles of PEM and focus on rest and energy pacing. Pacing is an approach to activity management used within ME/CFS to prevent triggering PEM and may be acceptable for people living with long COVID who experience relapses with exercise.

Read the full article

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From DNA to drug development. Five success stories show the potential of DecodeME

Posted on 05/09/2021 by wames

DecodeME Study blog: From DNA to drug development. Five success stories show the potential of DecodeME

 

How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes?

One way scientists can now look for answers is with very large DNA studies, like DecodeME. This fairly new approach is already giving insights and pointing to treatments for a range of illnesses, including rheumatoid arthritis, type II diabetes and even severe Covid.

The clue lies in our DNA

DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.

DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.

Tiny differences in our DNA can help pinpoint what’s going wrong in our bodies. And understanding what’s going wrong biologically is the starting point for finding treatments.

DNA is the master molecule of life, storing all the information needed to make and run the human body. The information is stored in DNA using chemical letters. There are only four letters, but our DNA contains a sequence of 3 billion of them, like a very long book.

Mostly, our sequence of letters is exactly the same as those of the next person. But for around a million positions in the book (fewer than one in every one thousand), the letter can differ from person to person.

Scientists then compare these DNA letter differences between people with an illness, such as ME/CFS, and healthy people. Often, they find that a few of these differences are slightly more common in people with a particular disease than those without it.

These DNA differences, perhaps only a dozen or two, are clues to what is going wrong in an illness.

Here are five examples where the differences found by big DNA studies have helped scientists to understand the biological causes of an illness and to develop treatments.

Summary: 5 big DNA study successes

Big DNA studies are still relatively new and the science that drives them is developing all the time. But these five examples show the power of the approach.

  1. In rheumatoid arthritis, it led to ongoing development of new drugs that aim to tackle the root of the problem.
  2. It led to the discovery that several autoimmune diseases could be treated with drugs already developed for other diseases.
  3. In Type II diabetes, a surprising discovery led to development work on a new drug.
  4. In Alzheimer’s disease, DNA research indicated that researchers should look for answers in the brain’s “support cast” of cells.
  5. And in Covid-19, the most devastating illness to strike the world in over 100 years, a DNA study has already provided powerful clues to scientists looking for life-saving drugs.

Looking for answers across human biology

One of the main advantages of big DNA studies is that they look across all 3 billion letters that make up the DNA book of life. This means that they are effectively scanning the whole of human biology.

Read more 

This is particularly important for a disease like ME/CFS where we know so little – you don’t even need to know what you’re looking for.

There are no guarantees with any research study, but we hope that DecodeME will make a big difference.

First, we need to find 20,000 people to take part. If you would like to be one of them, please sign up and you can be first in line when we start recruiting in the autumn.

Sign up

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ME/CFS: whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS

Posted on 05/07/2021 by wames

ME/CFS: whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS, by Donna Brown, Camille Birch, Jarred Younger, Elizabeth Worthey in Molecular Genetics and Metabolism Vol 132, Supp 1, April 2021, Pages S194-S195

 

Article extract:

Currently, there exists at least 2 widely used diagnostic standards; the Canadian (Carruthers, 2011) and the CDC 1994 criteria (Fukuda, 2004) for ME/CFS. The variety of diagnostic criteria result in a range of estimates of prevalence; most recently using the CDC-1994 criteria and meta-analysis the prevalence was assessed at 0.89% (Lim, 2020). Even with these standards in place, current patients can be misdiagnosed.

Glycogen Storage Disease

Hypothesizing that ME/CFS is the result of an intrinsic genetic defect (s) and each patient is best considered individually, we performed whole genome sequencing (WGS) combined with informatics approaches to identify molecular variants of interest in a pilot cohort of ME/CFS patients. Among this pilot we identified a patient harboring a likely pathogenic ENO3 variant. Other variants in ENO3, the betaenolase gene, are identified to be affected in patients with glycogen storage disease type 13 (GSD13), a rare autosomal recessive adult onset disorder.

Symptoms of GSD13 include exercise intolerance and muscle pains and it is thought to present with symptoms milder than other glycogen storage diseases. This patient reports feeling pain, spasms, and heaviness in her limbs (especially her legs), restricting her physical activity to once or twice a week, and has problems with concentration and other complaints typical of a subset of ME/CFS patients.

It has been estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS and yet little is known about the molecular underpinnings of disease. Clearly, the time has come to consider genomic sequencing as part of the standard of care to diagnose and classify these patients.

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Recovery from paediatric CFS – definitions are highly variable

Posted on 05/06/2021 by wames

Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison, by Yasmin Moore, Teona Serafimova, Nina Anderson, Hayley King, Alison Richards, Amberly Brigden, Parisa Sinai, Julian Higgins, Caitlin Ascough, Philippa Clery, Esther M Crawley in Arch Dis Child. 2021 Apr 12 [DOI: 10.1136/archdischild-2020-320196]

 

Review abstract: 

Background:

Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery.

Methods:

This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover.

Results:

Twelve papers (10 studies) were identified, involving 826 patients (range 23-135). Recovery rates were highly varied, ranging between 4.5% and 83%. Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery.

Implications:

Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child’s own perspective with a single self-reported measure.

If composite measures are used for research, there should be agreement on the core outcome set used.

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Long COVID & ME/CFS – a systemic review & comparison of clinical presentation & symptomatology

Posted on 05/05/2021 by wames

Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a systemic review and comparison of clinical presentation and symptomatology, by Timothy L Wong, Danielle J Weitzer in Medicina 2021, 57(5), 418; [doi.org/10.3390/medicina57050418]

 

Review abstract:

Background and Objectives:

Long COVID defines a series of chronic symptoms that patients may experience after resolution of acute COVID-19. Early reports from studies with patients with long COVID suggests a constellation of symptoms with similarities to another chronic medical illness-myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

A review study comparing and contrasting ME/CFS with reported symptoms of long COVID may yield mutualistic insight into the characterization and management of both conditions.

Materials and Methods:

A systemic literature search was conducted in MEDLINE and PsycInfo through to 31 January 2021 for studies related to long COVID symptomatology. The literature search was conducted in accordance with PRISMA methodology.

Results:

Twenty-one studies were included in the qualitative analysis. Long COVID symptoms reported by the included studies were compared to a list of ME/CFS symptoms compiled from multiple case definitions. Twenty-five out of 29 known ME/CFS symptoms were reported by at least one selected long COVID study.

Conclusions:

Early studies into long COVID symptomatology suggest many overlaps with clinical presentation of ME/CFS. The need for monitoring and treatment for patients post-COVID is evident. Advancements and standardization of long COVID research methodologies would improve the quality of future research, and may allow further investigations into the similarities and differences between long COVID and ME/CFS.

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Development of an inertial measurement-based assessment of disease severity in CFS

Posted on 05/05/2021 by wames

Development of an inertial measurement-based assessment of disease severity in Chronic Fatigue Syndrome, by Turner Palombo, Suzanne Vernon, Shad Roundy in Digital Commons (Utah Space Grant Consortium grant) 2020 Paper 11. Published May 2021

 

Research abstract: 

While myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is relatively new and poorly understood, a recent upsurge in research has identified the disease’s core symptoms, including post-exertional malaise and orthostatic intolerance. The FDA has yet to approve any treatments for ME/CFS, partially due to a lack of validated efficacy
endpoints.

The central focus of this research is to develop ME/CFS efficacy endpoints using a non-invasive, inertial measurement-based approach. Accessible endpoints will provide a way to properly evaluate potential treatments for ME/CFS. Using a Kalman filter, inertial measurement unit (IMU) data can be converted to optimized leg angle estimates. These
angle estimates can then be converted to personalized daily measurements of upright activity, referred to as uptime.

In a six-day, case-control study conducted by the Bateman Horne Center, uptime was measured for 15 subjects (five controls, five moderate-level ME/CFS, and five severe-level ME/CFS).  Analysis of these uptime scores indicated that each group spends different proportions of their days upright and active. This result shows that uptime can accurately
determine disease severity and is, therefore, a reliable endpoint for evaluating ME/CFS treatment efficacy.

Conclusion

This research proves the value of uptime as an objective replacement for HUA. Analysis of collected uptime data indicates that disease groups spend different proportions of the
day upright and active. Healthy individuals are expected to have weekly uptime scores above 30%, subjects with moderate ME/CFS are expected to have weekly uptime scores between 20% and 30%, and subjects with severe ME/CFS are expected to have weekly uptime scores below 20%.

Another objective of our study was to evaluate the effects of PEM brought on by the NASA Lean Test. Our results showed no change in uptime after the NASA Lean Test. Although this contradicts our expectations, we have confirmed that this test is humane; patients with ME/CFS do what they can to avoid stress-causing exertion, but we have seen that this test does not cause a drastic decrease in uptime—indicating that they aren’t significantly hurt by the test. Future studies should incorporate home-visits to reduce the stress caused by participation, thereby ensuring that PEM is only induced by researchers during the
Lean Test.

Accurate uptime measurements will become invaluable for healthcare providers in assisting ME/CFS patients. Furthermore, uptime provides a method for pharmaceutical companies and independent researchers to prove the efficacy of their treatments—a critical step towards receiving FDA-approval. The BHC’s data shows that patients with severe ME/CFS are limited to a bed or reclining chair for all but five hours each day; increasing this number would be life-changing.

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