Research: Long-term C-19 sequelae in adolescents: the overlap with OI & ME/CFS

Posted on 03/28/2022 by wames

Long-term COVID 19 sequelae in adolescents: the overlap with orthostatic intolerance and ME/CFS, by Amanda K Morrow, Laura A Malone, Christina Kokorelis, Lindsay S Petracek, Ella F Eastin, Katie L Lobner, Luise Neuendorff & Peter C Rowe in Curr Pediatr Rep. 2022 Mar 9:1-14

 

Review abstract:

Purpose 

To discuss emerging understandings of adolescent long COVID or post-COVID-19 conditions, including proposed clinical definitions, common symptoms, epidemiology, overlaps with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and orthostatic intolerance, and preliminary guidance on management.

Recent Findings

The recent World Health Organization clinical case definition of post-COVID-19 condition requires a history of probable or confirmed SARS-CoV-2 infection, with symptoms starting within 3 months of the onset of COVID-19. Symptoms must last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms of the post-COVID-19 condition include, but are not limited to, fatigue, shortness of breath, and cognitive dysfunction. These symptoms generally have an impact on everyday functioning.

The incidence of prolonged symptoms following SARS-CoV-2 infection has proven challenging to define, but it is now clear that those with relatively mild initial infections, without severe initial respiratory disease or end-organ injury, can still develop chronic impairments, with symptoms that overlap with conditions like ME/CFS (profound fatigue, unrefreshing sleep, post-exertional malaise, cognitive dysfunction, and orthostatic intolerance).

Summary

We do not yet have a clear understanding of the mechanisms by which individuals develop post-COVID-19 conditions. There may be several distinct types of long COVID that require different treatments. At this point, there is no single pharmacologic agent to effectively treat all symptoms. Because some presentations of post-COVID-19 conditions mimic disorders such as ME/CFS, treatment guidelines for this and related conditions can be helpful for managing post-COVID-19 symptoms.

Conclusion

Emerging data confirm that prolonged symptoms can develop following even mild or asymptomatic initial SARS-CoV-2 infection. The most common symptoms are fatigue, cognitive dysfunction, and headaches. As ascertainment for orthostatic intolerance in these patients improves, lightheadedness is becoming more commonly recognized. A proportion of long COVID patients meet the criteria for ME/CFS at 6 months. At present, management of post-COVID conditions focuses primarily on addressing symptoms, borrowing management strategies from conditions like OI and ME/CFS.

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WAMES AGM 11 April 2022

Posted on 03/23/2022 by wames

WAMES Annual General Meeting

 

WAMES will be holding our annual business meeting via Skye on Monday 11th April at 4pm. This is the opportunity for members to elect officers, oversee the finances and identify priorities for the coming year.

If you would like to become a member of WAMES and help us keep on course with our mission – to be the voice of people affected by ME in Wales – please contact Sharon sharon@wames.org.uk

She will also be happy to discuss any of our volunteering needs if you would like to lend a hand in other ways.

Our Vision

Our Vision is for a Wales where adults and children with ME, CFS and PVFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.

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Sunflower lanyards for invisible disabilities

Posted on 03/22/2022 by wames

What is the Sunflower?

 

The Sunflower is a globally recognised symbol for non-visible disabilities, also known as hidden disabilities or invisible disabilities.

People living with these often face barriers in their daily lives including a lack of understanding and negative attitudes. So some choose to wear the Sunflower lanyard to discreetly identify that they may need support, help, or just a little more time in shops, transport, or public spaces.

The Hidden Disabilities website allows you to search for

  • places that support people with hidden disabilities – shops, travel companies, educati0n or entertainment
  • airports round the world

Businesses can join and receive help to make your venues accessible and Sunflower-friendly.

Sunflower lanyards

Sunflower Lanyards are available free of charge to customers from businesses and organisations who are members of Hidden Disabilities Sunflower. As some people may be unable to travel to collect a free Hidden Disabilities Sunflower lanyard or would prefer to have them delivered, you can order directly from the online store

Find out more at Hidden Disabilities

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Evaluation of a training programme on PEM for MSK physiotherapists

Posted on 03/22/2022 by wames

Evaluation of a training programme to enable MSK physiotherapists to identify individuals with CFS symptoms post-COVID19, by J Breach, O Ledbetter, L Mould in Physiotherapy Vol 114, Suppl 1, p e178, Feb 1, 2022 [Part of special issue: Virtual Physiotherapy UK 2021 Conference]

 

Abstract:

Purpose

It is reported there are currently 1.1 million people suffering from long COVID symptoms, with 830,000 of these reporting that has an impact on their day to day life. One of the primary symptoms reported is fatigue. As part of our COVID rehabilitation programme, Nuffield Health physiotherapists were involved in triaging participants for suitability for the programme.

As previous research from the ME/CFS population indicates that exercise could be detrimental to individuals with fatigue by inducing post-exertional malaise, it was imperative they felt confident in being able to identify individuals with CFS-type symptoms to assess their suitability for the programme.

The aim of this project is to evaluate the effectiveness of the training programme in improving individual confidence in being able to identify individuals with chronic fatigue symptoms.

Methods

The training was devised following an extensive review of the current literature surrounding fatigue in both LongCovid and ME/CFS and delivered via a blended offering of online modules, webinars, interactive virtual classrooms, and discussion groups. It included being able to recognise signs of post viral fatigue, especially PEM as well as other symptoms such as cognitive issues, sleep disturbance and reduced functional capacity as detailed in the NICE draft guidelines for ME/CFS 2021.

The importance of this was emphasised by discussing evidence surrounding exercise and chronic fatigue and potential for harm if not managed appropriately by considering the symptom response to activity.

An Introduction to energy envelope theory for pacing was also presented. The effectiveness of the training was evaluated by an anonymised survey. Physiotherapists were asked to rate their levels of confidence before and after the training in regard to assessing participants for inclusion in the programme based on their fatigue symptoms, plus to provide comments on the training content.

Results

  • Average confidence 8/10
  • Improvement of 56% after training

Feedback

Positive: I felt confident to exclude all with CFS…

I think it is a case of getting on with it putting it into practice

Negative: I feel that as msk physios this is beyond the scope of what we should be doing…

As MSK physios we are not experts in many of the fields listed. i.e., CFS

Conclusion(s)

The training did result in good improvement in confidence in screening for CFS symptoms. However, the feedback did include some individuals feeling this is beyond their current scope of practice as msk physios, highlighting a need for ongoing support. This is understandable due to the evolving picture of Long Covid symptoms being different to the usual caseload of msk physiotherapists. However, to meet the growing need of rehabilitation for those suffering with Long Covid, it is imperative to support therapists in expanding their scope of practice to contribute to the recovery from the pandemic.

Impact

The findings will influence the ongoing support given to MSK physiotherapists to upskill in the area of chronic fatigue assessment and management to meet the demand Long Covid will be placing on rehabilitation. This is imperative to support individual therapists to expand their scope of practice beyond the usual MSK caseload.

 

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Videos: What is ME/CFS? by Dr Eleanor Stein: a psychiatrist’s perspective

Posted on 03/22/2022 by wames

An Introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

 

Dr Eleanor Stein is a psychiatrist in private practice in Calgary, Alberta, Canada and a Clinical Assistant Professor in the Department of Psychiatry at the University of Calgary. She lives with ME/CFS and works exclusively with patients with ME/CFS, Fibromyalgia and Environmental Sensitivities. Her website provides education and resources for those with these ‘difficult-to-navigate illnesses’.

 

Dr Stein says:
These three educational videos introduce what ME/CFS is, how to diagnose it and how to manage the most common symptoms.

The videos are adapted from recordings I created for the 1st year medical students at the University of Calgary. They are suitable for anyone relatively new to the disease: patients, loved ones, carers and health care practitioners.

The recordings on diagnosis and management include audio clips from real patients sharing their experience. Thank you to all of the contributors ranging from people who are significantly recovered and people who remain severely ill.

At the end of each video are resource slide/s with links to reputable websites with more information.

Part 1:  What is ME/CFS? [14 mins]
In this video I describe what ME/CFS is. It includes a 5 minute video of the same name from the Bateman Horne Centre (used with permission). Each of the  criteria for Systemic Exertion Intolerance Disease is explained. The Bateman Horne video is a cartoon and easily accessible to all viewers.

Part 2:  Diagnosis [22 mins]
In this recording I describe the questions a health care practitioner could ask a patient to confirm whether they meet criteria for ME/CFS or not. I also describe some of the conditions that frequently accompany ME/CFS. If you are a patient, consider what your answers are to these questions. I have included audio clips from real patients answering these questions to give a feel of the lived experience of ME/CFS.

14-minute introductory video that was initially part of a presentation to medical students; also useful for other healthcare profs, family & friends

Part 3:  Management [20 mins]
In this recording I introduce the most helpful management strategies for each of the common symptoms of ME/CFS, those included in the SEID criteria, the Canadian Consensus Criteria and the conditions that often accompany ME/CFS. I include audio clips from real patients to help give you an idea what these symptoms are like and how people have improved over time. There is hope.

Watch the videos

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Welsh Government responds & asks if NICE is being implemented

Posted on 03/21/2022 by wames

Welsh Government replies to WAMES

 

WAMES wrote to the Health Minister on 8 February asking why an announcement had been made about services for recent patients with long COVID, but not about services for people who have been living with ME for decades and…

how the Welsh Government will be funding and supporting a better understanding of ME/CFS, PESE/PEM and the dangers of exercise therapy, alongside the wider range of support needed for those with post COVID symptoms. We are looking for a speedy implementation of the 2021 NICE guideline.

#ImplementNICEmecfs

The Health Minister delegated her reply (again)

A civil servant from the ‘Government and Corporate Business Team’ wrote to update us on their work on ME/CFS and to ask us about recent patient experiences within NHS Wales:

During the winter each health board was surveyed in relation to their services for ME/CFS as well as their response to the revised NICE guidance. We have received assurances that
the new NICE guidance is being adopted. If your organisation has any evidence to the contrary we would welcome hearing about this. Within the survey we also queried what support is required to help improve services for all those presenting post viral symptoms and additional funding and training was mentioned.

What is your experience?

Are health professionals implementing the new NICE guideline?

Give us your experiences in any way you wish: email any of the team including jan@wames.org.uk or phone, email, comment on social media or this post.

The Welsh Government has assured us:

We agree there is much to learn from those with other post viral illnesses, including those with ME/CFS and can reassure you that ME/CFS is discussed at the vast majority of meetings considering long covid provision. Clinicians treating those with long Covid have advised of the similarities and there is a desire to ensure all services are suitable for all those living with the conditions.

As well as surveying health boards they are:

appointing a new senior policy lead whose remit will include long Covid, post viral conditions and ME/CFS. They will be tasked with working with stakeholders to deliver equity of outcome for all those needing support and we will ensure your comments are shared with them once they take up post.

Summing up, the Welsh Gov says:

  • There is much to learn about Long COVID from other post viral illnesses
  • ME/CFS is discussed at the vast majority of meetings considering long COVID provision
  • Clinicians have advised of the similarities between long COVID & ME/CFS
  • there is a desire in the NHS to ensure all services are suitable for all related conditions
  • Welsh Government is in the final stages of appointing a new senior policy lead whose remit will include long COVID, post viral conditions and ME/CFS
  • The aim is equity of outcome for all those needing support with post viral conditions
  • NHS Wales Health Boards say they are implementing new NICE guideline but need additional funding and training
  • Welsh Gov would welcome any evidence that the NICE guideline is not being implemented
  • Welsh Gov continues to explore how to expand integrated services for all people
    with post-viral illnesses and other long-term conditions, including ME/CFS.

Read the full letter

Read WAMES’ email to the Health Minister

Blog post: Wales prioritises healthcare for post-viral condition Long COVID

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Perspective: Drawing on findings from critical illness to explain ME/CFS

Posted on 03/16/2022 by wames

Perspective: Drawing on findings from critical illness to explain Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Dominic Stanculescu and  Jonas Bergquist in Front. Med., 08 March 2022 [doi.org/10.3389/fmed.2022.818728]

 

Abstract:

We propose an initial explanation for how myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) could originate and perpetuate by drawing on findings from critical illness research.

Specifically, we combine emerging findings regarding

(a) hypoperfusion [a reduced amount of blood flow] and endotheliopathy [damage to endothelial cells in the blood vessels] and

(b) intestinal injury in these illnesses with our previously published hypothesis about the role of

(c) pituitary suppression, [pituitary gland does not produce normal amounts of some or all of its hormones] and

(d) low thyroid hormone function associated with redox imbalance in ME/CFS.

Moreover, we describe interlinkages between these pathophysiological mechanisms as well as “vicious cycles” involving cytokines and inflammation that may contribute to explain the chronic nature of these illnesses. This paper summarizes and expands on our previous publications about the relevance of findings from critical illness for ME/CFS.

New knowledge on diagnostics, prognostics and treatment strategies could be gained through active collaboration between critical illness and ME/CFS researchers, which could lead to improved outcomes for both conditions.

Discussion
Hypoperfusion and endotheliopathy, intestinal injury, pituitary suppression, and low thyroid hormone function are each central to prolonged critical illness regardless of the nature of the initial severe injury or infection (101, 173, 195, 196).  We propose that, similarly, these mechanisms and their reciprocal relationships with inflammation could underlie ME/CFS regardless of the nature of the peri-onset event (i.e., infection, stressful incident, exposure to environmental toxins or other). Moreover, the severity of ME/CFS may be a function of the strength of these mechanisms.

However, each of these pathological mechanisms has largely been studied in isolation and rarely have the linkages between them been explored. Yet, the aggregate of these mechanisms is likely necessary to fully explain the perpetuation of critical illness—and to inform the understanding of ME/CFS.

Conclusion
Decades of research in the field of critical illness medicine have demonstrated that in response to the stress of severe infection or injury, the vascular system, intestines, endocrine axes and thyroid hormone function experience profound alterations. Self-reinforcing interlinkages between these pathophysiological mechanisms as well as “vicious cycles” involving cytokines and inflammation may perpetuate illness irrespective of the initial severe infection or injury.

Without excluding possible predisposing genetic or environmental factors, we propose that the pathological mechanisms—and the interlinkages between them—that prevent recovery of some critically ill patients may also underlie ME/CFS.

This initial proposal is in line with and complements several existing hypotheses of ME/CFS pathogenesis. If this hypothesis is validated, past treatment trials for critical illness may provide avenues for a cure for ME/CFS. Certainly, given the similarities described above, active collaboration between critical illness and ME/CFS researchers could lead to improved understanding of not only both conditions, but also PICS, long-COVID, PACS, and fibromyalgia.

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Research: Predictors for developing severe ME/CFS following infectious Mononucleosis

Posted on 03/14/2022 by wames

Predictors for developing severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome following infectious Mononucleosis, by Leonard A Jason, Joseph Cotler, Mohammed F Islam, Jacob Furst, Ben Z Katz in Journal of Rehabilitation Therapy, 2022;4(1):1-5, February 21, 2022

 

Research abstract:

Background:

About 10% of individuals who contract infectious mononucleosis (IM) [aka Glandular fever] have symptoms 6 months later that meet criteria for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).  Our study for the first time examined whether it is possible to predict who will develop ME/CFS following IM.

Methods:

We have reported on a prospectively recruited cohort of 4,501 college students, of which 238 (5.3%) developed IM.  Those who developed IM were followed-up at six months to determine whether they recovered or met criteria for ME/CFS. The present study focuses on 48 students who after six months had a diagnosis of ME/CFS, and a matched control group of 58 students who had no further symptoms after their IM.

All of these 106 students  had data at baseline (at least 6 weeks prior to the development of IM), when experiencing IM, and 6 months following IM. Of those who did not recover from IM, there were two groups: 30 were classified as ME/CFS and 18 were classified as severe ME/CFS.

We measured the results of 7 questionnaires, physical examination findings, the severity of mononucleosis and cytokine analyses at baseline (pre-illness) and at the time of IM.  We examined predictors (e.g., pre-illness variables as well as variables at onset of IM) of  those who developed ME/CFS and severe ME/CFS following IM.

Results:

From analyses using receiver operating characteristic statistics, the students who had had severe gastrointestinal symptoms of stomach pain, bloating, and an irritable bowel at baseline  and who also had abnormally low levels of the immune markers IL-13 and/or IL-5 at baseline, as well as severe gastrointestinal symptoms when then contracted IM,  were found to have a nearly 80% chance of having severe ME/CFS persisting six months following IM.

Conclusions:

Our findings are consistent with emerging literature that gastrointestinal distress and autonomic symptoms, along with several immune markers, may be implicated in the development of severe ME/CFS.

Extract from Discussion:

The current study for the first time attempted to predict onset of ME/CFS using pre-illness and illness data. If validated, these predictors of risk could significantly alter the therapeutic strategies in IM and other triggers of ME/CFS in adults and adolescents. In addition, our work may lead to a reappraisal of the ME/CFS diagnostic criteria to include objective gastrointestinal and/or autonomic criteria for diagnosis.

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ME/CFS trigger: tuberculosis

Posted on 03/10/2022 by wames

Researchers have identified the mycobacterium tuberculosis infection as a trigger for CFS, particularly amongst men and the over 65s in Taiwan. TB in Wales is in decline and numbers are small, but the NHS considers it still to be a disease of concern. England has the highest rate of TB in the UK.

 

Tuberculosis (TB) is a bacterial infection spread through inhaling tiny droplets from the coughs or sneezes of an infected person. NHS Wales

 

How mycobacterium tuberculosis infection could lead to the increasing risks of chronic fatigue syndrome and the potential immunological effects: a population-based retrospective cohort study, by Tse-Yen Yang, Cheng-Li Lin, Wei-Cheng Yao, Chon-Fu Lio, Wen-Po Chiang, Kuan Lin, Chien-Feng Kuo & Shin-Yi Tsai in Journal of Translational Medicine vol 20, Article number: 99 (2022) [doi.org/10.1186/s12967-022-03301-1]

 

Research abstract: 

Background
Chronic fatigue syndrome (CFS) has been shown to be associated with infections. Tuberculosis (TB) is a highly prevalent infectious disease. Patients with chronic fatigue syndrome and post-tuberculosis experience similar symptoms.

Furthermore, chronic fatigue syndrome and tuberculosis share similar plasma immunosignatures. This study aimed to clarify the risk of chronic fatigue syndrome following the diagnosis of Mycobacterium tuberculosis infection (MTI), by analyzing the National Health Insurance Research Database of Taiwan.

Methods
7666 patients aged 20 years or older with newly diagnosed Mycobacterium tuberculosis infection during 2000–2011 and 30,663 participants without Mycobacterium tuberculosis infection were identified. Both groups were followed up until the diagnoses of chronic fatigue syndrome were made at the end of 2011.

Results
The relationship between Mycobacterium tuberculosis infection and the subsequent risk of chronic fatigue syndrome was estimated through Cox proportional hazards regression analysis, with the incidence density rates being 3.04 and 3.69 per 1000 person‐years among the non‐Mycobacterium tuberculosis infection and Mycobacterium tuberculosis infection populations, respectively (adjusted hazard ratio [HR] = 1.23, with 95% confidence interval [CI] 1.03–1.47).

In the stratified analysis, the Mycobacterium tuberculosis infection group were consistently associated with a higher risk of chronic fatigue syndrome in the male sex (HR = 1.27, 95% CI 1.02–1.58) and age group of ≥ 65 years old (HR = 2.50, 95% CI 1.86–3.38).

Conclusions
The data from this population‐based retrospective cohort study revealed that Mycobacterium tuberculosis infection is associated with an elevated risk of subsequent chronic fatigue syndrome.

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Evaluating case diagnostic criteria for ME/CFS

Posted on 03/06/2022 by wames

Evaluating case diagnostic criteria for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS): toward an empirical case definition, by Karl E Conroy, Mohammed F Islam, Leonard A Jason in Disability and Rehabilitation, Mar 2, p 1-8 2022 [doi.org/10.1080/09638288.2022.2043462]

 

Implications for rehabilitation

  • ME/CFS is a chronic illness with no consensus regarding case diagnostic criteria, which creates difficulty for patients seeking assistance and disability benefits.
  • The current study compared three commonly used case definitions for ME/CFS by factor analyzing symptomological data from an international sample of patients.
  • Our results suggest three primary and four secondary symptom domains which differed from all three case definitions.
  • These findings could help reduce barriers to care for those disabled with ME/CFS by guiding the development of an empirically-based case definition.

Abstract:

Purpose

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness characterized by a variety of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment. A variety of case definitions (e.g., the Canadian Consensus Criteria (CCC), the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC), and the Institute of Medicine (IOM) criteria) have been used to diagnose patients. However, these case definitions are consensus-based rather than empirical.

Materials and methods

The aim of the current study was to evaluate the validity of the aforementioned case definitions by factor analyzing a large, international sample (N = 2308) of ME/CFS symptom data. We performed primary and secondary exploratory factor analyses on the DePaul Symptom Questionnaire‘s 54-item symptom inventory. These results were compared to the CCC, the ME-ICC, and the IOM criteria.

Results

We identified seven symptom domains, including post-exertional malaise, cognitive dysfunction, and sleep dysfunction. Contrary to many existing case criteria, our analyses did not identify pain as an independent factor.

Conclusions

Although our results implicate a factor solution that best supports the CCC, revisions to the criteria are recommended.

Full paper behind paywall

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