Introducing WAMES volunteers: social media volunteer
Hi! I’m Mia.
I am the volunteer in charge of the newly created WAMES Instagram account. I joined WAMES as a volunteer because I liked the idea of being able to help others that are in my situation, especially young people like me. Running the Instagram account allows me post about things I wish I would have been able to see when I had ME!
Before I developed ME, I was a Welsh national swimmer, just about to begin my first year of GCSEs. At the age of 14 though, I developed a chronic pain that lasted almost 3 months to the day before it stopped. After the pain had disappeared, I was left with chronic fatigue that prevented me from being able to attend school or continue swimming. I had to be home tutored and complete my GCSEs at home.
After 2 years of suffering with ME, I made a full recovery and 5 years on from my diagnosis, my life is back to normal (if it was ever normal to begin with!) I am on my way to university to study Biomedical Science and I have started swimming again.
This paper aims to demonstrate the additional benefit of ultrasound in the diagnosis of chronic osteolysis and osteonecrosis (bone marrow defects) of the jaw shown in a clinical case report.
Patients and Methods:
A case of chronic fatigue syndrome (CFS) in a young man presenting the typical, ambiguous symptoms, which were accompanied by headaches and tinnitus. X-ray techniques, namely panoramic radiographs (OPG) and cone beam computed tomography (DVT/CBCT), failed to produce any remarkable findings of bone marrow defects (BMDJ) in the jawbone. However, the measurement of bone density using trans-alveolar ultrasound (TAU) indicated a possible bone marrow defect in the lower left jawbone.
Results:
Surgery was undertaken at the conspicuous area. Additional to softened, ischemic, fatty tissue, a black area was revealed, which was surprisingly subsequently identified as aspergillosis by histopathological analysis. In addition, the excessive local RANTES/CCL5 expression found in the affected area confirmed the necessity for surgical debridement and additional findings of TAU.
Conclusion:
In contrast to radiography, complementary TAU imaging of the BMDJ revealed chronic inflammatory signaling RANTES/CCL5 pathways and fungal colonization. This case report supports the need for additional diagnostic techniques beyond radiographic modalities, which can help to elucidate the diagnostic composition and knowledge of the bone manifestations of systemic diseases.
The aim of this study was to describe the clinical evolution during 6 months of follow-up of adults recovered from COVID-19. We tried to determine how many met the definition of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). A total of 130 patients (51.0 p/m 14 years, 34.6% female) were enrolled. Symptoms were common, participants reported a median number of 9 (IQR 5-14) symptoms.
Fatigue was the most common symptom (61/130; 46.9%). Patients with fatigue were older 53.9 p/m 13.5 years compared with 48.5 p/m 13.3 years in those without fatigue (p=0.02) and had a longer length of hospital stay, 17 p/m 14 days vs. 13 p/m 10 days (p=0.04).
There was no difference in other comorbidities between patients with fatigue and those without it, and no association between COVID-19 severity and fatigue. After multivariate adjustment of all baseline clinical features, only age 40 to 50 years old was positively associated with fatigue, OR 2.5 (95% CI 1.05-6.05) p=0.03.
In our survey, only 17 (13%) patients met the Institute of Medicine’s criteria for ‘systemic exertion intolerance disease,’ the new name of ME/CFS.
In conclusion, in some patients, the features of post-acute COVID-19 syndrome overlap with the clinical features of ME/CFS.
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)-COST action 15111-from 2016 to 2020.
The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field.
We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.
5. Concluding Remarks and Recommendations for Developing and Organising ME/CFS Services
The following are general recommendations for fully implemented services, but we appreciate that they are not achievable in the short term in many places, especially where knowledge and training in the field are limited or other resources are scarce.
We encourage countries and regions to plan for their services, training, and educational needs according to the specific needs and characteristics of their population and patients and their organizational structures and resources.
A national champion for each country or regions within countries would be highly desirable, especially in places with no or very scarce provision of services for ME/CFS.
For fully functioning services, we recommend 2–4 ME/CFS specialist doctors/1 million population, with a supporting multi-disciplinary team, to include professionals such as nurses, nurse practitioners, occupational therapists, psychologists, dieticians, social workers, etc.; these would staff outpatient services for diagnosis and follow up.
The specialist may be a doctor with expertise in ME/CFS. Internists, neurologists, immunologists, rheumatologists, infectious diseases specialists, and general practitioners are particularly suited for this role, but it may be done by doctors of any specialty, as long as they have the right expertise or training. For children, this role is to be filled by paediatricians.
At the time of writing, we are not aware of any specific programme for the training of doctors to become specialists in ME/CFS, something that has often occurred informally so far. The training and provision of services in secondary care should be aligned with the training of primary care physicians to manage cases in the community. We recognize that the above target is ambitious, considering the current capacity and status of service provision in the continent. They should be seen as tentative and should not replace the assessment of patients’ needs and structure and capacity of services at local and national levels.
The current reality of health services suggests that, where specialist services are not well developed, we follow a minimum standard of care for those with ME/CFS that may rely on virtual health and app-technology as well as on a strong partnership with primary care.
The minimum desirable is one ME/CFS centre providing specialist services for a 10 million population. These services should also consider the characteristics of the population, including ethnic and cultural diversity.
Furthermore, we recommend that the specialist services should have the primary aim of confirming diagnosis and setting up treatment/ management plans, which should be agreed upon and carried out by a multidisciplinary team. The follow-up could use multi-media approaches, such as remote consultations or telemedicine, as appropriate according to local circumstances and medical regulations.
Local care for people with significant disability may need to be provided by primary care teams or local doctors with knowledge about ME/CFS, with support from the specialist services as appropriate. The option of smaller satellite clinics linked to the specialist service would provide full assistance for most and the “eyes” of a competent health professional, in support of remote consultations from the specialist for complex cases.
There is no suggestion that people with ME/CFS require more social support than people with other chronic diseases, and we are most certainly not implying that the disease is primarily psychological in nature. We are, though, very well aware that people with other chronic diseases, such as for example diabetes or multiple sclerosis, do not have the same problems of disbelief and lack of legitimisation experienced by people with ME/CFS. All people with chronic diseases need, and should be entitled to, social support, but few experience the same difficulty accessing it as people with ME/CFS.
Finally, it is important to consider that addressing the substantial needs of people with ME/CFS requires a multi-sectoral approach (Box 13), as well as ensuring that health services are organised and delivered effectively. Much of the needs of people affected by ME/CFS arise from their reduced ability to function in society and in more extreme cases on their total dependence on care for basic needs. Work, life, and education may be disrupted, with substantial economic and personal impacts on individuals and their families; lack of understanding and support, and often stigma, adding to the burden of physical suffering from symptoms.
It is extremely important to prioritize research and education of health professionals and others in society, so as to address the scientific and societal poor understanding of the scale of the problem faced.
Authors & Source:
Luis Nacul, François Jérôme Authier, Carmen Scheibenbogen, Lorenzo Lorusso, Ingrid Bergliot Helland, Jose Alegre Martin, Carmen Adella Sirbu, Anne Marit Mengshoel, Olli Polo, Uta Behrends, Henrik Nielsen, Patricia Grabowski, Slobodan Sekulic, Nuno Sepulveda, Fernando Estévez-López, Pawel Zalewski, Derek F H Pheby, Jesus Castro-Marrero, Giorgos K Sakkas, Enrica Capelli, Ivan Brundsdlund, John Cullinan, Angelika Krumina, Jonas Bergquist, Modra Murovska, Ruud C W Vermuelen, Eliana M Lacerda in Medicina 2021, 57(5), 510; [doi.org/10.3390/medicina57050510] 19 May 2021 (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)
In a previous study using mobile-health technology (mHealth), we reported a robust association between chronic fatigue symptoms and heart rate variability (HRV) in female patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This study explores HRV analysis as an objective, non-invasive and easy-to-apply marker of ME/CFS using mHealth technology, and evaluates differential gender effects on HRV and ME/CFS core symptoms.
In our methodology, participants included 77 ME/CFS patients (32 men and 45 women) and 44 age-matched healthy controls (19 men and 25 women), all self-reporting subjective scores for fatigue, sleep quality, anxiety, and depression, and neurovegetative symptoms of autonomic dysfunction.
The inter-beat cardiac intervals are continuously monitored/recorded over three 5-min periods, and HRV is analyzed using a custom-made application (iOS) on a mobile device connected via Bluetooth to a wearable cardiac chest band.
Male ME/CFS patients show increased scores compared with control men in all symptoms and scores of fatigue, and autonomic dysfunction, as with women in the first study. No differences in any HRV parameter appear between male ME/CFS patients and controls, in contrast to our findings in women. However, we have found negative correlations of ME/CFS symptomatology with cardiac variability (SDNN, RMSSD, pNN50, LF) in men.
We have also found a significant relationship between fatigue symptomatology and HRV parameters in ME/CFS patients, but not in healthy control men.
Gender effects appear in HF, LF/HF, and HFnu HRV parameters. A MANOVA analysis shows differential gender effects depending on the experimental condition in autonomic dysfunction symptoms and HF and HFnu HRV parameters.
A decreased HRV pattern in ME/CFS women compared to ME/CFS men may reflect a sex-related cardiac autonomic dysfunction in ME/CFS illness that could be used as a predictive marker of disease progression.
In conclusion, we show that HRV analysis using mHealth technology is an objective, non-invasive tool that can be useful for clinical prediction of fatigue severity, especially in women with ME/CFS.
Welsh Government: Services supporting people to recover from COVID-19 (none for ME/CFS)
On 15th June 2021 the Health Minister, Eluned Morgan MS, announced in the Senedd that £5 million would be given to the NHS
“to develop primary and community services to support these and other individuals who have additional needs as a result of the impacts of the pandemic.
The funding will support a new patient pathway programme called Adferiad, or Recovery, and it will expand the provision in terms of diagnosis, treatment, rehabilitation and care for those suffering from the long-term effects of COVID-19, including long COVID in Wales.”
WAMES is pleased that at last the severity of post-viral illness is finally being recognised and has begun to be funded. Post-viral illness is not new however. Many people with ME recognise a viral trigger to their illness and WAMES has been working with the Welsh Government since the inception of Welsh-run services to raise awareness in the NHS of the estimated 13,000 families affected by ME in Wales.
Post-viral illness is not new
In 2014 the Welsh Government gave recommendations to Health Boards in the form of a Task & Finish Group Report on how to improve services for ME/CFS but at no time was any money given to support this and no sanctions were issued when Health Boards failed to respond.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multifaceted illness characterized by profound and persistent fatigue unrelieved by rest along with a range of other debilitating symptoms. Experiences of unrefreshing and disturbed sleep are frequently described by ME/CFS patients.
This is the first systematic review assessing sleep characteristics in ME/CFS. The aim of this review is to determine whether there are clinical characteristics of sleep in ME/CFS patients compared to healthy controls using objective measures such as polysomnography and multiple sleep latency testing.
Methods
The following databases—Pubmed, Embase, Medline (EBSCO host) and Web of Science, were systematically searched for journal articles published between January 1994 to 19 February 2021. Articles that referred to polysomnography or multiple sleep latency testing and ME/CFS patients were selected, and further refined through use of specific inclusion and exclusion criteria. Quality and bias were measured using the Joanna Briggs Institute checklist.
Results
Twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described.
Conclusions
Many of the parameters measured including slow- wave sleep, apnea- hypopnea index, spectral activity and multiple sleep latency testing were inconsistent across the studies. The available research on sleep quality in ME/CFS was also limited by recruitment decisions, confounding factors, small sample sizes and non-replicated findings. Future well-designed studies are required to understand sleep quality in ME/CFS patients.
Dr Asad Khan talks to Dr Ben Marsh about his experience of ME/CFS over the last 4 years, and what lessons the Long COVID community can learn about activity management, fatigue and post exertional malaise.
0:00 Introduction
1:17 Life before ME
2:02 When did it change?
2:50 The first 12 months
3:45 When ME kicked in
5:30 The Symptoms
8:53 PEM and its invisibility
11:40 The label of ‘pyschosomatic’
19:34 Graded Exercise Therapy
26:29 NICE removal of GET
27:51 PEM / GET risk
29:26 Difficulty of pacing
33:30 Physiology of PEM
38:52 CBT as a treatment
41:12 Summary
Follow Dr Ben Marsh on twitter @bendymarsh
REFERENCES:
1) Nina Muirhead talk. https://me-pedia.org/wiki/Nina_Muirhead8 min – mitochondrial energy score 13 min – Quality of life & disease burden 15min – PEM: mental arithmetic
4) Patients account of symptoms, Dialogues for ME, including videos with ME patients discussing: – reduced function – disease start – PEM – Cognitive impairment – sleep dysfunction – orthostatic intolerance – Pain – hypersensitivity https://www.dialogues-mecfs.co.uk/fil…
5) Kindlon T (2011) Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/ chronic fatigue syndrome. Bulletin of the IACFS/ME 192: 59–111.
“Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.” https://www.researchgate.net/publicat…
6) Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177/1359105317726152
Table 4. Summary of key symptom change data from ME/CFS patient surveys (2000–2015). Deterioration (slightly or much worse) CBT 17% GET 54% https://www.dropbox.com/s/zn49o3rsukb…
The House of Lords must alert the government about evidence showing that
“long covid” (which includes debilitating fatigue and negative health effects) might last for years among sufferers, posing a long-term risk to the nation’s
workforce and economy. This report discusses evidence that viruses can trigger long-term fatigue that severely impairs the personal and occupational
functioning of sufferers, including evidence from populations affected by SARS-CoV-1 where 1 in 4 had debilitating chronic fatigue lasting over 4 years later.
Due to post-viral chronic fatigue being a condition that can force people into
becoming housebound or unable to work, the House of Lords must alert the
government of the risks currently facing people within the UK who were infected with covid-10:
Key points
There is the risk of higher unemployment rates among people who had covid-19.
There is the risk of higher underemployment rates among people who
had covid-19 e.g., more switching to part-time working or lower skilled jobs because of health problems.
There is the risk of future staff shortages in occupations with a high
prevalence of covid-19.
Dr Kamau goes on to say that:
SARS-CoV-1 had fatigue so severe and life-changing in its debilitating effects on occupational/other functioning that it met the diagnostic criteria for a medical condition known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) as much as 4 years on…
whereas CFS/ME is prevalent among only 1.4%±1.57%.of the general population its prevalence among the people infected with SARS-CoV-1 outbreak was significantly higher at 27.1%.3 SARS-CoV-1 is not alone in inducing debilitating post-viral fatigue that can last months or years; other viruses can have a similar effect e.g. the west Nile virus, Epstein Barr virus and infectious mononucleosis4 where the prevalence of CFS/ME is also markedly higher than the general population…
Key point
Based on the evidence, this report encourages the government to
measure the percentage of people who developed CFS/ME after being infected with covid-19.
How the government can assess and mitigate the risks to the UK workforce
The House of Lords Select Committee on Risk Assessment and Risk Planning
should ask the government to:
A. Conduct research (such as through Office for National Statistics surveys)
revealing the prevalence of post-covid-19 CFS/ME…
B. The government should … estimate the risk of post-covid-19 CFS/ME across the population and the risk by occupation, to identify high risk groups and forecast future workforce shortages.
C. The government should target interventions against staff shortages,
unemployment and underemployment with a focus on occupations at high
risk of post-covid-19 CFS/ME…
D. The government should issue guidance… to NHS primary and social care staff about how to diagnose and advise people with post-covid-19 CFS/ME.
E. The government should provide employers with occupational health
guidance to help them better support employees…
F. The government should…find ways of preventing or treating post-covid-19 CFS/ME.
Key point
The government should measure prevalence of post-covid-19 CFS/ME, conduct modelling to assess high risk occupational groups, intervene to prevent unemployment, underemployment and workforce shortages, guide healthcare staff, advise employers/workers, and inspire research into prevention of post-covid-19 CFS/ME.
Post-exertional malaise (PEM), the key feature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), is characterized by baseline symptom exacerbation after exposure to a stressor, and some patients can experience new or non-typical symptoms.
We hypothesized that new or non-typical symptoms occurring long enough before onset of baseline symptom exacerbation could be warning signals predicting PEM.
Adult ME/CFS patients who attended the internal medicine department of Angers University Hospital (France) between October 2011 and December 2019 were included in a retrospective medical records review. Patients who experienced one or more new or non-typical symptoms before baseline symptom exacerbation were compared with the rest of the study population for PEM features, epidemiological characteristics, fatigue features, and comorbidities.
New or non-typical symptoms preceded baseline symptom exacerbation in 27/197 (13.7%) patients, and the most frequent ones were mood disorders (37%). When compared to the rest of the study population, only PEM intensity was significantly lower in these patients (p = 0.004), even after adjustment for sex and age at disease onset (p = 0.007).
New or non-typical symptoms preceding baseline symptom exacerbation in some ME/CFS patients could be warning signals for PEM. Their identification could help preventing PEM occurrences or reducing their intensity leading to improving disease prognosis.
Excerpt fr0m paper:
4. Discussions
… Besides mood disorders, we observed other frequent prodromal new or non-typical symptoms, such as nausea, paresthesia, and headaches. Interestingly, despite their heterogeneity and large variability between patients, prodromal new or non-typical symptoms often remained the same for each patient, which reinforces their predictive power.
One can wonder whether medication intake in patients with comorbid reactional depression or fibromyalgia to relieve symptoms can hinder the emergence of prodromal new or non-typical symptoms. In the current study, there were no significant differences in medication intake between patients both diagnosed with comorbid reactional depression and/or fibromyalgia and exhibiting prodromal new or non-typical symptoms when compared to the rest of the study population (Supplementary Table S1). Therefore, medication intake in these patients did not appear to affect the emergence of warning signals.
One question, however, remains unanswered: why a proportion of patients experienced new or non-typical symptoms before onset of baseline symptom exacerbation while others did not. Overall, the features and pathophysiology of PEM are still not well understood. Nevertheless, there is a growing body of evidence that PEM affects a variety of physiological systems.
Studies that used maximal and submaximal exercise to elicit PEM showed altered cardiorespiratory responses [24], impaired pain regulation [25], impaired cognitive performance and affected brain function [26], altered gut microbiome and increased bacterial translocation [27], and immune involvement [28]. Mitochondrial dysfunction was also discussed as having a role in the nature of PEM [29], not only after exercise [30], but also in resting conditions [31]. Research addressing this issue must be conducted.
5. Conclusions
Taking warning symptoms into consideration could alert patients to the fact that they are going beyond their energy reserves and therefore have to reduce or stop their activity level in order to avert PEM occurrence. Consequently, it seems necessary to systematically look for prodromal new or non-typical symptoms, which are different from those usually experienced by ME/CFS patients.
To do this, self-report questionnaires intended to assess PEM among these patients should include specific questions designed to examine the presence of the prodromal phase, explore warning symptoms that might occur after exposure to a PEM stressor and before onset of baseline symptom exacerbation, and specify whether or not these symptoms are different from those habitually experienced by patients.
Similarly, and given that patients with ME/CFS usually show difficulties in predicting PEM occurrence, especially when the onset of baseline symptom exacerbation is delayed after the stressor, they must learn how to identify and recognize which warning signs, if any, may herald PEM onset, and be informed about how the impending threat of PEM could be avoided.
To achieve this, it is important to facilitate access for patients to therapeutic educational programs, and raise awareness among primary care physicians about ME/CFS, in particular PEM issues.
I am the volunteer in charge of the newly created WAMES Instagram account. I joined WAMES as a volunteer because I liked the idea of being able to help others that are in my situation, especially young people like me. Running the Instagram account allows me post about things I wish I would have been able to see when I had ME!
After 2 years of suffering with ME, I made a full recovery and 5 years on from my diagnosis, my life is back to normal (if it was ever normal to begin with!) I am on my way to university to study Biomedical Science and I have started swimming again.
This paper aims to demonstrate the additional benefit of ultrasound in the diagnosis of chronic osteolysis and osteonecrosis (bone marrow defects) of the jaw shown in a clinical case report.
The aim of this study was to describe the clinical evolution during 6 months of follow-up of adults recovered from COVID-19. We tried to determine how many met the definition of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). A total of 130 patients (51.0 p/m 14 years, 34.6% female) were enrolled. Symptoms were common, participants reported a median number of 9 (IQR 5-14) symptoms.
Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)-COST action 15111-from 2016 to 2020.
In a previous study using mobile-health technology (mHealth), we reported a robust association between chronic fatigue symptoms and heart rate variability (HRV) in female patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This study explores HRV analysis as an objective, non-invasive and easy-to-apply marker of ME/CFS using 
On 15th June 2021 the Health Minister, Eluned Morgan MS, 
Twenty observational studies were included in this review. The studies investigated objective measures of sleep quality in ME/CFS. Subjective measures including perceived sleep quality and other quality of life factors were also described.
Excerpt:
Post-exertional malaise
