Tag: PEM

Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Post-exertional malaise is a cardinal symptom of ME/CFS and impacts a patient’s functional capacity (FC). The absence of effective tools to assess FC has significant consequences for timely diagnosis, clinical follow-up, assessments for patient disability benefits, and research studies. In interventional studies, the inability to assess FC can result in an incomplete assessment of the potential benefit of the intervention, leading to beneficial treatment outcomes being missed.
Methods: Using extensive, repeated patient feedback, we have developed a new questionnaire, FUNCAP, to accurately assess FC in ME/CFS patients. The questionnaire consists of eight domains divided by activity types: A. personal hygiene/basic functions, B. walking/movement, C. being upright, D. activities in the home, E. communication, F. activities outside the home, G. reactions to light and sound, and H. concentration.
Results: Through five rounds of anonymous web-based surveys and a further test–retest validation round, two versions of the questionnaire were developed: a longer version comprising 55 questions (FUNCAP55), developed for improved diagnostic and disability benefit/insurance FC assessments; and a shorter version (FUNCAP27) for clinical patient follow-up and potential use in research. Good reliability and validity and negligible floor and ceiling effects were found, with comparable findings in all aspects in both a large Norwegian (n = 1263) and a separate English-language international sample (n = 1387) demonstrating the validity and reliability of FUNCAP.
Conclusions: Our findings support the utility of FUNCAP as an effective, reliable and valid tool for assessing FC in ME/CFS patients.
Source: Sommerfelt K, Schei T, Seton KA, Carding SR. Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire. Journal of Clinical Medicine. 2024; 13(12):3486. https://doi.org/10.3390/jcm13123486 https://www.mdpi.com/2077-0383/13/12/3486 (Full text)

Medical students highlight the importance of medical education, kindness, compassion and belief when learning about patients with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

‘Imagine my surprise to discover ME/CFS is definitely not rare, but inexplicably and infuriatingly unacknowledged’. Fifth year medical student, Scotland.
Earlier this year, medical students at Scottish medical schools were invited to take part in an essay competition, 500 words on the topic of ‘What is your most important learning point about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?’ This edition proudly features the first prize winning essay of the competition which was funded by the Scottish Government’s education project; Learn About ME.1
ME/CFS affects at least 280,000 people in the UK, including approximately 23,000 in Scotland. It is a neurological disease with multisystem symptoms, often triggered by a virus. People with ME/CFS may be left bedbound or housebound with a significantly reduced quality of life.2 Yet many healthcare professionals do not know how to diagnose or manage this devastating disease, nor do they know how, or what, to teach our next generation of doctors.3
People with ME/CFS, and a subset of those with long COVID, experience symptoms including post-exertional malaise (PEM), unrefreshing sleep, profound fatigue, brain fog and orthostatic intolerance.4
Patients can also present with sore throats, muscle aches, disrupted sleep, changes in bowel habit, joint and bone pain, problems with multitasking and short-term memory, word-finding difficulties, headaches, changes in smell and taste, tinnitus, disrupted menses, breathlessness, dizziness, skin rashes and hair loss.4
Research into underlying mechanisms has revealed key defects: an abnormal response to repeat exercise, gait and strength abnormalities, immune system dysfunction, neuroinflammation, altered blood cell morphology and clotting, problems with cellular-energy delivery, microbial gut dysbiosis and changes in metabolomics.5
The lack of medical education on this topic and resulting weak clinical knowledge of ME/CFS has resulted in delays to diagnosis, multiple clinic referrals and a huge cost to every taxpayer. ME/CFS costs the UK an estimated £3.3 billion a year6 and long COVID clinics cost millions, with funding being extended for this chronic condition. Yet Scottish services are struggling to find healthcare practitioners to deliver this care or worse, offering potentially harmful patient support workshops that are directly in conflict with the NICE (NG206) 2021 ME/CFS guidelines such as the highly criticised ‘Lightning Process’.7 Medical education on ME/CFS and post-acute infectious disease is urgently needed for earlier recognition and better management.
One student described the experience and delay in diagnosis for two of their family members: ‘. . .these young women were discarded as victims of teenage laziness or anxiety. They had to fight to gain support from their GP (General Practitioner) and their diagnosis took several second opinions and ultimately years’.
Outdated treatment using graded exercise, shown to harm ME/CFS patients, has been rebranded as ‘activity management’ in some services and offered to both ME/CFS and long COVID patients. Another medical student displayed incredible insight in recognising the deficiency of the current system, which relies largely on patient self-help: ‘the burden being placed on the patient to improve their condition through mental work’.
The key feature of ME/CFS is PEM. The most important thing to learn about PEM is that even trivial activity (whether physical, mental or emotional) can exacerbate symptoms, and that this exacerbation or flare can be delayed. A person with ME/CFS who can sit upright for five minutes on a given day could be too ill to sit up at all the next day due to PEM.8
A traditional rehabilitation programme led by a physiotherapist might include graded activity or exercise. For a non-ME/CFS person following a sports injury, orthopaedic surgery or intensive care, gently increasing activity for just a few minutes, or a few steps at a time is ideal. However, for ME/CFS patients, this approach could be incredibly harmful. People with ME/CFS need to conserve their energy and pace themselves to avoid a flare in symptoms.4
People who are only mildly affected still experience a major negative impact on their ability to work. They have very little energy for socialising, hobbies and housework. For those moderately affected, basic activities of normal daily living such as preparing food, washing and dressing can cause symptom exacerbation. Very severely affected individuals, who are often bedbound, can experience PEM from simply turning in bed, speaking and digesting food.9
ME/CFS also has a major impact on family members’ quality of life.2 Nearly a third of medical students responding commented on the impact on quality of life as being one of the most important things to learn about this disease.
Several students wrote about a family member, or friend, whom they knew with ME/CFS. Sadly, it was a recurring theme that the medical students explained they had not been taught about ME/CFS at medical school. One commented: ‘Alas, the only time in the last four years I have encountered the term ME/CFS at medical school was as a differential diagnosis for fibromyalgia’.
It is vital that this topic features more prominently in the medical curriculum, and in our medical textbooks, to avoid patient harm due to delayed or mis-diagnosis and mismanagement. There is a lot we can offer ME/CFS patients: an early and accurate diagnosis, medication for symptom control, practical support with disability applications and mobility aids, but above all, these medical students have reminded us that ME/CFS patients should be treated with kindness, compassion and belief.10
Source: Muirhead NL. Medical students highlight the importance of medical education, kindness, compassion and belief when learning about patients with myalgic encephalomyelitis/chronic fatigue syndrome. J R Coll Physicians Edinb. 2024 May 27:14782715241255977. doi: 10.1177/14782715241255977. Epub ahead of print. PMID: 38798174. https://journals.sagepub.com/doi/10.1177/14782715241255977 (Full text)

Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

in English, German

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, chronic multisystemic disease which, depending on its severity, can lead to considerable physical and cognitive impairment, loss of ability to work and the need for nursing care including artificial nutrition and, in very severe cases, even death.

The aim of this D-A-CH (Germany, Austria, Switzerland) consensus statement is 1) to summarize the current state of knowledge on ME/CFS, 2) to highlight the Canadian Consensus Criteria (CCC) as clinical criteria for diagnostics with a focus on the leading symptom post-exertional malaise (PEM) and 3) to provide an overview of current options and possible future developments, particularly with regard to diagnostics and therapy. The D-A-CH consensus statement is intended to support physicians, therapists and valuer in diagnosing patients with suspected ME/CFS by means of adequate anamnesis and clinical-physical examinations as well as the recommended clinical CCC, using the questionnaires and other examination methods presented.

The overview of the two pillars of therapy for ME/CFS, pacing and symptom-relieving therapy options, is intended not only to provide orientation for physicians and therapists, but also to support decision-makers from healthcare policy and insurance companies in determining which therapy options should already be reimbursable by them at this point in time for the indication ME/CFS.

Source: Hoffmann K, Hainzl A, Stingl M, Kurz K, Biesenbach B, Bammer C, Behrends U, Broxtermann W, Buchmayer F, Cavini AM, Fretz GS, Gole M, Grande B, Grande T, Habermann-Horstmeier L, Hackl V, Hamacher J, Hermisson J, King M, Kohl S, Leiss S, Litzlbauer D, Renz-Polster H, Ries W, Sagelsdorff J, Scheibenbogen C, Schieffer B, Schön L, Schreiner C, Thonhofer K, Strasser M, Weber T, Untersmayr E. Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom [Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome]. Wien Klin Wochenschr. 2024 Aug;136(Suppl 5):103-123. German. doi: 10.1007/s00508-024-02372-y. Epub 2024 May 14. PMID: 38743348. https://pubmed.ncbi.nlm.nih.gov/38743348/

Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19

Abstract:

Objectives: To report a case-control study of new-onset small fiber neuropathy (SFN) after COVID-19 with invasive cardiopulmonary exercise testing (iCPET). SFN is a critical objective finding in long COVID and amenable to treatment.

Methods: A retrospective chart review was conducted on patients seen in the NeuroCOVID Clinic at Yale who developed new-onset SFN after a documented COVID-19 illness. We collected demographics, symptoms, skin biopsy, iCPET testing, treatments, and clinical response to treatment or no intervention.

Results: Sixteen patients were diagnosed with SFN on skin biopsy (median age 47, 75% female, 75% White). 92% of patients reported postexertional malaise characteristic of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and 7 patients underwent iCPET, which demonstrated neurovascular dysregulation and dysautonomia consistent with ME/CFS. Nine patients underwent treatment with IVIG, and 7 were not treated with IVIG. The IVIG group experienced significant clinical response in their neuropathic symptoms (9/9) compared with those who did not receive IVIG (3/7; p = 0.02).

Discussion: Here, we present preliminary evidence that after COVID-19, SFN is responsive to treatment with IVIG and linked with neurovascular dysregulation and dysautonomia on iCPET. A larger clinical trial is indicated to further demonstrate the clinical utility of IVIG in treating postinfectious SFN.

Classification of evidence: This study provides Class III evidence. It is a retrospective cohort study.

Source: McAlpine L, Zubair AS, Joseph P, Spudich S. Case-Control Study of Individuals With Small Fiber Neuropathy After COVID-19. Neurol Neuroimmunol Neuroinflamm. 2024 May;11(3):e200244. doi: 10.1212/NXI.0000000000200244. Epub 2024 Apr 17. PMID: 38630952. https://www.neurology.org/doi/10.1212/NXI.0000000000200244 (Full text)

Impaired Hand Grip Strength Correlates with Greater Disability and Symptom Severity in Post-COVID Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Post-COVID syndrome (PCS) encompasses a diverse array of symptoms persisting beyond 3 months after acute SARS-CoV-2 infection, with mental as well as physical fatigue being the most frequent manifestations.
Methods: In 144 female patients with PCS, hand grip strength (HGS) parameters were assessed as an objective measure of muscle fatigue, with 78 meeting the Canadian Consensus Criteria for postinfectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The severity of disability and key symptoms was evaluated using self-reported questionnaires.
Results: Patients with ME/CFS exhibited heightened overall symptom severity, including lower physical function (p < 0.001), a greater degree of disability (p < 0.001), more severe fatigue (p < 0.001), postexertional malaise (p < 0.001), and autonomic dysfunction (p = 0.004) compared to other patients with PCS. While HGS was impaired similarly in all patients with PCS and exhibited a significant correlation with physical function across the entire patient group, HGS of patients with ME/CFS uniquely demonstrated associations with key symptoms.
Conclusions: Thus, impaired HGS serves as an objective marker of physical function in patients with PCS. Only in patients meeting ME/CFS criteria is impaired HGS also associated with the severity of hallmark symptoms. This suggests a common mechanism for muscle fatigue and other symptoms in the ME/CFS subtype, distinct from that in other types of PCS.
Source: Paffrath A, Kim L, Kedor C, Stein E, Rust R, Freitag H, Hoppmann U, Hanitsch LG, Bellmann-Strobl J, Wittke K, et al. Impaired Hand Grip Strength Correlates with Greater Disability and Symptom Severity in Post-COVID Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Clinical Medicine. 2024; 13(7):2153. https://doi.org/10.3390/jcm13072153 https://www.mdpi.com/2077-0383/13/7/2153

Attenuating Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long-COVID: Is Blood Lactate Monitoring the Answer?

Highlights:

  • Lactate monitoring has the potential to extend beyond applied sports settings and could be used to monitor the physiologic and pathophysiological responses to external and internal stimuli in chronic disease areas such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post-Covid syndrome or Long Covid.
  • It is applicable due to the recurrent, episodic and often disabling post-exertional symptom exacerbation (PESE) otherwise referred to as post-exertional malaise (PEM) which is a characteristic symptom of ME/CFS and Long Covid that can last for days and/or weeks.
  • Lactate monitoring presents an opportunity to support those living with ME/CFS and Long COVID, by allowing patients and practitioners to determine the intensity and anaerobic contribution to everyday tasks which could aid the development of pacing strategies that prevent PEM/PESE.

Source: Faghy PMA, Ashton DRE, McNeils MR, Arena R, Duncan DR. Attenuating Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long-COVID: Is Blood Lactate Monitoring the Answer? Curr Probl Cardiol. 2024 Mar 30:102554. doi: 10.1016/j.cpcardiol.2024.102554. Epub ahead of print. PMID: 38561114. https://www.sciencedirect.com/science/article/abs/pii/S0146280624001932

Health outcomes for Long COVID are comparable with ME/CFS

Press Release: Griffith News

People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new Griffith University research has discovered.

PhD student Breanna Weigel from Griffith’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) will be presenting the findings in Singapore this month at the International Public Health Conference.

Ms Weigel said the study found people with Long COVID have the same health outcomes as ME/CFS over a 12-month period.

“Quality of life and disability scores were significantly poorer for both Long COVID and ME/CFS when compared with healthy people,” she said.

“However, there were no differences between ME/CFS and Long COVID groups which indicates considerable reductions in functional capacity and health and well-being among people living with these illnesses.”

The research found only a few differences in more than 25 different symptoms between Long COVID and ME/CFS participants.

Importantly, both ME/CFS and Long COVID groups had comparable prevalence with the severity of their illness.

Both groups over time had the same symptom presentation of significantly impaired cognition, mobility, bodily pain, and post-exertional malaise (PEM) which means symptoms get worse after physical or mental activity.

PEM is very disabling and causes changes in symptoms and a further reduction in ability to do everyday activities.

Director of the NCNED, Professor Sonya Marshall-Gradisnik, said: “This research highlighted the continued impact of Long COVID on peoples’ lives, which is especially poignant as today we recognise International Long COVID Awareness Day.”

“The research forms one of many Long COVID investigations and clinical trials being undertaken at the national centre where it is hoped these findings will provide pathways for those with Long COVID.

“We are uniquely positioned nationally as we are the only centre to undertake scientific laboratory and MRI research in Long COVID and ME/CFS in tandem, and monitor the health and economic impact of the patients.

“At the national centre we also undertake clinical trials and contribute to best practice guidelines such as the recently published guidelines in the British Medical Journal for ME.”

Dr Natalie Eaton-Fitch, who was an undergraduate student at Griffith University and is now an emerging researcher at the NCNED said: “Researchers are very fortunate to have wonderful opportunities at all stages of their careers and to know research can make a real-world difference for people.”

Ms Weigel’s work builds upon the Issues Brief she did in collaboration with the Deeble Institute that reported how patient experiences can guide the development of Long COVID health policy.

 

Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness often triggered by an initiating acute event, mainly viral infections. The transition from acute to chronic disease remains unknown, but interest in this phenomenon has escalated since the COVID-19 pandemic and the post-COVID-19 illness, termed ‘long COVID’ (LC). Both ME/CFS and LC share many clinical similarities.

Here, we present recent findings in ME/CFS research focussing on proposed disease pathologies shared with LC. Understanding these disease pathologies and how they influence each other is key to developing effective therapeutics and diagnostic tests. Given that ME/CFS typically has a longer disease duration compared with LC, with symptoms and pathologies evolving over time, ME/CFS may provide insights into the future progression of LC.

Source: Annesley SJ, Missailidis D, Heng B, Josev EK, Armstrong CW. Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies. Trends Mol Med. 2024 Mar 4:S1471-4914(24)00028-5. doi: 10.1016/j.molmed.2024.02.003. Epub ahead of print. PMID: 38443223. https://www.sciencedirect.com/science/article/pii/S1471491424000285 (Full text)

The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often experience autonomic symptoms. In the present study, we evaluated 193 adults seeking treatment for ME/CFS, who were recruited from an outpatient clinic. The participants completed a head-up tilt table test to assess two common types of orthostatic intolerance, namely, postural orthostatic tachycardia syndrome (POTS) and orthostatic hypotension (OH).
During the tilt test, 32.5% of the participants demonstrated POTS or OH. The participants with either of these two common types of orthostatic intolerance were found to have more problems with sleep and post-exertional malaise as assessed by the DePaul Symptom Questionnaire; these patients also reported more physical and health function limitations. The implications of the findings are discussed.
Source: Jason LA, McGarrigle WJ, Vermeulen RCW. The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Journal of Personalized Medicine. 2024; 14(3):238. https://doi.org/10.3390/jpm14030238 https://www.mdpi.com/2075-4426/14/3/238 (Full text)

Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study

Abstract:

Background A central feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), which is an acute worsening of symptoms after a physical, emotional and/or mental exertion. Dynamic measures of PEM have historically included scaled questionnaires, which have not been validated in ME/CFS. To enhance our understanding of PEM and how best to measure it, we conducted semistructured qualitative interviews (QIs) at the same intervals as visual analogue scale (VAS) measures after a cardiopulmonary exercise test (CPET).

Methods Ten ME/CFS and nine healthy volunteers participated in a CPET. For each volunteer, PEM symptom VAS (12 symptoms) and semistructured QIs were administered at six timepoints over 72 hours before and after a single CPET. QI data were used to plot the severity of PEM at each time point and identify the self-described most bothersome symptom for each ME/CFS volunteer. Performance of QI and VAS data was compared with each other using Spearman correlations.

Results Each ME/CFS volunteer had a unique PEM experience, with differences noted in the onset, severity, trajectory over time and most bothersome symptom. No healthy volunteers experienced PEM. QI and VAS fatigue data corresponded well an hour prior to exercise (pre-CPET, r=0.7) but poorly at peak PEM (r=0.28) and with the change from pre-CPET to peak (r=0.20). When the most bothersome symptom identified from QIs was used, these correlations improved (r=0.0.77, 0.42. and 0.54, respectively) and reduced the observed VAS scale ceiling effects.

Conclusion In this exploratory study, QIs were able to capture changes in PEM severity and symptom quality over time, even when VAS scales failed to do so. Measurement of PEM can be improved by using a quantitative–qualitative mixed model approach.

Source: Stussman B, Calco B, Norato G, et al. Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study. BMJ Neurology Open 2024;6:e000529. doi: 10.1136/bmjno-2023-000529  https://neurologyopen.bmj.com/content/6/1/e000529 (Full text)