Tag: medical attitudes

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)

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

By George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

Read the full article in The Guardian HERE.

What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence

Abstract:

Background: Long COVID is a devastating, long-term, debilitating illness which disproportionately affects healthcare workers, due to the nature of their work. There is currently limited evidence specific to healthcare workers about the experience of living with Long COVID, or its prevalence, pattern of recovery or impact on healthcare.

Objective: Our objective was to assess the effects of Long COVID among healthcare workers and its impact on health status, working lives, personal circumstances, and use of health service resources.

Methods: We conducted a systematic rapid review according to current methodological standards and reported it in adherence to the PRISMA 2020 and ENTREQ statements.

Results: We searched relevant electronic databases and identified 3770 articles of which two studies providing qualitative evidence and 28 survey studies providing quantitative evidence were eligible. Thematic analysis of the two qualitative studies identified five themes: uncertainty about symptoms, difficulty accessing services, importance of being listened to and supported, patient versus professional identity and suggestions to improve communication and services for people with Long COVID. Common long-term symptoms in the survey studies included fatigue, headache, loss of taste and/or smell, breathlessness, dyspnoea, difficulty concentrating, depression and anxiety.

Conclusion: Healthcare workers struggled with their dual identity (patient/doctor) and felt dismissed or not taken seriously by their doctors. Our findings are in line with those in the literature showing that there are barriers to healthcare professionals accessing healthcare and highlighting the challenges of receiving care due to their professional role. A more representative approach in Long COVID research is needed to reflect the diverse nature of healthcare staff and their occupations. This rapid review was conducted using robust methods with the codicil that the pace of research into Long COVID may mean relevant evidence was not identified.

Source: Cruickshank M, Brazzelli M, Manson P, Torrance N, Grant A. What is the impact of long-term COVID-19 on workers in healthcare settings? A rapid systematic review of current evidence. PLoS One. 2024 Mar 5;19(3):e0299743. doi: 10.1371/journal.pone.0299743. PMID: 38442116; PMCID: PMC10914278. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914278/ (Full text)

Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study

Abstract:

Background: Little is known about how to best evaluate, diagnose, and treat long COVID, which presents challenges for patients as they seek care.

Objective: Understand experiences of patients as they navigate care for long COVID.

Design: Qualitative study involving interviews with patients about topics related to seeking and receiving care for long COVID.

Participants: Eligible patients were at least 18 years of age, spoke English, self-identified as functioning well prior to COVID infection, and reported long COVID symptoms continued to impact their lives at 3 months or more after a COVID infection.

Approach: Patients were recruited from a post-COVID recovery clinic at an academic medical center from August to September 2022. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis.

Key results: Participants (n=21) reported experiences related to elements of care coordination: access to care, evaluation, treatment, and ongoing care concerns. Some patients noted access to care was facilitated by having providers that listened to and validated their symptoms; other patients reported feeling their access to care was hindered by providers who did not believe or understand their symptoms. Patients reported confusion around how to communicate their symptoms when being evaluated for long COVID, and they expressed frustration with receiving test results that were normal or diagnoses that were not directly attributed to long COVID. Patients acknowledged that clinicians are still learning how to treat long COVID, and they voiced appreciation for providers who are willing to try new treatment approaches. Patients expressed ongoing care concerns, including feeling there is nothing more that can be done, and questioned long-term impacts on their aging and life expectancy.

Conclusions: Our findings shed light on challenges faced by patients with long COVID as they seek care. Healthcare systems and providers should consider these challenges when developing strategies to improve care coordination for patients with long COVID.

Source: MacEwan SR, Rahurkar S, Tarver WL, Forward C, Eramo JL, Teuschler L, Gaughan AA, Rush LJ, Stanwick S, McConnell E, Schamess A, McAlearney AS. Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study. J Gen Intern Med. 2024 Feb 2. doi: 10.1007/s11606-024-08622-z. Epub ahead of print. PMID: 38308155. https://link.springer.com/article/10.1007/s11606-024-08622-z (Full text)

“None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVI

Abstract:

Background: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs.

Methods: Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed.

Results: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants.

Conclusion: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Source: Brehon K, Miciak M, Hung P, Chen SP, Perreault K, Hudon A, Wieler M, Hunter S, Hoddinott L, Hall M, Churchill K, Brown DA, Brown CA, Bostick G, Skolnik K, Lam G, Weatherald J, Gross DP. “None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID. BMC Health Serv Res. 2023 Dec 12;23(1):1396. doi: 10.1186/s12913-023-10288-y. PMID: 38087299; PMCID: PMC10714615. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714615/ (Full text)

Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective

Abstract:

in English, German

Background: ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that is predominantly viewed as a neuroimmunological multisystem disease, which is still unknown to many doctors in Germany or which they classify as a psychosomatic disease. From their perspective, ME/CFS patients report significant deficits in terms of medical treatment and a doctor-patient relationship (DP relationship) that is perceived as problematic. The aim of the present study is to more precisely analyse the process of finding a diagnosis as an influencing factor on the DP relationship in ME/CFS from the point of view of those affected.

Method: As part of an explorative qualitative survey, 544 ME/CFS patients (> 20 years; 455 ♀, 89 ♂) with a medical diagnosis of ME/CFS were asked in writing about their experiences with regard to the process of finding a diagnosis. The sampling was previously done by self-activation and via the snowball principle. The questionnaire to be answered was structured analogously to a focused, standardized guideline interview. The evaluation was carried out as part of a qualitative content analysis according to Mayring. Some of the results were subsequently quantified.

Results: The participants described what they saw as the inadequate process of making a diagnosis as a central factor in a problematic DP relationship in ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness, insist on their level of knowledge, ignore patient knowledge and disregard scientific information provided. They follow the standard program, think in “pigeonholes” and are incapable of systemic thinking. This has a significant impact on the DP relationship.

Discussion: From the point of view of ME/CFS patients, the process of making a diagnosis and the recognition of ME/CFS as a neuroimmunological multisystem disease are the central aspects of a DP relationship that they experience as problematic. In the past, findings classified as “subjective” and thus ignored, the pigeonholing that is characteristic of biomedically oriented medicine and a healthcare system that opposes systemic thinking when making a diagnosis have all been identified as factors that may have a significant impact on the DP relationship.

Source: Habermann-Horstmeier L, Horstmeier LM. Systemisches Denken, subjektive Befunde und das diagnostische „Schubladendenken“ bei ME/CFS – Eine vorwiegend qualitative Public-Health-Studie aus Patientensicht [Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective]. Dtsch Med Wochenschr. 2023 Dec 14. German. doi: 10.1055/a-2197-6479. Epub ahead of print. PMID: 38096913. https://pubmed.ncbi.nlm.nih.gov/38096913/

Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patient perspective

Abstract:

in English, German

Background: Most patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are dissatisfied with medical care. They complain about e. g. the lack of medical recognition of ME/CFS as a neuroimmunological disease and the medical perception of those affected as “difficult patients”.

Method: As part of an exploratory qualitative survey, 544 medically diagnosed ME/CFS patients (> 20 years; 455 ♀, 89 ♂) were asked about their subjective experiences with regard to the doctor-patient relationships (DP relationship) to their treating physicians. The questionnaire was structured analogously to a focused, standardized guideline interview. The written answers were evaluated using a qualitative content analysis according to Mayring.

Results: The participants reported a significant deterioration in their health situation and their quality of life as a result of misdiagnoses and incorrect treatments, the strained DP relationship and the lack of support from the physicians. All of this leads to fear of visiting the doctor, a general loss of trust in physicians, a feeling of helplessness up to bitterness and resignation – with suicide as the last mental option for some patients to escape from this precarious situation. During medical consultations, other participants only addressed health problems that were not related to ME/CFS, or only went to the doctor in an emergency, or refrained from contacting doctors entirely.

Conclusions: The DP relationship described by the participants as problematic in their opinion has significant negative health consequences for them. It is therefore of great urgency to develop a patient-centred treatment concept that focuses on ME/CFS patients as experts on their own illness.

Source: Habermann-Horstmeier L, Horstmeier LM. Auswirkungen der Qualität der Arzt-Patient-Beziehung auf die Gesundheit von erwachsenen ME/CFS-Erkrankten : Eine qualitative Public-Health-Studie aus Patientensicht [Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patien perspective]. MMW Fortschr Med. 2023 Dec;165(Suppl 5):16-27. German. doi: 10.1007/s15006-023-2894-z. PMID: 38062324.

Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study

Abstract:

Aims and objectives: Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.

Method: Interpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.

Results: Twenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches.

Conclusion: Patients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.

Source: Hasan Z, Kuyvenhoven C, Chowdhury M, Amoudi L, Zeraatkar D, Busse JW, Sadik M, Vanstone M. Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study. J Eval Clin Pract. 2023 Nov 6. doi: 10.1111/jep.13938. Epub ahead of print. PMID: 37927138. https://onlinelibrary.wiley.com/doi/10.1111/jep.13938 (Full text)

‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

Abstract:

Introduction: People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.

Methods: We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3-30 years), and severity.

Results: Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient’s need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.

Conclusions: Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high-quality care.

Patient or public contribution: The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

Source: Melby L, Nair RD. ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services. Health Expect. 2023 Oct 31. doi: 10.1111/hex.13900. Epub ahead of print. PMID: 37905602. https://onlinelibrary.wiley.com/doi/10.1111/hex.13900 (Full text)

Re: What happens inside a long covid clinic?

Dear Editor

As a patient with severe long covid and myalgic encephalomyelitis (M.E.), I was pleased to see the article ‘What happens in a long covid clinic?’ [1] raising awareness of the scale and impact of long covid and the importance of long covid clinics. According to a recent estimate by Altmann et al, 1 in 10 people who contract COVID-19 will be affected by long covid, whilst the oncoming impact of long covid on health systems, populations and economies will be “so large as to be unfathomable”.[2]

Around 2-14% of patients with long covid develop orthostatic tachycardia six to eight months after COVID infection and as many as 60% show some symptoms of POTS. [3] Yet there remain no agreed guidelines for POTS in long covid, making the early diagnosis and management of the condition in primary care challenging. NICE guidance on long covid only mentions POTS in passing with no information on management.[4] The approach outlined by Espinosa-Gonzalez and colleagues to diagnose and manage POTS in primary care could greatly improve function and health for people with POTS.[5]

While I commend the excellent NHS services highlighted in the feature [1], as a patient with severe long covid I would question how prevalent this integrated medically-led care model is across the country despite it being in the ‘The NHS plan for improving long covid services’.[6] Many patients I speak to in long covid support groups report long waits, only to then be offered basic wellbeing classes or rehabilitation without any active treatment for symptoms.

Access to clinics for the most severely affected is variable with not all services offering remote consultations or home visits. It is imperative that long covid clinics are medically led, inter-disciplinary and able to prescribe medications. Additionally, we need the same standard of care for patients with ME/CFS, who are still waiting for NICE guidance from 2021[7] to be implemented. A recent survey noted there remain significant gaps in provision for patients with ME/CFS.[8]

Previously young fit and healthy patients with severe long covid and ME are being left bed-bound without adequate diagnosis, support, care or treatment as there is no specialty or service that is set up to provide this. I went from climbing mountains and working on-call to unable to stand or feed myself in the space of 8 weeks with long covid – I am still severely affected a year later. Given the multi-system complexity of long covid and ME/CFS it is time for an interdisciplinary patient-centred service for post-viral illnesses that recognises the biological nature of the disease and the unique challenges patients with severe long covid and ME have with safely accessing services given their limited energy available, severe cognitive effects, physical immobility and range of complications across bodily systems.

The Department of Health and Social Care are currently seeking views on the interim delivery plan for ME/CFS care in an online consultation [9], which is relevant to both patient groups and professionals and could lay the groundwork for more comprehensive care of post-viral illnesses in the UK.

Yours sincerely,

Dr Alexis Gilbert BSc MBBS MPH FFPH

Source: MJ 2023;382:p1791 https://www.bmj.com/content/382/bmj.p1791/rr (Full text)