Altered muscle function often occurs in ME/CFS patients.
Reduced handgrip strength is proportional to lowered physical performance
Muscle fatigue could result from altered muscle excitability at work
Reduced central motor command is also documented in relation of encephalomyelitis
Subgroups of ME/CFS patients without muscle weakness are documented
Research abstract:
This commentary complements data reported in Clinical Biomechanics reporting reduced maximal handgrip strength in numerous patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in proportion to their lowered maximal physical performances.
The causes of muscle weakness in these patients are open to discussion. Literature data reveal a reduction of central command to skeletal muscles in some ME/CFS patients, related to encephalomyelitis.
Altered muscle membrane excitability, that is ‘peripheral fatigue’, is also described in
relation with an imbalance of the oxidant/anti-oxidant status. On the other hand, subgroups of chronically fatigued patients with clinical criteria of ME/CFS do not suffer from any muscle weakness.
Thus, clinical data do not sufficiently clarify homogeneous ME/CFS pathology.
An estimate of 2 million Europeans affected by the disease
ME/CFS is still poorly understood and consequently, underdiagnosed .
Increasing awareness is crucial to advance recognition of the illness
and to improve lives of patients
Parliament wants to increase EU funding in order to advance research on diagnostic tests and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
In a resolution adopted on Wednesday with 676 votes in favour, 4 against and 8 abstentions, the European Parliament calls for additional EU funding for research on ME/CFS and the prioritisation of projects focused on biomedical research.
This comes after Parliament has received a number of petitions raising concerns over the absence of treatment and insufficient funding for research related to the disease that affects an estimate of 2 million people within the EU.
Support for biomedical research
“Myalgic encephalomyelitis is a chronic neuro-immune disease which affects many people, but unfortunately little is known about its causes and possible cure. We want to improve the everyday lives of patients and their families who are suffering and at risk of social exclusion.” said Dolors Montserrat (EPP, ES), Chair of the Petitions Committee.
“By adopting this resolution, Parliament gives voice to patients’ concerns and supports their legitimate requests for greater awareness and funding for research. We urge the Commission to allocate additional funds for EU biomedical research on ME/CFS, in order to quickly develop diagnostic tests and ensure patients have access to effective treatment.”
Promoting cooperation
The resolution calls for more European and international cooperation on research into ME/CSF, in order to speed up the development of objective diagnostics standards and treatment. In addition, the Commission should look into the feasibility of an EU fund for
prevention and treatment of ME/CFS, suggest MEPs.
Raising awareness
Due to insufficient knowledge among healthcare providers and absence of appropriate testing, ME/CFS is still poorly understood and as a result, underdiagnosed. Poor knowledge also can lead to stigmatisation and psychological distress, remind MEPs. The resolution emphasises the lack of recognition and awareness on this type of diseases and calls on the Commission and member states to launch information and awareness campaigns among health professionals and the public.
Background information
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity and progression are extremely variable. The absence of treatment and insufficient funding for research on the disease, which affects an estimate of 2 million people in the EU, was already highlighted in several questions to the Commission and petitions from citizens. The economic burden of the disease across Europe was estimated to amount to EUR 40 billion each year.
We await developments. The Resolution accepts the challenges face by those affected by the illness; the lack of support and recognition and, above all, the dearth of funding directed towards understanding this illness. However, Resolutions do not necessarily result in action.
Background Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.
Method
Data was collected from 476 participants (411 women and 65 men), living with ME from across the UK. Multinomial logistic regression investigated the predictive utility of length of time with ME; geographic location (i.e. Manchester vs. rest of UK); trust in GP; whether the patient had received a formal diagnosis; time taken to diagnosis; and gender. The outcome variable was number of GP visits per year.
Results
All variables, with the exception of whether the patient had received a formal diagnosis, were significant predictors.
Conclusions
Relationships between ME patients and their GPs are discussed and argued to be key to the effective delivery of care to this patient cohort. Identifying potential barriers to doctor patient interactions in the context of ME is crucial.
Discussion
A significant proportion of ME suffers reported unsatisfactory relationships with their GP. This finding indicated that ME patients experience a troubled relationship with their primary health contact. Indeed, approximately half of the surveyed participants did not trust their GP. Trust was only evident within the monthly GP visit group. These are important outcomes because lack of trust can negatively affect the number of times patients visit GPs and condition management [17, 21, 27]. One strategy with the potential to address this issue is for GPs to cultivate a sense of “we-ness”. Shared GP/ME patient group membership and common goals may facilitate respect and trust [4, 24]. Building rapport with this cohort is vital.
Potential barriers to positive in-group inclination are depersonalization and stereotyping. From the perspective of GPs, the ME patient group are problematic because ME diagnosis is often considered contentious [15, 24], prevalence is low, and, importantly, ME is absent from the Quality and Outcome Framework [3]. These factors combine to make ME management and treatment challenging and time consuming [15, 16, 20]. Within the present study, formal diagnosis and time to diagnosis had little effect on ME patient visits. The notable exception was the 3–6 month category, where diagnosis was associated with increased GP visits in the 5–6 a year and monthly categories. These results suggest this is an important period for diagnosis. Subsequent research should examine this further.
Moreover, the groups that patients understand themselves as belonging to potentially influences symptom appraisal/responses, health related norms/behaviours, coping, social support and clinical outcomes [22, 23]. Thus, from a health and well-being perspective, it is clear that individual’s relationships, and identification, with their medical and social care providers are of vital importance. Indeed, for people living with chronic conditions, the GP relationship is a crucial factor [4, 18, 19]. As such, the functionality of the doctor patient interaction is fundamental to individual well-being. Mutual respect is a core facet at the heart of this relationship [3, 17].
Illustratively, St Claire and Clucas [27] observed that patients reported several affirmative outcomes when they perceived their doctor as respectful (i.e., greater satisfaction, intention to adhere to advice, and inclination to revisit). Thus, positive patient regard not only enhances the doctor and patient interaction, but also improves patient prognosis by reducing symptoms and facilitating healthy behaviours. In this context, communication and skills training may help to enhance GP interaction with ME patients. Succeeding studies should assess this area.
The results of the present study also revealed a negative relationship between length of ME and frequency of GP visits, as the length of the condition extended patients reported fewer GP visits. One way to understand this is to build conceptually on a recognition of the importance of communication. Consistent with the positive link between trust and GP visits [3, 17], De Carvalho Leite et al. [28] reported that inadequate communication between patients and professionals was often a barrier to care. With a significant proportion of English GPs reported as being sceptical of ME as a diagnosis [3, 14], it is not surprising that patients frequently report their attempts to access services as ‘exhausting, demoralising and isolating’ [15, 20, 28].
In line with this qualitative literature, our findings reveal that over time ME patients engage less with medical practitioners. Although, the reasons for this are currently unclear, this finding suggests that improved doctor and ME patient communication and monitoring is advisable. This would help to track number of appointments attended, frequency, and points at which attendance cease. Maintaining and engaging with treatment is vital to condition management and well-being. A general remedy for ineffective communication is to provide empathic, personalised and co-ordinated support from health and social services [3, 17, 28]. Additionally, when ME patients stop visiting their GP it is recommended that reasons for non-attendance are sought. Collation and consideration of such feedback could usefully inform subsequent investigation.
This study found also that gender was an important factor. Specifically, women were more likely to visit their GP than men. Indeed, analysis of gender revealed that women were more likely to visit their GP more than 5 times a year (40.3%) compared with men (23.1%). Psychology has long recognised the importance of gender [6, 29, 30] which is most usefully considered as a function of social and developmental factors rather than as an essentialist actuality. Sandberg, Pasterski, and Callens, [31] for example argued that different psychosexual developmental experiences manifest in women as a sense of self that is relational, whereas men’s sense of self is more independent and less contingent on interpersonal connection [5, 23, 30].
Gender differences in health service access have received relatively little attention in the UK. When studies evaluate gender, they focus typically on women’s issues, particularly male privilege [6, 32]. The present article highlighted the fact that men also possess important healthcare needs. Hence, effective provision needs to recognise the needs of all gender groups. Haslam [33] argues that, from clinical and health perspectives, in order to engage usefully with identity (including gender) researchers need to work with an individual’s sense of self rather than across it. Study findings recommend that health care professionals would benefit from increased awareness of this issue.
One mechanism through which gender differences may arise is stereotyping. Stereotyping defines appropriate and relevant behaviours within particularly contexts and guides expectations [30, 34, 35]. For example, the typical male stereotype implies that a person has psychological capability, goal-orientation, self-confidence as well as social dominance [30, 35]. This implies that men are resilient [34]. Moreover, the male stereotype positions ‘real’ men as being invulnerable [29, 35].
Importantly this process of categorization links to existing social relations, [22, 23, 36], including relationships with medical service providers [4, 6]. The norms of stoicism and control associated with masculinity often prevent men from seeking healthcare where they believe they risk lapsing into a passive and/or ‘feminine’ sick role that is associated with weakness [32]. The argument presented in this paper, driven by the finding that men are less likely to be engaged with their GP, is that medical practitioners need to engage with men, recognize and harness these male identities/stereotypes and norms by working with, rather than across them [4, 22, 33].
A final important variable was geographic location. Isakson et al. [37] contend that when there are preventable health inequities between people, the distribution of health resources that shape the inequity require consideration. Such questioning is the raison d’être of Healthwatch networks. Indeed, Healthwatch Trafford commissioned this patient experience gathering exercise because of reported patient issues within the Greater Manchester region. Specifically, they were keen to determine whether there were variances in ME treatment compared with the rest of the UK. Results revealed a significant difference. Greater Manchester residents living with ME visited their GPs more frequently than those living in the rest of the country did. Future research should attempt to unpack this finding in order to identify what this might be.
In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min head-up tilt to 70 degrees, 90% had an abnormal reduction in cerebral blood flow (CBF).
A standard head-up tilt test of this duration might not be tolerated by the most severely affected bed-ridden ME/CFS patients. This study examined whether a shorter 15-min test at a lower 20 degree tilt angle would be sufficient to provoke reductions in cerebral blood flow in severe ME/CFS patients.
Methods and results:
Nineteen severe ME/CFS patients with orthostatic intolerance complaints in daily life were studied: 18 females. The mean (SD) age was 35(14) years, body surface area (BSA) was 1.8(0.2) m2 and BMI was 24.0(5.4) kg/m2. The median disease duration was 14 (IQR 5–18) years. Heart rate increased, and stroke volume index and end-tidal CO2 decreased significantly during the test (p ranging from <0.001 to <0.0001). The cardiac index decreased by 26(7)%: p < 0.0001. CBF decreased from 617(72) to 452(63) mL/min, a 27(5)% decline.
All 19 severely affected ME/CFS patients met the criteria for an abnormal CBF reduction.
Conclusions:
Using a less demanding 20 degree tilt test for 15 min in severe ME/CFS patients resulted in a mean CBF decline of 27%. This is comparable to the mean 26% decline previously noted in less severely affected patients studied during a 30-min 70 degree head-up tilt.
These observations have implications for the evaluation and treatment of severely affected individuals with ME/CFS.
4.1. Clinical Implications
Patients are advised to lie down when they experience orthostatic intolerance complaints. Our findings of a clinically significant cerebral blood flow reduction at just 20 degrees suggest that a slight head-up position may not be adequate enough to resolve symptoms of orthostatic intolerance in some patients. Furthermore, the European Society of Cardiology syncope guidelines and other papers advocate the use of a nocturnal head-up position of more than 10 degrees to prevent nocturnal polyuria and the consequent circulatory underfilling [45,46,47,48]. In light of the presented results, this advice has the potential to be detrimental in some ME/CFS patients.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) includes symptoms such as post-exertional malaise, unrefreshing sleep, and cognitive impairments.
Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area.
This study explores risk factors for suicide among 64 individuals with ME/CFS using archival data, 17 of which died from suicide.
Results indicated an increased risk of suicide for those utilizing the label CFS, for those with limited overall functioning, and for those without comorbid illnesses. Findings suggest that stigma and functional impairments limit access to care and social supports.
Carers Week is an annual campaign to raise awareness of caring and
highlight the challenges unpaid carers face
recognise the contribution they make to families and communities throughout the UK
help people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.
People with ME want to say thank you to everyone who helps them when they need support!
We want to make Caring Visible to help carers get the information and support they need. This guide outlines 10 steps to help carers think about the support they might need:
The free interactive e-learning programme, Learning for Living, helps carers develop greater understanding of the unique skills and knowledge they use on a day-to-day basis in their caring role, and how they can transfer these skills to the workplace. Available in Welsh or English.
Chronic Illness Inclusion Project blog post: “I feel forgotten”, by Anna Ruddock, June 1 2020
A submission to the Women and Equalities Committee about the impact of coronavirus on people with chronic illness.
In April, the Women and Equalities Committee put out a call for evidence about the impact of coronavirus (covid-19) on people with protected characteristics. We submitted evidence based on the findings from a survey we conducted to ask about the impact of coronavirus and associated policies on people with chronic illness. The survey was open to anyone based in the UK living with at least one chronic condition.
The evidence brief we submitted was based on 776 responses [including people in Wales] – thank you to everyone who took part. This blog highlights the key findings that we have recommended the government takes into account when reviewing its response to the coronavirus pandemic.
There is a population who are at increased risk from coronavirus due to underlying chronic conditions but who are not included on the government’s highest risk list. These people’s needs are being ignored and their health and wellbeing is deteriorating.
Overall wellbeing and access to food and essential supplies were the areas that respondents reported had been most negatively impacted by the pandemic. 86% of respondents reported that the pandemic has had a negative impact on their ability to access food and essential supplies. Many of these people are largely housebound and rely on supermarket deliveries. They are now denied access because of overwhelming demand and unclear guidance. For example, although ME is a neurological condition, it is not specifically named in the guidance that shops and services are using to respond to the needs of vulnerable customers.
Further, 28% of respondents reported that they did not know if their chronic conditions placed them at greater risk. The lack of clear and consistent guidance about underlying conditions is preventing people with chronic conditions accessing essentials for survival.
The pandemic has already had a significant impact on access to GP and specialist care for the majority of our respondents. Of the respondents under the regular care of a GP or specialist, 66% reported disruption to care during the pandemic. This has long-term implications for people’s health and will place increased pressure on the NHS and social care once the current crisis has passed.
56% of respondents reported that their health had got worse since the pandemic began, with a significant number reporting the detrimental impact of increased stress and anxiety.
Many respondents reported experiences of discrimination and ableism in shops, the NHS, the media and public conversation. People reported feeling unseen, unheard and unvalued.
The survey yielded a rich data that sheds crucial light on the challenges faced by people living with chronic illness during the coronavirus pandemic. There are two key limitations of the exercise, however.
First, the respondents were from an overwhelmingly white ethnic background. This constrains our ability to conduct the intersectional analysis that is critical to more deeply understanding the unequal impact of the pandemic on black and ethnic minority people living with underlying health conditions.
Second, we disseminated the survey primarily through the CIIP mailing list and Twitter and it was only open for a short period. The responses therefore represent people with existing access to those networks, and who were well enough to complete the survey in the time available.
For these reasons, we cannot generalise these results to people with chronic illness who are the most socioeconomically marginalised. And we can be confident that this report reveals only the tip of the iceberg when it comes to the difficulties faced by disabled people during the coronavirus pandemic.
The Chronic Illness Inclusion Project aims to bridge the chronic illness community and the disability rights movement, and bring together people with energy limiting chronic illnesses (ELCI) including ME, and increase awareness of disability rights.
More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones. [Draft agenda]
ME/CFS is a long-term, debilitating illness that causes extreme exhaustion, poor concentration and memory, unrefreshing sleep, and many other symptoms.
“The most characteristic feature is a worsening of symptoms following exertion,” says Evelien Van Den Brink, a Dutch patient who has suffered from ME/CFS for twenty-two years, since the age of fourteen.
Because there is no cure for ME/CFS and its pathology remains poorly understood, Evelien submitted a petition to the European Parliament, asking for more scientific research into the condition. “More science is the only way forward,” Evelien says. “I’m almost completely bed-bound and I know fellow patients who are even worse off. We cannot let another generation suffer from this horrible illness.”
The petition has been signed fourteen thousand times and resulted in the first-ever resolution on ME/CFS in the European Parliament.
“These patients have been ignored for far too long,” says Pascal Arimont, one of the members of Parliament who strongly supports the resolution. “There is currently no diagnostic test for ME/CFS because we know so little about the underlying pathology. In the US, Australia, and Canada, governments have invested substantial funds in ME/CFS research. Europe is running behind, so we urgently need to take action.”
An estimated two million European citizens suffer from ME/CFS.
Today, the upcoming resolution received support from an open letter signed by 115 researchers and scientists worldwide.
The letter stresses that ME/CFS “has long been a neglected area in medicine” despite its high societal burden and economic costs. “ME/CFS is not rare and it is highly debilitating,” says Professor Jonas Bergquist, who recently formed the ME/CFS Collaborative Research Center at Uppsala University, Sweden. “It often starts after a viral infection and we don’t really know what the mechanisms are for post-viral fatigue. Neuroinflammation and potentially autoimmune reactions may be parts of the explanation. More research is needed so that we get a better understanding of the disease.”
“A key priority is to develop a diagnostic test for ME/CFS to increase the accuracy of diagnosis,” Dr. Carmen Scheibenbogen, a Professor at Universitätsklinik Charité Berlin and one of the first signees of the letter, explains. “We hope to get a better understanding of the disease mechanism and eventually, an effective treatment. ME/CFS is one of the great challenges for modern medicine but I’m confident that a scientific breakthrough is possible.”
The open letter and full list of signees is available in the link below. For more info contact europeanmecoalition@gmail.com
Most studies to assess effort intolerance in patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have used questionnaires. Few studies have compared questionnaires with objective measures like an actometer or an exercise test. This study compared three measures of physical activity in ME/CFS patients: the physical functioning scale (PFS) of the SF-36, the number of steps/day (Steps) using an actometer, and the %peak VO2 of a cardiopulmonary stress test.
Methods:
Female ME/CFS patients were selected from a clinical database if the three types of measurements were available, and the interval between measurements was ≤ 3 months. Data from the three measures were compared by linear regression.
Results:
In 99 female patients the three different measures were linearly, significantly, and positively correlated (PFS vs Steps, PFS vs %peak VO2 and Steps vs %peak VO2: all P < 0.001). Subgroup analysis showed that the relations between the three measures were not different in patients with versus without fibromyalgia and with versus without a maximal exercise effort (RER ≥ 1.1).
In 20 patients re-evaluated for symptom worsening, the mean of all three measures was significantly lower (P < 0.0001), strengthening the observation of the relations between them. Despite the close correlation, we observed a large variation between the three measures in individual patients.
Conclusions:
Given the large variation in ME/CFS patients, the use of only one type of measurement is inadequate. Integrating the three modalities may be useful for patient care by detecting overt discrepancies in activity and may inform studies that compare methods of improving exercise capacity.
Study conclusion:
Disability grading or activity assessment in ME/CFS is most frequently performed using questionnaires like the physical functioning scale of the SF-36. Questionnaires can be augmented by adding more objective measures such as the number of steps on an activity meter and/or by adding peak VO2 data.
The relation between the physical functioning scale and the number of steps, and the relation between activity (steps), perceived activity (physical functioning scale) and the maximum attainable activity (peak VO2) may give insight into a possible over- or under-estimation of the perceived activity and over- or under-performance of physical activities.
Whether a better “energy management” leads to stabilization or improvement over time of patients needs to be studied. Finally, the presented standard deviations may aid the design of outcome studies.
Purpose: The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors before diagnosis, at time of diagnosis and after diagnosis that were associated with HRQoL.
Methods: In this cross-sectional population-based study, HRQoL was measured by Pediatric Quality of Life Inventory™ Generic Core scale version 4.0 (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimensional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from medical records and patient interviews.
Results: Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, 95% Confidence Interval (CI) for difference (- 27; – 6)).
Factors found with association to HRQoL in adolescents living with CFS/ME
There were positive associations between overall HRQoL and support from a schoolteacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.
Conclusion: HRQoL in adolescents diagnosed with CFS/ME was low. The associations between reported HRQoL, healthcare previously provided, support from a schoolteacher, school attendance and participation in leisure activity may provide information of value when developing refined strategies for healthcare among adolescents with CFS/ME. Possible causal relationships must however be explored in future studies.
Research paper conclusion
In this cross-sectional study of adolescents with CFS/ME we found low HRQoL. The study identified new and possibly important factors associated with HRQoL. When exploring factors before, at the time of or after diagnosis associated with HRQoL, we found that school attendance, support from a schoolteacher and participation in leisure activities were associated with higher HRQoL. We also found associations to higher emotional functioning, when occupational therapist, physical therapist and clinical nutritionist were engaged in diagnostic evaluation.
On the other hand, school absence higher than 50% before diagnostic evaluation, delayed school progression or having been to a rehabilitation stay were negatively associated with HRQoL. Early diagnosis, mapping of symptoms severity and HRQoL, maintaining school contact and early action to prevent depressive symptoms might be important to improve HRQoL in these patients.
Limitations to our study design imply that future interventional studies are needed to confirm whether the identified factors can be used to improve HRQoL in adolescents with CFS/ME.
This commentary complements data reported in Clinical Biomechanics reporting reduced maximal handgrip strength in numerous patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in proportion to their lowered maximal physical performances.
In a resolution adopted on Wednesday with 676 votes in favour, 4 against and 8 abstentions, the European Parliament calls for additional EU funding for research on ME/CFS and the prioritisation of projects focused on biomedical research.
Myalgic Encephalomyelitis (ME) is a chronic condition whose status within medicine is the subject of on-going debate. Some medical professionals regard it as a contentious illness. Others report a lack of confidence with diagnosis and management of the condition. The genesis of this paper was a complaint, made by an ME patient, about their treatment by a general practitioner. In response to the complaint, Healthwatch Trafford ran a patient experience-gathering project.
In a study of 429 adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), we demonstrated that 86% had symptoms of orthostatic intolerance in daily life. Using extracranial Doppler measurements of the internal carotid and vertebral arteries during a 30-min 
Several studies suggest these patients have an increased risk of suicidal ideation and early mortality, although few have published in this area.
People with ME want to say thank you to everyone who helps them when they need support!
In April, the Women and Equalities Committee put out a call for evidence about the impact of coronavirus (covid-19) on people with protected characteristics. We submitted evidence based on the findings from a survey we conducted to ask about the impact of coronavirus and associated policies on people with chronic illness. The survey was open to anyone based in the UK living with at least one chronic condition.
On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones. [
Because there is no cure for ME/CFS and its pathology remains poorly understood, Evelien submitted a petition to the European Parliament, asking for more scientific research into the condition. “More science is the only way forward,” Evelien says. “I’m almost completely bed-bound and I know fellow patients who are even worse off. We cannot let another generation suffer from this horrible illness.”
Most studies to assess effort intolerance in patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have used questionnaires. Few studies have compared questionnaires with objective measures like an actometer or an exercise test. This study compared three measures of physical activity in ME/CFS patients: the physical functioning scale (PFS) of the SF-36, the number of steps/day (Steps) using an actometer, and the %peak VO2 of a cardiopulmonary stress test.
