Carers Week 8-14 June 2020: Making caring visible

Posted on 06/12/2020 by wames

Carers Week 2020: Making caring visible

 

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:

Are you looking after someone unpaid?: essential information for unpaid carers

Ydych chi’n gofalu ar ôl rhywun yn ddi-dâl?: gwybodaeth bwysig I ofalwyr di-dâl

Find out more about caring from:

WAMES helpline   Carers Trust   Carers Wales    Age Cymru    local council

Learning for Living – using your skills

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.

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Impact of Coronavirus: people with chronic illness say “I feel forgotten”

Posted on 06/12/2020 by wames

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.

Read the full response here.

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.

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Scientists call for more European research on ME/CFS

Posted on 06/12/2020 by wames

European ME Coalition Press Release: Scientists call for more European research on ME/CFS, 10 June 2020

 

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

Read the open letter and list of signees

This press release is available in French, Spanish, Italian, German and Dutch.

You can contact us at: evelienvandenbrink.euteam@gmail.com. Our main
email address europeanmecoalition@gmail.com is currently experiencing
some technical difficulties.

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Physical activity measures in patients with ME/CFS: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, & the number of steps from an activity meter

Posted on 06/11/2020 by wames

Physical activity measures in patients with myalgic encephalomyelitis/chronic fatigue syndrome: correlations between peak oxygen consumption, the physical functioning scale of the SF-36 questionnaire, and the number of steps from an activity meter, by CMC van Campen, Peter C Rowe, Freek WA Verheugt & Frans C Visser in Journal of Translational Medicine vol 18, no. 228 (2020) [doi.org/10.1186/s12967-020-02397-7]

 

Research abstract:

Background:

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.

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Health-related quality of life in Norwegian adolescents living with CFS

Posted on 06/10/2020 by wames

Health-related quality of life in Norwegian adolescents living with Chronic Fatigue Syndrome, by  Wenche Ann Similä, Vidar Halsteinli, Ingrid B Helland, Christer Suvatne, Hanna Elmi, Torstein Baade Rø in Health Qual Life Outcomes. 2020 Jun 5;18(1):170 [doi: 10.1186/s12955-020-01430-z]

 

Research abstract:

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.

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The Health Minister, Covid-19, ME, rehabilitation & NICE

Posted on 06/08/2020 by wames

The Health Minister comments on Covid-19, ME, rehabilitation & NICE

 

The Health Minister Vaughan Gething has replied to the letter WAMES sent to him on International ME Awareness Day highlighting the links between Covid-19, PVFS and ME, and requesting a combined strategy for care.  We note that the forthcoming guidance on rehabilitation “will not be condition specific” so WAMES will be ensuring rehabilitation practitioners are informed about the dangers of exercise intolerance for people with ME, PVFS and potentially Covid-19 survivors.

 

4 June 2020

Dear Jan,

Thank you for your letter of 13 May regarding the care for people with COVID-19 and ME, and calling for a strategy to recognise and treat illnesses triggered by all viruses. I note this letter was also issued to Andrew Goodall. [DG of NHS Wales]

The Welsh Government recognises the important role that effective rehabilitation has in reducing the physical, psychological, emotional, social and economic impacts of both COVID-19 and non COVID-19 related illness. That is why we are developing national guidance to assist service planning for the anticipated demand for rehabilitation and recovery of both COVID-19 and non-COVID-19 populations in adults and children.

This work is being undertaken by the multi-professional, multi-sector Rehabilitation Task and Finish group and is currently in the process of being finalised. Two specific rehabilitation frameworks will underpin this: one identifying rehabilitation needs for those recovering from COVID-19 and one for the wider population with continuing or new rehabilitation needs. Rehabilitation focusses on the impact for the person and ways of resolving those impacts, rather than the condition that causes the impact and so the rehabilitation guidance and frameworks will not be condition specific.

With regards to NICE guidance, the Welsh Government has previously acknowledged your concerns regarding this and I reiterate that NICE guidance remains extant and should be followed by clinicians in Wales until such time that they are revoked or replaced.

You have also requested that ME/CFS be added to the shielded list. The main criteria for inclusion in the shielded list is that people from this group would be more likely to have a significantly higher death rate as a direct consequence of their condition. There is no clear evidence that this is, or would be, anticipated to be the case for this group of individuals, and as such they have not been included. If in due course, significant evidence does emerge this will be considered by the Chief Medical Officers across the four Nations.

Finally, the Welsh Government proposal to combine persistent pain, arthritis, ME/CFS and fibromyalgia into one advisory group will support both common approaches to these conditions where feasible, whilst also ensuring that condition specific approaches are maintained where required. However, we will review this approach as part of our wider approach to health and social care recovery from COVID-19.

Yours sincerely,

Vaughan Gething AS/MS
Y Gweinidog Iechyd a Gwasanaethau Cymdeithasol
Minister for Health and Social Services

CC: Andrew Goodall

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The concept of ‘illness without disease’ impedes understanding of CFS: a response to Sharpe & Greco

Posted on 06/08/2020 by wames

The concept of ‘illness without disease’ impedes understanding of chronic fatigue syndrome: a response to Sharpe and Greco, by Steven Lubet, David Tuller in BMJ Medical Humanities. Published Online First: 01 June 2020. [doi: 10.1136/medhum-2019-011807]

 

Article abstract:

In a recent article in Medical Humanities, Sharpe and Greco characterise myalgic encephalomyelitis/  chronic fatigue syndrome (ME/CFS) as an ‘illness without disease’, citing the absence of identified diagnostic markers.

They attribute patients’ rejection of psychological and behavioural interventions, such as cognitive–behavioural therapy (CBT) and graded exercise therapy (GET), to a ‘paradox’ resulting from a supposed failure to acknowledge that ‘there is no good objective evidence of bodily disease’.

In response, we explain that understandings about the causes of and treatments for medical complaints have shifted across centuries, and that conditions once thought to be ‘psychosomatic’ have later been determined to have physiological causes.

We also note that Sharpe and Greco do not disclose that leading scientists and physicians believe that ME/CFS is a biomedical disease, and that numerous experts, not just patients, have rejected the research underlying the CBT/GET treatment approach.

In conclusion, we remind investigators that medical classifications are always subject to revision based on subsequent research, and we therefore call for more humility before declaring categorically that patients are experiencing ‘illness without disease’.

Read full article

Read summary of article by Steven Lubet: Is ME/CFS an “Illness without Disease”?

No. No it is not. No matter what certain psychiatrists have opined..

…Given psychiatry’s long history of mistaken theories of disease
causation, there is an almost wondrous grandiosity to Sharpe and
Greco’s proposed solution to the supposed “paradox” that troubles
them. Rather than conceding that CBT and GET may be failed therapies
for ME/CFS, and that biomedical research may ultimately hold the key,
they instead call for “a major long-term change in thinking” on the
part of patients, clinicians and scientists who do not share their
particular views regarding the “moral connotations of illness and
disease”.

The illness-without-disease concept can be a useful tool in
exploring interactions between patients and health care systems, but
only if it is recognized as highly contingent and subject to the
admitted limitations of current knowledge. Contra Sharpe and Greco,
patients would be better served by greater humility accompanied by an
understanding that medical categories are always provisional and
therefore subject to change with advances in research.

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Metabolic dysfunction in ME/CFS not due to anti-mitochondrial antibodies

Posted on 06/05/2020 by wames

Metabolic dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome not due to anti-mitochondrial antibodies, by Isabell Nilsson, Jeremy Palmer, Eirini Apostolou, Carl-Gerhard Gottfries, Muhammad Rizwan, Charlotte Dahle and Anders Rosén in Front. Med., 31 March 2020 [doi.org/10.3389/fmed.2020.00108 ]

 

Research abstract:

Metabolic profiling studies have recently indicated dysfunctional mitochondria in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This includes an impaired function of pyruvate dehydrogenase complex (PDC), possibly driven by serum factor(s), which leads to inadequate adenosine triphosphate generation and excessive lactate accumulation. A reminiscent energy blockade is likely to occur in primary biliary cholangitis (PBC), caused by anti-PDC autoantibodies, as recently proposed. PBC is associated with fatigue and post-exertional malaise, also signifying ME/CFS.

We herein have investigated whether ME/CFS patients have autoreactive antibodies that could interfere with mitochondrial function. We found that only 1 of 161 examined ME/CFS patients was positive for anti-PDC, while all PBC patients (15/15) presented significant IgM, IgG, and IgA anti-PDC reactivity, as previously shown. None of fibromyalgia patients (0/14), multiple sclerosis patients (0/29), and healthy blood donors (0/44) controls showed reactivities. Anti-mitochondrial autoantibodies (inner and outer membrane) were negative in ME/CFS cohort. Anti-cardiolipin antibody levels in patients did not differ significantly from healthy blood donors.

In conclusion, the impaired mitochondrial/metabolic dysfunction, observed in ME/CFS, cannot be explained by presence of circulating autoantibodies against the tested mitochondrial epitopes.

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Modeling disability: softly making the invisible visible

Posted on 06/03/2020 by wames

Modeling disability: softly making the invisible visible, by Libby Evan (2020) Bachelor of Fine Arts Senior Papers 74

 

Research abstract:

“I am not asking for pity. I am telling you about my disability.” – Eli Clare1

In the following Bachelor of Fine Arts thesis statement, you will not find someone overcoming their disability. You will not find a tale of inspiration. You will not find a cure for ableism. You 2 simply will find an individual’s experience of disability— my experience of disability.

Impossible stairs

My invisible disability puts the medical model and social model of disability in constant tension as I navigate everyday life living with Chronic Fatigue Syndrome and severe arthritis. Both models seek to find blame for disability, whether in searching for a medical cure for illness or putting blame on society at large for creating barriers. Instead of abiding by these limiting models, I cope with disability in my own way. I embrace the contradictory notion of having significant physical limitations while giving into the pressures of our capitalist society to physically produce.

I make my own models through accepting my identity and embracing the human-like, huggability of soft sculpture. As a sculptor, I do not need to find blame through theoretical models of disability. Instead, I make literal models representing my lived experience. I turn my invisible, private experiences into visible, public ones.

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Sleep problems in adolescents with CFS: a case-control study nested within a prospective clinical cohort

Posted on 06/01/2020 by wames

Sleep problems in adolescents with CFS: A case-control study nested within a prospective clinical cohort, by Maria Elizabeth Loades, Katharine A Rimes, Trudie Chalder in Clinical Child Psychology and Psychiatry, May 22 2020 [doi.org/10.1177/1359104520918364]

 

Research abstract:

Sleep problems have a negative impact on a range of outcomes and are very common in adolescents with chronic fatigue syndrome (CFS). We aimed to (a) establish whether adolescents with CFS have more self-reported sleep problems than illness controls as well as healthy controls, (b) investigate changes in sleep problems and (c) explore the extent to
which sleep problems at baseline predict fatigue and functioning at follow-up in adolescents with CFS.

The Insomnia Scale was completed by 121 adolescents with CFS, 78 healthy adolescents and 27 adolescents with asthma. Eighty (66%) treatment-naive adolescents with CFS completed questionnaires approximately 3 months later.

Adolescents with CFS reported increased sleep problems compared to healthy controls and adolescents with asthma. In CFS, there was no significant change in sleep problems without treatment over a 3-month follow-up. Sleep problems at baseline predicted a significant proportion of the variance in sleep problems at follow-up. Sleep problems should be targeted in treatment. Regulating the ‘body clock’ via the regulation of sleep could influence outcomes not assessed in this study such as school attainment.

Read full paper

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