Visible: the app designed to make the invisible, visible

Posted on 12/06/2022 by Caitlin Morgan

‘Visible’

The app designed to track the different symptoms of ME and the effects of Long Covid, with the Beta version now being open to the general public.

 

Created by Harry Lemming, the app is aimed for those with chronic illnesses as a way of keeping track of their symptoms and providing free medical advice being provided within the app. Using the app, you can track fatigue, various types of pain, and many other aspects of invisible illness, with the simple use of their smartphone camera! All you need to do is create your own account and fill out which symptoms you would like to track to get started.

There is also a monthly paid prescription within the app – it is not required to join the prescription – called ‘Visible Plus’, that gives users a wearable device to track their symptoms for them, making it easier to keep track day-to-day.

Harry Lemming saw an opportunity for more advancement into the discussion of chronic illnesses after being diagnosed with Long Covid, stating that

“Patients like myself have little option but to build the disease management tools that are badly needed – for people living with long Covid, but also those with similarly dismissed chronic conditions”. 

The free app is a new development into understanding invisible illnesses but is not restricted to just ME/CFS and Long Covid, as it is accessible for people with other hidden illnesses. There is also an option to anonymously share your tracking data with different researchers in different universities, developing the medical understanding of ME/CFS and Long Covid to provide more insight into life with invisible illnesses for diagnosis. 

Find out more here:

Visible: The activity tracking platform for illness, not fitness

Health rising: Visible: The 1st Long-COVID and ME/CFS activity/PEM tracker is here

Health Tech: London’s Visible raises $1 million pre-seed to tackle Long Covid

UKTN: Visible raises $1 million to tackle Long Covid and other chronic conditions 

Download the App here:

Download on the App Store Here

Download on Google Play Here

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Research: Are there differences in symptoms among black & white patients with ME/CFS

Posted on 11/25/2022 by wames

Differences in symptoms among black and white patients with ME/CFS

 

American researchers Prof Leonard Jason and Chelsea Torres found comparable ME/CFS symptoms in a small study comparing Black and White patients, although in the control groups (i.e. people who didn’t have ME/CFS) Black people had more troublesome symptoms than the White controls.

Research abstract:

Study samples of patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have primarily involved White subjects, so the literature on ethnic differences is sparse.

The current study identified a sample of 19 Black patients diagnosed with ME/CFS and compared them with White patients with ME/CFS, as well as with healthy controls. The studies used a similar psychometrically sound assessment tool to assess symptoms in all subjects.

Findings indicated there were significant differences between patients with ME/CFS versus controls, but few differences between patients who identified as Black or White. The results suggest there might be few symptom differences between patients with ME/CFS in these two ethnic groups. The implications of these findings are discussed.

Differences in symptoms among black and white patients with ME/CFS, by Leonard A Jason, Chelsea Torres in Journal of Clinical Medicine Vol 11, #22, p 6708, November 12, 2022

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Carers rights day 24 Nov 2022 – Caring costs

Posted on 11/23/2022 by wames

Caring costs: Carers Rights day

 

Caring Costs in so many ways. It could be the cost to unpaid carers’ wellbeing and ability to access health services. Sometimes it’s the financial costs associated with looking after someone – or the effects on carers’ employment options.

Taking care of someone may cost carers the quality of their relationships through not being able to take time out to spend with friends and family or through changes to the relationship with those they care for.

And the current cost of living crisis is being felt even more acutely by carers throughout the UK.

Find out more from Carers UK       Find out about your rights 

Carers Wales briefing: The cost-of-living crisis for unpaid carers in Wales

Mobilise online: More info about carers rights and a free e-mail course for unpaid carers

Register for online events Thurs 24 Nov 2022:

3.00 – 4.00pm
Your rights – find out what rights you are entitled to as a carer

6.00 – 7.00 pm
Rights for Working Carers – for example how to talk to your manager about caring, carers’ policies at work and balancing work and care

Check your local carers service for local events

Powys: Unpaid carers conference at 3 venues on Fri 25 Nov

New website launches in west Wales

Western Telegraph:  Website to support unpaid carers across west Wales      Carers Support West Wales

Ceredigion: Cardigan Carers Rights event, Thurs 24 Nov

Carmarthenshire: Kidwelly, Thurs 24 Nov

Rhondda Cynon Taf:  Celebration Event, Llantrisant, Fri 25 Nov

Newport: Celebration & information event, Thurs 24 Nov

Wrexham: Information stalls, Thurs 24 Nov

Blaenau Gwent: Abertillery, Thurs 24 Nov

Torfaen: Cwmbran Caring costs roadshow, Thurs 24 Nov

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Research: fMRI reveals differences between ME/CFS diagnostic criteria

Posted on 11/18/2022 by wames

fMRI distinguishes between two classes of ME/CFS

 

Australian researchers have discovered that patients diagnosed using 2 different criteria, International Consensus Criteria (ICC) and the Fukuda criteria, have different brain activity. The main difference between the 2 criteria is that post-exertional malaise (PEM) is not an essential symptom for diagnosis.

They used Functional magnetic resonance imaging (fMRI) to measure brain activity during a resting state and during a task. “Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes.”

 

Connectivity between salience and default mode networks and subcortical nodes distinguishes between two classes of ME/CFS, by Jiasheng Su, Kiran Thapaliya, Natalie Eaton-Fitch, Sonya M Marshall-Gradisnik, Leighton R Barnden in Brain Connectivity [doi.org/10.1089/brain.2022.0049] Nov 9, 2022

Research abstract

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease with unknown pathophysiology. Functional MRI (fMRI) studies in ME/CFS have reported disparate connectivities for the brain salience (SA) and default mode (DMN) networks.

In this study, we acquired resting state and task fMRI with an advanced scanner for improved subject numbers: 24 healthy controls (HC) and 42 ME/CFS patients, 18 meeting International Consensus Criteria (ICC) and 24 meeting Fukuda criteria. We evaluated mean FC between SA and DMN network hub, and subcortical regions known to be involved in ME/CFS.

We tested the hypothesis that ME/CFS connectivity differed from HC and the ICC and Fukuda classes are distinguished by different connectivities with HC for different pairs of SA, DMN or subcortical hubs.

During resting state fMRI only two connections differed from HC, both for Fukuda ME/CFS and both with an SA hub. During task fMRI 10 ME/CFS connections differed from HC, 5 for ICC and 5 for Fukuda. None were common to both classes.

Eight of the 10 different connections involved an SA hub, six of 10 were weaker in ME/CFS, 4 stronger. SA connections to the hippocampus and brainstem reticular activation system (RAS) differed from and were stronger than HC. The SA mediates the relative activity of the DMN and executive networks and imbalance will have functional consequences. The RAS and hippocampus modulate cortical activation.

Different regulatory connections are consistent with the impaired cognitive performance and sleep-wake cycle of ME/CFS. Different neuropathology is involved in ICC and Fukuda classes.

Full article behind a paywall.

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Research review: Mindfulness meditation interventions for long COVID & ME/CFS

Posted on 11/09/2022 by wames

Mindfulness meditation – a useful intervention for long COVID & ME/CFS

 

Prof Leonard Jason and Dr Nicole Porter have explored the research into mindfulness meditation to find out if it can help people with post viral conditions like long COVID and ME/CFS.

Mindfulness meditation involves sitting still and focusing exclusively on one’s breath, to hone one’s attention and maximize unmediated direct experience.

According to Kabat-Zinn, “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgementally”.

They found that “studies of meditation suggest that effective and sustainable outcomes may be achieved for symptomatology and underlying pathology of post-viral fatigue (PASC and ME/CFS).” Much of the research has been done on people with similar dysfunction:

  • immune function and anti-inflammatory effects in cancer, AIDS etc
  • epigenetics and DNA methylation in autoimmune disorders, sepsis etc.
  • neurological and CNS, creating structural and functional changes in the brains of people with sleep dysfunction, depression, anxiety etc.
  • mental health improvements in a wide range of conditions

The researchers found that to be most effective it is necessary to carry out a mindfulness intervention for a minimum of 8-10 weeks or undertake a shorter intense program. It is unclear how effective the use of mobile apps are, though they can promote feelings of well-being and social connectedness.

While there are several limitations to the conclusions of mindfulness and meditation studies involving patients with post viral illnesses there are signs it is worthwhile conducting further research.

 

Mindfulness Meditation Interventions for Long COVID: biobehavioral gene expression and neuroimmune functioning, by Nicole Porter, Leonard A Jason in Neuropsychiatric Disease and Treatment, Vol 18, 8 November 2022, pp 2599—2626 [doi.org/10.2147/NDT.S379653]

Research abstract: 

Some individuals infected with SARS CoV-2 have developed Post-Acute Sequelae of SARS CoV-2 infection (PASC) or what has been referred to as Long COVID. Efforts are underway to find effective treatment strategies for those with Long COVID. One possible approach involves alternative medical interventions, which have been widely used to treat and manage symptoms of a variety of medical problems including post-viral infections.

Meditation has been found to reduce fatigue and unrefreshing sleep, and for those with post-viral infections, it has enhanced immunity, and reduced inflammatory-driven pathogenesis.

Our article summarizes the literature on what is known about mindfulness meditation interventions, and reviews evidence on how it may apply to those with Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).

Evidence is reviewed suggesting effective and sustainable outcomes may be achieved for symptomatology and underlying pathology of post-viral fatigue (PASC and ME/CFS).

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Research: Factors influencing the prognosis of patients with ME/CFS

Posted on 11/03/2022 by wames

Factors influencing the prognosis of patients with ME/CFS

 

French researchers have confirmed the results of previous studies that found poor rates of recovery in ME/CFS. Only 8.3% of 168 patients recovered and 4.8% significantly improved. Delay in diagnosis reduced the chance of recovery but being older at the start of the illness led to better outcomes. They speculated that middle aged people might have found it easier to apply pacing strategies and adjust activities according to their energy envelope, maybe even taking early retirement to do so.

“It therefore seems necessary to diagnose and manage people with ME/CFS as early as possible to prevent worsening of symptoms and improve prognosis. To achieve this, it is important to raise awareness among health professionals, especially primary care physicians about ME/CFS and PEM.”

Patients were considered recovered if:

they were no longer experiencing PEM for at least 6 months, reported complete remission of their baseline symptoms, and were able to perform their premorbid levels of physical, cognitive, social, and occupational functioning without pacing strategies or taking medications.

Patients were considered significantly improved if:

they were no longer experiencing PEM for at least 6 months, reported a substantial reduction in the number, frequency, or severity of their baseline symptoms, and were restoring certain levels of functioning in everyday activities, with a possible adherence to pacing strategies and/or medications.

 

Research abstract:

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating multisystem condition with poor prognosis. Studies that examined predictors of ME/CFS outcomes yielded contradictory results.

Methods:

We aimed to explore epidemiological and clinical prognostic factors of ME/CFS using operationalized criteria for recovery/improvement. Adult ME/CFS patients who attended the Internal Medicine Department of Angers University Hospital, Angers, France between October 2011 and December 2019, and were followed up until December 2020, were included retrospectively. Their medical records were reviewed for data collection.

Patients were classified into two groups according to the presence or absence of recovery/improvement (R/I) and compared for epidemiological characteristics, fatigue features, post-exertional malaise severity, clinical manifestations, and comorbidities. The subgroups of recovered and significantly improved patients were then compared. 168 patients were included.

Results:

Recovery and improvement rates were 8.3% and 4.8%, respectively. Older age at disease onset was associated with R/I (OR 1.06 [95% CI 1.007–1.110] (p = 0.028)), while diagnostic delay was inversely associated with R/I (OR 0.98 [95% CI 0.964–0.996] (p = 0.036)).

Conclusion

The study findings confirmed the poor prognosis of ME/CFS and the deleterious effect of diagnostic delay on disease progression. Interestingly, being older at disease onset was associated with better outcomes, which offers hope to patients for recovery/improvement even at an advanced age.

Discussion:

… Unfortunately, almost all ME/CFS patients are un- or misdiagnosed for long periods, resulting in a long delay in time to diagnosis. This can be due to the heterogeneous non-specific ME/CFS symptoms and the lack of knowledge about ME/CFS among primary care physicians. Patients may consult many different specialists and undergo multiple explorations before ME/CFS diagnosis is made. In addition to the fact that waiting for diagnosis is always a worrying time for patients, diagnostic delay exacerbates, in most cases, the PEM as well as the baseline symptoms and negatively impacts the physical and mental state of patients.

It therefore seems necessary to diagnose and manage people with ME/CFS as early as possible to prevent worsening of symptoms and improve prognosis. To achieve this, it is important to raise awareness among health professionals, especially primary care physicians about ME/CFS and PEM.

Factors influencing the prognosis of patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Alaa Ghali, Carole Lacout, Jacques-Olivier Fortrat, Karine Depres, Maria Ghali and Christian Lavigne in Diagnostics 2022, 12(10), 2540; [doi.org/10.3390/diagnostics12102540] 19 October 2022
(This article belongs to the Special Issue Chronic Fatigue-Spectrum Disorders in the Era of COVID-19)

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Research: COVID infection reactivates viruses more strongly in people with ME/CFS

Posted on 11/02/2022 by wames

COVID reactivates viruses in ME/CFS

 

Swedish researchers searched for viruses in the blood and saliva of 95 non-vaccinated ME/CFS patients and 110 healthy people following a Covid-19 infection. Dormant viruses in both groups were reactivated, but more strongly in the saliva of ME/CFS patients i.e. herpesviruses (EBV, HHV6) and endogenous retrovirus (HERV-K). ME/CFS patients are more susceptible and have stronger reactions to a Covid-19 infection. This provides further evidence for altered immune responses in ME/CFS.

Saliva antibody-fingerprint of reactivated latent viruses after mild/ asymptomatic COVID-19 is unique in patients with myalgic-encephalomyelitis/ chronic fatigue syndrome, by Eirini Apostolou, Muhammad Rizwan, Petros Moustardas, Per Sjögren, Bo Christer Bertilson, Björn Bragée, Olli Polo and Anders Rosén in Front. Immunol., 20 October 2022 [doi.org/10.3389/fimmu.2022.949787]

Research abstract:

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease considered to be triggered by viral infections in a majority of cases. Symptoms overlap largely with those of post-acute sequelae of COVID-19/long-COVID implying common pathogenetic mechanisms. SARS-CoV-2 infection is risk factor for sustained latent virus reactivation that may account for the symptoms of post-viral fatigue syndromes.

The aim of this study was first to investigate whether patients with ME/CFS and healthy donors (HDs) differed in their antibody response to mild/asymptomatic SARS-CoV-2 infection. Secondly, to analyze whether COVID-19 imposes latent virus reactivation in the cohorts.

Methods: 

Anti-SARS-CoV-2 antibodies were analyzed in plasma and saliva from non-vaccinated ME/CFS (n=95) and HDs (n=110) using soluble multiplex immunoassay. Reactivation of human herpesviruses 1-6 (HSV1, HSV2, VZV, EBV, CMV, HHV6), and human endogenous retrovirus K (HERV-K) was detected by anti-viral antibody fingerprints in saliva.

Results:

At 3-6 months after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) in both cohorts. In patients with ME/CFS, antibody responses were significantly stronger, in particular EBV-encoded nuclear antigen-1 (EBNA1) IgG were elevated in patients with ME/CFS, but not in HDs. EBV-VCA IgG was also elevated at baseline prior to SARS-infection in patients compared to HDs.

Conclusion: 

Our results denote an altered and chronically aroused anti-viral profile against latent viruses in ME/CFS. SARS-CoV-2 infection even in its mild/asymptomatic form is a potent trigger for reactivation of latent herpesviruses (EBV, HHV6) and endogenous retroviruses (HERV-K), as detected by antibody fingerprints locally in the oral mucosa (saliva samples). This has not been shown before because the antibody elevation is not detected systemically in the circulation/plasma.

Comments:

Believed and safe: A new discovery about enigmatic fatigue

“The bottom line then is that patients with ME/CFS are more sensitive and have much stronger reactions to a mild COVID-19 infection. Their dormant virus is awakened and chews up the energy and the result is more fatigue, more exhaustion and feverishness, rather than typical flu symptoms… Time and again, the power plants are shut down. And you get worse general condition and poorer immune system. Not only has it been infected by a new virus, it has also awakened an army of sleeping past sinners who are being reactivated.”

MEA: Comment

“I do hope these results are followed up, as these findings have the potential for the development of new treatments looking at boosting the antiviral immune response as well as a role in immunological tests for diagnosis.”

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Doctors use more negative language about ME/CFS online than other illnesses

Posted on 10/31/2022 by wames

Doctors’ attitudes to medical conditions

 

On an online medical forum physicians were found to discuss ME/CFS, depression and Lyme disease with more negative language than 21 other diseases. The results for ME/CFS included over 4 times more negative words than the results for depression.

 

Doctors’ attitudes toward specific medical conditions, by Brooke Scoles, Catia Nicodemo in Journal of Economic Behavior & Organization Vol 204, Dec 2022, pp 182-199 [doi.org/10.1016/j.jebo.2022.09.023]

Research abstract:

This study uses machine learning and natural language processing tools to examine the language used by healthcare professionals on a global online forum. It contributes to an underdeveloped area of knowledge, that of physician attitudes toward their patients.

Using comments left by physicians on Reddit’s “Medicine” subreddit (r/medicine), we test if the language from online discussions can reveal doctors’ attitudes toward specific medical conditions. We focus on a set of chronic conditions that usually are more stigmatized and compare them to ones well accepted by the medical community.

We discovered that when comparing diseases with similar traits, doctors discussed some conditions with more negative attitudes. These results show bias does not occur only along the dimensions traditionally analyzed in the economics literature of gender and race, but also along the dimension of disease type.

This is meaningful because the emotions associated with beliefs impact physicians’ decision making, prescribing behavior, and quality of care.

First, we run a binomial LASSO-logistic regression to compare a range of 21 diseases against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), depression, and the autoimmune diseases multiple sclerosis and rheumatoid arthritis. Next, we use dictionary methods to compare five more chronic diseases: Lyme disease, Ehlers-Danlos syndrome (EDS), Alzheimer’s disease, osteoporosis, and lupus.

The results show physicians discuss ME/CFS, depression, and Lyme disease with more negative language than the other diseases in the set. The results for ME/CFS included over four times more negative words than the results for depression

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The role of mental health practitioners for Long COVID & ME/CFS

Posted on 10/24/2022 by wames

A new challenge: mental health practitioners can learn from ME/CFS when supporting the long-term effects of COVID-19

 

A research paper from a team of researchers including Prof Leonard Jason and Dr Nina Muirhead believes that:

Mental Health Practitioners (MHPs) have a unique opportunity to provide resources and support to those suffering from Long COVID (LC), the post infectious illness that often follows an acute SARS-CoV-2 infection.

In working with these individuals, MHPs can learn from the experiences of patients with another post-infectious disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS was once thought to be a psychologically mediated disorder caused by deconditioning and the fear of exertion following a precipitating event such as a viral infection.

Research now shows that LC and ME/CFS are biomedical, multisystem, complex physiologic diseases. This article provides a framework to MHPs for the treatment of LC patients using knowledge derived from three decades of research on ME/CFS.

The paper includes information on the role of mental health therapists:

  • Understanding the illness.
  • Proper interviewing when considering biomedical and/or psychological diagnosis.
  • Proper interviewing when considering biomedical and/or psychological diagnosis.
  • Proper interviewing when considering biomedical and/or psychological diagnosis.
  • Proper interviewing when considering biomedical and/or psychological diagnosis.
  • When to refer to psychopharmacology.

Mental Health Practitioners can offer support with:

  • Coping
  • Post-exertional malaise (PEM) and pacing
  • Sleep disturbances
  • Dealing with individuals unfamiliar with LC or ME/CFS
  • Role of social media and support

Read the full paper:

A new clinical challenge: Supporting patients coping with the long-term effects of COVID-19, by Neal C Goldberg, Sabrina Poirier, Allison Kanas, Lisa McCorkell, Carrie Anna McGinn, Yochai Re’em, Kathi Kuehnel, Nina Muirhead, Tahlia Ruschioni, Susan Taylor-Brown, Leonard A Jason in Fatigue: Biomedicine, Health & Behavior, 10 Oct 2022 [doi.org/10.1080/21641846.2022.2128576]

 

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#WAMES_800 – Donations ‘In lieu of gifts’

Posted on 10/21/2022 by wames

Give donations ‘In lieu of gifts’ – to aid our #WAMES_8oo Fundraising Journey

 

Why not celebrate your next special occasion by asking your friends and family to lend support to people with ME/CFS?

By asking your friends and family to donate to us instead of giving gifts at a birthday, Christmas, anniversary or wedding, you can enjoy your special day knowing you are making a real difference to the lives of people with ME/CFS.

When adding the suggestion to your gift ‘wish list’ remind the donor to tell the treasurer which occasion they wish to celebrate when they send cheques or transfer money.

Account name:    Welsh Association of ME & CFS
Account Number:  76392081
Sort Code:       09-01-55

Treasurer: Cornerstones, Clinton Road Lane, Penarth, Vale of Glamorgan CF64 3JD

OR set up a fundraising page on a fundraising platform to allow people to donate by debit or credit card.

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us!

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 Fundraising Journey – 2nd £100 target reached! | WAMES (Working for ME in Wales)

#WAMES_800 – How can I donate? | WAMES (Working for ME in Wales)

 

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