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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World ME Alliance asks WHO to recognise ME

Posted on 10/19/2022 by wames

World ME Alliance calls on WHO Director General to recognise ME alongside Long Covid

 

On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long Covid is causing around the world and sets out five key elements of a plan to drive change.

It is vital that the impact of Long Covid is recognised at the highest levels, and the World ME Alliance congratulates Dr Ghebreyesus on this stance.

[Image by Emerge Australia]

However, as more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.

The World ME Alliance has written to Dr Ghebreyesus calling on him to meet with representatives.

Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME and ensure that progress for people with Long Covid doesn’t leave the millions already suffering with ME behind.

Read the full letter from the World ME Alliance and its 19 members, which includes WAMES, representing Wales.

 

Dear Dr Ghebreyesus,

Our World ME Alliance read your recent Guardian article “The data is clear: long Covid is devastating people’s lives and livelihoods” with great interest.

We would like to congratulate you and the World Health Organization for taking this issue so seriously. In particular, we appreciate your acknowledgement of the devastation Long Covid is causing, the need to listen to patient groups, and the need for sustained investment to expand our scientific understanding so better treatments and clinical management can be developed.

While we congratulate the efforts to innovate around Long Covid, we also see that people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), many of whom have already suffered decades of the same devastation you have described, face a lack of recognition and global response.

The most prevalent Long Covid symptoms — crippling fatigue, post-exertional malaise, widespread inflammation, and cognitive dysfunction — mirror those of ME/CFS. As more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME/CFS diagnosis, also known to be a viral-associated disease.

Additionally, many studies1, 2, 3, 4, 5 are making key scientific connections between ME/CFS and Long Covid.

This is not new. Outbreaks of viruses such as swine flu (H1N1) and Ebola, as well as common viruses including Epstein-Barr Virus (EBV), demonstrate that chronic illness triggered by viral infections, including ME/CFS, are a recurrent phenomenon.

We would welcome a meeting with you to follow up on past commitments to establish contact with ME/CFS experts and patient organisations. We believe this could fast track support for people with ME/CFS and also those with Long Covid, ensuring learnings from ME/CFS are taken advantage of, and that progress for people with Long Covid doesn’t leave those with ME/CFS behind.

Yours sincerely,
Sonya Chowdury, Co-Chair of the World ME Alliance, CEO of Action for M.E.

Oved Amitay, Co-Chair of the World ME Alliance, President and CEO of Solve M.E.

Sian Leary, Head of Advocacy and Communications, World ME Alliance

  • #MEAction
  • 12ME
  • ACAF – Associació Catalana d’Afectades i Afectats de Fibromiàlgia i d’altres Síndromes
    de Sensibilització Central
  • Action for M.E.
  • AMMES – The American ME and CFS Society
  • ANZMES – The Associated New Zealand Myalgic Encephalomyelitis Society
  • AQEM
  • CFS/ME Associazione Italiana
  • European ME Coalition
  • Forward M.E.
  • Hope 4 ME & Fibro Northern Ireland
  • ME Support IOM
  • ME/CVS Stichting Nederland
  • Millions Missing Canada
  • Millions Missing Belgique
  • Plataforma Familiars FM-SFC-SQM Síndromes de Sensibilització Central
  • Solve M.E.
  • The ME CFS Foundation South Africa
  • WAMES – Welsh Association of ME & CFS Support

Endnotes

1. Davis, Hannah E., Gina S. Assaf, Lisa McCorkell, Hannah Wei, Ryan J. Low, Yochai Re’em, Signe Redfield, Jared P. Austin, and Athena Akrami. “Characterizing long COVID in an international cohort: 7 months of symptoms and their impact.” EClinicalMedicine 38 (2021): 101019. https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext

“Found the most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile.”

2. Mancini, Donna M., Danielle L. Brunjes, Anuradha Lala, Maria Giovanna Trivieri, Johanna P. Contreras, and Benjamin H. Natelson. “Use of cardiopulmonary stress testing for patients with unexplained dyspnea post–coronavirus disease.” Heart Failure 9, no. 12 (2021): 927-937. https://pubmed.ncbi.nlm.nih.gov/34857177/

“This is the first report to indicate a high rate of patients with PASC meeting criteria for ME/CFS (46%), which is consistent with what was found after the SARS COVID-1 outbreak.”


3. Wong, Timothy L., and Danielle J. Weitzer. “Long COVID and myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) —a systemic review and comparison of clinical presentation and symptomatology.” Medicina 57, no. 5 (2021): 418. https://www.mdpi.com/1648-9144/57/5/418/htm

“All three major criteria symptoms as specified by most ME/CFS case definitions… were reported by multiple selected long COVID studies, with fatigue being the most reported symptom…. All sub-categories within the minor criteria of ME/CFS… were matched with long-COVID studies.”

4. Paul, Bindu D., Marian D. Lemle, Anthony L. Komaroff, and Solomon H. Snyder. “Redox imbalance links COVID-19 and myalgic encephalomyelitis/ chronic fatigue syndrome.” Proceedings of the National Academy of Sciences 118, no. 34 (2021): e2024358118. https://www.pnas.org/doi/10.1073/pnas.2024358118

“People with acute COVID-19 and people with ME/CFS share redox imbalance, systemic inflammation and neuroinflammation, impaired production of ATP and other abnormalities in common, abnormalities that have bidirectional connections.”

5. Klein, Jon, Jamie Wood, Jillian Jaycox, Peiwen Lu, Rahul M. Dhodapkar, Jeffrey R. Gehlhausen, Alexandra Tabachnikova et al. “Distinguishing features of Long COVID identified through immune profiling.” medRxiv (2022).
https://www.medrxiv.org/content/10.1101/2022.08.09.22278592v1

“Analysis of circulating immune mediators and various hormones also revealed pronounced differences, with levels of cortisol being uniformly lower among participants with Long COVID relative to matched control groups. Integration of immune phenotyping data into unbiased machine learning models identified significant distinguishing features critical in accurate classification of Long COVID, with decreased levels of cortisol being the most significant individual predictor.”

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Research: DNA changes during a relapse and recovery cycle in ME/CFS

Posted on 10/17/2022 by wames

Dynamic epigenetic changes during a relapse and recovery cycle in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

 

Epigenetics is the study of how your behaviors and environment can cause changes that affect the way your genes work. Unlike genetic changes, epigenetic changes are reversible and do not change your DNA sequence, but they can change how your body reads a DNA sequence. (CDC)

A New Zealand research team led by Prof Warren Tate explored changes in the genes of 2 patients with ME/CFS during a relapse which resulted in “functionally important changes in their DNA methylomes that, while differing between the two patients, led to very similar compromised physiology.

 

Conclusions
This study shows the benefits of precision medicine for individual patients with a disease as physiologically complex as ME/CFS.

Precision medicine – an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. (NLH)

Currently, ME/CFS patients can respond quite differently to specific medications, for example supplements like vitamin B12, and to anti-inflammatory drugs like naltrexone, and to physiological states like pregnancy, with some showing marked improvement, some marked deterioration, and some seemingly no change in their condition.

By considering individual patients over the course of their ME/CFS disease we can better understand not only the similarities within the overall patient group, but also develop an in depth understanding of the fluctuations for each patient that relates to their specific pathophysiology.

Variable methylation of regulatory regions associated with the relapse condition has in this study identified a number of genes with key functional roles in immune, inflammatory, metabolic and mitochondrial pathways.

For a disease that has proven challenging to diagnose and characterise, with the delay in diagnosis detrimental for the affected person, this kind of analysis provides not only further evidence of serious biological dysfunction, but importantly also ongoing systematic molecular changes that inform future targets for individual treatment or symptom management as we continue to unravel and understand the complex nature of ME/CFS.

Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Amber M Helliwell, Peter A Stockwell, Christina D Edgar, Aniruddha Chatterjee, Warren P Tate in Int J Mol Sci. 2022 Oct 6;23(19):11852 [doi: 10.3390/ijms231911852]

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease with variable severity. Patients experience frequent relapses where symptoms increase in severity, leaving them with a marked reduction in quality of life.

Previous work has investigated molecular differences between ME/CFS patients and healthy controls, but not the dynamic changes specific to each individual patient. We applied precision medicine here to map genomic changes in two selected ME/CFS patients through a period that contained a relapse recovery cycle.

Method

DNA was isolated from two patients and a healthy age/gender matched control at regular intervals and captured the patient relapse in each case. Reduced representation DNA methylation sequencing profiles were obtained spanning the relapse recovery cycle. Both patients showed a significantly larger methylome variability (10-20-fold) through the period of sampling compared with the control.

Results

During the relapse, changes in the methylome profiles of the two patients were detected in regulatory-active regions of the genome that were associated, respectively, with 157 and 127 downstream genes, indicating disturbed metabolic, immune and inflammatory functions.

Severe health relapses in the ME/CFS patients resulted in functionally important changes in their DNA methylomes that, while differing between the two patients, led to very similar compromised physiology.

DNA methylation as a signature of disease variability in ongoing ME/CFS may have practical applications for strategies to decrease relapse frequency.

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Volunteers invited to join WAMES communications team

Posted on 10/17/2022 by wames

Can you help WAMES keep the ME community informed?

 

Are you social media savvy & want pwme to receive the right info at the right time so it makes a real difference to people’s daily lives?

Can you help us research and create content that catches people’s attention, for use in our news blog and social media channels?

Can you make a point simply in an image, or video, for use on Instagram?

Can you help us increase our social media presence and campaigns?

Can you help us maintain our active social media accounts?

WAMES is looking for people to join the Communications team to help us identify, create and share information to the ME community in Wales via our communication platforms:

  • Web news blog
  • Facebook
  • Twitter
  • Instagram
  • E-news

 

Some skills and experience would be useful but a willingness to learn and work as part of a team is most important. There are options to volunteer 2-3 hours per week and also to work on tasks and projects without strict deadlines.

Join us a volunteer or a small steps supporter. Contact Sharon to discuss what is best for you. sharon@wames.org.uk

make a difference for ME in Wales

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Research: Orthostatic Intolerance & neurocognitive impairment overlap in ME/CFS

Posted on 10/13/2022 by wames

Orthostatic Intolerance & neurocognitive impairment overlap in ME/CFS

 

Prof Jason Leonard and US colleagues investigated the relationship between Orthostatic Intolerance and neurocognitive impairment in ME/CFS

Orthostatic intolerance (OI) is the development of symptoms when standing upright that are relieved when reclining (Wikipedia)

Conclusions

Neurocognitive symptoms and OI overlap in ME/CFS, and our results do not support the IOM’s inclusion of neurocognitive impairment and OI as interchangeable symptoms. Furthermore, our findings highlight the need for a uniform method of defining and measuring OI via self-report in order to accurately study OI as a symptom of ME/CFS.

Neurocognitive domains. The DSM-5 defines 6 key domains of cognitive function – Sachdev et al

 

Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), by Caroline L Gaglio, Mohammed F Islam, Joseph Cotler and Leonard A Jason in Epidemiologic Methods October 10, 2022 [doi.org/10.1515/em-2021-0033]

Research abstract

Objectives
The Institute of Medicine (IOM 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington: The National Academies Press) suggested new criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which requires an endorsement of either neurocognitive impairment or orthostatic intolerance (OI) in addition to other core symptoms.

While some research supports the inclusion of OI as a core symptom, others argue that overlap with neurocognitive impairment does not justify the either/or option. The current study assessed methods of operationalizing OI using items from the DePaul Symptom Questionnaire (DSQ-1 and -2) as a part of the IOM criteria. Evaluating the relationship between OI and neurocognitive symptoms may lead to a better understanding of diagnostic criteria for ME/CFS.

Methods
Two-hundred and forty-two participants completed the DSQ. We examined how many participants met the IOM criteria while endorsing different frequencies and severities of various OI symptoms.

Results
Neurocognitive impairment was reported by 93.4% of respondents. OI without concurrent neurocognitive symptoms only allowed for an additional 1.7–4.5% of participants to meet IOM criteria.

Conclusions
Neurocognitive symptoms and OI overlap in ME/CFS, and our results do not support the IOM’s inclusion of neurocognitive impairment and OI as interchangeable symptoms.

Furthermore, our findings highlight the need for a uniform method of defining and measuring OI via self-report in order to accurately study OI as a symptom of ME/CFS.

The full paper is behind a paywall

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