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 inFatigue: Biomedicine, Health & Behavior, 10 Oct 2022 [doi.org/10.1080/21641846.2022.2128576]
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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.”
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.
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.
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.
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
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.
Genetics of COVID-19 and ME/CFS: a systematic review
Greek researchers found 71 studies for COVID-19 and 26 studies for ME/CFS that looked at genes. They concluded:
Venn diagram regarding the significant genes of COVID-19 and ME/CFS.
“In spite of the fact that COVID-19 and ME/CFS present with some similar symptoms, especially physical and mental fatigue, genetic association, and cohort studies indicate that these two complex diseases share only a few common genes. These… appear to be involved in the regulation of immune processes.
This finding supports the notion that the pathogenesis of both syndromes may derive from some aberrant and lasting immune response, possibly involving mast cells and microglia, which have been recently implicated in both diseases.
Understanding the basis of this immune dysfunction could help with the diagnosis, prognosis, and treatment of these debilitating conditions.
COVID-19 and ME/CFS present with some similar symptoms, especially physical and mental fatigue. In order to understand the basis of these similarities and the possibility of underlying common genetic components, we performed a systematic review of all published genetic association and cohort studies regarding COVID-19 and ME/CFS and extracted the genes along with the genetic variants investigated.
We then performed gene ontology and pathway analysis of those genes that gave significant results in the individual studies to yield functional annotations of the studied genes using protein analysis through evolutionary relationships (PANTHER) VERSION 17.0 software. Finally, we identified the common genetic components of these two conditions.
Seventy-one studies for COVID-19 and 26 studies for ME/CFS were included in the systematic review in which the expression of 97 genes for COVID-19 and 429 genes for ME/CFS were significantly affected. We found that ACE, HLA-A, HLA-C, HLA-DQA1, HLA-DRB1, and TYK2 are the common genes that gave significant results.
The findings of the pathway analysis highlight the contribution of inflammation mediated by chemokine and cytokine signaling pathways, and the T cell activation and Toll receptor signaling pathways. Protein class analysis revealed the contribution of defense/immunity proteins, as well as protein-modifying enzymes. Our results suggest that the pathogenesis of both syndromes could involve some immune dysfunction.
Activity monitoring and patient-reported outcome measures in ME/CFS patients
A small Norwegian study from the team led by Prof Olav Mella and Dr Oystein Fluge trialled wearable activity trackers and questionnaires to monitor heart rate and activity to aid pacing for people with ME/CFS:
In this study we have observed the course of 27 ME/CFS patients during 6 months’ follow-up without any intervention. It is feasible to use activity trackers for the continuous registration of steps and resting heart rate in a study with ME/CFS patients.
According to feedback from patients, the Fitbit trackers were easy to use, and gave a fair reflection of their physical activity levels…
PROMs – self-report questionnaires which measure the severity or impact of symptoms [MEpedia]
After exploring different combinations of PROMs, activity measures and clinical assessment, we found that the combination of lower SF36-PF and higher DSQ-SF defined patients with more stable symptoms during follow-up in this study with no intervention.
The knowledge from this study could be useful for the design of study protocols and assessments of outcome measures in future interventional studies. We propose including a run-in period with activity tracking and PROMs pre-intervention to evaluate normal fluctuations of the disease in individual patients.
Due to the complexity of symptoms, it is necessary to combine the activity measures with patient-reported outcome measures to assess different aspects of disease.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease with no validated specific and sensitive biomarker, and no standard approved treatment. In this observational study with no intervention, participants used a Fitbit activity tracker. The aims were to explore natural symptom variation, feasibility of continuous activity monitoring, and to compare activity data with patient reported outcome measures (PROMs).
Materials and methods
In this pilot study, 27 patients with mild to severe ME/CFS, of mean age 42.3 years, used the Fitbit Charge 3 continuously for six months.
The mean number of steps per day decreased with increasing ME/CFS severity; mild 5566, moderate 4991 and severe 1998. The day-by-day variation was mean 47% (range 25%-79%). Mean steps per day increased from the first to the second three-month period, 4341 vs 4781 steps, p=0.022.
The maximum differences in outcome measures between 4-week periods (highest vs lowest), were more evident in a group of eight patients with milder disease (baseline SF-36 PF>50 or DSQ-SF<55) as compared to 19 patients with higher symptom burden (SF-36 PF<50 and DSQ-SF>55), for SF-36 PF raw scores: 16.9 vs 3.4 points, and for steps per day: 958 versus 479 steps.
The correlations between steps per day and self-reported SF-36 Physical function, SF-36 Social function, and DSQ-SF were significant. Fitbit recorded significantly higher number of steps than SenseWear. Resting heart rates were stable during six months.
Conclusion
Continuous activity registration with Fitbit Charge 3 trackers is feasible and useful in studies with ME/CFS patients to monitor steps and resting heart rate, in addition to self-reported outcome measures.
Do you have a diagnosis of ME or CFS from the NHS?
For decades many people with suspected ME have not been able to find an NHS professional to confirm their diagnosis. As the NHS has had nothing to offer, people have been forced to seek support and treatments wherever they can.
The launch of the recent Decode ME DNA study into ME has caused some to question if it is time to make another attempt at getting a diagnosis. The researchers are looking for 20,000 people living in the UK with an ME or CFS diagnosisfrom a health professional, and 5,000 who developed ME following a COVID infection. Participants may be asked if they agree to provide access to their NHS file for further research.
Health Boards in Wales tell us they have adopted the 2021 NICE ME/CFS guideline so if you have been unable to get a diagnosis in the past, theoretically you should be able to get one now. If you decide to ask your GP to confirm you have ME and they do confirm it, the benefits could include:
enables you to take part in research.
you are counted by NHS Wales. (NHS Wales records ME using the SNOMED classifiation system which has a category for ME: SCTID: 52702003). New services can be commissioned or extended when statistics show there is a demand.
opens up easier access to support services and benefits.
Make sure you are prepared before approaching your GP. Check out the NICE guideline
If you meet resistance from doctors to using the revised NICE guideline, or are refused a diagnosis without cause, please tell us and this information will help WAMES challenge the Health Boards to #ImplementNICEmecfs.
If you have received a diagnosis in the past from a professional outside the NHS or a non-medical NHS professional, such as a therapist, nurse or pharmacist, you might wish to check with your GP whether that has been accepted and included in your medical notes.
The NHS is under great pressure and is struggling to catch up with a backlog, with a reduced quota of staff, so you may feel that getting a diagnosis is not a necessary use of their time. It is worth considering the time that could be saved in the future by having an accurate record of your health status in your records. When you need to consult a new GP, they won’t have to ask the same questions, do the same tests, and should be able to direct you to the most appropriate services straight away.
Understanding Myalgic Encephalomyelitis – Myalgic Encephalomyelitis and Long COVID have overlapping presentation
Dr Sonya Marshall-Gradisnik and Dr Natalie Eaton-Fitch from Griffith University, on the Gold Coast in Australia, say there is a significant overlap in symptoms and possibly the underlying processes in ME and LC. Lessons should be learned from understanding ME:
An important research challenge is the lack of a validated biomarker, laboratory-based test, and animal model, likely attributed to inconsistency in protocols, such as cell isolation, sample type, and technique. These challenges provide important lessons for research of Long Covid.
By developing interdisciplinary and consistent research protocols, the pathomechanism of ME/CFS and Long Covid can be elucidated. The recent interest in the overlap that exists between ME/CFS and Long Covid poses several questions, such as whether Long Covid predisposes a person to ME/CFS, and whether an individual has Long Covid or ME/CFS.
Pathomechanism – the process by which a disease or illness occurs. [Wiki]
Research into the etiology of ME/CFS and Long Covid should simultaneously identify the mechanism and diagnostic approach to both. ME/CFS poses a substantial health concern and has recently been taken more seriously since the emergence of Long Covid, and renewed focus on diagnostic, research, and treatment practices is needed.
Proposed mechanisms underlying ME/CFS
Proposed mechanisms underlying ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presents as a range of symptoms that affect multiple organ systems. Enteric dysbiosis, neurological and immune dysfunction, as well as impaired mitochondrial function are implicated in the pathomechanism of ME/CFS. These symptoms also occur in Long Covid, although with differing prevalence.
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.
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.
Find out more about our Fundraising Journey:
On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the 
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.
The launch of the recent 
enables you to take part in research.
