it can be cheaper – a 2nd class stamp is how much? 68p!
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WAMES is now on the #DontSendMeACard platform, and we invite you to send as many e-cards as you want via email or WhatsApp for a donation that you can afford. We have a growing selection of images (some animated) for you to choose from. How it works
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There’s still a place…
Of course, not everybody can be online, and paper cards are the right choice for some situations. A number of people with ME make beautifully crafted cards, often as a fundraising tool, so it is worth hunting them out and being prepared for anything! Let us know what you find…
#WAMES_800 Fundraising Journey climbs another step towards our goal
We have climbed another step towards reaching our target of £800 to fund next year’s WAMES activities.
The £300 milestone has been reached, but still £500 to go. We need to pick up the pace!
Every little helps
The third milestone has been reached by the sale of hand-made cards and donations from online shopping. Each shop might raise anything from 25p for a weekly supermarket shop to £5+ a time on a big purchase, but it all adds up. Many thanks to all who have joined us on our fundraising journey. Why not invite others to join us!
A Physiological Society virtual meeting in February 2022 brought clinicians and researchers together to discuss the current understanding of long COVID mechanisms, risk factors and recovery. An international group of researchers have published a review of the themes arising from that meeting.
“It considers the nature of long COVID, exploring its links with other post-viral illnesses such as myalgic encephalomyelitis/ chronic fatigue syndrome, and highlights how long COVID research can help us better support those suffering from all post-viral syndromes.”
Extract: Links with ME/CFS
The increased incidence of symptoms after COVID-19 compared to influenza suggests some specificity for the type of infection. However, there are also some similarities between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Like long COVID, this is associated with prior viral infection and often occurs in previously healthy and active people (predominantly females) (Poenaru et al., 2021).
The chronic presentation of both conditions is similar, with fatigue, brain fog and post-exertional malaise (PEM) (Singh et al., 2022), impacting on activities of daily living.
One study demonstrated that in those symptomatic with long COVID at 2 months, 85% still reported symptoms after 1 year (Tran et al., 2022). Long COVID can have a significant impact on patients’ lives after 6 months, which may, in some cases, represent evolution to an ME/CFS-like condition.
Symptoms of Long COVID (Tacquet)
Life-altering fatigue is very common in both populations and also in patients with chronic autoimmune (Davies et al., 2021) or neurological (Kluger et al., 2013) diseases. In some, this fatigue becomes severely disabling (van Ruitenbeek et al., 2019).
Patients with ME/CFS need daily management of activity levels in order to prevent PEM, which when severe, can lead individuals to become bed-bound, with symptoms such as severe postural orthostatic intolerance (POTS), sleep dysfunction, myalgia, cognitive dysfunction, dysautonomia, neuro-immuno-endocrine dysfunction, hyperacusis and photophobia (Carruthers et al., 2011; Stussman et al., 2020).
Similar to long COVID, the lack of a diagnostic test is a significant hurdle, with many patients diagnosed by excluding other conditions, or given a diagnosis of ME/CFS after a prolonged period of time (>10 years). Between 80% and 90% of patients never get a clear diagnosis (Komaroff et al., 1996).
Current ME/CFS management options are limited, with graded exercise therapy removed in 2021 from NICE guidance as a result of 50% of patients experiencing a deterioration of their conditions (Kujawski et al., 2020, 2021; NICE Guideline [NG206], 2021). Treatments for depression or other psychiatric illness have limited benefit.
Once ME/CFS is established, many patients never fully recover and are ‘forgotten’ by society. However, the burden on families is enormous, with many families taking on a life-long commitment as carers. A better understanding of long COVID, a prolonged condition with many of the same symptoms observed in ME/CFS, therefore presents an opportunity that may also help in understanding and managing patients with ME/CFS, with options for the development of therapeutic interventions in a potentially more homogeneous condition.
ME/CFS research can also help with understanding of underlying pathophysiological mechanisms, such as:
dysregulated energy metabolism (Missailidis et al., 2020; Sweetman et al., 2020; Tomas et al., 2017, 2020),
exercise-induced plasma metabolome alterations (Germain et al., 2022),
dysbiotic gut (Morten et al., 2018; Xiong et al., 2021) and immune cell dysfunction (Milivojevic et al., 2020).
Evidence of metabolic dysregulation and prolonged immune dysregulation has also been found in long COVID patients (Phetsouphanh et al., 2022). This could potentially be due to viral persistence of SARS-CoV-2 or other viruses, though this has not been demonstrated in ME/CFS patients (Chang et al., 2021). SARS-CoV-2 persistence of 3–5 months has been reported in immunocompromised patients, but with no co-existing symptoms (Gaspar-Rodríguez et al., 2021), and this is an area of further study (Brodin et al., 2022).
lessons must be learnt from the poor management of ME/CFS patients
To progress, lessons must be learnt from the poor management of ME/CFS patients and long-term research programmes established to fully understand the biology behind long COVID and ME/CFS.
Certain insights may arise sooner in populations that have undergone particularly high levels of scrutiny of the disease course, progression and effects of interventions. These include individuals in elite athletics or the military, where physical fitness is key to success and resource-intensive monitoring of performance is routine.
From:
Long COVID: mechanisms, risk factors and recovery, by Ronan Astin, Amitava Banerjee, Mark R. Baker, Melanie Dani, Elizabeth Ford, James H Hull, Phang Boon Lim, Melitta McNarry, Karl Morten, Oliver O’Sullivan, Etheresia Pretorius, Betty Raman, Demetris S Soteropoulos, Maxime Taquet, Catherine N Hall in Experimental Physiology, Nov 2022 [https://doi.org/10.1113/EP090802]
Review abstract
Long COVID, the prolonged illness and fatigue suffered by a small proportion of those infected with SARS-CoV-2, is placing an increasing burden on individuals and society. A Physiological Society virtual meeting in February 2022 brought clinicians and researchers together to discuss the current understanding of long COVID mechanisms, risk factors and recovery.
This review highlights the themes arising from that meeting. It considers the nature of long COVID, exploring its links with other post-viral illnesses such as myalgic encephalomyelitis/ chronic fatigue syndrome, and highlights how long COVID research can help us better support those suffering from all post-viral syndromes.
Long COVID research started particularly swiftly in populations routinely monitoring their physical performance – namely the military and elite athletes. The review highlights how the high degree of diagnosis, intervention and monitoring of success in these active populations can suggest management strategies for the wider population.
We then consider how a key component of performance monitoring in active populations, cardiopulmonary exercise training, has revealed long COVID-related changes in physiology – including alterations in peripheral muscle function, ventilatory inefficiency and autonomic dysfunction.
The nature and impact of dysautonomia are further discussed in relation to postural orthostatic tachycardia syndrome, fatigue and treatment strategies that aim to combat sympathetic overactivation by stimulating the vagus nerve.
We then interrogate the mechanisms that underlie long COVID symptoms, with a focus on impaired oxygen delivery due to micro-clotting and disruption of cellular energy metabolism, before considering treatment strategies that indirectly or directly tackle these mechanisms. These include remote inspiratory muscle training and integrated care pathways that combine rehabilitation and drug interventions with research into long COVID healthcare access across different populations.
Overall, this review showcases how physiological research reveals the changes that occur in long COVID and how different therapeutic strategies are being developed and tested to combat this condition.
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.
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.
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.”
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.
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.
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).
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.
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.
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.
“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.”
“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.”
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.
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
WAMES is now on the #DontSendMeACard platform, and we invite you to send as many e-cards as you want via email or WhatsApp for a donation that you can afford. We have a growing selection of images (some animated) for you to choose from. How it works
Have you designed a card of your own?
Every little helps
They used 
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:
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.
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 (
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.
