This role offers the opportunity to support the work of WAMES and make a difference for people with ME in Wales.
We provide support and information to people with ME, carers and families – approximately 13,000 families in Wales. We also campaign to change attitudes and misunderstandings about the condition and improve services. We expect the need for our support and information to increase as some people with long COVID can develop ME.
The role of the Virtual Office Manager would be to:
set up and manage a virtual online office for a small team of trustees and volunteers
You would be based at home, but working with, and responsible to the management Team.
Main activities:
The office manager is responsible for the following tasks but can enlist help to complete them.
advise management team on the best admin platform and software
set up the virtual office and help volunteers to make use of it
maintain a central diary and notify the volunteers of key dates & actions
keep documents up to date on a cloud storage platform, ensuring all relevant volunteers have access
enable communications between remote workers and with the ME community
Useful qualities and skills:
some office management and administration skills
some experience of business digital technology & willingness to learn
ability to work virtually with a team of volunteers with varying levels of experience and health
an eye for detail and methodical way of thinking
the role would be ideal for someone who has a long-term plan of returning to work and needs experience, or who wishes a career in the 3rd sector.
Chronic fatigue syndrome (CFS) is one of the most common chronic diseases in modern society and affects patients’ quality of life to a certain extent. To date, the etiology and pathogenesis of CFS are still not completely clear. Various therapies have been developed, but there is still a lack of specific drugs or treatments.
As a kind of adjuvant therapy, traditional Chinese medicine (TCM) has aroused widespread concern about the improvement of CFS. Although a large number of clinical randomized controlled trials have confirmed the therapeutic effect of TCM on CFS, the exact efficacy is still controversial.
This article summarizes the clinical research methods and efficacy of TCM in the treatment of CFS over the past five years from the perspectives of syndrome differentiation, external treatment, and combination therapy.
7. Summary
Currently, there are many methods for treating CFS with TCM, showing its advantages. On one hand, treatments according to syndrome differentiation are diverse and involve herbal decoctions and proprietary Chinese medicines. External treatments include moxibustion, acupuncture, tuina, cupping, and other treatments. Combination therapies include two or more external treatments combined and internal and external treatments combined, which are often better than monotherapies and can remedy deficiencies. However, the clinical manifestations of CFS are different. Although fatigue is the main manifestation, there are individual differences in the appearance of insomnia or muscle pain in some patients. Treatments according to syndrome differentiation can provide patients with individualized treatments. On the other hand, TCM often has the advantages of simplicity, effectiveness, convenience, and a lower cost.
However, there are still many problems in the treatment of CFS with TCM. For example, diagnostic criteria of syndrome differentiation, treatment methods, and efficacy evaluations have not yet reached a consensus. Some therapies are quite cumbersome or rare, but the efficacy is almost the same. Sometimes, combination therapy is taken, but the focus on primary and secondary treatments is not clear. Therefore, it is difficult to compare which therapy is better, which reduces the credibility of the studies.
Among the databases that we examined, RCT experiments accounted for a large proportion, and the total effective rates of observation groups were often over 90% and were even as high as 100%. However, there was a lack of repeated experiments. The level of evidence is not good enough, and high-quality clinical trials are still needed, which remains the main contradiction in the treatment of CFS with TCM.
In the process of searching the papers, we also found some folk-specific therapies, such as a classic medicated diet porridge using herbs (composition: Yam 10 g, Semen euryales 10 g, Leek seed 10 g, and Japonica rice 50 g), which can improve symptoms such as fatigue by taking 500 ml once every other day [74]. Another one, which involves head scraping combined with music therapy for 15 min qd 5 times a week, may achieve similar results [75]. Spinal conditioning (a tuina technique) combined with tea therapy (a teabag made from Tangerine peel 20 g, Mint 15 g, Wild Jujube seed 20 g, and Bupleurum 20 g) can activate the brain [76]. Baduanjin exercise combined with acupuncture may strengthen immunity to treat CFS [77]. All these therapies might have effects on CFS to some extent, but related studies are rare, research data are relatively scarce, and safety cannot be guaranteed.
Therefore, the recommendations are as follows.
(1) To standardize the consensus of TCM diagnosis and treatment of CFS, unified and standardized syndrome differentiation and efficacy evaluation system should be established.
(2) Multicenter, large-sample RCT experiments on CFS should be conducted to provide proof of evidence-based medicine using TCM.
(3) CFS model research and animal experiments should be carried out to provide scientific theories for verifying the efficacy of TCM therapies.
(4) Clinical studies of folk-specific therapies should be conducted, emphasizing the safety and reliability of clinical trials to enrich the TCM studies on CFS.
we assume that only 10% of Long haulers will be left with ME/CFS
COVID -19 could generate 10 million new cases of ME/CFS, globally
ARTICLE INTRODUCTION
“Recovering” from COVID-19 does not guarantee a return to a person’s usual state of health. For one thing, some people with multi-system injury—particularly to the brain, heart and kidneys—may develop permanent dysfunction of those organs.
In addition, a more subtle form of chronic illness may develop. For some people with COVID-19, even those who are mildly affected at first, the ensuing weeks and months of “recovery” bring a surprise and a betrayal: they do not return to full health. Although nucleic acid tests no longer detect the virus, people still suffer from ongoing symptoms. They call themselves “long haulers”, and the condition is being called “long COVID”.
HOW COMMON IS A LINGERING POST-COVID-19 ILLNESS?
USA – The Centers for Disease Control and Prevention (CDC) followed nearly 300 people who were PCR-positive for SARS-CoV-2 for several weeks. Three weeks after the positive test, nearly half of the patients still had symptoms such as fatigue and cough—particularly people who were older or suffered from chronic diseases (Tenforde, 2020).
Italian investigators studied 143 confirmed COVID-19 patients after the most severe symptoms had ended. Sixty days after the onset of their illness, more than half of the patients continued to have multiple bothersome symptoms, and 41% reported a worsened quality of life (Carfi, 2020).
Irish investigators studied 128 patients with PCR-documented SARS-CoV-2 infection and found that, at a median of 10 weeks after the initial COVID-19 symptoms, 52% reported persistent fatigue and 31% had not returned to work. Surprisingly, there was no association of post-COVID fatigue with the severity of the acute illness, nor with routine laboratory markers of inflammation and cell turnover (Townsend, 2020).
International – Between December, 2019 and May, 2020, a group of patients conducted an online survey of patients who, by self-report, experienced symptoms consistent with COVID-19, in collaboration with University College, London; Weill Cornell Medicine, New York, NY; and Oregon Health and Science University, Portland, Oregon. The survey consisted of 257 questions, was translated from English to eight other languages, and was completed by 3,762 patients (age 18 or older) from 56 countries—predominantly white, middle-class and English-speaking. Of the respondents, 8.4% reported being hospitalized, and 27% reported a laboratory-confirmed diagnosis. At 7 months after the onset of the illness, continue fatigue, post-exertional malaise and cognitive dysfunction (all core symptoms of ME/CFS) remained in 77.9%, 71.2% and 56.8%, and 67.5% were unable to work or required a reduced work schedule compared to prior to the illness onset. Systematic physical examination and laboratory diagnostic panel was not performed (Davis, 2020). The data, as reported, don’t allow a determination of how many of these people with possible COVID-19 met criteria for ME/CFS, but it is plausible that the majority did.
POST-INFECTIOUS FATIGUE SYNDROMES
It is not surprising that some people infected with the COVID-19 coronavirus (SARS-CoV-2) develop a debilitating chronic fatigue. Post-infectious fatigue syndromes follow in the wake of acute infections with several different types of infectious agents: viruses such as SARS coronavirus (Moldofsky, Patcai, 2011), Epstein-Barr virus (Jones, et al., 1985; White, et al., 1998; Hickie, et al., 2006), Ross River virus (Hickie, et al., 2006), enteroviruses (Chia, Chia, 2008), human herpesvirus-6 (Komaroff, 2006), Ebola virus (Epstein, et al., 2015), West Nile virus (Sejvar, et al., 2008), Dengue virus (Seet, et al., 2007), and parvovirus (Kerr, et al., 2010); bacteria such as Borrelia burgdorferi (Sigal, 1990), Coxiella burnetii (Morroy, et al., 2016) and Mycoplasma pneumoniae (Nicolson, et al., 2003); and even parasites such as Giardia lamblia (Litleskare, et al., 2018). The acute symptoms of these illnesses, and the organ damage they cause, can be very different. However, the lingering chronic fatiguing illness following each illness appears to be quite similar.
People with post-infectious fatigue syndromes following these well-documented acute infections share a group of symptoms in common with people who have ME/CFS (originally called just “chronic fatigue syndrome”). Many, but not all, people with ME/CFS note that it began suddenly, with an apparently infectious illness characterized by respiratory symptoms, fever, adenopathy, myalgias and other symptoms. Because such acute illnesses are common and typically resolve, often no attempt has been made to diagnose the inciting infectious agent. Yet the spectrum of symptoms in ME/CFS that follows an apparently infectious illness due to an undocumented infectious agent is very similar to the illness following a well-documented infectious agent.
often no attempt has been made to diagnose the inciting infectious agent
Indeed, according to Dr. Anthony Fauci, the Director of the National Institute for Allergy and Infectious Diseases, patients post-COVID-19 can develop “a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome” (Topol E, 2020).
A widely-used case definition of ME/CFS was proposed by the U.S. National Academies of Sciences, Engineering and Medicine (NASEM) (Institute of Medicine, 2015). This case definition requires that the illness must have lasted for at least six months. Since most people who have developed COVID-19 in the U.S. have not yet been ill for 6 months, not enough time has elapsed to know how many will develop an illness that meets the case definition of ME/CFS. We think it is likely that some will.
between 836,000 and 2.5 million Americans suffer from ME/CFS
What is the current burden from ME/CFS in the United States? CDC and NASEM estimate that between 836,000 and 2.5 million Americans suffer from ME/CFS; the direct and indirect economic costs of the illness to society are estimated to be between $17 and $24 billion each year (Institute of Medicine, 2015).
HOW MANY ADDITIONAL CASES OF ME/CFS WILL BE CAUSED BY THE PANDEMIC?
One can only guess about the future, but we propose a few conservative estimates. As of December 2020, over 18 million Americans have tested positive for SARS-CoV-2. Based on serological studies the CDC estimates that the true number of infections may be exponentially higher.
To estimate the number of people in the U.S. who may develop “long COVID” we make two conservative assumptions:
the introduction of effective vaccines in late 2020 and early 2021 will constrain the total number of people in the U.S. who become infected with SARS-CoV-2 to only 25 million Americans by the end of 2021; and
although over 50% of people with confirmed or suspected COVID-19 state that they remain with lingering symptoms at 3 months, we assume that only 10% will be left with an illness that meets the NASEM case definition for ME/CFS.
we assume that only 10% will be left with … ME/CFS
This is consistent with a careful prospective study of the course of symptoms following three quite different acute infections (Hickie, et al., 2006). Over the course of one year, that would at least double the number of Americans suffering from ME/CFS. The annual incidence of the illness would equal or surpass the point prevalence—a remarkable event in the history of a chronic illness.
What might this mean globally? As of December 2020, COVID-19 has been documented in nearly 80 million people, globally. Using similar estimates to those we used for the U.S., that number would be predicted to increase to nearly 110 million during 2021, and to generate over 10 million new cases of ME/CFS, globally.
10 million new cases of ME/CFS, globally?
Of course, these number are all rough guesses. But they are informed by well-measured prior experience, and suggest that the U.S. and the world will see a substantial growth in the number of people with ME/CFS. How lasting that illness will be, we cannot know. Most long-term longitudinal studies of people with ME/CFS before the pandemic found that, in most patients, the illness had not abated after many years (Nisenbaum, et al., 2003; Cairns, Hotopf, 2005), although the prognosis may be somewhat better in children with ME/CFS (Bell, et al., 2001).
WHAT CAUSES POST-INFECTIOUS FATIGUE SYNDROMES AND ME/CFS?
Any acute infectious disease, like COVID-19, that damages multiple organ systems can cause chronic symptoms (along with objective physiological abnormalities) in some people. The symptom of chronic fatigue could be caused by impaired function of the heart, lung or kidneys. It is too early in the COVID-19 pandemic to know how many will suffer permanent dysfunction of these organs, but it surely is possible. Therefore, in some people with persistent, debilitating fatigue following COVID-19, documentable damage of these organs may be a sufficient explanation of their fatigue. Careful longitudinal studies assessing both symptoms and physiologic function will be necessary to know whether, and how often, this happens.
Experiencing a life-threatening illness, particularly when extreme measures such as artificial ventilation are required, can lead to post-traumatic stress disorder (PTSD). And if a patient has not been able to return to pre-illness function due to chronic symptoms, the persistent symptoms may also trigger major depression. These psychiatric disorders also may lead to chronic fatigue and related symptoms.
Yet, many cases of post-infectious fatigue follow in the wake of acute infections that are not known to cause permanent damage to the heart, lungs or kidneys—and in people without comorbid PTSD or depression. In the typical case of ME/CFS, in particular, the inciting “infectious-like” illness most often appears to be a transient infection, or a primary infection that becomes permanent but does not typically produce chronic organ dysfunction (such as occurs with Epstein-Barr virus).
What might explain the fatigue and other symptoms if there is no documented heart, lung or kidney damage? Although uncertain, it is likely that the causes of all post-infectious fatigue syndromes share with each other and with ME/CFS many common elements (Komaroff, 2019). Longitudinal studies of people who develop COVID-19 will be necessary to reveal the biological underpinnings of many post-infectious fatigue syndromes.
In people with lingering fatigue post-COVID-19—and without chronic cardiac, pulmonary or renal dysfunction—one likely explanation for the chronic fatigue is a state of chronic low-grade neuroinflammation generated by the disease (Mueller, et al., 2019).
SARS-CoV-2 can infect the brain, causing neuroinflammation (Pan, et al., 2020).
one likely explanation… is a state of chronic low-grade neuroinflammation
Moreover, inflammation elsewhere in the body can activate the innate immune system in the brain via both humoral and retrograde neural signals, largely involving the vagus nerve (Poon, et al., 2015; VanElzakker, 2013). As argued elsewhere (Komaroff, 2019), neuroinflammation can produce fatigue through the action of various cytokines, perhaps acting on a “fatigue nucleus”—a collection of neurons dedicated to diminishing energy-consuming activities (“sickness behavior”). Such energy-conserving behavior in an organism that is infected or injured would help to focus available energy stores on the process of healing (Dantzer, et al., 2014; Poon, et al., 2015).
In addition to activation of a “fatigue nucleus” by neuroinflammation, a state of chronic, severe fatigue and related symptoms could also be explained by other abnormalities identified in ME/CFS: impaired energy production (Naviaux, et al., 2016), oxidative stress (Kennedy, et al., 2005), ion channelopathies (Balinas, et al., 2019) and impaired cerebral perfusion (van Campen, et al., 2020).
Other explanations: impaired energy production oxidative stress ion channelopathies impaired cerebral perfusion
The longitudinal studies that need to be conducted include repeatedly collecting information on the presence and severity of various symptoms—symptoms common in people with COVID-19 and symptoms that are part of case definitions of ME/CFS. Such studies also should include repeated laboratory studies of the immune system, metabolism, gene structure and the transcriptome, as well as tests of thinking, sleep, and the functioning of the nervous system, heart and cardiovascular system.
WHAT ARE THE IMPLICATIONS FOR PRACTICING PHYSICIANS?
Although there now is a literature of over 9,000 peer-reviewed studies of ME/CFS, as identified by NASEM (Institute of Medicine, 2015), it is our experience that many practicing physicians know little about the illness. If a wave of new cases that doubles the number of Americans with ME/CFS is about to emerge, we need to increase efforts to prepare physicians to deal with this burden. A U.S. ME/CFS Clinician Coalition1—physicians experienced in the care of people with ME/CFS—has created a website containing useful information1. CDC2 and NIH3 also provide online information.
CONCLUSION
The COVID-19 pandemic has been a tragedy. It has devastated the health and financial well-being of many people around the world. An unprecedented effort is underway to understand, prevent and treat the disease.
We should not forget the importance of studying all people who become infected with SARS-CoV-2, even those with only mild initial illnesses, and to study the recovery period and the long-term health consequences of COVID-19. We need to know how to prevent and treat “long COVID”. What we learn may apply to the prevention and treatment of ME/CFS, as well.
An increasing number of children with complex health needs are being educated in mainstream classes. CFS/ME is a complex and disabling condition, and there is little guidance on how primary school teachers can support younger children with this condition. To improve care, it is important to understand what these children need in the school setting, and the barriers and facilitators to teachers providing this support.
The aims for this qualitative study were to explore teachers’ views about CFS/ME, their experiences of supporting a pupil with CFS/ME and their perspectives on the barriers and facilitators to providing support.
Methods
We recruited families from an NHS specialist paediatric CFS/ME service and families were eligible if the child was aged between 5 and 11 years and had a diagnosis of CFS/ME. We gained written consent/assent from families to invite the child’s teacher to participate in a qualitative interview. We contacted these teachers, gained written consent and then carried out semi-structured qualitative interviews. Interviews were audio-recorded, transcribed, anonymised and analysed thematically. Interviews took place between July 2018 and December 2018.
Results
We interviewed 11 teachers; their pupil’s age ranged from 5 to 11 years and school attendance ranged from 0 to 80%.
Theme 1: Most teachers provided rich descriptions of their pupil’s CFS/ME; they consistently described cognitive dysfunction and significant fatigue, but beyond this the symptoms varied from one account to the next (from mobility problems, to aches and pains, digestive problems, headaches, nausea and hypersensitivity). These teachers noted the ripple effects on their pupil’s social, emotional and academic functioning. Two of the eleven teachers said that they did not observe symptoms of CFS/ME, expressing a degree of scepticism about the diagnosis.
Theme 2: Teachers described a close relationship with their pupil. They said they understood the individual needs of the child and portrayed positive and proactive attitudes towards providing support. The type of support provided included facilitating rest breaks and limiting strenuous activities; using practical strategies to address cognitive, physical, social and emotional difficulties; maintaining a connection with the child during their absences from school; and encouraging the child to talk about their health and wellbeing. Teachers noted that receiving formal confirmation of the child’s diagnosis enabled them to put this support in place.
Theme 3: The adaptations they described were often intuitive, rather than being based on a knowledge of CFS/ME. Teachers wanted more resources to increase their understanding of the condition and its management.
Conclusions
Primary school teachers want to provide effective support for children with CFS/ME. Clinical services should consider working in collaboration with teachers to equip them with evidence-based strategies for CFS/ME management in the primary school setting.
The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS.
Materials and Methods:
A MEDLINE search was carried out. The papers identified were reviewed following the synthesis without meta-analysis (SWiM) methodology, and were classified according to the focus of the enquiry (patients, GPs, database and medical record studies, evaluation of a training programme, and overview papers), and whether they were quantitative or qualitative in nature;
Results:
Thirty-three papers were identified in the MEDLINE search. The quantitative surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. It should be noted, though, that these papers were mostly from the United Kingdom. Patient surveys indicated that a similar proportion of patients was dissatisfied with the primary medical care they had received. These findings were consistent with the findings of the qualitative studies that were examined, and have changed little over several decades.
Conclusions:
Disbelief and lack of knowledge and understanding of ME/CFS among GPs is widespread, and the resultant diagnostic delays constitute a risk factor for severe and prolonged disease. Failure to diagnose ME/CFS renders problematic attempts to determine its prevalence, and hence its economic impact.
AIM ImmunoTech has dosed its first Covid-19 ‘long hauler’ patient in the active AMP-511 Expanded Access Program (EAP) with the Ampligen (rintatolimod) drug for the treatment of post-Covid-19 infection chronic fatigue-like symptoms.
The company noted that more patients are being enrolled in the trial, which is believed to be the first one to treat a patient with Covid-19-induced chronic fatigue-like symptoms.
As per the Ampligen EAP protocol, at a time, it is authorised to enrol up to 100 active Chronic Fatigue Syndrome trial subjects, 20 of whom could be long haulers.
All participants will be given the same Ampligen therapy in the trial.
AIM CEO Thomas Equels said: “The development of an effective therapy for Covid-19-induced chronic fatigue is a critical unmet public health need.
“Although AMP-511 is not a controlled trial, patients in this AIM-sponsored study are monitored closely and it may be possible to report important observations as early as May.”
Last year, AIM had announced the expansion of the Ampligen-involved myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) EAP to add in patients who were previously infected with Covid-19 and whose symptom persistence has led to the group called ‘long haulers’.
According to studies, Covid-19 recovered patients can have persistence of symptoms.
Furthermore, many of the first SARS-CoV-1 epidemic survivors in 2003 had classic chronic fatigue-like symptoms after they recover from acute disease.
“Hunter-Hopkins Center is excited to have started Ampligen therapy for the first time on a Long Hauler with CFS-like symptoms.
“We believe that Long Haulers experience a post-viral fatigue syndrome similar to many persons with Chronic Fatigue Syndrome, and starting treatment early and aggressively should enhance the potential to improve their symptoms and outcomes.”
We are receiving a very high number of enquiries from people with M.E. asking if they should have the Covid-19 vaccine, and when they should expect to be offered it.
The 25% M.E. Group, Action for M.E. and the ME Association have collaborated to agree the following statement, also being shared by Forward ME.
Any vaccine which is approved will have been tested on people with long-term conditions,
including looking at whether there are any differences in how well the vaccine works in people with a range of (but not all) health conditions. However, at present we have no data from these clinical trials specifically relating to M.E./CFS.
This means that vaccination must be an individual decision based on a clear understanding of the risks and benefits associated with it.
While it is possible there might be a minor reaction to the vaccine, this will almost certainly be much less severe than catching Covid 19 itself, particularly for those severely affected.
Potential risks are as follows:
As with most vaccines, there is a risk that the Covid-19 vaccine will exacerbate symptoms, particularly those which overlap with commonly reported vaccine side-effects, eg. fatigue, fever, muscle pain. In his summary of published vaccine research Cort Johnson notes that every vaccine has produced more side effects after the second dose than the first; and more side effects in younger people (under 55 years) compared to older people. Anyone who experiences side-effects
should report this to the Medicines and Healthcare products Regulatory Agency using its Yellow Card scheme.
There is a very small possibility that more serious side-effects could become apparent over time, as more people have the vaccine. Some people with M.E. are taking a “wait and see” approach for this reason, while shielding carefully in the meantime.
A very small number of people, with a past history of allergic reactions, have reported a severe allergic reaction to the Pfizer vaccine. UK government guidance for health professionals sets out more information on this; see also Anaphylaxis Campaign information.
Priority group 6 as listed by the Joint Committee on Vaccination and Immunisation (JCVI) includes people with “underlying health conditions which put them at higher risk of serious disease and mortality.” The main risk groups identified by the committee include “chronic neurological disease” and we believe this includes M.E. The ME Association has written to the Chief Medical Officer for England, Prof Chris Witty, to seek confirmation.
Statement on long COVID and ME/CFS by the International Alliance for Myalgic Encephalomyelitis (IAFME)
IAFME is a formal collaboration between national organizations representing patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
SARS-CoV-2 (COVID-19) continues to affect millions of people globally. While some people recover, other people have a delayed recovery and across the world we are now seeing the emergence of a significant group of people who are struggling with a wide spectrum of symptoms similar to ME/CFS, many weeks or months after their initial COVID infection.
From our experience we know that, like ME/CFS, long COVID is both a real and highly disabling condition. There are, of course, many differences in our experience of long COVID and its relationship to ME/CFS but we have come together as an alliance to share the similarities in our experience in the hope of better outcomes for patients, and their families, experiencing both long COVID and ME/CFS.
Stop, Rest, Pace
We counsel individual patients, medical providers and people operating at all political levels associated with health to advise patients to stop, rest and pace. Patient organisations working in ME/CFS will often have tools or services to assist with this. We encourage medical professionals and long COVID patients to contact ME/CFS organisations in their own country to share appropriate resources and assistance available.
Better outcomes by far are found from advising patients not to push and, as with ME/CFS, not to focus on exercise. Patient health and quality of life is maximised by advocating for and advising that they rest, manage their activities and that their symptoms are treated – as possible and appropriate.
Opportunity for Research
The sudden, dramatic rise of COVID-19 provides a real opportunity for much-needed research into post viral conditions – research which will help both people with long COVID and people with diseases such as ME/CFS. We urge Governments and philanthropists to seize this opportunity to understand what is delaying (or preventing) recovery and – crucially – what restores health to those patients who recover.
We will continue to work collaboratively to ensure that this opportunity is not lost. The neglect of people with ME/CFS must stop. We hope that some good may come from the pain and suffering caused by this pandemic in that it may finally help us to see the investment in research, treatments and care that every single adult and child with ME/CFS and their families deserves.
International Alliance for ME Statement, signed by WAMES as a member. December 2020
Our alliance seeks to facilitate a coordinated, simultaneous dialogue with policymakers at national and international levels, increasing its potential impact.
We encourage the pooling, sharing, and dissemination of advocacy and communication of resources.
We promote the expansion of engagement with relevant stakeholders – worldwide organizations sharing the same message is much more powerful than an isolated voice.
There has been extensive research on post-viral fatigue, and the present mini-review and
commentary provides an overview of the effects associated with different infecting agents.
Fatigue is not only a subjective state, rather it has an impact on our ability to carry out everyday functions, and its effect can be demonstrated using performance tasks. It is not surprising, therefore, that persistent effects of COVID-19 are observed, and the key features of Long Covid are reviewed here.
Suggestions for further research which will provide a better understanding of Long Covid and provide a basis for prevention and management are also discussed.
3. CONCLUSIONS
Post-viral fatigue has been recognised and studied for a long time. The present article summarises previous research on post-viral fatigue. [Influenza, Common cold, Rabbit fever, Mononucleosis, Human Herpesvirus, Enterovirus, Parvovirus, Retrovirus, Ross River virus]
Upper respiratory tract infections often lead to short-lived fatigue, and this demonstrates the importance of considering time periods when the person no longer has the acute symptoms. More severe infections can lead to long-lasting fatigue, and there is good evidence that human herpesviruses and enteroviruses can lead to chronic fatigue syndrome.
It is not surprising, therefore, that a severe disease such as COVID-19 can lead to persistent syndromes. Long Covid has recently been recognised, and the features of the condition are described here.
At the moment, we are at the stage of having identified the condition. Further urgent research is now required to get a better understanding of underlying risk factors and mechanisms, and to develop appropriate prevention and management strategies
Myalgic encephalomyelitis, or Chronic Fatigue Syndrome, is on the rise.
Lisa Shanks, 48, was a healthy, energetic cardio-dance and fitness instructor before March 2020.
But three weeks after coming down with COVID-19, she felt worse instead of better, coughing nonstop and feeling as if she was wearing a tight corset preventing her from taking deep breaths. She was weak, dizzy and had blurred vision.
A COVID-19 “long hauler,” Shanks, of Vacaville, Calif., felt disconnected from herself and from the world. Her heart rate soared if she did something as simple as get out of bed. She was afraid she would die.
Though never hospitalized due to the coronavirus, by four months into the illness, Shanks lost 20 pounds and had muscle wasting and sagging skin that she says “looked like a deflated balloon.”
‘A Body Nothing Like the One I Had Before’
Now, nine months after Shanks was first laid flat, she says,
“I feel like an alien has taken over my body. I’m like a car that has run out of gas, stuck inside this body that is nothing like the one I had before.”
Recently, after pulmonary function tests revealed that her lungs were only working at 50% capacity, Shanks was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, often referred to as Chronic Fatigue Syndrome.
“Individuals with the disorder need to learn pacing, in which they are taught to respect their own triggers and limitations.”
says Adriane Tillman, editor of #MEAction, an international organization of people with ME, caregivers and family members.
“This means stopping and resting at the first signs of overexertion. Pacing helps patients to avoid a cycle of push-and-crash which can worsen symptoms significantly.”
The role of the Virtual Office Manager would be to:
As a kind of 
Currently, there are many methods for treating CFS with 
“Recovering” from COVID-19 does not guarantee a return to a person’s usual state of health. For one thing, some people with multi-system injury—particularly to the brain, heart and kidneys—may develop permanent dysfunction of those organs.
An increasing number of children with complex health needs are being educated in mainstream classes. CFS/ME is a complex and disabling condition, and there is little guidance on how primary school teachers can support younger children with this condition. To improve care, it is important to understand what these children need in the school setting, and the barriers and facilitators to teachers providing this support.
The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS.
The company noted that more patients are being enrolled in the trial, which is believed to be the first one to treat a patient with Covid-19-induced chronic fatigue-like symptoms.
Lisa Shanks, 48, was a healthy, energetic cardio-dance and fitness instructor before March 2020.
