A qualitative analysis of teachers’ experiences of CFS/ME

Posted on 01/14/2021 by wames

‘It’s a medical condition … you need to support as much as possible’: A qualitative analysis of teachers’ experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), by Amberly Brigden, Alison Shaw, Esther Crawley in BMC Pediatrics Vol 21, #1, p 6, January 4, 2021

 

Research abstract:

Background

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.

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A literature review of GP knowledge & understanding of ME/CFS

Posted on 01/13/2021 by wames

A literature review of GP knowledge and understanding of ME/CFS: a report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE), by Derek FH Pheby, Diana Araja, Uldis Berkis, Elenka Brenna, John Cullinan, Jean Dominique de Korwin, Lara Gitto, Dyfrig A Hughes, Rachael M Hunter, Dominic Trepel, Xia Wang-Steverding in Medicina Vol 57 Issue 1, Dec 2020 [doi.org/10.3390/medicina57010007]

 

Review abstract:

Background and Objectives:

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.

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Ampligen – AIM doses first ‘long hauler’ patient in trial of post-Covid-19 infection

Posted on 01/13/2021 by wames

Clinical Trial Arena: AIM doses first ‘long hauler’ patient in trial of post-Covid-19 infection, 7 January 2021

 

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.

By Felipe Esquivel Reed - Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=87846813The 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 EAP investigator Dr Charles Lapp said:

“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.”

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UK ME charity statement on the Covid vaccine

Posted on 01/13/2021 by wames

Forward-ME: ME charity statement on the Covid vaccine, 12 January 2021

 

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.

COVID-19 can have serious, life-threatening and potentially long-lasting complications, and there is no way to know how the virus will affect you.

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.

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Statement on long COVID & ME/CFS by the International Alliance for Myalgic Encephalomyelitis (IAFME)

Posted on 01/13/2021 by wames

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.

See also US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS 

 

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Post-viral fatigue: implications for long Covid

Posted on 01/13/2021 by wames

Post-viral fatigue: Implications for long Covid, by A P Smith in Asian Journal of Research in Infectious Diseases 6(1): 17-23, 2021 [doi : 10.9734/AJRID/2021/v6i130182]

 

Review abstract:

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

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For many COVID-19 survivors, another devastating syndrome may follow – ME/CFS

Posted on 01/12/2021 by wames

For many COVID-19 survivors, another devastating syndrome may follow, by Barbra Williams Cosentino, in Next Avenue, January 8, 2021

 

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.

Read more about the rise of ME/CFS following Covid-19 infections in the USA

“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.”

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ME/CFS: organic disease or psychosomatic illness? A re-examination of the Royal Free Epidemic of 1955

Posted on 01/10/2021 by wames

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease or Psychosomatic Illness? A Re-Examination of the Royal Free Epidemic of 1955, by  Rosemary Underhill and Rosemarie Baillod in Medicina Vol 57 Issue 1 p12 [10.3390/medicina57010012] (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Abstract:

Background and Objectives:

Controversy exists over whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an organic disease or a psychosomatic illness. ME/CFS usually occurs as sporadic cases, but epidemics (outbreaks) have occurred worldwide.

Myalgic encephalomyelitis was named to describe an outbreak affecting the lymphatic, muscular, and nervous systems that closed the Royal Free hospital for three months in 1955. Fifteen years later, two psychiatrists concluded that epidemic hysteria was the likely cause.

ME/CFS research studies show multiple pathophysiological differences between patients and controls and a possible etiological role for infectious organisms, but the belief that ME/CFS is psychosomatic is widespread and has been specifically supported by the epidemic hysteria hypothesis for the Royal Free outbreak. Our objective was to obtain accounts from ex-Royal Free hospital staff who personally experienced the 1955 outbreak and evaluate evidence for it being an infectious illness versus epidemic hysteria.

Materials and Methods:

Statements in the newsletters of two organizations for staff who had worked at the Royal Free hospital invited anyone who had experienced the 1955 Royal Free outbreak to contact the authors. Accounts of the outbreak from telephone interviews and letters were evaluated against the “epidemic hysteria hypothesis” paper and original medical staff reports.

Results:

Twenty-seven ex-Royal Free hospital staff, including six who had developed ME, provided descriptions typical of an infectious illness affecting the lymphatic, muscular, and nervous systems, and were not consistent with epidemic hysteria.

Conclusions:

The 1955 Royal Free hospital epidemic of myalgic encephalomyelitis was an organic infectious disease, not psychogenic epidemic hysteria.

1955 Royal Free Hospital outbreak – MEpedia

Trial by error: New study reports first-hand accounts of 1955 hospital outbreak

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COVID-19 & CFS: is the worst yet to come?

Posted on 01/07/2021 by wames

COVID-19 and chronic fatigue syndrome: Is the worst yet to come? by Peter Wostyn in Med Hypotheses 2021 Jan 2 [doi: 10.1016/j.mehy.2020.110469]

 

Article abstract:

There has been concern about possible long-term sequelae resembling myalgic encephalomyelitis/chronic fatigue syndrome in COVID-19 patients. Clarifying the mechanisms underlying such a “post-COVID-19 fatigue syndrome” is essential for the development of preventive and early treatment methods for this syndrome.

In the present paper, by integrating insights pertaining to the glymphatic system and the nasal cerebrospinal fluid outflow pathway with findings in patients with chronic fatigue syndrome, idiopathic intracranial hypertension, and COVID-19, I provide a coherent conceptual framework for understanding the pathophysiology of post-COVID-19 fatigue syndrome.

According to this hypothesis, this syndrome may result from damage to olfactory sensory neurons, causing reduced outflow of cerebrospinal fluid through the cribriform plate, and further leading to congestion of the glymphatic system with subsequent toxic build-up within the central nervous system. I further postulate that patients with post-COVID-19 fatigue syndrome may benefit from cerebrospinal fluid drainage by restoring glymphatic transport and waste removal from the brain.

Obviously, further research is required to provide further evidence for the presence of this post-viral syndrome, and to provide additional insight regarding the relative contribution of the glymphatic-lymphatic system to it. Other mechanisms may also be involved. If confirmed, the glymphatic-lymphatic system could represent a target in combating post-COVID-19 fatigue syndrome.

Moreover, further research in this area could also provide new insights into the understanding of chronic fatigue syndrome.

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ME/CFS: major impact on lives of both patients & family members

Posted on 01/07/2021 by wames

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major impact on lives of both patients and family members, by Esme Brittain, Nina Muirhead, Andrew Y Finlay and Jui Vyas in Medicina 2021, 57(1), 43; [doi.org/10.3390/medicina57010043]  (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Research abstract:

Background and objectives:

To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments.

Materials and Methods:

A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire.

Results:

ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores.

Conclusions:

This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

More about the study from Esme Brittain

Larger global Family Impact study from Cardiff University, deadline 5 Feb 2020

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