Current knowledge about Chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) causes – summary

Abstract:

Chronic Fatigue Syndrome (CFE) is a severe and disabling disease whose etiology has not yet been elucidated. This implies the lack of a specific biomarker for the diagnosis of PE, and no causal treatment.

There are a number of diagnostic criteria that facilitate the diagnosis of PE, but it is still a diagnosis with exclusion. This chapter reviews the scientific literature systematically, summarizing the available knowledge about the probable etiology of Chronic Fatigue Syndrome.

The current topic of the influence of SARS-Cov-2 virus infection on the development of symptoms of IPC was also taken into account in particular.

A clear explanation of the etiology of PE is necessary for the further development of scientific knowledge about the Chronic Fatigue Syndrome.

Source: PRYLIŃSKA-JAŚKOWIAK, Monika & KOŻUCHOWSKI, Marcin. Current knowledge about Chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) causes – summary. Journal of Education, Health and Sport [online]. 13 September 2022, T. 12, nr 9, s. 712–719. [accessed 26.9.2022]. DOI 10.12775/JEHS.2022.12.09.084.  https://apcz.umk.pl/JEHS/article/view/39954 https://apcz.umk.pl/JEHS/article/view/39954/33214 (Full text)

Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway

Abstract:

Background: Informal caring is expanding in many countries as populations age. There is a lot of research on how to care responsibilities are experienced by next of kin, but there is little research on men, which is the focus of this study. This specific focus is Myalgic Encephalopathy (ME), which is a condition that often affects women. This means that it is men who often find themselves in a caring role.

Aim: This project aims to explore what it was like for Norwegian men to have a caring role toward a partner with ME and how it affects everyday life.

Method: A qualitative approach was used. Ten semi-structured interviews were conducted, and the participants were recruited from different places in Norway. All were between the ages of 30 to 60 years old and were caring for a partner for several years. To analyze the data, thematic analysis was used, to find different patterns in the data.

Results: A data emerged two main themes and seven under the themes “experiencing the impact of caring for a partner with ME on everyday life “and providing different kinds of support. The experience around the role of caring was influenced by several factors, such as changes in finances and family dynamics as well as accessing formal support. Overall, the mean men felt that being in a caring role meant that life was being put on hold.

Conclusion: Findings from this study help to strengthen previous research. Having a caring role for a sick partner with ME was demanding and greatly affects everyday life. Men found the role of care challenging and it could negatively affect the person psychologically. For most people in a caring role, there was potential for better support both emotionally and financially.

Source: Elise Torp. Understanding the experiences of caring for a partner with myalgic encephalopathy: a qualitative study of men in Norway. M.Sc. Thesis. https://brage.inn.no/inn-xmlui/handle/11250/3019314?locale-attribute=en

Systemic antibody responses against human microbiota flagellins are overrepresented in chronic fatigue syndrome patients

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease with an unclear etiology and pathogenesis. Both an involvement of the immune system and gut microbiota dysbiosis have been implicated in its pathophysiology. However, potential interactions between adaptive immune responses and the microbiota in ME/CFS have been incompletely characterized. Here, we profiled antibody responses of patients with severe ME/CFS and healthy controls against microbiota and viral antigens represented as a phage-displayed 244,000 variant library.

Patients with severe ME/CFS exhibited distinct serum antibody epitope repertoires against flagellins of Lachnospiraceae bacteria. Training machine learning algorithms on this antibody-binding data demonstrated that immune responses against gut microbiota represent a unique layer of information beyond standard blood tests, providing improved molecular diagnostics for ME/CFS.

Together, our results point toward an involvement of the microbiota-immune axis in ME/CFS and lay the foundation for comparative studies with inflammatory bowel diseases and illnesses characterized by long-term fatigue symptoms, including post-COVID-19 syndrome.

Source: Vogl T, Kalka IN, Klompus S, Leviatan S, Weinberger A, Segal E. Systemic antibody responses against human microbiota flagellins are overrepresented in chronic fatigue syndrome patients. Sci Adv. 2022 Sep 23;8(38):eabq2422. doi: 10.1126/sciadv.abq2422. Epub 2022 Sep 23. PMID: 36149952. https://www.science.org/doi/10.1126/sciadv.abq2422 (Full text)

Exosome-Associated Mitochondrial DNA from Patients with ME/CFS Stimulates Human Cultured Microglia to Release IL-1β

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease that presents with fatigue, sleep disturbances, malaise, and cognitive problems. The pathogenesis of ME/CFS is presently unknown and serum levels of potential biomarkers have been inconsistent. Here we show that mitochondrial DNA (mtDNA) associated with serum exosomes, is increased in ME/CFS patients only after exercise. Moreover, exosomes isolated from patients with ME/CFS stimulate significant release of IL-1β from cultured human microglia. These results provide evidence that activation of microglia by serum-derived exosomes may serve as a potential novel pathogenetic factor and target for treatment of ME/CFS.

Source: Tsilioni I, Natelson B, Theoharides TC. Exosome-Associated Mitochondrial DNA from Patients with ME/CFS Stimulates Human Cultured Microglia to Release IL-1β. Eur J Neurosci. 2022 Sep 24. doi: 10.1111/ejn.15828. Epub ahead of print. PMID: 36153118. https://pubmed.ncbi.nlm.nih.gov/36153118/

Long-term neuromuscular consequences of SARS-Cov-2 and their similarities with myalgic encephalomyelitis/chronic fatigue syndrome: results of the retrospective CoLGEM study

Abstract:

Background: Patients with long-COVID often complain of continuous fatigue, myalgia, sleep problems, cognitive dysfunction, and post-exertional malaise. No data are available on EMG recording of evoked myopotentials (M-waves) or exercise-induced alterations in long-COVID patients, providing evidence of muscle membrane fatigue. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) develops in more than half of patients after an infectious disease, particularly viral diseases. A large proportion (around 70%) of these patients have neuromuscular disorders with M-wave alterations during and after exercise. Our hypothesis was that M-wave alterations would be also found in long-COVID patients, in association with neuromuscular symptoms, similar to ME/CFS.

Methods: This retrospective observational ColGEM (Covid LonG Encéphalomyelite Myalgique) study compared 59 patients with long-COVID and 55 ME/CFS patients with a history of severe infection who presented before the COVID pandemic. All of these patients underwent the same protocol consisting of a questionnaire focusing on neural and neuromuscular disorders and M-wave recording in the rectus femoris muscle before, during, and 10 min after a progressive cycling exercise. Maximal handgrip strength (MHGS) and maximal exercise power were also measured. The frequency of symptoms and magnitude of M-wave changes in the two groups were compared using non-parametric and parametric tests.

Results: The frequency of fatigue, myalgia, sleep problems, cognitive dysfunction, and post-exertional malaise as well as the magnitude of exercise-induced M-wave alterations were the same in the two groups. By contrast, digestive problems were less present in long-COVID. M-wave alterations were greater in ME/CFS patients as in those with long-COVID when the highest muscle strength and highest exercise performance were measured.

Conclusions: These high clinical and biological similarities between long-COVID and ME/CFS support the hypothesis that SARS-Cov-2 infection can cause ME/CFS symptoms. Trial registration Registered retrospectively.

Source: Retornaz F, Rebaudet S, Stavris C, Jammes Y. Long-term neuromuscular consequences of SARS-Cov-2 and their similarities with myalgic encephalomyelitis/chronic fatigue syndrome: results of the retrospective CoLGEM study. J Transl Med. 2022 Sep 24;20(1):429. doi: 10.1186/s12967-022-03638-7. PMID: 36153556. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03638-7 (Full text)

Pulmonary Dysfunction after Pediatric COVID-19

Abstract:

Background: Long COVID occurs in lower frequency in children and adolescents than in adults. Morphologic and free-breathing phase-resolved functional low-field MRI may identify persistent pulmonary manifestations after SARS-CoV-2 infection.

Purpose: To characterize both morphologic and functional changes of lung parenchyma on low-field MRI in children and adolescents with post COVID-19 compared with healthy controls.

Materials and Methods: Between August and December 2021, a cross-sectional, prospective clinical trial using low-field MRI was performed in children and adolescents from a single academic medical center. The primary outcome was the frequency of morphologic changes on MRI. Secondary outcomes included MRI-derived functional proton ventilation and perfusion parameters. Clinical symptoms, the duration from positive RT-PCR test and serological parameters were compared with imaging results. Nonparametric tests for pairwise and corrected tests for groupwise comparisons were applied to assess differences in healthy controls, recovered participants and with long COVID.

Results: A total of 54 participants post COVID-19 infection (mean age, 11 years ±3 [SD], 56 males) and 9 healthy controls (mean age, 10 years ±3 [SD], 70 males) were included: 29 (54%) in the COVID-19 group had recovered from infection and 25 (46%) were classified as having long COVID on the day of enrollment. Morphologic abnormality was identified in one recovered participant. Both ventilated and perfused lung parenchyma (V/Q match) was reduced from 81±6.1% in healthy controls to 62±19% (P =.006) in the recovered group and 60±20% (P=.003) in the long COVID group. V/Q match was lower in post COVID patients with infection less than 180 days (63±20%, P=.03), 180 to 360 days (63±18%, P=0.03) and 360 days ago (41±12%, P<.001) as compared with the never-infected healthy controls (81±6.1%).

Conclusion: Low-field MRI showed persistent pulmonary dysfunction in both children and adolescents recovered from COVID-19 and with long COVID.

ClinicalTrials.gov: NCT04990531

Source: Heiss R, Tan L, Schmidt S, Regensburger AP, Ewert F, Mammadova D, Buehler A, Vogel-Claussen J, Voskrebenzev A, Rauh M, Rompel O, Nagel AM, Lévy S, Bickelhaupt S, May MS, Uder M, Metzler M, Trollmann R, Woelfle J, Wagner AL, Knieling F. Pulmonary Dysfunction after Pediatric COVID-19. Radiology. 2022 Sep 20:221250. doi: 10.1148/radiol.221250. Epub ahead of print. PMID: 36125379.

Long-term neurologic outcomes of COVID-19

Abstract:

The neurologic manifestations of acute COVID-19 are well characterized, but a comprehensive evaluation of postacute neurologic sequelae at 1 year has not been undertaken. Here we use the national healthcare databases of the US Department of Veterans Affairs to build a cohort of 154,068 individuals with COVID-19, 5,638,795 contemporary controls and 5,859,621 historical controls; we use inverse probability weighting to balance the cohorts, and estimate risks and burdens of incident neurologic disorders at 12 months following acute SARS-CoV-2 infection.

Our results show that in the postacute phase of COVID-19, there was increased risk of an array of incident neurologic sequelae including ischemic and hemorrhagic stroke, cognition and memory disorders, peripheral nervous system disorders, episodic disorders (for example, migraine and seizures), extrapyramidal and movement disorders, mental health disorders, musculoskeletal disorders, sensory disorders, Guillain–Barré syndrome, and encephalitis or encephalopathy.

We estimated that the hazard ratio of any neurologic sequela was 1.42 (95% confidence intervals 1.38, 1.47) and burden 70.69 (95% confidence intervals 63.54, 78.01) per 1,000 persons at 12 months. The risks and burdens were elevated even in people who did not require hospitalization during acute COVID-19. Limitations include a cohort comprising mostly White males. Taken together, our results provide evidence of increased risk of long-term neurologic disorders in people who had COVID-19.

Source: Xu, E., Xie, Y. & Al-Aly, Z. Long-term neurologic outcomes of COVID-19. Nat Med (2022). https://doi.org/10.1038/s41591-022-02001-z https://www.nature.com/articles/s41591-022-02001-z (Full text)

Long covid: protesters outside the White House demand better care

Protesters took to the pavement outside the White House on 19 September to demand a better deal for people affected by long covid, complaining that the Biden administration’s plans fell short on action and funding.

“The pandemic is over,” President Joe Biden declared the night before in a pre-recorded interview which aired on the news magazine 60 Minutes. “We still have a problem with covid,” he said. “We’re still doing a lot of work on it but the pandemic is over. If you notice, no one’s wearing masks. Everybody seems to be in pretty good shape. And, so, I think it’s changing.”

But the scene outside the presidential mansion the next day belied that message. Wearing black masks and red shirts, protesters called for research, medical treatment, and social services for those with long covid. Around half would qualify for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. The protest was organised by #MEAction, an international network of patient advocates.

“I went undiagnosed for 15 years, because doctors are not educated about the condition,” Jennifer Nish told The BMJ. Nish, from Lubbock, Texas, said that she was inspired to help organise the protest to raise awareness. “I don’t want anyone to go through what I had to go through,” she said and called on “the White House to treat this like the emergency that it is.”

Read the rest of this article HERE.

Source: Roehr B. Long covid: protesters outside the White House demand better care BMJ 2022; 378 :o2266 doi:10.1136/bmj.o2266  https://www.bmj.com/content/378/bmj.o2266 (Full text)

How “long covid” is shedding light on postviral syndromes

Long covid really shouldn’t have been a surprise, says Vett Lloyd, a biologist at Mount Allison University in Sackville, Canada. “When the pandemic started, the general assumption was that there were two possible outcomes to an infection—you’d either get better or die,” she says.

But there’s a possible third outcome. It’s long been known that a number of disease causing pathogens—some viral and some bacterial—are associated with ongoing post-infection symptoms in a significant minority of patients.

“There was no real reason to think SARS-CoV-2 should be any different than the original SARS, which also caused post-infection syndromes,” says Lloyd. She is one of many researchers who hope that the attention and funding directed towards long covid will help to shed light on how and why other infections can lead to persistent and sometimes debilitating symptoms.

Read the rest of this article HERE.

Source: Owens B. How “long covid” is shedding light on postviral syndromes BMJ 2022; 378 :o2188 doi:10.1136/bmj.o2188  https://www.bmj.com/content/378/bmj.o2188 (Full text)

Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS

Dear Editor,

The recent publication of a new NICE Guideline1 , an All-Party Parliamentary Group Report (APPG)2, and new Research Priorities3 heralds a dramatic shift in approaches and attitudes to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) in the UK. Largely ignored in all three publications, however, are unpaid carers (known outside the UK as family carers or caregivers). The vast majority of people with ME/CFS rely on their families for care and many of those families have been the driving force behind the changes to research and treatment
that are now unfolding.

There has been limited research on unpaid care in the specific context of ME/CFS, but the few existing studies clearly show that the usual toll of caring for a sick or disabled family member is compounded by the historic prejudice surrounding ME/CFS and the absence of evidence-based treatments.g.4-7.

While we applaud the commitment of NICE, the APPG, and the Priority Setting Partnership, it may still be decades before biomedical breakthroughs are made or translated into effective, widely available treatments for ME/CFS8. In the meantime, families will continue to provide the majority of
care for people with ME/CFS and bear the physical, psychological, and economic scars of doing so.

The new NICE guideline does recommend support for carers, but the supports it recommends are generic. They will do little to address the unique needs of ME/CFS carers or their systemic mistreatment by health and social care professionals. A change in the UK’s approach to ME/CFS is long overdue, but without a focus on unpaid carers the puzzle will always be missing a piece. The wellbeing of carers must also be a priority in ME/CFS
research and effective strategies must be developed to address their needs, and recognise and respect their expertise, in clinical practice and social care.

Kind regards,

Dr Siobhan O’Dwyer, University of Exeter Medical School
Ms Sarah Boothby, Former Carer
Dr Georgia Smith, University of Exeter Medical School
Dr Lucy Biddle, Bristol Medical School
Dr Nina Muirhead, Buckinghamshire NHS Trust
Dr Sharmila Khot, Cardiff and Vale University Health Board

Source: O’Dwyer S, Boothby S, Smith G, Biddle L, Muirhead N, Khot S. Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS. BMJ. 2022 Jul 14;378:o1691. doi: 10.1136/bmj.o1691. PMID: 35835467.  https://ore.exeter.ac.uk/repository/bitstream/handle/10871/130699/BMJ_Letter_ODwyer.pdf?sequence=3 (Text available as PDF file)