ME/CFS & Covid-19: information for you & your doctor

COVID-19 Information and Resources – Bateman Horne Center, March 2020


Dr Lucinda Bateman

The Bateman Horne Center works for the medical advancement and treatment of  Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)and Fibromyalgia in Salt Lake City, Utah, USA.

In addition to the resources for patients and doctors on ME/CFS they have produced some briefing papers on Covid-19 and ME/CFS, many of which are helpful people from anywhere in the world.

Dr Suzanne Vernon



Medical Director: Dr Lucinda Bateman

Researcher: Dr Suzanne Vernon



Medical Considerations Letter — In the event you become acutely ill, the Medical Care Considerations Letter serves as a guiding resource for outside medical care intervention. The intent of this letter is to provide care professionals with further information about your illness of ME/CFS and/or severe FM to assist them with their medical intervention decisions.

“you should assume they have a serious, chronic, multisystem illness that may negatively impact their prognosis”

“Based on current evidence the underlying pathology of ME/CFS involves energy metabolism, the nervous system, and the immune system.”

COVID-19 and ME/CFS/FM Frequently Asked Questions: Drs. Bateman and Yellman answer specific questions about COVID-19 as it relates to ME/CFS/FM.

e.g. Are people with ME/CFS/FM at a higher risk than the general public of dying from COVID-19 if contracted? … The immune dysregulation of ME/CFS/FM may reduce ability to fight viral infections. Additionally, the presence of chronic inflammation, allergies, asthma, mast-cell activation may pose additional risks.

Suzanne D. Vernon, PhD, addresses: SARS, CoV-2, and COVID-19: A scientific overview of COVID-19, infection/transmission, testing, and treatments on the horizon.

Advance Care Planning: The Advance Care Planning document provides guidance for establishing advanced-care-directives and POLST documents.

Personal Guidance and Decision Making

e.g. Advance Directives: Everyone, not just those with ME/CFS, should document end-of-life wishes on paper regarding aggressive medical care in a life-threatening situation. Discuss with family and medical professionals as needed.



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ME, Covid-19 & self-isolating

What do people with ME need to know about Covid-19 and self-isolating?              updated 10 April 2020


The Health Minister for Wales has confirmed that people over 70 and people with a range of health conditions, including  neurological conditions, should self-isolate. People with a cough and/or high temperature are asked to self isolate for 7 days. Those who have had contact with someone with confirmed Covid-19 should self-isolate for 14 days. Everybody should stay at home except for essential shopping, short daily exercise a day, essential medical needs, travelling to and from essential work, but only where this cannot be done from home. Social distancing is required by all people when outside the home.

Many people with ME have been self-isolating to some extent for years, because they have been too ill to mix with others. They will be practised in ensuring they have enough food, cleaning products, personal care items, ‘distractions’ and medications, but the coronavirus Covid-19 poses some extra problems and questions.

Much is still not known about this new virus, but some clues are emerging from US research and from the badly affected countries of China and Italy.

People don’t have to have symptoms to be infectious

  • symptoms appear 2-14 days after infection
  • infection can last weeks, up to 37 days (China)
  • people can be infectious before & after symptoms are apparent, or without symptoms
  • it is uncertain how many have no obvious symptoms and are spreading the virus
  • no symptoms doesn’t necessarily mean less able to spread the virus

Infected people without symptoms might be driving the spread of coronavirus more than we realized


What are the symptoms?

Regular flu has similar symptoms to COVID-19. However, COVID-19 is more likely to cause shortness of breath and other respiratory symptoms. Some people have only mild symptoms while others are very ill and struggle to breathe.

Coronavirus symptoms            Check your symptoms


How does the virus spread?

  • it might be airborne to a small extent
  • it definitely remains on surfaces
  • it probably doesn’t survive in water
  • it survives to some extent in faeces
  • they are unsure if it survives in sewerage systems
  • it enters the body via the eyes, nose, mouth, not through the skin
  • cats can catch it but it is uncertain if they can infect humans

Coronavirus can stay infectious for days on surfaces. But it’s still okay to check your mail


Who is most at risk?

Early indications in China and Italy was that the majority of people who died were over 60 with certain underlying health conditions, (but anyone can catch and pass on the virus):

  • heart disease
  • diabetes
  • hypertension – high blood pressure
  • chronic lung disease
  • some cancers

It has now become clear that younger people with no known health conditions can also be at risk.

It is unknown to what extent people with ME are at greater risk but Dr Nancy Klimas believes we could be, as ‘one of the underlying problems is that the cells protecting you against viruses are less functional because overworked.’  Dr Charles Shepherd says: ‘an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms’.

Public health England’s updated list of those at risk & requiring social distancing,  which includes Neurological Conditions, the obese and pregnant women.


What distance is safe when social distancing?

It may not be possible to avoid close contact with people giving you care, or for whom you care, but all sources say where possible stay 2 metres or 6 feet away from other people. If people are moving (cyclists or runners) it may be wise to stay up to 10m away. Face masks won’t stop you catching the virus, but they may reduce the likelihood of passing it on to others.

Prof Hugh Pennington adds: “This virus needs 15 minutes of close contact with someone carrying it for you to have a reasonable chance of contracting it…But if someone who is infected coughs or sneezes on you directly then the droplets can infect you — that will be a much higher risk.”


How long does it last on surfaces?

When self isolating we will need to receive post, groceries etc. Are they safe? US researchers measured how long the virus stays active on various surfaces:

  • up to 24 hours on cardboard
  • up to 2 or 3 days on plastic and stainless steel.
  • it remained viable in aerosols—attached to particles that stay aloft in the air—for up to 3 hours.

Accept goods from outside, then put away perishables without contaminating other items. Either thoroughly wash the outside of the items or leave them until they are safe to touch.  Wash your hands and don’t touch your face!!


Can you become re-infected?

  • it is uncertain if or how long immunity lasts
  • it appears to be possible to relapse, though numbers are small
  • there are 2 variations of the virus and potentially it could mutate, though probably unlikely
  • in some countries testing for the presence of the virus may not be reliable so people only think they have recovered
  • most people recover but some experience reduced lung function following recovery, which will require some rehab
  • some concerns have been expressed that the virus may trigger an ME-like reaction as happened with SARS.

Coronavirus: can you get covid-19 twice or does it cause immunity


What kills the virus?

  • soap & water – dried by single use paper or warm air
  • alcohol based sprays on surfaces – leave 5 mins before wiping
  • hand sanitisers
  • chlorine
  • cooking removes any danger from food
  • bleach – disinfects, but pollutes- 5 tbsp (1/3 cup) of bleach per gallon of water

BBC: How long does the coronavirus last on surfaces?


When to get tested?

The UK is stepping up testing of frontline workers but still only wants to test those whose symptoms become serious due to shortage of tests – if experiencing severe symptoms ring 111 anywhere in Wales.  (Don’t press any numbers, just hold to be connected to NHS Wales, rather than NHS England)


How should it be treated?

Treatment for Coronavirus Disease (COVID-19)


How can I self-isolate?

Information on what it means to self-isolate in your home, or in a room within your home can be found on the UK Government website.  Increasingly local support schemes are being set up by concerned citizens to make it possible for people to self-isolate, even when they don’t have friends or family nearby, or access to online deliveries.

For info about how to get or give support, find your COVID-19 Facebook support group here Some Council & AVO websites list local sources of help and delivery services. Age Cymru and RVS provide support.

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WAMES is growing to meet the challenges of 2021

WAMES is growing to meet the challenges of 2021 – AGM News


Our AGM was held virtually on 27th March 2021.   It was a time to take stock of the disruptions of 2020 and discuss how to tackle the challenges of the future for people with ME.

The big ongoing discussion is how we can continue to highlight the desperate need for services as we wait for the publication of the revised NICE guidelines in the midst of a growing group of patients with the overlapping symptoms of long COVID. We will be sharing those activities and requesting your help over the next few months.


Our Vision:

Our Vision is for a Wales where adults and children with ME, CFS and PVFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.


Our Volunteers:

We are enjoying getting to know the growing number of volunteers who have been joining us over the last year. They will be critical in helping us to get ME taken more seriously in Wales. We need people with a wide range of skills and interests and are inviting more people to join us.  We work in Teams so we can share tasks and responsibilities, and inspire and encourage each other.

Volunteers are the lifeblood of  WAMES


Our Teams:

Trustees & Governance
we set the goals for WAMES and ensure we stay ‘on mission’ in line with charity law.

we work in the background and provide a framework for everything else to happen – maintaining records, memberships, mailing lists and general admin tasks.

Campaigns & Awareness
we find and respond to opportunities to improve services and spread the word about ME.

we respond to queries and provide support to individuals and groups through the helpline, email, social media etc.

we look for ways to communicate bilingually about ME and WAMES throughout Wales using the website, social media and ‘pre-Covid’ paper formats.

we recruit, induct and support volunteers to ensure everyone has the best possible experience with WAMES.

Finances & fundraising
we find ways to raise enough money to fund our activities and ensure we plan ahead for the future.

this team has been less active for a few years but aims to pick up the pace and improve the support and information we give to children and young people.

Elected officers 2021:

  • Chair: Jan Russell
  • Acting secretary: Tony Thompson
  • Treasurer: Simon Horsman

See future blogs to meet our volunteers!



For the 2nd year running in 2020 we spent more than we received! We received £510 and spent £969. Online shopping fundraising and donations from individuals make up the bulk of our income as people shop more from home, but we also saw a big drop in donations – 53%! We are working to develop a more sustainable way to fund our work as everybody experiences economic challenges.

The bulk of our expenditure in the past has been on travel and accommodation costs to enable us to campaign and raise awareness.  The pandemic has changed this. Instead, during 2021 we will need to invest in office hardware and software to ensure our growing team of volunteers can work effectively together virtually. We have enough money in the bank to make a start on this but will need to fundraise to complete the project.

Did you donate or fundraise by shopping online?
Thanks for the lifeline!


WAMES’ aim is to:

give a national voice to people with ME, CFS and PVFS in Wales, their carers and families, in order to improve services, access to services, awareness and support.

Help us…. Make a difference for ME in Wales!

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New study shows reduced ability to regulation of the cardiovascular system in patients with ME/CFS

Kavli Trust blog post on research into ME / CFS at Haukeland University: New study shows reduced ability to regulate the cardiovascular system in patients with ME / CFS, March 26, 2021     [Google translation of a Norwegian article]


The research group for ME / CFS at Haukeland University Hospital has published a new article on possible circulatory disorders in patients with ME/CFS. Examinations of patients’ blood vessels using ultrasound have been an important part of the study, which was carried out with support from the Kavli Foundation.

By the research group for ME / CFS at Haukeland University Hospital:

We performed examinations of the patients’ blood vessels as part of the Cyclophosphamide project on ME / CFS, which was carried out with support from the Kavli Foundation. The group has previously published results showing that 22 of the 40 participants in the study reported improvement in their ME disease after being treated with the cytotoxic drug cyclophosphamide in a controlled clinical trial.

Read morePromising results from experiments with cancer medicine

This study is based on a hypothesis that impaired ability to regulate blood circulation is a possible disease mechanism in ME / CFS. The ability of the blood vessels to fine-tune the blood flow so that the tissue receives enough oxygen and nutrition, especially during exertion, may be affected. This may contribute to the patients’ symptom picture.

A recognized method for studying the regulation of blood circulation is to examine the function of the patients’ endothelium. This cell layer, which covers the inside of the blood vessels, contributes to the expansion and contraction of the veins as needed. During the examination, the patients’ blood circulation in the right arm is limited by means of a blood pressure cuff for five minutes. When this blockage is removed, the blood vessels should normally compensate by dilating and releasing more blood to the arm…

…At re-examination after 12 months, 55% of the patients had experienced a symptom improvement after treatment with cyclophosphamide. Nevertheless, the results for endothelial function at group level were relatively unchanged, and we found no systematic relationship between change in symptoms and change in endothelial function. Nor could we demonstrate a direct relationship between patients’ endothelial function and their level of activity, the severity of the disease, or how long they had been ill.

This study therefore concludes that there is an association between ME / CFS and reduced endothelial function, but that we can not see any direct correlation between endothelial function and the individual patient’s symptom pressure. Regulation of blood circulation is a complex process, and we still have a lot to learn about circulatory disorders in ME / CFS and how they affect patients’ symptoms.

You can read the study in its entirety at Frontiers in Medicine:

Reduced endothelial function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome–results from open-label Cyclophosphamide intervention study, by Kari Sørland,  Miriam Kristine Sandvik,  Ingrid Gurvin Rekeland,  Lis Ribu,  Milada Cvancarova Småstuen,  Olav Mella and  Øystein Fluge in Front. Med., 22 March 2021 []

Read moreCollection page about ME research supported by the Kavli Foundation

Read the full translated article

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Dissecting the nature of Post-Exertional Malaise

Dissecting the nature of post-exertional malaise, by Megan Hartle, Lucinda Bateman  & Suzanne D Vernon in Fatigue: Biomedicine, Health & Behavior March 2021 [DOI: 10.1080/21641846.2021.1905415]


Research Abstract: 

Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients’ perspective.

A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, recovery, and prevention. Responses were re-coded into concise, representative topics. Chi-Square tests of independence were then used to test for differences and relationships between duration of ME/CFS illness (<4 years and >10 years), PEM onset and duration, and gender with PEM trigger, experience, recovery, and prevention.

Physical exertion was the most common trigger of PEM. The onset of PEM occurred within minutes after physical exertion compared to within hours after cognitive exertion (<0.05). ME/CFS patients sick for <4 years reported stress as a trigger significantly more often than those sick for >10 years (<0.001). ME/CFS patients sick for <4 years experienced more orthostatic symptoms during PEM than those sick for >10 years. ME/CFS patients sick for >10 years reported using medications to recover from PEM significantly more that those sick for <4 years (<0.01). Pacing and avoiding specific triggers were common approaches to prevent PEM.

There are differences in PEM triggers, experiences and recovery based on duration of illness. Asking about PEM is important for diagnosis and to understand how to manage PEM. Given that PEM occurs more quickly after physical versus cognitive exertion, these results should instigate research on the relationship of upright posture, hypoperfusion and PEM.

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APPG on ME meets 19 April 2021: impact of COVID-19 on people with ME/CFS

ME Association blog post: APPG on ME: Annual General Meeting and the impact of COVID-19 on people with ME/CFS, April 6 2021


The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 – 12:00.

In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community.

Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.

At this stage two guest speakers are confirmed who will share their expertise through short presentations and a Q&A discussion:

  • Dr David Strain, a Senior Clinical Lecturer at the University of Exeter Medical School and Honorary Consultant in medicine for the older adult who is heavily involved in the British Medical Association COVID response team.
  • Dr Nina Muirhead, a Buckinghamshire Healthcare NHS Trust Dermatologist who is actively working to deliver better education for healthcare professionals on the topic of ME.

Carol Monaghan MP, chair

MPs and Peers should RSVP to if they are hoping to attend this meeting so they can obtain the zoom link.

1.  How to contact your MP:

Members of the APPG on ME are being informed about this meeting

If you have an issue relating to COVID-19 and ME that you want to bring to the attention of your MP, or want to encourage your MP to attend this meeting, please contact your MP direct from this link.

2.  Background Information relating to the overlap between Long Covid and ME/CFS:

The overlap between ME/CFS and Long covid from a British Medical Association publication, including contributions from Dr David Strain, Dr Nina Muirhead, Dr Charles Shepherd and Dr Amy Small can be read here.

Article in Pharma Technology Focus

Dr David Strain talking on the BBC Horizon programme on Long Covid.

View official APPG web page –  lists officers & gives link to documents, parliamentary questions & debates


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Video: Living with ME/CFS: a paper stop-motion animation

An Existence Project: paper stop-motion animation about ME/CFS, 2 April 2021


An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

It was created by Inga Topolnicki using handmade watercolour paper props. She decided to make this film so there would be something accessible people could show their friends and family which would help them communicate the complex aspects of living with this chronic illness.

Illness forces you to rest in place so much that you begin to notice the little details of objects around you. The intricate aesthetic of this animation emerged from this increased awareness and an appreciation of the things around Inga’s home that became her whole world.

Chronic illness isolates us physically from others but also from society by a lack of understanding. Inga wants this film to help connect people again.

To learn more about ME/CFS (Australia):​
To help fund medical research into ME/CFS:

To see behind the scenes follow me on Instagram or Facebook:

#mecfs​       #stopmotion​      #chronicillness


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UK House of Commons Q&A – CFS/ME not in the clinically extremely vulnerable to COVID-19 category

UK House of Commons Written Questions and Answers: Coronavirus: Vaccination


Asked by Andrew Gwynne MP (Denton and Reddish in Greater Manchester) 19 March 2021

To ask the Secretary of State for Health and Social Care, for what reason people with chronic fatigue syndrome (CFS/ME) are being offered the covid-19 vaccine in some areas of the country and not in others.

Answered by Nadhim Zahawi MP (Parliamentary Under-Secretary of State for COVID-19 Vaccine Deployment) This answer is the replacement for a previous holding answer. 1 April 2021

To date, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has not been identified as a condition that makes an individual clinically extremely vulnerable to COVID-19 or would place an individual at increased clinical risk. It is likely that some people with CFS/ME are being offered vaccines because they are eligible through other means such as their age or they have other underlying health issues that would it put them at increased clinical risk.

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Food implications in central sensitization syndromes

Food implications in central sensitization syndromes, by Elena Aguilar-Aguilar, Helena Marcos-Pasero, Maria P Ikonomopoulou  and Viviana Loria-Kohen in J. Clin. Med. 2020, 9(12), 4106 [] (This article belongs to the Special Issue New Frontiers in the Diagnosis, Prediction, Prevention, and Management of Fibromyalgia)


Review abstract:

Fibromyalgia (FM), chronic fatigue syndrome (CFS) and multiple chemical sensitivity (MCS) are some of the central sensitization syndromes (CSSs). The complexity of their diagnosis, the high interindividual heterogeneity and the existence of multi-syndromic patients requires a multifaceted treatment.

The scientific literature is contradictory regarding the role of food in CSS, and evidence on the role of nutrition in MCS is particularly scarce. This review consists in gathering information about the current status of dietary recommendations (i.e., special dietary interventions, the role of additives, presence of micronutrient deficiencies, nutritional supplements and elimination of other nutrients and substances) and discussing the scientific evidence in depth to shed light on appropriate nutritional treatment managements for CSS patients. Current indications show that dietary modifications may vastly improve the patients’ quality of life at a low cost.

We suggest personalized treatment, taking into consideration the severity of the disease symptoms, quality of life, coexistence with other diseases, pharmacological treatment, changing clinical characteristics, nutritional status, energy requirements and food tolerances, among others, as the best ways to tailor specific dietary interventions. These approaches will partially overcome the lack of scientific and clinical research on MSC.

Patients should also be advised on the serious consequences of following dietary guidelines without a dietitian’s and clinician’s supervision.

‘It is striking that, despite the high prevalence of gastrointestinal and other diet-related problems and the impact nutritional treatment may have on these patients, none of these practical guides include dietary guidelines for the treatment of CSS patients’

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DecodeME study recruitment extended until Sep 2021

DecodeME recruitment update + April webinar


An update from the The DecodeME ME/CFS Study Team, 25 March 2021:

We’d like to update you on the recruitment start date for the DecodeME study, and tell you about an upcoming Q&A webinar on the steps involved in joining.

As you might expect, we’ve faced some delays due to the pandemic. We’ve also adjusted our pace on aspects of our preparation, to make sure that people with ME/CFS could fully contribute to this phase of the study. Their lived experience and expertise is at the heart of DecodeME and we’ve made many changes at their suggestion.

As a result, we’ll now launch recruitment by the end of September 2021 and not May, as we’d originally hoped.

This slight delay will help to ensure that the study runs smoothly once recruitment is under way. In the meantime, we’ve been busy organising ethical approval, creating a robust recruitment plan based on thousands of suggestions from people in the ME/CFS community, and developing and integrating the questionnaire.

We’re delighted that we already have over 23,600 people in the UK who want to take part in DecodeME when we launch. This is remarkable. Thank you.

The DecodeME DNA study aims to help us understand the disease and ultimately find treatments. Sign up to get involved.

Webinar 15 April – find out more!

We’d also like to invite you to our latest Management Group Q&A webinar, which focuses specifically on our recruitment process, so that people wanting to take part in DecodeME know what to expect. The webinar will run from 6:00–6:45pm on Thursday 15 April on Facebook Live. Please visit our Survey Monkey form to indicate that you’ll be attending the webinar and to put forward any questions you have about the recruitment process.

If you missed our last Management Group webinar, you can still view it. Meanwhile, if you have any further questions about the project, please access the regularly updated  FAQs on our website.

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Video: Diagnosed with ME, attending long COVID clinic

Long Covid: ‘It’s like someone has piled sandbags on top of me’

Reece caught coronavirus during the first wave of the pandemic in March 2020, but like many twenty-somethings, he wasn’t hospitalised overnight.

What he thought would be a mild illness became a protracted nightmare with his partner Alice becoming his carer.

Months after his initial infection, he was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) by his GP and referred to a specialist. His CFS/ME consultant later confirmed his CFS/ME symptoms were a form of ‘long Covid’ and referred him to a long Covid clinic [England].

Watch the BBC video                              March 30, 20212

Video Journalist: Lorna Acquah       Executive producer: Kate Forbes

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Deep phenotyping of ME/CFS in Japanese population

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population, by Toshimori Kitami, Sanae Fukuda, Tamotsu Kato, Kouzi Yamaguti, Yasuhito Nakatomi, Emi Yamano, Yosky Kataoka, Kei Mizuno, Yuuri Tsuboi, Yasushi Kogo, Harukazu Suzuki, Masayoshi Itoh, Masaki Suimye Morioka, Hideya Kawaji, Haruhiko Koseki, Jun Kikuchi, Yoshihide Hayashizaki, Hiroshi Ohno, Hirohiko Kuratsune & Yasuyoshi Watanabe in Scientific Reports volume 10, Article number: 19933 (2020)


Research abstract: 

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options.

To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis.

Here, we identified a set of 26 potential molecular markers that distinguished ME/CFS patients from healthy controls. Monocyte number, microbiome abundance, and lipoprotein profiles appeared to be the most informative markers. When we correlated these molecular changes to sleep and cognitive measurements of fatigue, we found that lipoprotein and microbiome profiles most closely correlated with sleep disruption while a different set of markers correlated with a cognitive parameter.

Sleep, lipoprotein, and microbiome changes occur early during the course of illness suggesting that these markers can be examined in a larger cohort for potential biomarker application. Our study points to a cluster of sleep-related molecular changes as a prominent feature of ME/CFS in our Japanese cohort.

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