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.

Videos

 

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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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Characterization of post–exertional malaise in patients with ME/CFS

Characterization of post–exertional malaise in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Barbara Stussman, Ashley Williams, Joseph Snow, Angelique Gavin, Remle Scott, Avindra Nath and Brian Walitt in Front. Neurol., 18 September 2020 [doi.org/10.3389/fneur.2020.01025]

 

Research abstract:

Background:

Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post–exertional malaise in patients with myalgic encephalomyelitis/ chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened.

Methods:

Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/ chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post–exertional malaise in daily life and participants’ retrospective memory of post–exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding.

Results:

A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants’ descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post–exertional malaise as interfering with their ability to lead a “normal” life.

Conclusion:

The experience of post–exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/ chronic fatigue syndrome patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options.

Excerpts from Results

Theme 1. PEM Was Triggered by Three Broad Categories of Events
We asked focus group participants to give examples of activities that caused them to have PEM. Notably, there were three broad categories of activities: physical activity, cognitive effort, and emotion precipitated, although there was overlap across the three groups. These categories included triggers such as household chores, social activities, errands outside of the home, physical exercise, cognitive activities, and emotional moments (Figure 1).

Theme 2. Effects of PEM Were Impacted by Baseline Pre-exertional Symptoms
When focus group participants were asked to describe PEM following exertion, many expressed the importance of understanding their “starting point” or “baseline.” Participants described the pliable nature of symptoms and how successive exertion can compound symptoms.

Theme 3. PEM Had a Wide Symptom Range With Few Differences Between Daily PEM and Following CPET, With Three Core Symptoms (Exhaustion, Cognitive Difficulties, and Neuromuscular Complaints)…

Theme 3a. Exhaustion
Participants explained that the exhaustion from PEM is different than what they experienced before having ME/CFS…

Theme 3b. Cognitive Difficulties
Cognitive difficulties were described as both difficulty thinking clearly/paying attention and difficulty speaking or finding words…

Theme 3c. Neuromuscular Complaints
Patients often complained of neuromuscular symptoms, which included muscle pain/aches and muscle weakness…

Theme 4. PEM Following CPET Was More Immediate and of Longer Duration Than PEM in Daily Life

Theme 5. The Manner of Onset of PEM Symptoms Varied
Separate from when PEM began (as shown in Figures 4, 5), we also determined whether participants perceived the onset of symptoms as sudden or gradual…

Theme 6. Complete Rest Was Necessary to Gain Any Relief in PEM Symptoms
When asked what could alleviate PEM symptoms, virtually every participant agreed that while in an episode of PEM, complete rest was absolutely necessary to reduce symptoms…

Theme 7. Planning and Moderation of Energy Expenditure Was Essential to Avoiding PEM
An interesting theme that emerged during focus group discussions centered around the steps taken by participants to manage activity levels in their daily lives to minimize the effects of PEM…

Theme 8. The Uncertainty and Debility of PEM Created Despair
…Participants talked at length about living with the unpredictability of PEM and having to adjust their lives to try to avoid severe PEM…

Conclusion
ME/CFS patients describe PEM as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Through in-depth focus group discussions, ME/CFS patients describe PEM as disruptive to living a self-described “normal” life, sometimes leading to hopelessness or despair. Given the extensive variability in PEM symptoms and timeframes for onset, peak, and recovery, further research identifying subtypes of PEM could lead to better targeted therapeutic options…

 

MECFSSkeptic blog post,  by Michiel Tack: Summary of the NIH’s exploration of post-exertional malaise

Press release: NIH study details self-reported experiences with post-exertional malaise in ME/CFS

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An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue

An analysis of 2‐day cardiopulmonary exercise testing to assess unexplained fatigue, by Jacob B Lindheimer, Thomas Alexander, Wei Qian, Jacquelyn C Klein‐Adams, Gudrun Lange, Benjamin H Natelson, Dane B Cook, Helene Z Hill, Michael J Falvo in Physiological Reports, Vol 8, Issue 17, Sep 2020 [doi.org/10.14814/phy2.14564]

 

Research abstract:

Two consecutive maximal cardiopulmonary exercise tests (CPETs) performed 24 hr apart (2‐day CPET protocol) are increasingly used to evaluate post‐exertional malaise (PEM) and related disability among individuals with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

This protocol may extend to other fatiguing illnesses with similar characteristics to ME/CFS; however, 2‐day CPET protocol reliability and minimum change required to be considered clinically meaningful (i.e., exceeding the standard error of the measure) are not well characterized.

To address this gap, we evaluated the 2‐day CPET protocol in Gulf War Illness (GWI) by quantifying repeatability of seven CPET parameters, establishing their thresholds of clinically significant change, and determining whether changes differed between veterans with GWI and controls. Excluding those not attaining peak effort criteria (n = 15), we calculated intraclass correlation coefficients (ICCs), the smallest real difference (SRD%), and repeated measures analysis of variance (RM‐ANOVA) at the ventilatory anaerobic threshold (VAT) and peak exercise in 15 veterans with GWI and eight controls.

ICC values at peak ranged from moderate to excellent for veterans with GWI (mean [range]; 0.84 [0.65 – 0.92]) and were reduced at the VAT (0.68 [0.37 – 0.78]). Across CPET variables, the SRD% at peak exercise for veterans with GWI (18.8 [8.8 – 28.8]) was generally lower than at the VAT (28.1 [9.5 – 34.8]). RM‐ANOVAs did not detect any significant group‐by‐time interactions (all p > .05).

The methods and findings reported here provide a framework for evaluating 2‐day CPET reliability, and reinforce the importance of carefully considering measurement error in the population of interest when interpreting findings.

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Online talk: ME/CFS and long Covid in children & young people with Dr Nigel Speight, 24 Sep 2020

This talk is especially relevant to families supporting young people and those not getting the support they need from schools and services. It will also be relevant to families supporting young people with long Covid symptoms.

With Dr Nigel Speight and the TYMES Trust charity.

Register here to participate to the event (via phone or online) and have the possibility to ask your questions directly to our guests. Or live stream on our Facebook page

Agenda

  • 5 min – Introduction
  • 30-45 min – Talk by Dr Nigel Speight: ‘ME in children and young people, an ideal approach compared with less than ideal approaches’
  • 5 min break – grab a cuppa
  • 10-15 min – TYMES Trust presentation
  • 20 min – Q&A (open to questions about long Covid symptoms in young people)

About Dr Nigel Speight

Dr Nigel Speight is the foremost expert on children and young people with ME/cfs. He is a semi-retired British doctor based in the North East of England who specialises in Paediatric ME/cfs and has been involved in fighting many child protection cases in which children with ME/cfs were at risk of being removed from their parents. He has acted as a voluntary paediatric medical advisor for many ME/cfs charities.

He features in the film Voices from the Shadows, a documentary about severe ME/cfs.

He has been outspoken about the risks to children with ME/cfs being misdiagnosed as having a psychiatric condition.

He is also sharing concerns about young people showing long Covid symptoms.

About the TYMES Trust charity

TYMES Trust is the only national ME charity dedicated to children and young people with ME and their families. They provide support for children, young people, parents and carers through their advice line and their professionals referral service for instance. Hear more about what they do and ask your questions during this talk.

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Mitochondria & immunity in CFS

Mitochondria and Immunity in Chronic Fatigue Syndrome, by G Anderson, Michael Maes in Prog Neuropsychopharmacol Biol Psychiatry 2020 May 26 [DOI:10.1016/j.pnpbp.2020.109976]

 

Review abstract:

It is widely accepted that the pathophysiology and treatment of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) could be considerably improved. The heterogeneity of ME/CFS and the confusion over its classification have undoubtedly contributed to this, although this would seem a consequence of the complexity of the array of ME/CFS presentations and high levels of diverse comorbidities.

This article reviews the biological underpinnings of ME/CFS presentations, including the interacting roles of the gut microbiome/permeability, endogenous opioidergic system, immune cell mitochondria, autonomic nervous system, microRNA-155, viral infection/re-awakening and leptin as well as melatonin and the circadian rhythm. This details not only relevant pathophysiological processes and treatment options, but also highlights future research directions.

Due to the complexity of interacting systems in ME/CFS pathophysiology, clarification as to its biological underpinnings is likely to considerably contribute to the understanding and treatment of other complex and poorly managed conditions, including fibromyalgia, depression, migraine, and dementia. The gut and immune cell mitochondria are proposed to be two important hubs that interact with the circadian rhythm in driving ME/CFS pathophysiology.

Read the full paper

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Postviral fatigue syndrome and creatine: a piece of the puzzle?

Postviral fatigue syndrome and creatine: a piece of the puzzle?, by Sergej M Ostojic in Nutritional Neuroscience pp. 1–2, 19 Aug 2020 [doi.org/10.1080/1028415X.2020.1809880]

 

Letter conclusion:

Creatine supplementation may recharge creatine stores (at least in the skeletal muscles) but this does not inevitably lead to better clinical features in all PFS (postviral fatigue syndrome) patients. It might help some patients to perform more physical work without negative consequences yet creatine is probably less effective to tackle general fatigue and/or nervous system-specific signs and symptoms of PFS. We are still short of information. Does supplemental creatine even  reach the brain in PFS, a major stumbling block for creatine delivery in clinical neurology.

The appropriate daily dose, dosing interval, and treatment duration, gender-specific pharmacokinetic and pharmacodynamic considerations, possible interactions with other disease-modifying agents, long-term side effects of creatine – all details missing for PFS patients.

Creatine supplementation, therefore, requires much more research credentials before being endorsed in PFS, with correcting creatine might be just a piece of solving the big jigsaw puzzle of metabolic turmoil in this baffling disease. Finally, to answer to a PFS patient’s question about creatine – play safe and wait for better evidence!

Read the full letter

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IACFS/ME 2020 virtual conference videos & reports

IACFS/ME: Did you miss our meeting? A recording of the meeting is now available
online! September 8, 2020

The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) hosted our first virtual research conference on August 21, 2020.

This half-day, Zoom-based meeting consisted of 5 moderated one-hour sessions followed by a question- and-answer discussion (via Chat), similar to our in-person conferences.
The conference focused on biomedical, public health, and behavioral aspects of ME/CFS and associated co-morbidities. Invited speakers were drawn from a selection of accepted oral presentations to our June conference that was canceled due to COVID-19 restrictions.

A portion of the meeting was devoted to COVID-19 and its relevance to ME/CFS
research and clinical care.

The cost of access will be $40 USD (31). The recording will be available to watch as many times as you like but access will expire Saturday, October 31.

Find out how to access the videos

View Conference Schedule

First IACFS/ME virtual research conference: A review and reflection, Fred Friedberg

THE 2020 IACFS-ME Conference Report from the ME Association

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Physios for ME podcast: a case study of post viral fatigue/ long Covid/ chronic Covid 19

 

Podcast: Physios for ME present a case study of Post Viral Fatigue/Long Covid/Chronic Covid 19.

A conversation about key aspects of pacing, avoiding PEM and how a skilled physiotherapist can be of help. [31 mins]

 

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NICE ME/CFS Guideline consultation will begin 10 Nov 2020

Level 1A, City Tower
Piccadilly Plaza
Manchester
M1 4BT

www.nice.org.uk

Tel: 0300 323 0140
Fax: 0845 003 7784

10/09/2020

Dear Colleague,

RE: NICE guideline on Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management.

The economic plan, review questions and search strategies for this NICE guideline have now been published on the project documents web page. This information is published for transparency, and to enable stakeholders to prepare for consultation on the draft guideline.

The consultation on the draft guideline and its supporting evidence is due to start on 10/11/2020. We will contact you again by email when the consultation starts.

If you have any further queries about this guideline, please contact CFS@nice.org.uk

 

Kind regards,

Katie Stafford

Senior Guideline Coordinator

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WAMES AGM 26th Sep 2020

Annual General Meeting of WAMES

 

The annual business meeting of the Welsh Association of ME & CFS Support will be held virtually to review past events and plan future activities. Covid-19 has changed our landscape and our future, so there will be lots to discuss!

This year we will be welcoming a new secretary and treasurer!

Please contact jan@wames.org.uk if you have anything to report to WAMES, or topics you wish us to discuss or more importantly, if you would like to join the team or volunteer in any way.  Let Jan know if you wish to attend.

 

When:

Saturday 26th September 2020 at  10.30am

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Factors affecting the characterization of Post-Exertional Malaise derived from patient input

Factors affecting the characterization of Post-Exertional Malaise derived from patient input by Carly S Holtzman, Claire Fisher, Shaun Bhatia, Leonard A Jason, in Journal of Health Disparities Research and Practice: Vol. 13 : Iss. 2 , Article 5.

Research abstract:

The National Institutes of Health/Center for Disease Control and Prevention (NIH/CDC) Common Data Elements (CDE) established a post-exertional malaise (PEM) workgroup with the task of describing PEM and recommending a standardized way of assessing it in patients with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).

As a stigmatized group, patients with ME/CFS are in need of instruments which can properly describe their symptomatic experiences, which can help reduce the disparity between illness seriousness and appropriate attention from healthcare.

The current study explored attitudes and preferences among 115 patients with ME/CFS who participated in the creation of a patient-driven instrument to measure PEM, the key symptom of the illness. Themes that emerged from the qualitative analyses of patient feedback focused on how their illness was experienced; their access to care; problems with physicians, researchers, and research methods; and expressions of gratitude for the collaborative process.

Domains that were most important to the patient community were identified in the effort to create a comprehensive measure of PEM. Benefits of community-based action research are discussed.

Four themes emerged from the Facebook discussions regarding PEM:
(1) illness experience;
(2) consequences;
(3) issues in the field;
(4) attitudes and interactions.
We explain the components of each theme and illustrate how patients’ Facebook comments were taken into consideration during the participatory process of creating a PEM questionnaire.

Study conclusion:

Overall, analyzing Facebook comments related to the experience of PEM has led to new
insights, which in turn allowed us to create a comprehensive, patient-driven questionnaire assessing PEM. Our goal was to identify the most important aspects of PEM, as well as how the patient community interacted with each other via Facebook.

This action-oriented process has led us to believe that it is crucial to collaborate with the patient community which can result in a more insightful, accurate and valid perspective of the illness.

This qualitative analysis using community based action research has made substantial contributions to the study of PEM, and ME/CFS in general. It is our hope to provide a model of how scientists and patients in this area can work together in the development of methods and instruments to better assess this illness.

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