FAQ

You can take the survey if:

  • You are 18 or older
    AND
  • You have a diagnosis from your medical provider of ME or ME/CFS, POTS, hEDS and/or MCAS
    OR
    You have a suspected diagnosis of Long COVID
    OR
    You are generally healthy, with no chronic diseases or conditions 

People from any country can take the survey.

See ‘Who qualifies as having a chronic complex disease? Are patients self-identified?’ for more.

Click on the sign-up box on the landing page (or in quiet sign-up, if you have sensory sensitivities) and enter your email address and choose a username. Take note of this username and make sure it’s an email address you can access.

By default, emails sent through Qualtrics come from the [email protected] email address. Add [email protected] to your contacts so the email does not end up in your spam folder.

You should receive an invitation to take section one of the survey. When a new survey section opens, you should receive a personalized invite in your email, and a new invite each month. There are six survey sections in total.

NOTE: this invitation CANNOT work for others.  It is personalized to you.  To encourage others to take the survey, send them to www.meaction.net/epi, rather than forwarding your invitation to them.

Once you have completed section 1 of the survey, you should receive all subsequent sections of the survey as direct invites to your email address.  You can’t receive invitations to subsequent surveys without completing prior sections.

Some people may not have finished the survey, or might have been ruled out as healthy controls because they did not meet our inclusion benchmarks.  If you received a message saying you did not meet inclusion criteria, you should not receive an invitation to take survey section 2.  We hope you will continue to help spread the word about the survey, however!

The survey questions are broken up into six sections.  Sections will be released a month apart, and the survey will stay open for a year in total.  Each section should take 15-20 minutes.

If you need to stop in the middle of a section, you can keep the tab with the survey open and return to it later.  If you close the window/tab, your answers in a half-completed section may not be saved.  

IRB approval/exemption means that a board of experts has judged a study ethical and believes the data is well-protected.  This study was determined to be exempt by Western IRB. 

Your data will be on Qualtrics, which is a secure platform.  Only people with IRB training/certification working on this study will have access to data that could personally identify you.  

You have the option to participate in future projects, which may mean your anonymized data could be shared with other researchers.  You are able to opt out of this, however.

The survey will be available for approximately one year. We will release sections one at a time, a month apart. 

Your survey data will not be used unless it is all completed by the end of the study.

Our goal is to get the broadest possible spread of responders. Here are some ways in which we make the survey as accessible as possible:

  • You may enlist the help of a close friend or family member to read the survey aloud to you and record your answers.
  • You may ask for a printed copy of the survey sections when they become available if screentime is challenging.  
  • Remember that you do not have to take the whole survey in one sitting: keep your tab open and return when you are ready.

A small scale report will be published soon after the survey closes. Subsequent peer-reviewed journal articles will take more time, and some of these timelines are not entirely within our control.

ME, POTS, hEDS, MCAS, and long COVID are all chronic complex diseases.  This means that they involve multiple body systems with multiple morbidities. Chronic complex diseases have complicated self-management requirements and require specialized, multidisciplinary care.

Multiple studies have shown that many people with ME also have POTS, hEDS and/or MCAS.  75-80% of patients with ME/CFS report a diagnosis of two chronic complex diseases or more.  That means it makes sense to consider these diseases together, and learn to better distinguish them.

Epidemiology studies how often diseases occur in different groups of people and why. Epidemiological information is used to plan and evaluate strategies to prevent illness and to guide disease management in people who are already ill.

The epidemiology of a disease is as fundamental as clinical findings or pathology; epidemiological findings can often provide clues to the etiology (causes and origins) of a disease.  

Patient and public involvement is a very important part of research projects that aim to engage with and inquire deeply into the patient experience. In order to better understand the disease presentation and course, it is important to directly engage with patients.  Over the course of our investigations, we encountered several symptoms common in ME/CFS and other chronic complex diseases that were not part of any existing set of diagnostic criteria.

Patient-centered data in rare and rarely diagnosed diseases is different from that gathered by researchers or clinicians only. A recent paper co-authored by our partners in the Human Phenotype Ontology (HPO) Project demonstrates that patient-reported versus clinician-reported symptoms differ significantly in long COVID, for example — and that patient-reported data is richer, more detailed, and more complete.  This supports a wealth of evidence for the value of patient participation in research at every stage.

While we recognize there are significant barriers to diagnosis, in order to accurately characterize ME, ME/CFS, POTS, hEDS, and MCAS, we require that people with chronic complex disease have been diagnosed by a medical provider. This is self-reported, for most.  

The exception is Long COVID, which is still very rarely diagnosed by clinicians as of 5/2021.  We ask that Long COVID responders have had a positive PCR or antibody test for COVID-19 or met the CDC criteria for suspected COVID-19 infection, and have continued to experience symptoms for 3 months or longer.  Your doctor does not need to have told you that you have a diagnosis of Long COVID (or “PASC”).

To ensure we have a core of participants with diagnoses that have been validated/ confirmed, we’ve engaged in partnerships with several specialists in complex chronic disease, including Dr. Lucinda Bateman, Dr. Hector Bonilla, and Dr. Susan Levine.  If you have seen/are seeing any of these clinicians, you will have the opportunity to send them a special link to validate/verify your diagnosis or diagnoses.  These clinicians are also helping us to recruit for this study to ensure a core of participants have validated diagnoses.

You can take the survey without your clinician validating your diagnosis with us, OR you can recruit your own medical provider to validate your diagnosis! If you recruit your own doctor, it does not have to be the person who originally diagnosed you. See the Clinician’s Landing Page for more.

It is essential to pair “phenotype” — how the disease presents — to “genotype” — the genetics that cause or predispose a person to a particular disease.  This especially of interest in chronic complex diseases where heritability is unknown, and potentially complex.

Determining the connections between different symptoms with this degree of richness and variety may also give us some hints as to what causes these diseases.  For example, if one group seemed to have multiple symptoms that have common cause in different body systems, we might suspect this mechanism could play a role in disease.  These kinds of searches are not just based in machine learning but require a keen eye and an understanding of the diseases themselves.

We’re proud to be partnering with Jackson Labs’ Peter Robinson to parse this data.

Many people with complex chronic disease have a preferred set of diagnostic criteria that they support over others.  In the case of ME/CFS, we have incorporated symptoms from Ramsay (1988), Fukuda (1993), CCC (2003), ICC (2011) and IOM/NAM (2015).  To assess for hypermobility, we have used the images associated with the Beighton score; these have been validated as accurate as a clinical diagnosis.  While POTS and MCAS are diagnosed via lab results and in-person testing, we have incorporated the symptoms recommended in the Molderings Criteria for MCAS (and in papers it cites) and collected patient-reported POTS symptoms from patient-led organizations.  

With no set of criteria or laboratory tests for Long COVID, we have incorporated symptoms from multiple papers and meta-analyses, including the Long COVID 7 months study from Patient Led Research.  Long COVID is still very rarely diagnosed by clinicians as of 5/2021.  We ask that Long COVID responders have had a positive PCR or antibody test for COVID-19 or met the CDC criteria for suspected COVID-19 infection, and have continued to experience symptoms for at least 3 months.  Your doctor does not need to have told you that you have a diagnosis of Long COVID or “PASC”.

Although fibromyalgia, ADHD, and CCI are not target populations, we have particular interest in some common symptoms in these diseases; therefore, we also incorporated the Brief Pain Inventory as per the 2010 fibromyalgia criteria; the Sensory Gating Short-Form to better understand cognitive/sensory-induced PEM; and questions from Dr. Bolognese’s intake form for spinostructural issues such as CCI.  

For all of our target populations, we have interviewed people with lived experience and collected data from patient forums and online discussions to gather symptoms not represented in any set of criteria.  This makes the data we will gather truly unique.

A validated measure is one that has been tested many times, and may have been compared to biological data and found to correlate.  We used some of the measures recommended in the NINDS Common Data Elements Project to determine which would be useful in complex chronic diseases.

When a patient has a symptom with many dimensions — pain, for example — simply asking them to rate its severity and frequency likely isn’t enough.  For that reason, we incorporated validated measures for pain, sensory sensitivity, fatigue, sleep, and overall well-being, such as the SF-36. Some of these are also used to tell us right away if a “healthy control” is healthy, and to automatically eliminate them from the study if they are not.

Everyone can:

Researchers

If you research one of the chronic complex diseases here, including ME/CFS, long COVID, POTS, hEDS, or MCAS and would like to collaborate, we would love to hear from you!  Reach out to [email protected] with the subject line Symptom Cluster Characterization Collaboration: current cohorts.

We would love to include additional cohorts.  If you research other complex chronic diseases, reach out to us at [email protected] to talk about adding your patient cohort and sharing data.  Please use the subject heading, Symptom Cluster Characterization Collaboration: new cohorts.

Medical providers

If you would like to recommend your patients with long COVID, ME/CFS, hEDS, POTS, MCAS, and/or healthy controls take this survey, you can sign up for a quick conversation with our study coordinator and also be able to validate your patients’ diagnoses:

Clinician’s Landing Page

Advocacy organizations

If you would like to help us promote the survey, you can find a social media kit here:

Social Media Kit

If you would like to make participation an advocacy action or become a partner on this project, please reach out to [email protected]

Yes, they can.  We strongly urge patients to reach out to their clinicians for this purpose.  

When you take the first section of the survey, you’ll receive an email that will include sample text to your medical provider to urge them to join in the fight for better characterization of chronic complex disease, along with a personalized link to validate your diagnosis/diagnoses!  You can send them a link to the Clinician’s Landing Page right now so that they can register for login credentials even before you finish the first section of the survey.

Note that no clinician is required to participate. Please be respectful of your clinician’s response.

We would love to add additional populations!  Unfortunately, we have only enough funding to cover a statistically significant number of participants from each category we have already included.  With more funding, we may cover additional populations in the future.

Other populations we would love to include in future include, but are not limited to: 

  • ADHD
  • ASD
  • CCI (Cranio-cervical instability)
  • Chronic Lyme
  • Fibromyalgia
  • Gulf War Illness
  • Multiple Chemical Sensitivities

Note that there is a strong possibility that we may learn more about some of these populations due to the way these diagnoses overlap in populations already included in the study.

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