Trial By Error: #MEAction’s Chronic Illness Survey; Patients’ Research Informs CDC’s Long-COVID Advice

By David Tuller, DrPH

New survey to assess links between chronic conditions

Jaime Seltzer, #MEAction’s Director of Scientific & Medical Outreach, has been pretty busy lately. This week, she appeared on a panel at the World Health Organization’s Long COVID webinar, alongside no less than the distinguished and always affable Professor Sir Simon Wessely. Seltzer has also just been named to the Independent Advisory Group for Cochrane’s new exercise therapy review. And she recently launched, in cooperation with Dr Mady Hornig, an epidemiologist at Columbia University, the Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease), an effort to examine possible links and overlaps between ME/CFS and long COVID, POTS, hEDS, and MCAS.

The survey is incorporating data relating to the key ME/CFS and ME case definitions and will be seeking respondents for a year in order to attain the necessary sample. Seltzer and Hornig recently answered questions about the survey, posted on the MEAction site. Here are some of their comments:

Why is a survey like this necessary?

Seltzer: Many of these chronic complex diseases are diagnosed via symptom picture, and many people with one chronic complex disease end up being diagnosed with several. The result of that is that we don’t fully understand the overlap between these different diseases and disorders. There are symptoms that are widely experienced by people with these diseases, but that don’t show up in any existing diagnostic criteria in use today. We hope not only to learn more about these diseases and maybe get some hints as to what causes them, but also to identify those aspects of the disease that are well understood by patients, but not as well understood by the clinicians who see them and by the researchers who want to learn more.

Hornig: It’s a critically understudied area that one would not expect to be understudied. At first glance, it’s a disorder that affects so many people, but has a hidden disability. It’s always been a very hard issue with ME, because the disease requires symptoms to have been present for 6 months or more, and it has often taken up to 10 years or more for people to actually get a diagnosis. From the beginning of my time in research, I’ve been a very strong proponent of the adage “Nothing about us without us.” We’ve learned so much from the patient experience.

What makes this survey unique?

Seltzer: There are a lot of basic things that we haven’t accomplished yet, and one of those things is correctly identifying the symptomatology. Many of these diseases share symptoms that clinicians consider very general, but there are actually some truly unique symptoms in each of these diseases that might help diagnoses happen faster and that might elucidate biological mechanisms. One of the other gaps that I see is that people of color, Black and brown people, have really not been characterized in this disease, and while their symptom experience may be identical, we don’t actually know. Studies show that Black people are just as likely to have ME as white people, but they’re far less likely to be diagnosed. We hope to be able to gather information that has never been gathered before in these populations.

Hornig: It’s a disorder worthy of medical attention, and that alone is gold for this field. It has been a very long and continued uphill slog to get this disorder to be recognized as a disease. I’m hopeful that this [survey] will continue the process. It’s been very encouraging to see so much more attention and a lot of joint efforts for advocacy, but we still need to educate doctors. We’re going to need to have a database that will help to show the evidence. There will still be a lot of work to do from there, but I think that this could be very useful.

You can hear and read the rest here.


Patient-led research informs new Long COVID guidelines

The US Centers for Disease Control and Prevention has released guidelines for health care workers on assessing and managing what is known as Long COVID. The online community Body Politic and the Patient-Led Research Collaborative for Long COVID played big roles in helping to make this happen–a fact that will likely be criticized by members of the biopsychosocial ideological brigades, who appear to believe that patients have invented the Long COVID phenomenon. But never mind–it’s more of their standard gas-lightning.

Much more enlightening is a twitter thread about the new guidelines by Hannah Davis, a member of the patient-led research team. Apparently, the change in presidential administrations provided an opening for greater collaboration with the agency on this issue, according to Davis, who outlines several major aspects in her thread.

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