Is There a Doctor in the House?!?
The curious case of the missing doctor. A call to action & resources to self-advocate.
For most of us, getting diagnosed with ME/CFS goes a little something like this:
Doc: I think you have ME/CFS.
Me: (Awkward silence waiting for more information.) Oh. Well, it’s great to have an answer! Let’s get cracking! Can you answer the following basic questions…?
Doc: Umm. I can’t answer even the most basic questions. I know nothing about ME/CFS. I actually don’t treat it. You’ll need a specialist.
Me: (Naively still feeling some hope.) Oh. Ok. Who can you refer me to?
Doc: Umm. I can’t refer you to anyone, I’m not familiar with any specialists. There’s nothing I can do for you.
At this point I’m looking around the room for the cameras, expecting to be on a hidden camera gameshow. This has to be some kind of comedy skit because none of it is making sense. You spend months or years feeling terribly ill and, in some cases, becoming increasingly disabled. Your quality of life is shit and your physical and cognitive functioning dwindling. Your doctor finally suggests something that makes sense but promptly walks out of the room, leaving you to figure it out on your own. You’re just sitting on that cold table in a dumb paper robe wondering what the hell to do next. The one person who is supposed to be able and willing to help you at this time is nowhere to be found. Imagine this happening with any other disease.
Frankly, this scenario might be a slight improvement, as many doctors will never even mention ME/CFS.
According to the Centers for Disease Control and Prevention (CDC):
Some of the reasons that people with ME/CFS have not been diagnosed include limited access to healthcare and a lack of education about ME/CFS among healthcare providers.
Most medical schools in the United States do not have ME/CFS as part of their physician training.
The illness is often misunderstood and might not be taken seriously by some healthcare providers.
More education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.
Seriously, is there a doctor in the house?
There are only a handful of ME/CFS specialists or centers throughout the entire US. Finding a primary care doctor who knows enough about the disease to even minimally guide you along is really difficult. (It’s not much better in the UK: Medical School Education on Myalgic Encephalomyelitis - PubMed (nih.gov))
My fear is that this is only repeating itself with long Covid. Early diagnosis can avoid disease progression, disability, loss of income and, ultimately, death (for some). Personally, when I was unknowingly experiencing mild ME/CFS, I continued to push myself—to work, travel and exercise. I pushed myself right into a moderate/severe state of ME and I am now disabled. It may have been avoidable, and I am most certainly not alone in this.
This post serves a dual purpose. It’s a call to action for all our healthy allies and a resource for patients to advocate for themselves when with a doctor.
Call To Action
This is an easy one! A light lift that could impact a lot of lives. The next time you’re at your doctor’s office bring a few copies of this #MEAction fact sheet. If you can and want, hand it directly to your doctor and let him/her know that you have a friend or loved one with ME/CFS and would like to see more medical resources available to them. If that’s too much, just leave it behind in the exam room! We really need our primary care doctors to have general knowledge about ME, but this would also be great to give to a neurologist, immunologist, endocrinologist or rheumatologist.
#MEAction 2018 Fact Sheet: Covers the basics of diagnosis, comorbidities, supporting labwork and management strategies.
Diagnosis-and-Management-of-Myalgic-Encephalomyelitis-MEAction.pdf
That’s it! Click, print and pass it on. And let us know here on the blog if you do & what your doctor said.
Advocating for Yourself with Doctors
First, it’s absolutely lousy that we, the patients, are in this position. The reasons are many and the background is complicated. All we can do is advocate for ourselves and navigate this as best we can. Below is a link provided by Solve ME with a short list of experts and centers in the US (if you have such a list for outside the US, please drop it in the comments). Some of these super-smarty-pants are very difficult to get into, with long wait lists. If none of these resources are nearby, determine if any offer telehealth. If you are fortunate enough to live near an expert, I would get on a waiting list right away.
Solve ME: ME/CFS Providers and Centers
Clinical-Research-and-Patient-Leaders.pdf (solvecfs.org)
Most of us will not have the good fortune to see one of these experts. We’re typically stuck in conditions far from ideal. Best case scenario: your primary care physician is totally up-to-speed with ME/CFS. Congratulations, you have won the lottery! Decent scenario: your doctor is familiar with it, not overly, but is open to working with you and receptive to information. You can work with this. Worst case scenario: your doctor clearly has no idea what ME is, or has a horrible misunderstanding of what it is, downplays your symptoms, suggests you are anxious or depressed (when you are not) and repeatedly recommends exercise. It’s time to look for a new doctor!
A receptive and compassionate doctor can be your partner in navigating this, so don’t feel hopeless if you can’t access an expert. Most doctors didn’t have ME/CFS in their medical school curriculum and it’s a wildly complex condition. If your doctor seems a bit lost on the subject or suggests that there’s nothing that can be done for it, you unfortunately need to intervene. It is a MYTH that there is absolutely nothing that can be done or tried for ME. In fact, narrowing down a few therapeutics that work for you can substantially increase your quality of life and functioning. The trick is figuring out what works for you because ME has an incredible spectrum of presentation and underlying pathology. Pacing, on the other hand, seems universally helpful and necessary.
Depending on where your doctor is on the spectrum of knowledge and where you are on the spectrum of diagnosis and treatment, here are a few resources that might be helpful.
The links below come from the U.S. ME/CFS Clinician Coalition, which is a group of US clinical disease experts who have collectively spent hundreds of years treating many thousands of ME/CFS patients. They have authored primers on clinical management, have served on CDC medical education initiatives, and are actively involved in ME/CFS research. U.S. ME/CFS Clinician Coalition
US Clinician Coalition 2020 Guide to Diagnosis and Treatment: a 6-page crash course in diagnosing ME/CFS.
MECFS Clinician Coalition Diagnosis and Treatment Handout V2.pdf - Google Drive
US Clinician Coalition 2021 Tiered Testing Strategy and Recommendations: a 17-page deep dive into the differential diagnosis.
MECFS Clinician Coalition Testing Recs V1.pdf - Google Drive
US Clinician Coalition 2012 Treatment Recommendations: a 9-page guide to treatment options and dosages depending upon your presentation.
MECFS Clinician Coalition Treatment Recs V1.pdf - Google Drive
Whereas the resources above provide specific types of information, this published paper nicely provides all the elements of diagnosis and treatment, in addition to other elements of the disease. Sometimes this paper is received very well by physicians because it’s been published by a recognizable entity, Mayo Clinic.
Consensus Recommendations published in Mayo Proceedings 2021: ME/CFS Essentials of Diagnosis and Management (the top link should be the PDF version of the direct link, provided below)
Another great resource for information and medical direction is the new Medical Education Resource Center at Bateman Horne Center, an Open Medicine Foundation supported initiative:
MERC - Open Medicine Foundation (omf.ngo)
For those of you outside the US, Solve ME has a webpage full of information for medical providers both in and out of the US (Note: you will also find materials specific to long Covid here).
Resources: For Medical Providers - Solve ME/CFS Initiative (solvecfs.org)
The ME Association is recommending a recent publication, Rethinking ME, as a resource for physicians within the UK.
Rethinking ME – A Report by the APPG | The ME Association
I know. It’s a lot.
But, if you have a doctor who is invested in you and compassionate about ME, all hope is NOT lost! Document your symptoms, remember that there is no magic pill and start building that relationship with your doctor—you are the expert at this moment and your experience is going to be a huge part of your doc’s learning curve. Buckle up!
This is an exceptionally thoughtful article that has relevance to people whose long COVID is misunderstood. Like people with MEcfs, they struggle with stigma based on misinformation that what ails them is all in their head