Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers

After attending a “Navigating Clinical Uncertainty” webinar presented by the Bateman Horne Center as part of their new “Coffee with a Clinician” monthly webinar series, I’d like to share highlights, actionable tips, and reflections with you. They're especially relevant to family caregivers of loved ones with debilitating complex illnesses.

The webinar, aimed at patients, caregivers, and clinicians, discussed topics from Chapter 1 of Bateman Horne’s Clinical Care Guide for Managing ME/CFS, Long COVID, & IACCs:

• Challenges faced by both patients and clinicians dealing with illnesses that are complex and don’t neatly map to established protocols

• Embracing a collaborative care model in which the patient (and often family caregiver) and providers share knowledge and decision-making

• Taking a “trial and pivot” approach: trying an intervention, assessing, and adjusting when needed
  

Webinar speakers were:

• Zeest Khan, MD, an anesthesiologist, long COVID patient, and the creator of the “Long Covid, MD” podcast. She authored the first chapter of the Clinical Care Guide.

• Melanie Hoppers, MD, a physician board-certified in internal medicine and pediatrics. After her daughter became ill with ME/CFS in 2015, she discovered Bateman Horne and joined their clinical team in 2024.

• Jennifer Bell, FNP-C, an Advanced Practice Registered Nurse and a certified Family Nurse Practitioner at Bateman Horne since 2021.
  

Challenges we face:

Both patients (and their family caregivers) and clinicians face significant obstacles in managing these conditions, according to the Clinical Care Guide:

• Patients experience long wait times, limited treatment options, and medical skepticism/gaslighting. Many arrive at appointments exhausted, cognitively impaired, and wary of being dismissed.

• Clinicians must contend with evolving recommendations, limited patient visit times, the absence of definitive biomarkers, and the frustration of seeing patients who do not improve despite best efforts. Traditional diagnostic models often fail when dealing with multisystem dysfunction and fluctuating symptoms.
  

Practical Strategies for Caregivers:

Here are some caregiver-friendly strategies and tips from the discussion, taken from the clinicians’ comments, community members’ comments in the Zoom chat, and my own caregiving experiences: Ways to prepare for medical appointments:

• A current medications list is essential. Create a list of all the patient’s medications and why they’re on each. Always have a current medications list and carry it with you. Keep an up-to-date copy on your phone. It can be useful to have a printed list in your “go bag” when you go to a medical appointment and/or need to go to urgent care or an emergency room. Bateman Horne has easy-to-fill medication cards as part of the Crash Survival Guidebook.
  

• To work with the American healthcare system to get what you need, you may need to book several short appointments with different clinicians to address all of your symptoms. In the mainstream American healthcare system, most standard medical appointments are only 15 minutes each and can address only 1-2 issues per appointment, says Dr. Zeest Khan. As a patient, she has had to book a lot of short visits to address her Long COVID symptoms. Another tip to work within the American insurance system: You can use the annual wellness visit for 1 hour to establish medical history, symptoms, and share the Clinical Care guide, especially with medical professionals who aren’t as knowledgeable about ME/CFS, Long COVID, and related infection-associated chronic illnesses.
  

• Prioritize the top 1-3 most troubling concerns before each visit. This will make your visit worthwhile. Take notes now on what tends to help or worsen the symptoms – in advance of the appointment – because it can be hard to remember details. 

• Partner with your loved one ahead of the appointment. Ask your loved one: What is bothering you most now, and what do you need help with managing? Help them prioritize. Prepare ahead of time so that you have a game plan for the appointment: - This is what is bothering me - This is what makes it worse - This is what makes it better 

  - Ask: Do you have any ideas? 

  - Then you brainstorm and problem-solve together. Remember that in addition to the patient and clinician, we caregivers can be helpful collaborators in our loved one’s medical care. Before each medical appointment for my loved one, I write in a notebook the top health priorities we want to discuss and any questions we may have. This could include new treatments or research studies I’ve read about.

• Be specific in describing the symptoms. For example, what does fatigue feel like for your loved one? There are different kinds. Be specific. “Some patients describe their fatigue as there’s too much gravity in the room, which is very different than being tired after a long day of work, or depression fatigue,” says Jennifer Bell, a family nurse practitioner. “Be specific. What do you mean by brain fog, fatigue, or lightheadedness? For example, light-headedness might mean you can’t take a shower.” 
  

• Make sure your loved one rests before the appointment and is comfortable during the appointment. Dr. Melanie Hoppers shared some tips as a mother and caregiver of her daughter with ME/CFS: Make appointments at times that work for their body (e.g., afternoon appointments if mornings are tough). If your loved one needs to lie down during the appointment, they should do so. Help them be comfortable.
  

• Feel free to video/audio record the visit on your phone. That way, you don’t need to take so many notes or worry about forgetting things that are being discussed. You can use your smart phone’s features to create a live transcription or you can use a transcription app after recording the video/audio.
  

• Attend appointments with your loved one so you can be a medical advocate. In addition to providing emotional support through just your physical presence, you can help your loved one remember to bring up the top 1-3 symptoms bothering them. Acting as their medical advocate, you can take notes and ask follow-up questions that they may not think to ask at the time because they’re too exhausted or have brain fog.
  

How to approach medical treatment for complex illnesses with clinicians in a collaborative way:

• Use the “trial and pivot” mindset – Many treatments are experiments because there isn’t a “magic bullet” cure yet. (Keep in mind that most treatments are addressing symptoms at this point, until more research is done.)  So we need to try different treatments, monitor, and then adapt. “As clinicians, we need to expand our approach. The solution is not always in a prescription order form. We need to try different things…. It’s trial and pivot,“ says Dr. Zeest Khan.
  

• Set realistic goals and clear expectations – Prioritize symptom relief, quality of life, and small functional steps (like tolerating a short walk). Patients and providers must establish realistic treatment goals, acknowledge that progress may be slow, and agree on boundaries. If you try something new — a medication, therapy, or routine — it’s helpful to set a timeframe to assess whether to continue, change, or stop it. For example, ask the clinician how long it should take for you to feel the positive effects of a new medication or how long you should tolerate negative side effects.  
  

“If you’re using a logical approach to care, let’s identify what’s troubling you most. Let’s also assess the cost of treatments, including side effects, not just money,” says Dr. Zeest Khan. “Clinicians can’t be pressured into prescribing treatments they’re not comfortable with or not really established. Patients can’t be demonized for saying I’m not willing to try this because the cost is too high.  We need this approach to address a complex, interconnected pathology.”

• Be patient with the process – Progress is rarely linear. View setbacks not as failures, but as new information to guide the next step. Sometimes it can be a few steps backwards. Because it can be both physically and emotionally draining to try new treatments, that’s when I think it’s good to ask your loved one, “Do you want to keep trying some new treatments or do you want to take a break for now?”  Sometimes you need to rest and regroup.
  

Some participants in the Zoom chat expressed frustration that they need to project manage their medical care and work within the limitations of the current healthcare system. Dr. Zeest Khan addressed this by saying, “I know it feels like it’s a lot of project management. This is a tremendous project you are on. Stay hopeful. The way to reframe this approach is that you are doing what you can, while answers are being elucidated by science. This is a very challenging time in every arena. For us struggling with illness, it’s important to collaborate with medical professionals, and also to collaborate with someone to do the brainstorming – it’s a cognitive drain.” “Focus on what you CAN do, instead of what’s not available yet. There is grief in that. We’re not dismissing that,” she said. “What I recommend to clinicians and patients is not to allow the grief and overwhelm from having us take effective steps. I’m sorry we are all here. There is hope. I know it’s hard.”

As care partners to our loved ones, here are some helpful caregiver mindsets and reflections I’d like to share: 

• Have a co-expert mindset. You bring lived experience and observations of your loved one. Clinicians bring a medical perspective. We’re all essential on a collaborative team with our loved ones.
  

• We can help co-design the care path. By communicating clearly, asking good questions, and keeping track of patterns, caregivers can help shape thoughtful, collaborative care for our loved ones.
  

• Pauses and pivots are OK. If something isn’t working, changing course isn’t giving up — it’s learning. When something doesn’t go as hoped, treat it like a clue rather than a mistake. Learn and pivot.
  

• Accept that uncertainty is part of the journey, it’s not a sign of defeat. Accepting that doctors don’t always have clear answers can ease the pressure we put on ourselves and our loved ones.
  

• Focus on what you can control. You may not control the illness, but you can influence the environment, pacing, nutrition, rest, communication, and boundaries.
  

• We need community support around the emotional load. Caregivers often carry frustration, guilt, despair, doubt, confusion, and fear. These are natural emotions when dealing with such debilitating complex illnesses. Be gentle with yourself and give yourself some self-compassion.   Talking with peers, a therapist, or a coach helps prevent isolation and can reduce stress when uncertainty looms. You don’t have to carry this alone. To find a therapist who specializes in chronic illness, you can check out psychologytoday.com, which has therapists listed by location and specialty. And you can find chronic illness caregiver support groups here.