Navigating the medical system as a beginner with ME

I'm planning to go see a doctor for the first time where I actually bring up ME/CFS. Up till now, I've seen probably over 10 psychiatrists over the past 15 years to treat anxiety and depression, and tried dozens of medications, none of which helped, one of which ruined my life.

A couple years ago, I learned what ME/CFS is, and realized what I thought was depression was probably mostly this the whole time. I clearly have obvious, intense, delayed PEM, I'm just not sure if I also even had "classic" depression at all. Anxiety, definitely, though.

I thought it might be useful to have a thread for recommendations and best practices for patients, such as:

• How to seek out a doctor that is most likely to know what ME/CFS is, and is willing/able to run appropriate tests, refer to specialists and try medications.
• What patient history to bring to first appointments.

There's not really any known ME/CFS clinicians in my area, so currently I'm just trying to find a PCP that will be the best chance to help.

The only criteria I could think of when choosing a doctor so far is:

• Young - more likely to have learned more modern views of ME/CFS if they went to medical school more recently.
• Female - most ME patients are female, so they might feel more personally connected to the condition.
• Good reviews on Healthgrades and other websites - some doctors I've searched have multiple people saying the doctor doesn't seem to listen or care about their history, so these seem wise to avoid.
• Doctor of osteopathy (DO)? - barely know what this is, but they apparently get as much medical school as an MD, but also have a specialty in more "holistic" medicine? Might be more open to ME/CFS.

I've scheduled an appointment for next month with someone that fits the above criteria.

At a minimum, I'd like them to be open to doing a variety of lab tests. Treatment-wise, I'm not sure if I want to ask for anything, like LDN or anti-virals. So many things make my fatigue and anxiety worse, and I am almost always very close to the limit of the anxiety being unbearable, so I am terrified of trying pretty much anything and getting worse.

 

Oh yes USA, specifically Ohio.

 

I would ask people you know in your area which doctors are beloved by their patients (ie good bedside manner, dedication, not arrogant or dismissive).

Then, you could, and probably would need to bring in some articles referencing diagnosis, and treatments you wish to try.

My family practice doc, back in the late 90s was grateful for my educating him about FM (I don't have ME, but some symptom overlap at the mild level).

Edited to add: other essential qualities in a doctor for you to inquire about @forestglip might be:

patience, calm
and
a respectful attitude toward all his/her patients

 

For the US, I think the new mayo clinic proceedings would be good to have on you.

 

I'll see if there's any FB groups, thanks.

Ugh, yes, I have bad social anxiety, and I hate the thought of trying to push back against doctors talking like this.

I was talking to my former psychiatrist at one point, telling him one of the things I'm most excited to do when I have more energy was hiking. And he kept saying, well, just gradually increase the amount you walk now and you'll get there, and I kept saying, I've tried a million times, it doesn't get better, and it felt like he thought I was an idiot, like "how can he be this motivated to go hiking but thinks exercising more won't increase his energy levels?"

 

Yeah, I was thinking that, but I don't know how to present this long document at an appointment and not look like a know it all "WebMD patient". And, what, am I supposed to ask her to read it then and there? Hope she looks at it later?

 

I just don't socialize much and don't have a real life community I can get recommendations from.

 

Would you be open to virtual care?

 

Yes, but my insurance isn't great, so I don't know if there's a lot of options. I have combo Medicaid + Medicare. Though I might be losing the Medicaid soon as I've been building up my savings and might be over the resource limit. Thinking of buying private insurance if that happens.

 

Thanks! Yep, I fit the criteria to a tee. Though I didn't know there's a rule for "not lifelong". Aren't there people who have had ME/CFS all their life?

I do feel like I had mildish mental fatigue issues my whole life, but the intense physical fatigue and PEM came suddenly when I was 18, caused by marijuana/clozapine.

 

Your best bet is probably to try and find an as local as possible ME group or association, and ask them for recommendations.

And/or to ask a national group if there are any good virtual options reimbursed by your insurance.

 

Probably only two things, really.

The age of the doctor doesn't matter. I was diagnosed 25 years ago by someone who was well into in his 70s then, and in a very crabby mood at having been called in at short notice as a locum. I'd got nowhere at the previous half dozen consultations with a very pleasant doctor half his age.

And generally speaking, doctors prefer to be the ones doing the diagnosing.

The last time I did something like this, I went in with this sort of approach: I've realised my symptoms are similar to something, but it's hard for me to judge whether it's a really a good match or I'm reading too much into it. But it could be important, so I came to ask if I could discuss it with you.

I didn't know the doctor, but I wanted to get off on the right foot in case it turned out I felt comfortable with them and wanted to see them in future. Anyway, it seemed to strike an acceptable balance.

I've no experience of the US medical system, though. I hope it goes well for you.

 

I am also in Ohio/NE and although I have not seen Dr. Wilson personally his office might be a good resource for local referral. https://my.clevelandclinic.org/staff/17075-robert-wilson#reviews

 

A doctor of osteopathy is a doctor who is also happy to be a quack. Nobody with any ability would choose to qualify as an osteopathic physician. I have no idea why this system exists in the USA but it seems to be an admission that medicine is business rather than a public service and quackery is good business.

Osteopathy is quackery so why go and learn at a school of osteopathy, even if you have to pass the med exams?

What I think is so confusing for people with ME/CFS is that there are doctors who sound very biomedical and seem very supportive and hand out loads of interesting diagnoses like MCAS and EDS and there are psychiatrists who say it is biopsychosocial and hand out other diagnoses and really they are the same people just with a different script. The biopsychosocial people are some of the main pushers of some of the dubious medical diagnoses.

What you really need isa doctor who is prepared to say 'I don't know' - 'but I have heard this before and this is what people seem to find helpful'.

 

Is this someone known to treat ME patients? I see one long COVID in the reviews. [Edit: 2 long covid mentions.]

Those reviews seem suspiciously good. 209 reviews and all 5 stars. They make him sound like one of the best humans to exist. [Edit: there are a couple negative ones.]

Thanks. I still have a month before the appointment, maybe I'll find an MD to see instead.

 

I will note that the current doctor treating me is a “quack” and claims to do all sorts of crazy things like be able to tell what kind of allergies I have by putting crystals on my stomach, but he is also the only doctor who takes ME seriously in my area.

Without him I would be forced into hospital with undiagnosed very severe ME. He diagnosed me, mostly understands severity? and pretty much agrees to prescribe anything reasonable I ask (LDN, Beta Blockers etc.).

You will probably never be able to find a “perfect doctor” and if you are the kind to be on this forum, you probably know more about ME than any doctor you will have access too except a specialist costing a fortune, so at the end of the day, its about finding someone who will take you seriously and out of whom you can get what you need.

 

He has a very good local reputation as someone who has an extraordinary grasp of the field/issues patients are struggling with. I’ve considered seeing him myself (long waiting list) but am taking a palliative path currently. This link can give you an idea of his thoughts and why his office might be a good resource.

https://www.youtube.com/watch?v=tsYE6lT-52g