Navigating the medical system as a beginner with ME

[forestglip]

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.

Thanks, he does seem fairly knowledgeable. Unfortunately, I'm in central Ohio, and there's the waitlist, and my insurance probably wouldn't cover it. But maybe I'll see if his office has any recommendations.

 

[wingate]

In my non-statistically rigorous sample of doctors, I've had awful young women, validating older men, and many other combinations in between so for me, the criteria of being young and female is not necessarily a ticket to understanding.

I would second the advice to look on local FB groups - I have had some luck going that route. You might also reach out to The Massachusetts ME/CFS Association. They provide doctor recommendations, although most of their referrals are in Massachusetts and New England. It's possible they have a lead on someone closer to you. There is also an MEAction doctor database, but I'm not sure how thorough it is.

I have wanted different things from doctors over the years for ME (thorough testing, a diagnosis, documentation, validation, humility (able to say "I don't know", willingness to try and treat symptoms, etc.) In my experience, I've needed different doctors to address these different needs as I haven't found one that can cover all of them. It's been trial and error finding out who they are though, unfortunately.

 

[adrienne]

So I can’t comment on most aspects as I’m in the UK. I think age/sex aren’t particularly useful criteria one of the useless General Practitioners I saw when trying to get a diagnosis was young and female. It’s more about the individual. If there’s a group for PWME on Facebook or social media in Ohio it would be worth seeing if anyone can recommend someone. Usually when you see these requests in the UK people don’t get much luck though. I think you might end up having to ask, maybe the person who does the admin for the Dr if they have other patients with ME/CFS and what type of approach they take.

A lot of people have difficulty finding a Dr who will diagnose unfortunately, I think if you’ve been acutely ill it’s a lot less difficult for them to get their head round the idea of post viral illness but gradual onset is a challenge. In the UK I saw 2 different Drs who pushed back on me first one I asked if my symptoms were Fibromyalgia and second I asked CFS. I had to change to a different group of Drs and in that group the first one I saw would actually write CFS as the diagnosis. They were all in their 30s.

Sorry if this seems negative but one of the reasons I didn’t realise that I had ME was that I had a diagnosis of minor depression and ill health was attributed to that you might find Drs want to focus on anxiety rather than MECFS

Two groups to try on FB - Dysautonomia International - Ohio Support Group & ME-ICC & other marginalized diseases (public).

 

[forestglip]

Two groups to try on FB - Dysautonomia International - Ohio Support Group & ME-ICC & other marginalized diseases (public).

Thank you! I tried searching for groups that included "Ohio" but there were way too many to search through that were not relevant.

 

[adrienne]

Thank you! I tried searching for groups that included "Ohio" but there were way too many to search through that were not relevant.

You’re so welcome, I hope it helps! Not sure if you’re familiar with the Bateman Horne Center https://batemanhornecenter.org/education/top-resources/
but they have much useful information on navigating these issues.

edit to add ohio provider list:

 

[forestglip]

You might also reach out to The Massachusetts ME/CFS Association. They provide doctor recommendations, although most of their referrals are in Massachusetts and New England. It's possible they have a lead on someone closer to you.

I sent them an email and got this response:

Thank you for reaching out to Massachusetts ME/CFS and FM Association. I understand you are looking to see a doctor about your ME/CFS for the first time.


I looked through various ME/CFS physician databases for recommended doctors in Ohio. One name popped up:

Hal S. Blatman, MD, [phone number removed just in case]. He's an integrative medicine specialist in Cincinnati. He has a focus on pain management. You can read about his approach to ME/CFS here: https://blatmanhealthandwellness.com/areas-of-practice/chronic-fatigue. He does not take insurance himself, but is willing to file a claim with the patient's insurance company in case the company is willing to reimburse the patient for some or (more rarely) all of the cost.
Most of the major ME/CFS physician databases (including our own, plus https://www.meaction.net/resources/find-your-doctor, https://ammes.org/physician-and-clinic-database, and https://cfsknowledgecenter.com/local-resources) don't list any doctors in Ohio. So the next step is to look at other resources.
First, I recommend taking a look at this Solve M.E. page for some general thoughts on finding a doctor: https://solvecfs.org/wp-content/uploads/2022/05/Finding-a-Doctor.pdf.
Second, ME Action lists a ME/CFS support group for Ohio here: https://www.facebook.com/groups/160832157934747. I don't have a FB account myself, so I can't corroborate it, but it might be worth taking a look at it and seeing what doctors local people recommend.

Third, click here for our list of National ME/CFS Centers. Important experts include Dr. Lucinda Bateman, Dr. Nancy Klimas, Dr. Benjamin Natelson, all of whom are highly recommended. You'd need to call them to see what their current insurance and telehealth policies are. An internet search suggests that Bateman charges annual fees outside of insurance; Klimas does not take insurance; Dr. Natelson may take Medicare.


Other resources:
As you may have read, self-care is very important with ME/CFS. Bruce Campbell, PhD, has a website with articles on self-help / symptom management for people with ME/CFS. The core of managing PEM (post-exertional malaise) is learning how to pace ourselves and not overdo it, as overdoing it can make things worse in the long term. Many of our members have found Bruce's articles and his online self-help course useful. The gateway to the articles and the course is here: http://cfsselfhelp.org/library/self-help-cfids-and-fibromyalgia.
I'm attaching the 2011 Myalgic Encephalomyelitis International Consensus Criteria, because we believe it's the most detailed and accurate description of the disease. The symptoms, which start on page 3, may sound very familiar to you.
I'm also attaching an open letter from healthcare providers who understand ME/CFS to other providers who may be less familiar with the disease. It's called "Caring for People with Severe ME/CFS." It can be a useful tool in helping doctors (your PCP, for example) understand what the disease is and what approaches are likely to be helpful. The approaches they list are likely to be useful whether the disease is mild, moderate, or severe.

Finally, If you have any feedback (good, bad, or neutral) on the doctors you encounter during your health journey, we would love to hear it. We rely on patient feedback for our referrals, and your perspective may help many people in the same situation. For example, you could be the first person to recommend an Ohio physician to us. If you'd like to submit any comments, please see: https://www.massmecfs.org/provider-recommendation-form. Feedback can be anonymous. Thank you!

 

[NelliePledge]

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.

I think it means from birth I’m not aware of people having it from birth but I was one of the older onset around menopause group and not up to speed with paediatric aspects.

 

[forestglip]

Just had my appointment with the DO. It went well. I had been mentally preparing for worst case scenarios of the doctor trying to convince me I just have depression and me trying to convince her it's not.

But she sees and understands my viewpoint. That I'm not expecting any treatments to do much. That I want to test as much as possible. And that I want it to be on record that I'm seeing a doctor about ME/CFS in case treatments ever do come out.

Might have helped that I brought a list of the >15 psych meds I remember taking over the past 15 years that had zero benefit.

I'm not sure she's super familiar with ME/CFS, but she's aware of it, with knowledge that it's complex and there are no treatments. And she seems like someone who might go home and research the "delayed fatigue" I experience which is specific to ME/CFS, and which she was kind of intrigued by. She was also brainstorming a bit to herself about my anosmia, stuff about prolactin, though I think she concluded that line of thought would probably result in more vision issues.

For now she ordered some basic blood tests, plus ferritin and a sleep study, and plans to test testosterone next time since it's too late in the day today.