Looking for feedback on my letter to local doctors

jonathan_h

jonathan_h

Established Member (Voting Rights)
I’m writing a letter to local doctors in the hopes some can be convinced to complete this new medscape CME on ME/CFS diagnosis and treatment (which I chose because of the positive feedback it received in this thread.) I’m trying to improve my chances of success by making it feel personal—to that end, I’ll also be including in the letter a nice picture of myself.

Dr. ,

I’m writing as both a long-time patient at [their clinic] and as one of hundreds of [county] residents with ME/CFS—also known as chronic fatigue syndrome.

If the name “chronic fatigue syndrome” conjures an image of someone who just needs a week off work, please know that this image bears little resemblance to our lived experience. The majority of ME/CFS patients are too disabled to work, and around 25% are housebound or bedbound at some point in their illness. I have been almost entirely bedbound for the last several years and need help feeding myself and with most other activities of daily living.

The state of physician education regarding ME/CFS is, unfortunately, quite poor. When I fell ill at age 13, I started by seeing a local pediatrician in [our city]. This is where my path to a diagnosis should have started and, in a few months, ended. Instead, it took five years, tens of thousands of dollars wasted, and finally a trip to the Mayo Clinic to get my diagnosis. Such stories are sadly common.

With a little effort, you could become the doctor people with this illness desperately need. I’m asking you to complete a new Medscape CME module* covering best practices for diagnosing and treating ME/CFS. By doing so, you might in time prevent a lot unnecessary suffering.

*The module is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Based Learning Module“ (April 2020) and can be found at https://www.medscape.org/viewarticle/927906
or by googling “medscape cfs case based”
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Some things I’m wondering: are the factual claims I make accurate? Is it too long? Too vague? Any other thoughts on how I might improve my chances? I may eventually send an appropriately altered version to a bunch more doctors in my county.
 
I dunno. It sorta reads to me like 'I know you don't know anything, so go learn the stuff I want you to learn'. I would perhaps rephrase it and make it more chummy.

Maybe say something along the lines of, 'This condition is so confusing, isn't it? This is the stuff I wish I'd known before. If you're like me, perhaps you'll find it useful. If not, at least you can get a CPD credit out of it.' Just better, obviously.

I suspect you'd get a better response by breaking down the barriers between you, rather than reinforcing them. Hence why I'd play up how difficult this disease is to navigate, so you take the blame out of not knowing stuff (even if you actually do know, and they don't).

You probably also want to mention that an average GP's surgery will have 40 (???) patients with ME, so this will help in their day-to-day practice.
 
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I have rewritten the last two paragraphs in light of the advice given to me and would appreciate any further feedback if people think it could still be improved.

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When I fell ill at age 13, I started by seeing a local pediatrician in [our city]. This is where my path to a diagnosis would, ideally, have started and ended within a few months. Instead, my diagnosis took several painful years because the doctors I met with weren’t familiar with ME/CFS.


There is a great new Medscape CME module* whose aim is to give healthcare professionals the tools they need to diagnose and treat this confusing disease. Given the prevalence of ME/CFS, at least several people with the illness are likely to be currently enrolled at your clinic. Completing this module could make trying to help them—or future ME/CFS patients you encounter—an easier experience for you.
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An aside, but this has taught me what was probably obvious to many reading my original letter—I have a really hard time empathizing with doctors (for reasons I’m sure many here can relate to) and that makes talking to them in a way they’re likely to be receptive to difficult.
 
jonathan_h said:
I have rewritten the last two paragraphs in light of the advice given to me and would appreciate any further feedback if people think it could still be improved.



An aside, but this has taught me what was probably obvious to many reading my original letter—I have a really hard time empathizing with doctors (for reasons I’m sure many here can relate to) and that makes talking to them in a way they’re likely to be receptive to difficult.
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I don't really have any suggestions to offer. I liked your letter, applaud your efforts, and wish you well with this endeavor.

Welcome to the forum by the way.
 
jonathan_h said:
I have rewritten the last two paragraphs in light of the advice given to me and would appreciate any further feedback if people think it could still be improved.



An aside, but this has taught me what was probably obvious to many reading my original letter—I have a really hard time empathizing with doctors (for reasons I’m sure many here can relate to) and that makes talking to them in a way they’re likely to be receptive to difficult.
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I like your letter, I think it sounds friendly now and you make your points well.
 
jonathan_h said:
I have rewritten the last two paragraphs in light of the advice given to me and would appreciate any further feedback if people think it could still be improved.



An aside, but this has taught me what was probably obvious to many reading my original letter—I have a really hard time empathizing with doctors (for reasons I’m sure many here can relate to) and that makes talking to them in a way they’re likely to be receptive to difficult.
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It sounds silly but make yourself smile whenever you write to your doctor, and imagine them as someone you really like. You may find that helps. Or listen to happy music.

When I want to get in a particular mood for my writing (e.g., angry for a fight scene), I always put on appropriate music and work myself up. That's when you write the best.
 
adambeyoncelowe said:
It sounds silly but make yourself smile whenever you write to your doctor, and imagine them as someone you really like. You may find that helps. Or listen to happy music.
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What you said earlier about making out that we are not blaming them - And what I even said about the letter now being more friendly - really put something into contrast for me.

Imagine that instead of having ME, we all had cancer, and were undergoing chemotherapy. Imagine that in order to get doctors to take us seriously, we had to constantly be “friendly” to them and check our tone, or else they wouldn’t even bother to look up what cancer was. It would be terrible, because that is not how a doctor should behave.

Or being in any oppressed or minority groups, (as per the intersectional movement) and feeling like the only way for others to even look at or listen to the smallest things that happen to us, that leave us bedbound, was by flattering their sensibilities constantly & making sure not to blame them etc. I think most of us would never tell someone from any such group to do that. Often people outside minority groups are told they themselves should never ask minorities to explain their oppression & why they suffer and how to help, or ask them to have to justify themselves or to keep their tone “nice” or friendly, because if they did make them do that, it’s a violence against those oppressed groups. But yet why do we not treat ourselves in the same way?

I’m not directing this at anyone. It’s just something that struck me in general and made me sad. Yet it is something that we have to do constantly - just to survive. Just to cope with even the doctors meant to be closest to us - our family GPs. The hoops we have to jump through & the things we have to do, the way we have to talk, the way we have to act.
 
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lunarainbows said:
What you said earlier about making out that we are not blaming them - And what I even said about the letter now being more friendly - really put something into contrast for me.

Imagine that instead of having ME, we all had cancer, and were undergoing chemotherapy. Imagine that in order to get doctors to take us seriously, we had to constantly be “friendly” to them and check our tone, or else they wouldn’t even bother to look up what cancer was. It would be terrible, because that is not how a doctor should behave.

Or being in any oppressed or minority groups, (as per the intersectional movement) and feeling like the only way for others to even look at or listen to the smallest things that happen to us, that leave us bedbound, was by flattering their sensibilities constantly & making sure not to blame them etc. I think most of us would never tell someone from any such group to do that. Often people outside minority groups are told they themselves should never ask minorities to explain their oppression & why they suffer and how to help, or ask them to have to justify themselves or to keep their tone “nice” or friendly, because if they did make them do that, it’s a violence against those oppressed groups. But yet why do we not treat ourselves in the same way?

I’m not directing this at anyone. It’s just something that struck me in general and made me sad. Yet it is something that we have to do constantly - just to survive. Just to cope with even the doctors meant to be closest to us - our family GPs. The hoops we have to jump through & the things we have to do, the way we have to talk, the way we have to act.
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I absolutely agree, and this is called tone policing, which is a problem. But experience and pragmatism tell me that sometimes you have to set aside what *should* happen to help bring about what *could* happen.
 
wingate said:
How did your letter writing go? Get any responses?
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I sent one to around a dozen doctors at my local clinic. No responses, but that’s unsurprising since they’d need to go to the effort of writing and mailing me a letter.

My primary care doctor got one. She told me at my next appointment she appreciated my letter, but judging by her ignorance about ME, I doubt she did the CME course. I’m not too bothered—I’ll always have the vague hope that someone was moved by it to get informed :p.
 
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jonathan_h said:
I sent one to around a dozen doctors at my local clinic. No responses, but that’s unsurprising since they’d need to go to the effort of writing and mailing me a letter.

My primary care doctor got one. She told me at my next appointment she appreciated my letter, but judging by her ignorance about ME, I doubt she did the CME course. I’m not too bothered—I’ll always have the vague hope that someone was moved by it to get informed :p.
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Well you never know if they’ve got any common sense at all it’s possible that with Long Covid in the news they might have had a lightbulb moment and thought the course might be useful.
 
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