ME or CFS? What do you tell new docs?

[Andrew]

I think people give doctors too much credit. Doctors get mixed up, overlook things, etc. just like people who are not doctors. Problem is, I get mixed up too. That is why I have a description of my symptoms that I keep on my computer ready to print out for doctor appointments. And I rewrite it based on what doctors keep overlooking. For example, my eyes are blood shoot all the time, but doctors don't see this. So I put that on the list. After I did that, a doctor asked me to take my glasses off so he could examine my eyes. Also, I've found the word "flu-like" backfires every time .I told a MA at the rheumy office that my symptoms are flu-like. I thought she would understand this to mean achy, trouble concentrating, throat and nose symptoms, etc. But her response was "Oh, you feel fatigue," and she wrote it down at the top. So now I find it best to just give the symptoms. I also find it best to have two copies. One I keep so I can read it off when the doctor doesn't want to look at my records.

 

[WillowJ]

Rheumatologists, somewhat uniquely, do not usually have a problem with ME/CFS. However, they may think it's one and the same as (or a variety of) fibro. However fibro has similar sleep and pain problems and is recently getting more research and press for similar viral and immune problems, so this is not all bad.

 

[taniaaust1]

I think you should probably say ME if you have ME.. then if the doctor raises his eyebrows.. just say "a subgroup of CFS". We really need to get doctors more familiar with the term ME.

 

[Raindrop]

I think you should probably say ME if you have ME.. then if the doctor raises his eyebrows.. just say "a subgroup of CFS". We really need to get doctors more familiar with the term ME.

I like this....saying it's a subgroup of CFS. Maybe even a more serious subgrouping, so they
should definitely pay some attention. It does take some courage though. I have gotten some very
negative reactions, like "who do you think you are, making up some big name like that! " sort of
reactions. It's SO hard!!!! But having the Int'l Consensus manual may help. Depending on the situation
I may use that as a "shield" for myself. Definitely gotta gear up for that.

 

[SOC]

I use Myalgic Encephalomyelitis. If they look at me cross-eyed or try to pretend I'm making it up, I plunk down a copy of the ICC which has

Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011

right on the top. (Hello, it's in the Journal of Internal Medicine. Who's the ignorant person in this room?) I don't have to say that, but the message is in the air.

If they don't want to read it (and they very rarely do), they still have to admit that ME is a known entity not a made-up illness. If they disagree with things I claim as symptoms of the illness, I can point them out in the document. The doc can accept my explanation or read the document, but s/he doesn't get away with saying the illness doesn't exist or isn't serious.

I am NOT big on saying ME is a subgroup of CFS. CFS is already considered a minor, probably psychological, illness (thanks, CDC ) so being a subgroup of that isn't likely to get me very far if I'm trying to get medical treatment for some symptom.

If I'm discussing a symptom or treatment that is mentioned in the ME/CFS Primer for Clinical Practitioners, such as neuroendocrine dysregulation or autonomic/cardiovascular dysregulation, I'll plonk the Primer down in front of them, let them read the cover, then turn to the page where I've highlighted the specific issue I want them to deal with.

This doesn't work if you want general or supervisory treatment, like from a GP, because there's way too much information for them to absorb, but it can be effective for a specialist from whom you want something specific. Yes, you have to prepare in advance, but that's one of the many curses of the illness -- we can't expect docs to have any knowledge so we have to educate them.

It doesn't always work but when it doesn't, the specialist (an endo in my case) is completely incapable of hearing the patient and would be of no use to me in the long run anyway. We can't work with docs who only want to do the easy cases, so we might as well give up on them early.