Influencing Medical Students

[AndyPandy]

Today was a great day!

I went to my appointment with my diabetes specialist and she had two medical students with her.

Although she doesn't have much knowledge of ME/CFS, she is very respectful, accepts that I am ill and that it is not a psychological condition. She first saw me when I was hospitalised in 2011.

When she asked me before the appointment if I would consent to the two students sitting in, I said "great, I can educate them about ME/CFS".

She graciously allowed me to explain my history and what ME/CFS was all about. This took up a fair amount of the appointment.

They have had no training whatsoever about ME/CFS.

I filled them in on what my life was/is like pre and post ME/CFS, the possible triggers (including statins), that it is not a psychological illness, the terrible symptoms, the associated disability, the poor attitudes of the medical profession, the lack of research attention, the uselessness of the CBT and GET approaches, the absence of a cure, the political agendas, how hard it is to live with, why I need a wheelchair and shower chair, why exercise can be harmful, how everything we do is an energy consuming "activity", the realities of pacing eg which day this week can I have a shower or make a phone call, how hard it is to manage diabetes and severe ME/CFS etc etc etc.

They were respectful and attentive. They asked questions. They wrote notes!

All in all it was a great moment and I left thinking/hoping that they will remember this if they come across an ME/CFS patient in future.

 

[barbc56]

So, there's some hope, relatively speaking.

By coincidence, when I saw my PCP last month, she mentioned that her interns had noticed more cases of FM during their internship. She trains interns as well as sees patients. She is very knowledgeable about Fibromyalgia and feels it's important to point out that on its own, it's not a psychological condition.

How incredible is that.

The only time I've said no to interns has been when I see my psychiatrist for med checks.

While where I live wouldn't be considered a small town, it's amazing the number of people who know others with six degrees of separation.

I'll have to remember to ask her the next time I see her, if she considers FM to be under the Umbrella of me/seids.

I've learned to go mostly by symptoms and not mention me/seids.Maybe I need to change that. .

Good for you to do that!
Barb

 

[SOC]

I'll have to remember to ask her the next time I see her, if she considers FM to be under the Umbrella of me/seids.

I hope she doesn't since FM does not require PEM and therefore is not SEID or ICC-defined ME by definition. Also, exercise is beneficial for FM and damaging for ME/SEID.

There was a time when FM and CFS were considered the same condition, but that idea is pretty well debunked now.

That isn't to say that some PWME don't have comorbid FM.

The highly (so-called) EBM medical monopoly clinic/hospital in my small city accepted that FM is a "real" illness as soon as there was a medication available for it. ME/CFS, however, is still a psych condition by their policy. Accepting FM means nothing with regard to accepting ME/CFS.

 

[barbc56]

I hope she doesn't since FM does not require PEM and therefore is not SEID or ICC-defined ME by definition. Also, exercise is beneficial for FM and damaging for ME/SEID.

There was a time when FM and CFS were considered the same condition, but that idea is pretty well debunked now.

That isn't to say that some PWME don't have comorbid FM.

That's an important point. The two have so many symptoms that overlap. It's hard to sort out what's going on.

I do get PEM or at least I think I do. I had a diagnosis of CFS when I first got sick. But like others in the US it disappeared when I changed doctors. This was a long time ago. However, I believe if I really have me/seid that it came first many years before but went unrecognized by myself as well as my doctors. There are times I think I have just have contiuous PEM from breathing.

Exercise, doesn't help my FM and if/when I exercse, which is no more than walking, it's at a time I feel better. But these times are few and far between so who knows if I have true PEM or it's part of the cyclical nature of how this DD affects me. This just doesn't afford me the opportunity to exercise with a long enough time frame in between to determine this in my case, if there's improvement or not. My gut feeling is it's both.

I posted a video on PR about FM about two months ago and one thing the doctor mentioned was that FM patients don't get the benefit endorphins when exercising. I would speculate the same goes for me/seid. This is in contrast to someone with depression who does get this benefit. Massage is also recommended but it would worsen my symptoms.

I thought FM has been accepted as a a subset of me/seid and the issue is still being sorted out. Though, I could be wrong about that. I have often thought they are different, but who knows?

Barb

 

[SOC]

Exercise, doesn't help my FM and if/when I exercse, which is no more than walking, it's at a time I feel better.

It's my understanding that if you have FM and ME/SEID, the ME/SEID trumps FM as far as exercise is concerned. If you can't exercise because of ME, then you can't and you're not going to the get the benefit from exercise FM-only patients get, which is something of a bitch since it would be nice to get some of the pain relief exercise gives FM-only patients.

I thought FM has been accepted as a a subset of me/seid and the issue is still being sorted out. Though, I could be wrong about that.

That was the case before PEM was recognized as a defining feature of ME/SEID. FM might come under the umbrella of Fukuda CFS, but not CCC ME/CFS, ICC ME, or IOM SEID -- all require PEM which is not a requirement of FM.