Wednesday, July 14, 2010

The Infectious Disease Doctor Says............

I have Fibro. He does not "believe" in CFS and thinks it's actually Fibro and (wait for it) I should go into an exercise protocal immediately - including (your never gonna' believe it) obtaining a PERSONAL TRAINER.

He is sending notes to my primary care doctor and my CFS specialist stating this. I already have a call into my CFS specialist about this and am sure he will disagree (and note in his records) - but this is still going to be in my frigging medical records.

I am furious to be honest. I feel that I was manipulated into this appointment, and I fear at some point down the road it will be used against me.

I am so grateful for the internet and all of you - because otherwise, I would have listened to this idiot and probably be either bedridden or in the hospital. (Not to say that can't happen anyway - but I certainly don't need to push it.)


  1. OMG! Infuriating!!!
    If I were you I'd get his email address and send him a bunch of legitimate info on CFS and write a sacrastic letter about his ignorance!!!

    I know how you feel, I got turned away from a hospital emergency room because 'they didn't believe in it' either. I went to another hospital in an ambulance and was admitted with heart failure! What is wrong with these people!!!!

  2. What a crock of ..... For God's sake do not go down that road. Done it been there. It will only make things worse. See my comment to last post. I feel so angry for you.

    I think you should (if you are able at this point) get as much info as poss and copy it to him re CFS) If you cannot then maybe some of the M.E. groups in US have standard letters and info leaflets which you can use to send to him

    We're with you (*)

  3. Thanks Lee Lee and Cusp - your support and back-up regarding this doctor being a total idiot is so reassuring. The sad thing is that he is THE specialist with a MAJOR university hospital (that is widely recognized). We unfortunately, have not come far at all - I'm afraid.

    I'm tempted to just leave it alone - since him and my "big boss" are in some business deals together - wonder how long before my "big boss" is told off the record (because of HIPPAA and all) that I just need to exercise.

    No more second opinions - I'm done. I miss my CFS specialist.

  4. Just thought I'd write here as sorry to hear things didn't go well with this new doc. It must be unbelievably frustrating!! It always feels so defeating to have medical "professionals" fail you. Hugs!