A letter recieved on November 26, 2006

I am a 34 year old wife and mother of 2.

On August 10, 2004, I woke up and could not get out of bed. 
No energy and so exhausted.  Actually.....exhausted doesn't even describe it.  Just breathing made me feel like I would vomit.  I had to lay down.  I felt like I had the worst flu. 
Fast-forward to today....."the flu" is still here. 
I went through all the countless tests, the visits with specialists, the diet changes and supplements per naturopathic doctor, the medications per general practitioner.  All tests come back normal.  Nothing helps.  I am in the catch-all bucket called "Chronic Fatigue Syndrome". 

My doctor recommended I see a different rheumatologist at Fletcher Allen today.  My Dad drove me as it is exhausting to drive.  My Mom went in with me for moral support.  ... (The doctor) examined me and did the full history.  He sat back and told me I have nothing wrong with me.  I should see a psychologist.  I should meditate and find the "inner me".  I should exercise 1/2 hour every day regardless of how I feel.  I should ship my children to school (I homeschool.), get a job, and "get a life".  Those are his exact words.  "Get a life".  There is no doctor or medication that can help me.   Those are the things he said.    I asked "Have any people with Chronic Fatigue Syndrome that you have recommended this to, been helped by this?".  He said no.  He doesn't usually see people with Chronic Fatigue Syndrome.  He said he doesn't really know what causes it.  But until I "accept" this (his opinion), I won't be helped.

He said he felt something was misfiring/over-firing in my brain to cause
these feelings of muscle pain (He wasn't sure about the fatigue.). And they
could be helped by the above things. He said I have "anxieties". He would
not listen that I have "anxieties" because I am so ill, not that I am so ill
because I have "anxieties". Until I admit I have these "anxieties" and seek
counseling, I can't be helped, he said. At first he said I had to do 1/2
hour of vigorous exercise every day. He said I had to tell myself that I
had to do it even if I felt like "shit" (His word....not mine.) and tell
myself it wouldn't hurt me. He touted "listening to my inner self". Yet he
wouldn't LISTEN to me that my "inner self" makes it very clear that this
type of exercise would make me violently ill.

I checked on-line for the Mass General phone number. Got the Physician
Referral Number. Called and asked who sees and helps people with CFS. They
said "pulmonary". My response was --"Ummm.......NO....I said Chronic
Fatigue Syndrome." They said that is what their information says. I left a
message in the pulmonary dept but have been shaking my head over that one.
I have seen neurologists, cardiologists, gastro-enterologists,
rheumatologists, too many to count gynecologists, naturopathic physicians,
hematologists.... Someone in pulmonary. Interesting....


And another, short quote, 2007 (anonymous)

"... my rheumatologist ...informed me, get ready for this, that "there is no such thing as CFIDS" and all I
need is sleeping pills and I need to exercise every day no matter how exhausted I am or how much pain I'm in."