Reality has a way of being very ironic about the times it chooses to bite you in your privates. Today, on International ME/CFS Awareness Day, I was woken up after four hours of sleep by one of the nursing home doctors who I had been trying to reach for two weeks. I have seen three of this nursing home's doctors, and one at an adult home before this. The doctor at that adult home declared that there was nothing wrong with me, that I was "fit as a fiddle". The first nursing home doctor told me (the day after I returned from a hospitalization with pneumonia, which had been misdiagnosed as "Nothing" by the "fit as a fiddle" guy) that I have to figure out what is really wrong with me, as there is no reason a young guy like me, without a real disease, should be in a nursing home. The second nursing home doctor told me "I don't believe in chronic fatigue syndrome, and I don't believe in global warming." When I offered to give him research papers, books, or other information establishing that it was a real physical disease, he said "No, nothing can change my mind."
The third nursing home doctor (this is starting to sound like a Grimm fairy tale) had til now never said anything like that, perhaps because I never brought up the subject with him, but I had my suspicions. He is a short, stubby man with small wire rimmed glasses, as well as spiky hair and a ruddy complexion that make him look like he is always angry, which he actually is. He speaks tersely in a thick Eastern European accent of some sort, and constantly interrupts.
I struggled to sit up and remember what I needed to ask him. I told him to excuse me, I am very groggy and don't have the best memory especially on waking up...While I was trying to fire up the computer that has my "to do list" on it, I mentioned to him that my allergist (outside the nursing home, of course) had ordered a CT scan and that she thinks high dose oral steroids may be necessary to treat whatever is going on.. and that I was concerned that this would be way too risky based on the herpes virus infections I have had, and the crash I suffered after only a week of low dose steroids back in '93. I also mentioned that she ordered a Natural Killer cell test, but I wasn't sure how to arrange it -- and here he interrupted, as this apparently was the last straw for the good doctor.
"Why a Natural Killer cell test?? what has that got to do with allergies?"
(I explained that it has to do with immunity problems and is related to CFS, and she was looking into it because of my recurrent local and systemic candida--)
"Do you know what systemic candida is? Tell me!"
(I manage to calmly tell him, despite the fact that the above was said like he was scolding a child, that I am not referring to HIV-related invasive Candida but--)
"I have gotten Candida infections before.. it is caused by things being too moist.. I did not need Natural Killer cell test!
"Don't you see what is happening here? You see one doctor. He refers you to an infectious disease doctor. An infectious disease doctor refers you to an allergist. An allergist refers you to a pulmonologist. The pulmonologist sends you for a CT scan. Everybody does a test and sends you to another doctor. It is a circle. And all the findings are extremely vague. High IgE.. that just means asthma. Take oral steroids! The CT scan will show nothing. It is a huge waste of money. I have seen higher IgE, as high as 2000."
(I told him mine was once over 2000).
"No it was 900, I just checked."
(I said I would like to see that bloodwork, because the last one was near 2000).
"The point is you don't need all these tests. Listen to me - Chronic Fatigue Syndrome is not a disease. It is a wastebasket. It is what some doctors tell you you have when they can't figure out what to do with you."
(I struggled to think of the standard bullet points...Yes, I said, it does have excessively vague definition by that name, but there are more specific ones.. like the Canadian cri-)
"We are not in Canada."
(Yes, but it was an international - )
"Look, there is no such thing. It is not a disease. It is a 'syndrome'."
(That term is a mistake, it was given by the CDC..)
"And the CDC are all idiots?"
(Well, doctor... I would say that it was a political move..)
"There are no politics. It just doesn't exist."
(But even the CDC says it is a physical disease, not a psychological one)
"Look, this is my opinion. Am I not entitled to an opinion?"
(Well, if it concerns a matter of medical science, I think you have to be open to-)
"I have made up my mind on this, and I am not going to change it."
(Would you be willing to read some research or statements from other doctors, specialists in chronic fatigue syndrome, who have published thousands of -)
"And - still they haven't found it. It is all speculation. I have read about it too, as much as I need to. You can look on the Internet all you want."
(But researchers have found-)
"They have found nothing!"
(Have you heard about XMRV..)
"So they have another infection, just like the herpes viruses. It is just another thing like that. Everybody has infections. It doesnt explain all of this.
"You are a young guy, you wake up at one o clock, you don't have to do anything, your food is brought to you, the nurses take care of your every need - you are living like a King!"
((I'm used to a lot of crap, but this made even my jaw drop))
"You get away from here where you live like a King and instead have to look after yourself, and your Chronic Fatigue Syndrome will disappear." [he makes a dramatic hand gesture]
(Trying not to say much worse, nor to yell, I tell him that is an ignorant and extremely insulting thing to say.)
"It is the truth."
(But there have been epidemics of this!)
"There have been no epidemics!"
(Yes there have-)
"No, there have not. Look, I don't want to get irritated, and I don't want to irritate you. This is my opinion. I will order what your allergist requested. But you know what I believe. There is no such thing as chronic fatigue syndrome."
(Remember, I tell him, multiple sclerosis was derided in the same way, for years doctors denied it existed, said it was psychological - )
"Multiple sclerosis was understood centuries ago."
(No, only after they had MRI did they establish..)
"That is different. With chronic fatigue syndrome there are no symptoms."
(Of course there are symptoms!)
"Tell me, what are they?"
(You're looking at them!)
"I get tired too. Listen, I wake up in the morning, I do not want to get up. My eyes are tired. I only get up because I have to. I wish I could sleep all day. I feel tired all day. Do I have chronic fatigue syndrome?"
(No, there are like I said specific criteria and hallmark symptoms..)
"Like what?? Name one!"
(Well, there is something called post-exertional malaise...)
"'Malaise'! Do you know what malaise is? I feel it all the time! I feel malaise right now."
(No, this is unique.. After some exertion, the entire CFS state worsens, and there are documented changes in cytokines, muscle pH...)
"Oh, 'muscle pH'! Please!" [Walks out]
(Yes, wait! They just published a paper..)
[He ignored me as he left, without another word.]
I now have no hope that any doctor here can be persuaded to instruct aides to push me around in my wheelchair (which I cannot push myself) so that I can at least leave my room and get some sun (I have Vitamin D insuffiency). The nursing home doctors have, due to state regulations, full authority on all matters concerning my health; they decide whether I go to an emergency room or not, they decide whether I get transport to see an 'outside' doctor, they decide whether I am allowed to take a treatment or get a test done that an outside doctor recommends. Although for now they are not willing to fight with other doctors, and have so far been humoring them about the "chronic fatigue syndrome" nonsense, they technically can put their feet down at any time. Meanwhile the only doctors I have on the 'outside' know little to nothing about CFS themselves and would sooner drop me than fight on my behalf.
I am in this nursing home in the first place because neither private insurance (ha!) nor even Medicaid will cover extensive home attendent hours for a "CFS" case. If it wasn't for Medicaid, in fact, I would be in a homeless shelter or worse.. and Medicaid too can pull the plug at a moment's notice, since CFS is not considered a worthy disease by government agencies anymore than it is by most doctors I have seen.
I guess this isn't much an 'advocacy' piece, is it? But the timing - right on Awareness Day - compelled me to post this here. The CFSAC can hold twenty more meetings this year, I could test XMRV positive and we can make this ME/CFS Awareness Month, or Year... None of that will change my current situation. I don't know what can.