[t]ME/CFS Essay: Fatigue with and without Orthostatic Intolerance[/t]
Over the past twenty five years I have had the opportunity to see lots of things through CFS colored glasses. For example there are all these case definitions and diagnostic criteria. Yet as the years pass I see patients who go from one set of criteria to another. Presently I am writing the twenty-five year follow-up paper. And some remarkable things have emerged. They are so remarkable, non-clinicians will not believe them. Here is an example.
Mary got sick in 1985 with a typical mono-like illness and missed two years of school. She experienced the usual discrimination and physician abuse, except (I hope) in my office. She was for real. Strong, gutsy kid who kept up her studies despite not going to class. Her SAT scores were good and she went to college, part time at first, then almost full time and graduated. Fell in love, got married, had kids, had a job. She did great.
In 1995 we published a "Thirteen year follow-up" and she was one of the recovered patients. 80% of the kids followed up at 13 years were doing well, and it is one of the reasons there has been the general perception that kids are more likely to recover. I had made a mistake and did not realize what I know now. So we do the 25 year follow up questionnaire.
The first question on the SF-36 is "how do you rate your health?" excellent/very good/good/fair/poor are the response choices. Mary put down Very good. Then we look at her daily symptoms. Severe headaches. Moderate muscle and joint pain, doctors don't know what it is. Irritable bowel syndrome. Sleep is terrible. Memory and concentration is poor. Severe fatigue. When you look at all the questionnaire scores she is as bad as she was twenty five years ago. Except for one questionnaire.
Her activity is 16 hours a day. She can function a whole day, so she can work and raise a family. At the beginning of her illness her activity was only three hours a day - that was why she could not attend school. The only thing that has improved is the orthostatic intolerance - the ability to function in the upright position. And that is why she feels that she has recovered. The daily somatic symptoms are an annoyance which she copes with very well; ignores in fact. It is ironic that her fatigue is severe, but without orthostatic intolerance, so she considers herself to be "recovered."
But she has not recovered. She is still ill with all the symptoms of CFS except orthostatic intolerance. So when people say whether or not they are better, usually they refer only to that one central symptom that determines if you can function like a normal person. The degree of recovery is, in fact, merely the improvement of this one central symptom.
As we are testing some persons for XMRV, it turns out that people who say they are well, may not be fully recovered. One person, a regular blood donor, considered herself pretty well after "recovering" from CFS. She was positive for XMRV. Do you call them a positive control or a positive XANDer who is doing pretty well? The studies to take place in the next few years are not for the faint of heart.
A medida que testamos personas para el XMRV, sale a la luz que personas que dicen que están bien, puede que no estén totalmente recuperadas. Una persona, donante habitual de sangre, se consideraba a si misma con bastante buena salud tras "recuperarse" del Síndrome de Fatiga Crónica. Dió positivo para XMRV. Le damos el título de "paciente de control positivo" o un XMRV positivo que se desenvuelve bien? Los estudios que tendrán lugar en los próximos años no són para los débiles de corazón. (n.d.t.: jeje, éste coincide conmigo en que el SFC no es para cobardes...)Mary got sick in 1985 with a typical mono-like illness and missed two years of school. She experienced the usual discrimination and physician abuse, except (I hope) in my office. She was for real. Strong, gutsy kid who kept up her studies despite not going to class. Her SAT scores were good and she went to college, part time at first, then almost full time and graduated. Fell in love, got married, had kids, had a job. She did great.
In 1995 we published a "Thirteen year follow-up" and she was one of the recovered patients. 80% of the kids followed up at 13 years were doing well, and it is one of the reasons there has been the general perception that kids are more likely to recover. I had made a mistake and did not realize what I know now. So we do the 25 year follow up questionnaire.
The first question on the SF-36 is "how do you rate your health?" excellent/very good/good/fair/poor are the response choices. Mary put down Very good. Then we look at her daily symptoms. Severe headaches. Moderate muscle and joint pain, doctors don't know what it is. Irritable bowel syndrome. Sleep is terrible. Memory and concentration is poor. Severe fatigue. When you look at all the questionnaire scores she is as bad as she was twenty five years ago. Except for one questionnaire.
Her activity is 16 hours a day. She can function a whole day, so she can work and raise a family. At the beginning of her illness her activity was only three hours a day - that was why she could not attend school. The only thing that has improved is the orthostatic intolerance - the ability to function in the upright position. And that is why she feels that she has recovered. The daily somatic symptoms are an annoyance which she copes with very well; ignores in fact. It is ironic that her fatigue is severe, but without orthostatic intolerance, so she considers herself to be "recovered."
But she has not recovered. She is still ill with all the symptoms of CFS except orthostatic intolerance. So when people say whether or not they are better, usually they refer only to that one central symptom that determines if you can function like a normal person. The degree of recovery is, in fact, merely the improvement of this one central symptom.
As we are testing some persons for XMRV, it turns out that people who say they are well, may not be fully recovered. One person, a regular blood donor, considered herself pretty well after "recovering" from CFS. She was positive for XMRV. Do you call them a positive control or a positive XANDer who is doing pretty well? The studies to take place in the next few years are not for the faint of heart.