Discussion in 'Latest ME/CFS Research' started by MeSci, Feb 11, 2014.
This is the link for the Journal of Health Psychology:
I would say I fell into the PVFS for the 5.5 yrs of this illness, then moved on to CFS definition, and from there in to the ME definition. So it's possible people who are initially diagnosed may not have developed the obvious criteria . . . yet.
I did not experience PEM for the first 10yrs? IT only developed after improving to 80% when I started aerobic exercise. I certainly damaged my chances of "recovering" and possibly made myself worse off in the end.
I agree. Something is missing in regards to accounting for how the illness and symptoms evolve over time. I've been dealing with this for a good 14 years. This is what I experienced:
First 3 years: I had all the severe classic symptoms, with major crashes, and bed-ridden for periods of time. PEM was serious.
The following 8 years: I slowly improved a little, and things plateau for a few years. I oscillated between 65 and 75% of energy. Cognitive issues, sleep problems, headaches persisted unchanged. Fatigue improved a little, and crashes that left me bedridden were a bit less common. PEM got much better, to the point that I could do moderate exercise every now and then (but not aerobic; if I tried aerobic exercise, I would crash quickly).
The last 3 years: slowly symptoms started to worsen, and things went downhill steadily. All symptoms worsened, severe crashes became more frequent, new symptoms appeared (IBS, sensitivities). Energy levels dipped below 60% on a good day, with more "bad days" than "good days". Memory and cognitive issues worsened, and my sleep patterns got even whackier than before. PEM returned with a vengeance: two flights of stairs would leave me panting, feeling like I will pass out, and force me to lay down horizontally for a while.
I have read that other people with long-term ME/CFS have gone through similar phases:
Initial phase with symptoms at their worst.
Mild improvement that reaches a plateau, and stays there for a few years (I believe I read 10 years on average).
Severe worsening of condition after the plateau years, with some symptoms getting quite severe.
If you measure me at different stages, I would have conformed to different criteria.
Does anyone know more about these long-term stages?
Full text is available, here:
http://csh.depaul.edu/centers-and-institutes/ccr/research-and-publications/cfs/Documents/Definition ME-ICC CFS TwoDataSets.pdf
I wonder if this was the research study I took part in...
Surely all this study indicates is that if you use different diagnostic criteria then you'll ultimately have distinct patient groups?
Isn't that blindingly obvious?
How does that indicate there is an etiological difference between CFS and ME?
No, it isn't obvious to far too many BPS researchers, uninformed doctors, and government agencies. Oxford chronic fatigue studies are often extrapolated to apply to ME patients, for example.
A different and unique symptom (PEM) would strongly suggest a different etiology.
If this suggests a different etiology, how do you account for people, such as Mij above, who move have moved between experiencing PEM and not experiencing PEM? They just happened to have had two different diseases?
IMHO it is a question of severity. Stage one bowel cancer presents with different symptoms to stage three bowel cancer. A unique symptom does not necessarily indicate a different causation.
[EDIT: A brain tumour might be a better example, given that the CNS is implicated in both illnesses and can more easily explain the vast array of symptoms people experience.]
Having said that, I appreciate that some people are wrongly diagnosed with CFS and that this is more likely to happen when using less stringent criteria.
Those who go through a pattern of first being very ill, improving for a long period, and then deteriorating badly, should consider Lyme Disease as this is a common pattern, whereby the immune system is very active fighting it at the start, but then the bacteria cause the immune system to leave it alone somewhat until the late stage where there is multi-system failure.
Dr Paul Cheney's theory on the three phases of chronic fatigue syndrome can be read here. Cheney thinks that the aberrant RNase L found in ME/CFS patients is the factor responsible for the three stages of ME/CFS he describes.
Indeed, many doctors find that their CFS (ME?) patients have Lyme Disease
Dr Ramsay described remission in his ME patients and during remission they returned to normal muscle function.
"Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise."
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