1. The 27% LC can ONLY be excluded in the patients in the ONS data who have no activity limitation if they are asked in detail these questions: have you EVER had activity limitations that have fluctuated i.e that came and went? How bad were they at their worst? Had you ever had such functional impairment BEFORE you got LC? If you had functional limitations before but don't have now how long has this period of NO ACTIVITY LIMITATION lasted?
2. Any LC clinical outcomes research must account for the fact that LC is a fluctuating condition in that symptoms can vary within each day and from day to day and from month to month. This is common in psychiatric disorders and some neurological conditions e.g. relapsing/remitting MS but less common in other physical conditions.
3. Some studies indicate up to 50% of patients with LC meet the diagnostic criteria for CFS/ME - this raises the question - is LC a variant of CFS? Are CFS and LC variants of what has been described as post viral fatigue states? Are LC and CFS singular disease states or are there multiple discrete disease pathologies that accurately differentiate between subtypes of LC and CFS? At this point I don't think we can be certain that "if it quacks like a duck and looks like a duck it IS a duck" I'm not making light of the seriousness of LC and CFS they are very serious physical conditions and my very close family member has LC/CFS/PITS but the more I read of the science of LC the more troubled I am by confirmation bias that is affecting the interpretation of data. E.g if a doctor is convinced that LC is not a problem they will look at the ONS data and say that at 12 weeks nearly 1 in 4 patients has no functional limitation so they could WRONGLY state this supports the WRONG conclusion that "LC is all in the mind."
4. The major flaws of many RCTs in LC is that only small numbers are studied and the patients studied are heterogenous - some have mild LC, some have moderate and some have severe. Some hospitalised some not. But the researchers make no attempt to statistically control for these confounding variables because they think if the groups are matched at baseline that is enough. But the smaller the trial numbers are the more difference it can make to drawing the wrong conclusion about whether the trial medication is effective.
5. We can't rely on the peer reviewers for a High Impact Factor journal like Lancet or Nature to point out study limitations because those reviewers are also affected by their own biases.
6. Too few researchers IMO have the PRIMARY motivation to help patients for some its just a job and the more papers they publish the more likely they are to get promoted or to have increased power and status in the medical or research profession. In an ideal world researchers and doctors would be willing to put themselves in the shoes of their patients and if they did it would lead to much better research IMO.
Does the graph refer to patients at any stage after 12 weeks? Some may have recovered a significant level of activity compared to at their worst perhaps?
Thank you Dr, when you started talking about misdiagnosis I thought about the mistakes in the PACE trial. I wonder if it is a coincidence that the graph comes also from a UK institution.
Good Video Danilo: a few points
1. The 27% LC can ONLY be excluded in the patients in the ONS data who have no activity limitation if they are asked in detail these questions: have you EVER had activity limitations that have fluctuated i.e that came and went? How bad were they at their worst? Had you ever had such functional impairment BEFORE you got LC? If you had functional limitations before but don't have now how long has this period of NO ACTIVITY LIMITATION lasted?
2. Any LC clinical outcomes research must account for the fact that LC is a fluctuating condition in that symptoms can vary within each day and from day to day and from month to month. This is common in psychiatric disorders and some neurological conditions e.g. relapsing/remitting MS but less common in other physical conditions.
3. Some studies indicate up to 50% of patients with LC meet the diagnostic criteria for CFS/ME - this raises the question - is LC a variant of CFS? Are CFS and LC variants of what has been described as post viral fatigue states? Are LC and CFS singular disease states or are there multiple discrete disease pathologies that accurately differentiate between subtypes of LC and CFS? At this point I don't think we can be certain that "if it quacks like a duck and looks like a duck it IS a duck" I'm not making light of the seriousness of LC and CFS they are very serious physical conditions and my very close family member has LC/CFS/PITS but the more I read of the science of LC the more troubled I am by confirmation bias that is affecting the interpretation of data. E.g if a doctor is convinced that LC is not a problem they will look at the ONS data and say that at 12 weeks nearly 1 in 4 patients has no functional limitation so they could WRONGLY state this supports the WRONG conclusion that "LC is all in the mind."
4. The major flaws of many RCTs in LC is that only small numbers are studied and the patients studied are heterogenous - some have mild LC, some have moderate and some have severe. Some hospitalised some not. But the researchers make no attempt to statistically control for these confounding variables because they think if the groups are matched at baseline that is enough. But the smaller the trial numbers are the more difference it can make to drawing the wrong conclusion about whether the trial medication is effective.
5. We can't rely on the peer reviewers for a High Impact Factor journal like Lancet or Nature to point out study limitations because those reviewers are also affected by their own biases.
6. Too few researchers IMO have the PRIMARY motivation to help patients for some its just a job and the more papers they publish the more likely they are to get promoted or to have increased power and status in the medical or research profession. In an ideal world researchers and doctors would be willing to put themselves in the shoes of their patients and if they did it would lead to much better research IMO.
hi, let me reply
1- point 1: of course, agree about asking better daily functioning, I meant as a general concept physical limitation need to be present
2- true that symptoms fluctuate, and indeed people need to be interviewed for symptoms not about a single day
3- I have a video ready for the topic LC and CFS
4- agree about major falls in clinical selection
5- agree
6- agree as well
Thanks Danilo - you really GET LC and CFS!!
I can't spoiler this ;)
Does the graph refer to patients at any stage after 12 weeks? Some may have recovered a significant level of activity compared to at their worst perhaps?
I dont know honestly, but they would have become recovered at that point I think
Thank you Dr, when you started talking about misdiagnosis I thought about the mistakes in the PACE trial. I wonder if it is a coincidence that the graph comes also from a UK institution.