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Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

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I didn't see this thread until you mentioned it elsewhere. If you want to see how meaningless and bad this study is:

Take Table 3, copy/paste it into a spreadsheet. It is the data for Group A total and Group A responders.
Use formulas to calculate N and EIPS (mean) for Group A non-responders. For N, that would be Group A total minus Group A responders. You can also calculate the mean EIPS.

You get the Group A non-responder group of N=27 whose mean EIPS goes from 3.77 at time=0 (N=27) to 6.45 at time=24 (6 years) (N=1). Wow, it "looks" like the non-responders improved their EIPS score even more than the responders!! But "responder" is defined as a patient with at least a change of 1 on the EIPS and "non-responder" as less than a change of 1 on the EIPS. So the non-responders after 6 years supposedly "look" like they improved their EIPS from 3.77 to 6.45, which is an increase of 2.68 points, but they're defined as patients who improved less than 1 point. Does this look like it makes absolutely no sense?! Well, it makes sense that it doesn't make sense because it's totally not legit to compare the EIPS over time of subsets of different N patients dropping out over time. Most of that increase in EIPS score is from drop outs to 5% of the original patient base. Which interestingly happens to look like the statistic I've seen that about 5% of CFS patients get well.

Pardon me for being harsh about this paper but Good Lord. I honestly can't believe a paper like this can even be published, even in a journal I've never heard of, and that any MD would put their name on this. Unless their point was to show that patients who don't improve drop out and patients who improve stick with their current treatment/doctor.

Of course, please feel free to point out if I've made any errors.
It is a long time since I looked at this but it seems to make sense. As far as I can see, what they really needed to have was a "rollng" mean - a baseline mean column for the subset that remained at each point.
 
Gerwyn also had a point about the journal the study was published in; my 'source' (who wishes to remain anonymous and who has CFS) does not believe there is a bias against getting CFS papers published - he believes good journals would love to publish groundbreaking work on CFS - that's the type of thing they live for - but that really good papers with really significant findings are rare. THe XMRV paper was a notable exception. Really good, rigorous papers, he felt, should be able to find their way to really good journals. he fact that this paper was not in a significant journal was not a strong point.
yet bad psychogenic papers get published all the time, even in the Lancet and what should be a sound journal, BMJ, and researchers have indeed complained that they cannot get published. I do not beileve there is no bias in big publications in general. That's the whole reason the J CFS was born.

On the other hand, I also believe CFS studies can get published in smaller papers. There is no reason why Cheney has to publish in Science or JAMA if he doesn't have something truly ground-breaking, but there is also no reason why he shouldn't be able to publish in Med Hypoth. and I cannot take him seriously when he (evidently, and now by your report) chooses not to try. I would much rather take him seriously because I think he could have a lot to offer, but he has to publish, even in an insignificant journal.
 
Problem is unfortunately even the bad psychogenic papers are immensely better scientifically than this paper. If this is an example of CFS research by the best CFS researchers have to offer, then it's no wonder why research into this disease is going nowhere. It's absolutely no surprise that a paper like this can't get published anywhere better. It's a surprise that it was able to get published anywhere at all. I wouldn't even be able to pass it by a TA for a class assignment without getting busted.
You have to realize that the "psychological" ME/CFS papers are written by teams of people that have a several million-dollar budget and ALL of MOST of what they do is research. So, for what they DO publish, it's not up to par.

Dr. Lerner is one single practitioner with an office in Michigan with neither the money/ staff/ time to do research. He also had CFS but was able to recover due to self-administration of antivirals. He's in his 80s, I believe? I have to respect his 2 decades of work in CFS and also that he put this data out there for us to see, even if it is imperfect. An easier choice, which many have taken, is not to publish at all.This paper was put together with volunteers, some of whom also have CFS.

While I believe the bar for CFS research could be raised, I also think it's partly up to people with skills in the CFS community to raise it. So I would suggest that anyone who has the experience offer their constructive criticism and/ or help as possible.
 
If this is an example of CFS research by the best CFS researchers have to offer, then it's no wonder why research into this disease is going nowhere.
Maybe you're confused because this is not "an example of CFS research by the best CFS researchers". This is a retrospective study of a collection of clinical data. It is not "research" in the commonly accepted sense. To suggest that it is an example of the best CFS researchers have to offer is naive at best.

This review and analysis simply looked at the clinical results of many years of one clinical physician's practice. It is not like formal research where the experiments are planned, the patient set carefully selected, the experiments planned, etc. As such, it would not typically be published in a major journal. A paper like this is more typically written for the benefit of other clinical practitioners -- to demonstrate the clinical results of a certain treatment plan, for example.

We have asked that successful clinical practitioners report the results of their treatment. Then we criticize one for doing just that because it wasn't something else. :confused: And we want clinical physicians and medical researchers to help us?

People may not like this review and analysis, and that's fine. But judge it for what it is intended to be, not for what it isn't.

The fastest racehorse won't win a dog show.
 
I agree with you sickofcfs, i thought this study was just a collection of his data on his cfs patients he had treated with antivirals, not a typical placebo controlled type study.

cheers!!

Maybe you're confused because this is not "an example of CFS research by the best CFS researchers". This is a retrospective study of a collection of clinical data. It is not "research" in the commonly accepted sense. To suggest that it is an example of the best CFS researchers have to offer is naive at best.

This review and analysis simply looked at the clinical results of many years of one clinical physician's practice. It is not like formal research where the experiments are planned, the patient set carefully selected, the experiments planned, etc. As such, it would not typically be published in a major journal. A paper like this is more typically written for the benefit of other clinical practitioners -- to demonstrate the clinical results of a certain treatment plan, for example.

We have asked that successful clinical practitioners report the results of their treatment. Then we criticize one for doing just that because it wasn't something else. :confused: And we want clinical physicians and medical researchers to help us?

People may not like this review and analysis, and that's fine. But judge it for what it is intended to be, not for what it isn't.

The fastest racehorse won't win a dog show.
 
It does not even do that. You cannot demonstrate clinical results by comparing means of 100% of patients against the remaining 6% of patients. The only thing this demonstrates is the effect of dropout.

However, I do agree with your first statement. I don't actually think this is the best CFS researchers have to offer. I have seen better. This was among the worst. That was in response to people wondering why these papers don't get published or in better journals and claiming bias as the reason.



Actually, I don't ask for clinicians to report results, and if they do, not to just report results haphazardly. I ask for sound methodology no matter what kind of thing they're doing. As Dolphin was trying to say earlier, they should at least compare the same patient to the same patient over time.

Fine. Complain about the statistical methodology all you want. That, at least, is a legitimate scientific argument people can bicker over. :)

That was in response to people wondering why these papers don't get published or in better journals and claiming bias as the reason.
Not a good example, then. This type of paper is not typically published in the better journals.

Actually, I don't ask for clinicians to report results,...
Maybe you don't, but others do.

I'm not up to arguing the statistical analysis of the data, nor do I necessarily want to. I never thought of this as a major paper, so I haven't investigated it in any great depth. You could very well be right about the statistical analysis. If so, you might want to write to whoever did the statistical analysis for the paper and ask him the tough questions. :)
 
I understand that other patients do ask for this. I was just pointing out that there was no contradiction in some people wanting this and some people criticizing it.

The Lancet publishes all kinds of medical papers: different types of experiments, reviews, case reports. This paper is structured as a "formal research" paper. Hypothesis, methods, results, conclusion. It's published under the category of "Original Research" in the journal. Which if you Google Dove Medical Press, you'll find a lot of discussion on scientists/professors blogs about this publisher group.

It itself is not a major paper, but since Dr. Montoya at Stanford cites it and Dr. Lerner is featured on the new Stanford site, it became more concerning to me. Up till now, I just assumed that a medical professor at a top institution would know better than me. I think I will try to find people more qualified than I am to get a perspective.
Seems like a reasonable plan -- if it concerns you, find some qualified people to help gain perspective. :)
 
The words "Original Research" doesn't mean that it has to be a double-blind randomized placebo-controlled trial but rather that it's not a review of others' work or commentary on the state of a particular medical illness, etc. So observational/ epidemiological/ large database analysis/ etc. studies are also considered "original research."

I think it is easy to criticize research but what humbles many people is when they try to do it themselves and realize it's much more complicated than anticipated. Even the best laid plans go awry as medical research deals with people and is not lab-based research, which is also not perfect but allows more control of factors. I've worked with some very smart people in the past and what made them even more amazing was how humble they were and how willing they were to learn from others, past studies, etc.
 
I do not mean it has to be a double-blind randomized placebo-controlled trial. It can be any of the many valid research types. You just can't compare means over time with 94% dropout in any kind and then determine any relationship to treatment.

If this were Wessely or anyone doing a CBT study, even some small time researcher with no budget, substitute "antiviral" with "CBT", maybe it will seem more clear.
Try to remember that unlike the UK CBT/GET pushers, Dr Lerner is NOT a gov't funded researcher. He's a clinical practitioner.
 
I just found this. Great article. Super doctor.

Dr Lerner said he thinks the heart is causing pots. I have a lbbb and pots and wonder how many others have heart problems.

This along with bodywide muscle spasms were my first symptoms of cfs. I had a massage therapist coming to my house
3 times a week and she couldn't get my muscles to relax.

This was paid for by my insurance company and prescribed by a chiropractor. So it wasn't just for fun.

Only after eliminating my food intolerances, esp gluten, are my muscles able to recover from exercise.

My ekg is the same after 8 years gf. Rats.

The damage was allowed to continue for 15 1/2 years post cfs onset. So disappointing but no surprise.

Bottom line, antivirals probably won't help me now. And maybe wouldn't have in the first 15 1/2 years either since I was still eating gluten.

tc ... x