USA: National Institutes of Health (NIH) intramural ME/CFS study

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I share that concern, @Cheesus. Though they say they found some consistent results, it's only in a small sample of patients and will need replicating, and for all we know it may be some sort of downstream effect that will enable some sort of symptomatic treatment, perhaps to enable better sleep or reduce pain or OI, but not the root cause that would enable curative treatments. I'm trying very hard not to raise my hopes. There's a long way to go.
 
FMMM1 said:
I'm wondering if he's found that other diseases are misdiagnosed as ME/CFS?
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I can’t remember exact details but I think some quite high number — about 30% I think — of people who were admitted for this study were discovered to have other diagnoses during the initial week long stay or whatever they did. I don’t think they said what those diagnoses were.
(Edit: clarified below by a trial participant below that it was much lower — 3 out of 20)
 
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Trish said:
I share that concern, @Cheesus. Though they say they found some consistent results, it's only in a small sample of patients and will need replicating, and for all we know it may be some sort of downstream effect that will enable some sort of symptomatic treatment, perhaps to enable better sleep or reduce pain or OI, but not the root cause that would enable curative treatments. I'm trying very hard not to raise my hopes. There's a long way to go.
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Oh boy, yes @Trish.

It could just be some small downstream bits as you say. There are already sleep and pain remedies.

OI treatments might be good.
But in general, side effects from most drugs are a concern.

And, as you say replication studies are needed.

It could be a very long time before there is effective help.
At least there might be more belief, respect and kindness generated by the NIH papers.

And, interest from additional researchers.
 
Braganca said:
I can’t remember exact details but I think some quite high number — about 30% I think — of people who were admitted for this study were discovered to have other diagnoses during the initial week long stay or whatever they did. I don’t think they said what those diagnoses were.
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Maybe one of the benefits from the study will be any evidence they provide that other diagnoses really should be thoroughly checked for.
 
ahimsa said:
The more generous interpretation is that researchers did believe that ME/CFS patients had biological problems. They just didn't know what those problems were, or how to measure them in a way that would be reproducible.

However, I confess that the sentence sure feels like NIH researchers saying they weren't sure at first whether there "really are biological problems" in ME/CFS patients.

Thoughts?
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Ideally, I think you'd want researchers to be agnostic going in. You probably don't want someone who comes to the research with a lot of pre-conceptions, even if those preconceptions align with your own. You'd probably even prefer someone who's skeptical of your own view, rather than aligned with it because, if they are convinced, that would indicate that the evidence is strong indeed. What you obviously don't want is someone who's so invested in their own view that if affects their objectivity.

Dr. Nath strikes me as being about as agnostic and objective about the research results as you could hope for - even if that is sometimes frustrating for us as patients.
 
Braganca said:
I can’t remember exact details but I think some quite high number — about 30% I think — of people who were admitted for this study were discovered to have other diagnoses during the initial week long stay or whatever they did. I don’t think they said what those diagnoses were.
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Three out of the 20-some patients brought in were given other diagnoses. One had Parkinsonism, one had a rare form of cancer and passed away shortly thereafter, and another patient had myositis in addition to ME/CFS.
 
FMMM1 said:
As I think others have pointed out, apparently if Nath publishes a pre-print then the high profile medical journals will not publish the paper - i.e. if you want to publish in a major medical journal then no pre-print.
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The term for this is "The Ingelfinger Rule."

In scientific publishing, the 1969 Ingelfinger rule originally stipulated that The New England Journal of Medicine (NEJM) would not publish findings that had been published elsewhere, in other media or in other journals.
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FMMM1 said:
As I think others have pointed out, apparently if Nath publishes a pre-print then the high profile medical journals will not publish the paper - i.e. if you want to publish in a major medical journal then no pre-print.
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Isn't this just evidence that the "high profile" journals are no longer concerned with progress in science, and instead are more concerned about their own perceived status and bottom line? Scientists needs to move away from these types of "high profile" journals (NEJM in particular is run by editors that are completely out-of-touch).
 
Forbin said:
Ideally, I think you'd want researchers to be agnostic going in. You probably don't want someone who comes to the research with a lot of pre-conceptions, even if those preconceptions align with your own. You'd probably even prefer someone who's skeptical of your own view, rather than aligned with it because, if they are convinced, that would indicate that the evidence is strong indeed. What you obviously don't want is someone who's so invested in their own view that if affects their objectivity.
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This.

If you want to find the flaws in your own argument, give it to a competent honest sceptic to tear apart.
 
FMMM1 said:
Anyone know how long we may have to wait?
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I think this is likely to be variable. They are going to internally circulate the soon to be completed draft, and probably will solicit comments and suggestions, followed by at least one more rewrite. This will take time. Only then will they submit for publication. Given the pandemic it might even be the case that a paper like this is given publication priority, and extra attention might be paid to it.
 
B_V said:
Three out of the 20-some patients brought in were given other diagnoses. One had Parkinsonism, one had a rare form of cancer and passed away shortly thereafter, and another patient had myositis in addition to ME/CFS.
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Did they replace them with other patients? Does anyone know?
 
Snow Leopard said:
more concerned about their own perceived status and bottom line?
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Nailed it --- money!

Yip these journals don't give a s--t about those desperate to see the outcome of this study. However, I think someone mentioned to me that they were coming under pressure to speed up the publication of some high profile Covid studies --- hopefully the same thing can happen here.
 
Ariel said:
Did they replace them with other patients? Does anyone know?
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Haven't checked but the study fell short of the intended number of participants ----
Cort did an article some time ago (I think he was also a participant) and I think he dealt with the issue of those misdiagnosed/removed from the study --- where they replaced etc.
 
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