What are seminal studies in ME research?

Hip

Hip

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I don't think any seminal list of studies could miss the grandaddy of all ME/CFS causal theories: namely the enterovirus theory. There is a list here of many of the papers finding high levels of enterovirus in ME/CFS patients' blood, muscles, brains and stomachs.
 
Forbin

Forbin

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I guess this would be considered seminal...

About four years ago, I found the original, 90 page Public Health Service report on the 1934 Los Angeles outbreak in the online archives of the University of Michigan. With some difficulty, you could only access a page at a time at that website, so @Valentijn took the time to download it, page by page, and compile it into a .pdf, which @wdb was able to put on the PR website here:

http://phoenixrising.me/wp-content/uploads/LA-outbreak.pdf

It's written in the context of the time, when the major concern was a fairly limited outbreak of polio in Los Angeles. They knew something else was afflicting the staff of the hospital, however, so the author tried to document it. Later, in the 1950's, the outbreak in Los Angeles was regarded as similar to other outbreaks which had occurred in the 50's, principally the one at Royal Free Hospital in 1955.
 
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slysaint

slysaint

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Jenny TipsforME

Jenny TipsforME

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What about seminal studies on the horizon? Do we think the rituximab trial will be seminal? Feeling optimistic?

Sorry @JaimeS a bit :p we're on the lookout for upcoming biomedical trials NICE should be in eager anticipation of!
 
R

RogerBlack

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Jenny TipsforME said:
What about seminal studies on the horizon? Do we think the rituximab trial will be seminal?
Click to expand...

Unless there is little to no effect, absolutely.
The rituximab trial is a double-blinded trial.

In principle, the Rituximab phase II trial could have been the most effective and powerful placebo trial ever conducted in CFS.
it was not blinded, and arguments could be made that this could also indicate that the response was a massive placebo response, and consistent with CBT results. (though much, much more effective).

The phase III trial doesn't suffer from this.

The patient doesn't know which treatment they're getting, it's a largish trial, and the response measures are allegedly significantly larger than have been seen by CBT.

This tells us:
It is not psychological, because there is no psychological component of the treatment.
It is not 'benefit seeking', as otherwise there would be no effect.
It is one disease that can be reliably selected by clinical criteria without need for a blood test.
There is hope for a treatment - even if rituximab isn't it for some reason.
Other treatment with tiny effect sized and moderate to considerable costs (CBT, ...) is much less effective. (arguably not effective, but that's a seperate argument).

If the effects are 'significant' (much larger than 1/7 patients more in the trial arm report 'better, or very much better at 12 weeks), or much better than 5-7% improvement by a tiny amount (GETSET and PACE 12months paper), we can almost stop hammering on those trials, as they are so ridiculously outclassed.

(of course, we absolutely should not stop hammering on these trials until at the least significant errors in the methodology are addressed through retraction, letters of concern by journal editors, or the global understanding in every nation that these are not useful approaches)
 
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JaimeS

JaimeS

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Thanks so much to everyone who's responded so far! I'm going to have to winnow, some, so my readers don't get overwhelmed, but I really appreciate your help. :hug:
 
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