The Big Fishing Expedition: Report From the NIH Intramural Study on ME/CFS

[Undisclosed]

Please note, this thread is not about filling out PIP forms. Please stick to the topic of the thread -- Report From the NIH Intramural Study on ME/CFS.

Any further off-topic posts will be removed.

Thank you.

 

[Londinium]

They need to finish getting samples from all 40 patients before doing some of the high-tech stuff. For instance, they'll be looking at thousands of proteins in spinal fluid. They'll do this with pooled samples - all the patients in one pool; all the controls in the other. Then they look for differences. So that kind of work will wait until they get everyone. Not sure how long that will take. I think they've had about 10 patients and some controls in so far.

Do you have any indication as to whether, if they find something interesting early on, they'll publish as they go? Or whether they'll wait until the entire study is finished including all the various tests and analyses and only then look at publication?

 

[RL_sparky]

Do you have any indication as to whether, if they find something interesting early on, they'll publish as they go?

I emailed Dr. Nath your question and received the following reply:

"I am really torn. I realize that the field is desperate for answers and waiting only adds to the agony. But all the same the field is filled with data that is hard to interpret, often not reproducible and in the hurry to publish they are incomplete studies. My suggestion is to wait and get the first paper out that is very detailed and has a comprehensive evaluation of many parameters and then follow it up with several manuscript on each of the testings done. But as the data emerges it would become more evident if we need to rethink this strategy."

 

[Sean]

Dr Nath is correct. We have to let them do their job properly. Worst thing we can do now is rush it.

 

[Londinium]

I emailed Dr. Nath your question and received the following reply:

"I am really torn. I realize that the field is desperate for answers and waiting only adds to the agony. But all the same the field is filled with data that is hard to interpret, often not reproducible and in the hurry to publish they are incomplete studies. My suggestion is to wait and get the first paper out that is very detailed and has a comprehensive evaluation of many parameters and then follow it up with several manuscript on each of the testings done. But as the data emerges it would become more evident if we need to rethink this strategy."

Thanks! To be honest, whilst I'm desperate for quick results I think this is the correct approach scientifically. I think similarly about the indication from the RituxME team that they will not be giving too much away pre-publication. This field already has too many small sample sizes, post-hoc sub-group analyses, no correction of p-values for multiple comparisons and rushes to publish correlations found without testing in a validation cohort.

Doesn't make the waiting less agonising though!