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RCTs are NOT the gold standard. Properly designed double blinded RCTs with objective outcome measures are the "gold standard" (for clinical trials), ignoring for now the "platinum standard" of meta-analyses. The whole point of designing studies and investigating evidence in an evidence based...

On Sharpe's comments regarding funding David Tuller, a quest editorial - http://www.virology.ws/2018/04/16/trial-by-error-guest-post-crowdfunding-david-tuller-is-not-a-conflict-of-interest/#disqus_thread

I still do not have a twitter account for this reason. However it is very good for sending alerts. Its also very good for live tweeting of important events, as things progress.

This achieves the same goal as rolling out national CBT treatments or rounding patients with complex diseases up into quack diagnoses like MUS, but without the cost or the fuss. It is however a challenge to how the community and doctors think of themselves.

Yes, diagnostic methods alter analysis outcomes. Its why Oxford is so flawed. Selection bias is one of the huge biases in research. Naturally I am describing what I see of this as a biochemist. I have my screwdriver, I need my screws. When I am talking about subgroup clustering, given that we...

Yes, those rare days indicate that whatever is going on is some kind of biochemical switch. If we can figure it out we might be able to switch it off permanently.

This issue has come up with the biochemistry many times. There seems to be about a one-third/two-third split. This means they are in different subgroups for one parameter. Until we know if this is the same split for all such parameters we cannot be sure of everything. I am hoping some of the...

I have a blog that discusses this in the context of psychogenic diagnoses, on PR - http://forums.phoenixrising.me/index.php?entries/the-witch-the-python-the-siren-and-the-bunny.1149/

We had a brief experiment with trying to create an age of reason. It failed. Right now things appear to be going backwards, though we have entirely new myths, based not on gods but on ideologies. Psychogenic psychiatry, even when disguised by bipsers, is a throwback to older times. One of those...

Can we sign the open letter? If so we should put it to a membership vote. I would vote to do so.

My point is that perceived symptoms and underlying biochemistry are not the same. The type of fatigue I often get that leads to PEM if I push through it is different from fatigue I get from other things. Fatigue is not a monolithic entity, and its more a cultural description of extremely complex...

The problem is that fatigue is not a simple thing, and its not precise. Its like saying pain, or being sick, or depression. Its a general term. We do know that fatigue perception is in part based upon acid sensors in the blood vessels. The Lights did research on this. So if we push and our...

Currently this is done via the two day CPET or metabolic studies. Brain metabolic studies have been done for a very long time in CFS and ME. We typically have brain hypometabolism, and I am anticipating a new study that is currently not published that I hope will explain this a bit more. You...

Any study using only the Chalder Fatigue Scale needs to be looked at very carefully as its not a very good scale and its hard to assess outcomes.

Subjective reports are never great but are OK if proper blinding occurs.

This is my experience. I have also had long periods, lasting months, where this energy deficit still occurred and there was no fatigue. Fatigue is just a sensation, its the availability of metabolically derived energy that matters. These usually go together, but not always. Fatigue never stopped...

Neutraceutical as a term is at least decades old. Its about using nutritional supplements as a drug, not just to restore nutritional balance. For a pilot study I am tolerant of failures in methodology to some extent. Budgets are often tight and better methods give way to cheaper ones. However...

@Lisa108, I am wondering if we should adopt that unfortunate pigeon as our mascot?

I did early morning sunlight for years, it helped in the early days. Light seems to have little effect now.

I don't think we know enough to discuss what is typical. In my case it was about twenty years from severe insomnia to non-24 ... maybe. Or maybe its I didn't see the non-24 because I was trying to stay within normal hours. Or maybe there are other factors. In a small support group I am in three...