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An update was published on June 13 with new information on the trial design. This is a pilot study and will not have a control group by the looks of it. The CPET data should still be interesting. https://cortene.wordpress.com/2018/06/ It is possible to leave comments on their blog.

In the real world, in most countries at least, there is probably a huge problem with patients that are somewhere on the ME/CFS spectrum not being diagnosed. That means the full extent of the problem is obscured. It also denies these patients the chance to contribute to research and advocacy.

I did look into some of the other studies he's citing and they don't really support his claims. I can grant him that meditation can lower blood pressure, but it's questionable whether that is best understood as conscious control of physiology. It's certainly not evidence that people can learn...

I understand the lightning process and Parker better after reading this. He is more interested in getting high on grandiose thoughts and selling inspiration, than understanding and solving problems in real world.

The test reveals how much effort the patient put in.

As far as I know there is a long history of claims that psychological factors can meaningfully affect disease processes but it always turns out to be nonsense. If LP can cure people in three days, it would be easy to prove that it works in ME/CFS by first demonstrating presence of PEM in...

Not much, without knowing any details. It's possible that they would be well and working even without LP.

This may be entirely off topic, but why do I feel pressure in head and a headache when standing up, while also having that feeling malaise and weakness that comes with low blood pressure? It is possible to have low and high blood pressure simultaneously?

He's making some wild claims: - That LP training allows people to "develop an awareness of which neurological pathways they are activating" and whether they are healthy or unhealthy. - That "cognitive, linguistic, embodied cognition and gentle movement techniques" can be used to interrupt those...

The labelling of patients as militant is just part of a pattern of negative stereotyping of patients.

Click here to read the full paper on sci-hub

It's the young men, borderline sociopathic and psychopatic, who are attaching themselves to PACE trial criticism. True ME patients are well mannered and don't question researchers who are only trying to help.

Another limitation is the sample size of 50 patients and 50 controls. It feels a bit small for the hundreds of things they're measuring. Women and men have different metabolite profies and the men in the sample are too few to say anything about them. The other metabolomics studies had similar...

There doesn't seem to be any unlocking of the disease here. It seems that every research group is seeing somewhat different metabolite profiles. There seems to be a broad agreement that energy production is affected but the details vary.

The adaptive pacing therapy manual for therapists in the PACE also made a complicated therapy out of the simple idea of pacing. It mentions "homework", "activity and fatigue diaries", "daily and weekly planning", "activity analysis sheets" and so on. Pacing is in my view not clearly defined but...

That pacing involved a therapist and visit to the clinic was an attempt to move it closer to CBT/GET in terms of placebo effect (not the best choice of words but you know what I mean). We have no idea how strong the placebo effect component was in each treatment arm. Ultimately the comparison of...

One of my worst reactions to food appeared to be due to gluten free chocolate cookies. Generally it's the cheap highly processed industrial food that is the most dangerous. I think that the problem might be additives. Or maybe the mast cell theory is correct and histamine is what matters.

Even if the illnesses are distinct entities it would make a lot of sense to cooperate at the science and advocacy level. We're in the same boat, and together we have the numbers to make a difference.

Isaac Marks co-authored this clinical trial of CBT for CFS. Michael Gelder's obituary acknowledged his role in developing CBT for CFS. The Oxford criteria paper acknowledges financial support from Michael Gelder. Both are authors of a paper on electric aversion therapy for "sexual deviants"...

But asking patients to rate their ability to do things isn't as reliable as actually measuring how well they can do things. Because patients are susceptible to wishful thinking or may not like to admit how ill they are. I not surprised that in picture posted earlier, physical function seems to...