NIH to focus its ‘world-class’ technology and expertise on ME/CFS (blog)

[Marco]

You said it was unbalanced but the weaknesses of this study have already been explored at great length, while the strengths have largely been ignored, and I felt it was important to rebalance things. Aspects like the incredible breadth of tests: physiological, brain scans, immunological (1,500 cytokines, flow cytometry in spinal fluid for the first time), using stem cell technology to grow and test neurones from patient cells - and mostly done before and after exercise strike me as a brilliant design, yet much of this has hardly got a mention. Yes, I expressed an opinion too: having gone through it in great deal I think this is a study well worth doing.

Well said.

 

[Bob]

So if you have 40 CFS/ME controls and the massive amount of tests being run, dont you think people that dont fit the bill will stand out like a sore thumb?

The published research doesn't have to talk about outliers. It can simply blend the results of two groups of patients who look very different, to come out with one group with average results overall. With a small patient group and multiple even smaller control groups, it's very easy for meaningful results to disappear.

In the webinar, Nath specifically said that one of his main focuses will be to look for outliers and subgroups. If he finds subgroups then he will attempt to define them and recruit more similar patients.

 

[Bob]

I think it's a mistake to treat all NIH researchers as a single entity. I'm pretty sure that 6 of them don't have sufficient empathy and compassion for invisible illnesses, nor the scientific curiosity to look beyond their own very blatant and well-documented biases. I know that they will twist the data to support their beliefs, they will not listen to or believe patients, and some will even sabotage their own "biological" research to ensure that the chance of getting a positive result is minimized.

I am not going to empathize with those 6 psychobabblers. Period. I have contempt for them, and for the harm they cause patients. I am afraid of the damage they can do to this study and to patients in general, including myself.

Fair points. But very few of the discussions are focused solely towards the psychobabblers, criticisms are nearly always aimed at "these researchers" or "the NIH", which I don't personally find productive.

These 6 people are dreadful researchers. And they deserve to have it said about them. Dr Brian Walitt, Dr Leorey Saligan, Dr Fred Gill, Dr Mark Hallett, Dr Carine Maurer, and Dr Silvina Horovitz. The proof is on paper in black and white. If anyone disagrees with my interpretation of their specific researcher papers, please do feel free to point out my errors. But there is no way I'm giving these 6 people the benefit of the doubt, when there is no doubt that they are capable of perverting the scientific process to prop up their own bigoted beliefs.

I trust your judgement and I wouldn't have a problem with the criticisms being fairly targeted.