NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

So...........does anyone know how to access today's stuff?

As the link I used yesterday says it's all finished, with no sniff of any plans for it starting later.
 
Thank you.

It seems jump to last unread post may have skipped several posts, been a while since I noticed that happening, or it could be user error, defective eyes etc.
 
Jonathan Edwards said:
The problem is that there is no definition of NI. It is a slogan rather than a scientific term.

A sad fact about biomedical science now is that it is mostly shouting slogans. I am afraid that being a neuroscientist does not mean someone is not bullshitting.

I am not alone in this view someone found a review a year or two back where an eminent neurobiologist was bemoaning the meaninglessness of NI just like me.

Things seemed to change around 1985. Before that we talked about our data and about theories of mechanism in biomedocal science. By 1990 we had slogans like 'cytokine imbalance' or th1/2 imbalance, which mean nothing much.

There is an interesting difference with the story of rheumatoid ( ra) and multiple sclerosis ( ms). We could see inflammation in joints and brain with th naked eye. When we found cytokines we said maybe these are causing the inflammation we can see.

But in ME people find a whiff of cytokine and suggest it is causing inflammation that nobody had found so was not needing to explain. Its a bit like finding a loose tile and saying that will explain the water getting in when nobody had noticed any water getting in. It is back to front science.

It makes perfect sense to suggest the cytokines may be causing symptoms in ME but why say they are causing them via smething we do not see? Maybe they are causing the symptoms another way?

I fear that when you hear slogans in science you can be pretty sure people are clutching at straws of evidence. It is a bit like the slogan 'evidence-based therapy' - we know what that amounts to now.

A lot of the tine NI is used to mean microglial activation, but why not call that microglial activation. The reason is that it has not been found yet. Moreover the various measures Younger snd Bergquist talk about do not seem to indicate microglial activation particularly.
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Thank you very much for once again pointing this out. But if some/many (?) scientists are sloganeering and there is lots of "BS" and "clutching at straws" this then augers very very badly for all of us sitting at the edge of our chairs hoping that there will be some breakthrough for our suffering
family members, and the whole ME community which has been denied a normal life. For a layman, then, it is hard to know what is reliable and what is not. And it is then difficult to evaluate whether anything is moving along and where and by whom. Thank you.
 
Why are there so many case studies? Does someone know if it is something that was asked for the presentations?
 
Jonathan Edwards said:
A lot of the tine NI is used to mean microglial activation, but why not call that microglial activation. The reason is that it has not been found yet. Moreover the various measures Younger snd Bergquist talk about do not seem to indicate microglial activation particularly.
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That’s interesting. What do you think their measures do indicate?
 
Hi all - I've had pretty major PEM starting yesterday evening, it was a long and tough day. Had major sleep disturbance as I often do the night before the first day of conference and was suddenly woken up at 3:00am very wired. Traveling and then at conference yesterday with spouse and mother from 8am until 5:30pm and then travel home. Plus I had to answer a lot of questions for my mother during the presentations.

Woke up this morning with all my muscles very stiff and sore and that super heavy feeling like I cannot move my body or arms. If I went today I would crash and lose many days so I'm watching via video. I found the video works better with HD off.

Here's the picture from yesterday. Masur Auditorium has 488 total seats, so one could guesstimate how many are at conference, but as you know people are also outside and walking in and out during talks.
 

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Yes, @Perrier , it is hard for lay people to know what is good and what just hot air. In the old days there were way fewer scientists but they were mostly genuinely interested in gettong answers rather than keeping their job. I think there is much more noise in the system now but that does not stop progress.

Real progress tends to be made woth a disease at a stage when rather small groups of people get together at ad hoc meetings rather than as part of the big professional spcietu jamborees. I think ME research is at exactly this stage. Meetings are occurring on three continents driven by enthusiastic groups. I get a feed in from scientists who attend. They are genuinely tryong to find a syntbesis. Som blind alleys are bound to be involved but as soon as we know they are blind you know better where to look.

I think all these groups are doing useful stuff. The fact tha they may also be caught up with talking bullshit may not matter. The bright people present will pick out the good points.

I think things are growing well and setting the scene for serious progress. But what is progress is not always obvious straight off. It needs to bed in
 
Simone said:
That’s interesting. What do you think their measures do indicate?
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I don't know. The raosed temperature is odd. Raised temperature with i flammation is due to increased blood flow to colder areas like hands. It cannot apply to brain, which is already at core temperature. Being hotter would suggest more metabolic activity, not inflammation.

The cytokines people are picking up are not standard inflammation ones. I don't know what they would do in the brain.
 
Collins seems passionate. Hoping that a lot more of solid actions will follow fine words and good intentions.

This Brian Wallit is controversial from what I’ve heard. Read some of his previous statements on this and that, and they are pretty strong. I don’t know what to make of them in this context. Personal opinions and expressions will probably fail when meeting science.

Though the study are small it it very rigorous. Should be some interesting things to find? What I find a little troubling is the very narrow entry criteria, thinking of duration of illness. But it’s a start. An impressive one that will be interesting to follow and a study that should provide some knowledge.
 
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