Mast cell activation disorders - NIH video

[Tilly]

Moved from a thread on another topic in the members only area.

With the issue of EDS ME and Mast Cell the NIH released a video about this and wondered if this would make a difference in the UK about it all

 

[Jonathan Edwards]

With the issue of EDS ME and Mast Cell the NIH released a video about this and wondered if this would make a difference in the UK about it all

This is exactly the sort of muddle I was talking about. As far as I can see some research physicians have identified one or two extremely rare genetic pedigrees and then extrapolated in a vague way to suggest that lots of people have some sort of 'mast cell activation disorder'. The fact that the video is put out by NIAID, is, like the educational material from the UK MRCGP, an indication that establishment bodies are no longer very interested in whether or not the material they put out is reliable. Everything is tainted with marketing I am afraid.

This sort of chatty accessible propaganda is guaranteed to make people feel they understand the concepts and believe in the message. It is irresponsible not to point out that the whole thing may be a house of cards.

 

[Tilly]

This is exactly the sort of muddle I was talking about. As far as I can see some research physicians have identified one or two extremely rare genetic pedigrees and then extrapolated in a vague way to suggest that lots of people have some sort of 'mast cell activation disorder'. The fact that the video is put out by NIAID, is, like the educational material from the UK MRCGP, an indication that establishment bodies are no longer very interested in whether or not the material they put out is reliable. Everything is tainted with marketing I am afraid.

This sort of chatty accessible propaganda is guaranteed to make people feel they understand the concepts and believe in the message. It is irresponsible not to point out that the whole thing may be a house of cards.

So how do we pull it back? How can we show good science when most of it seems far from it?

 

[Jonathan Edwards]

So how do we pull it back? How can we show good science when most of it seems far from it?

I wish I knew. There seems to be a systemic problem with biomedical science increasing over the last twenty years. In the first twenty years I was an immunologist we went from knowing almost nothing about cell interactions in immunity to understanding the core processes in autoimmune disease and devising treatments. Since 2000 it seems that almost nothing more has been achieved. Funding seems to have got caught up in meaningless fashions. Review articles are mostly nonsense. There are islands of good quality work in various areas but the mass of output is pretty worthless.

What I think is needed is open discussion of critical analysis of theories and evidence - as we have here. These forums have had a huge impact on research quality because they have allowed intelligent people to get together and make cases for sensible ways forward with quality control bodies, funding bodies etc. Every now and again it becomes clear that researchers have noticed critiques and adjusted their approach.

The real obstacle I think is the competitive commercial type spirit that has taken over science. Science should be a co-operative venture with the fruits enjoyed by everyone. There are some place where it may be hard to persuade people to change.

 

[Tilly]

I wish I knew. There seems to be a systemic problem with biomedical science increasing over the last twenty years. In the first twenty years I was an immunologist we went from knowing almost nothing about cell interactions in immunity to understanding the core processes in autoimmune disease and devising treatments. Since 2000 it seems that almost nothing more has been achieved. Funding seems to have got caught up in meaningless fashions. Review articles are mostly nonsense. There are islands of good quality work in various areas but the mass of output is pretty worthless.

What I think is needed is open discussion of critical analysis of theories and evidence - as we have here. These forums have had a huge impact on research quality because they have allowed intelligent people to get together and make cases for sensible ways forward with quality control bodies, funding bodies etc. Every now and again it becomes clear that researchers have noticed critiques and adjusted their approach.

The real obstacle I think is the competitive commercial type spirit that has taken over science. Science should be a co-operative venture with the fruits enjoyed by everyone. There are some place where it may be hard to persuade people to change.

This is what the Governments strives for so they are not left with the funding or the responsibility and it will all end in calamity. They had a problem with Bounty packages given to new mothers and the research into baby formula milk they promote.

How do we work our way out of this as no one is responsible or accountable. How do we make open discussion of critical analysis or theories and evidence public?

If we start with theories and discuss and then follow the research through? Journals are now seen as no robust measurement now? MRC are just as bad then you have the world stage . Need coffee

 

[Jonathan Edwards]

I think the positive side of it is that maybe things have always been this bad but in different ways. Einstein could not get a job, probably because he was Jewish and a bit uppity, so he had to work as a patent clerk or something. In his spare time he sorted out the basics of the two pillars of modern physics. Science has probably always depended on the mavericks doing their own thing. They will continue to do so.