UK CMRC 2018 Conference held September 19 & 20 at Bristol

I think this is what we need to avoid. 'Regenerative medicine' is a phoney term banded about by people who want to get money for 'stem cell' research. I have involuntarily been part of the UCL 'regenerative medicine' consortium for about ten years and all I ever saw was politicos taking rhubarb to try and hype their field. The reason why there is money for this is that it is trendy and people at the top of the system are all handing each other money for it. Real research is not like that. It happens quietly in labs of creative people who have dedicated time to understanding a problem in depth.

I understand the frustration about funding but there is no point pouring money into rubbish.

You mention the USA and Norway putting money in. The Norwegians had the opportunity to fund some good science where there was a lead with the rituximab phase 3 trial. Some bright creative people in Bergen had found a lead. But it turned out to be a dead end. If we had a lead like that in the UK we could do the same but it is back to the drawing board so far for that line of research.

The USA have put some money in but I am not at all convinced that it will turn much up. There seems to be a huge emphasis on bacteria in the gut or microbes in general when we have little or no reason to think any particular microbe is important. I think that just the fact people are working on ME may produce some useful spin off but most of the time big projects go nowhere much.

The situation in the UK is that there are some sensible leads and some people planning to exploit those leads but it takes time to put a sensible strategy in place. We had a false start with MEGA. I think there is now a good chance to get things going properly. I would hope the a big grant would be funded now. There is still a problem that the MRC seem to have pretty little idea of what ME is about and the fact that they screwed up over PACE. We need to keep working on that but if the MRC do not know what they are doing but decide to give £20M to the first bidder we just pour more money down the drain.

Science is not an easy business. You cannot just say to people - we want you to go out and discover a protein called insulin. The scientists will rightly say 'but how do we know it when we find it? And the answer comes back 'no idea, that is what you supposed to discover'. It is a bit like asking painters to paint the best picture ever and call it the Mona Lisa. Not so easily done.

 

This is so true ...sadly when I look at papers nowadays it’s clear that a lot of them have been dashed off like a publication machine and read like it.

I went into research (not medical) because of the excitement of solving a problem. That’s what keeps you going when you are doing the monotonous stuff...and if it doesn’t work (or explain things adequately) you try something slightly different and do more monotony. I get the feeling that this kind of graft is unappealing to some...perhaps I’m old fashioned?

 

The Norwegian MRC equivalent put in money , £3m I think two years ago, to stimulate research with a call for funding. They are funding five big studies which were generally well received and just show what can be done outside the USA , Norway has their own entrenched BPS school to war with.

I expect the issues around research abound in many areas not just ours, in dementia millions of research dollars was supposed to have hit brick walls , isn’t that part of the process? I get that ME is still so unknown.

If the MRC do put in £20 m it would likely be spread over 4-5 years to up to five projects per year? Not blown on the first bidder. For me personally brain imaging research to explore areas of low activity, T cell research as CP is doing on a quite small scale, neuroinflammation, cell energy and exercise testing are where I’d like money put. Reading Tullers chat with CP still leaves it open as to whether MRC are going to fund or not, they’ve just been presented to.

 

Hope this isn't out of time or place!

Source: Action for ME

Date: October 1, 2018

URL: https://twitter.com/user/status/1046726140449222656


The videos [from the CMRC2018] are currently being edited in-house and we are expecting that they will be uploaded to our YouTube channel by the end of this week.

https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg/feed

 

Just to say in defence of anybody editing video footage, it is more work than might be apparent. Editing our Montoya interview took me a week in total as an example.

 

Do we not have better things to be engaging with them about?

Given that we have no idea what/how many volunteers they had working on them last year, compared to this year, we don't know if it is a reasonable delay or not. Given it has only been two weeks I'm likely to give them the benefit of the doubt. The only thing that does surprise me is that they aren't releasing them as they are completed.

ETA: Clarification.

 

Perhaps the hold up is down to a new approval or something? Agree it’s a bit early to be getting a “cob on” about it. It’s not like they’ve said they won’t be releasing one?

 

Hi - as a member of the PAG to CMRC since the outset, I must correct you - no one in the group has ever, EVER had any "BPS" bias. We are quite the opposite. Where did you get this impression?

The second point, yes the MEGA reps were transferred to the CMRC after the MEGA project folded last year (due to lack of MRC funding).

 

I am talking about someone who was I believe on the MEGA PAG group. This person in my view certainly leans towards encompassing the bps lot whilst also supporting biomedical research and I personally wouldn’t want them speaking for me. Also a few MEGA PAG members resigned as they had big concerns at the direction of the MEGA group.

 

Three other videos up now:

https://www.youtube.com/watch?v=5FonUVDyc0I

https://www.youtube.com/watch?v=eKbVBcxwt88

https://www.youtube.com/watch?v=VZ421O605j0

 

Very interesting concept in the Mark Jones thing in looking at the genes of not only an individual with a particular disease but also their parents (who don't have the disease, presumably) and seeing what new mutation the individual has (i.e. which bit of their genome didn't come from either parent) to get disease-causing candidates.

 

I can't remember in which thread you mentioned that drug development for autoimmune disorders had gone somewhat astray.. Could you explain what type of drug development you think would be more beneficial? Thanks

 

The crucial breakthrough in treatment of malignant diseases of the immune system (leukaemia, lymphomas) came when it was understood that complete removal of diseased cell clones could be achieved with combinations of drugs leading to long term cure.

The target is relatively easy to understand in malignant disorders because you can easily identify the clone of cells causing the problem. In autoimmune diseases the clones responsible for the disease look much more normal and it is much less obvious which ones are the real culprits. Using rituximab we were able to show that certain B cell clones are involved but we have not yet had proof that these are the only clones that need removal. It may be necessary to remove some T cell clones too, although the evidence so far is weak.

What should have happened in 2001 was a concerted attempt to use drug combinations to work out exactly what clones needed to be removed in conditions like rheumatoid arthritis or lupus or multiple sclerosis. This was not done partly because the drugs belonged to competing companies, partly because government agencies expected the drug companies to pay for all the work and therefore do the trials and partly because none of the drug companies actually wanted a curative treatment. They only wanted to sell as much drug as possible under patent and that meant long term usage, not cure.

Another part of the problem is that the general dumbing down of science has meant that even within academic immunology hardly anyone understood what research had already proven. People went on believing in theories from the 1960s, rehashed repeatedly to sound trendy. So nobody tried to set up the crucial studies. For instance there should have been studies in lupus deliberately trying to reduce immunoglobulin levels to zero for a short period. Nobody did these because they did not understand why that would be needed to test a particular line of attack. Trials where immunoglobulin levels fell were terminated.

The other side of the coin is that very often quantum leaps forward only occur when new technological options come in. Rituximab was a new technological option - for safe and efficient killing of B cells. It may be that we will not move forward until we have a safe and efficient plasma cell killing agent. But in malignant disease people found mixtures that worked just by systematic trial and error.

In the case of ME I have to say that I think this may be largely irrelevant because the suggestion that rituximab might be useful turned out to be wrong. Fluge and Mella did exactly the right experiment, which was well worth doing, but the result was negative. It would be reasonable to try a T cell depletion treatment like Campath or an interlocking 17 blocker in a few cases but it would not be without risk and at present I am not sure it would be ethical.

 

Thanks for explaining. I like your ability to call a spade a spade. It's refreshing.

 

This is both fascinating and horrific. Aren't there RA charities who should be clamouring for this work? And raising funds to pay for it? Do you have a sense of why they don't take action?

 

Because they are dumb, @Sasha. The sad reality is that most people in charge in science are dumb.