If ME/CFS research got £1 billion, what would stop it being wasted?

From another thread:

RECOVER was, of course, the US NIH's research program designed to understand, treat and prevent Long Covid.

If ME/CFS research was to suddenly get a massive cash injection, what could it be done to stop it being wasted, for example on BPS nonsense or poor-quality biomedical research?

 

Give it all to Chris and Audrey in Edinburgh I would say.
The only thing that really matters is that you have sharp, intellectually honest, investigators.
Actually, yes, there are some other friends who obviously come to mind, but Chris could share it out a bit.

 

If it was my billion, I would do that for sure.

But if, say, the UK government suddenly decides it's going to cough up, as opposed to some billionaire who can spend the money how they like, then are our grant-giving bodies up to the job? And if not, do we have any way of making them be so?

I can imagine a gold-rush, with all the chaos, greed and stupidity that that could involve.

 

Isn't that what happened in the US with the Long Covid money?

 

That's the impression I get but I haven't followed what happened...

 

IIRC, most of the money was spent on population studies and not on actually researching the virus or the patients. The people in charge did not have any experience from e.g. HIV, mono or ME/CFS.

 

Yes but even in this area it does not look impressive. The RECOVER study on ME/CFS post-covid did not include medical examinations so it was worse than the EBV studies we have.

 

Oh, totally.

But also, there's the built-in stupidity of government. I don't mean that as an insult to any politician (well okay, perhaps a few), it's just inherent in the system.

Ministers oversee government departments they know nothing about, and as soon as they begin to get a bit of a grasp—for instance which advisers are bullshitters, and which are being controlled by their rich mates—they're moved to another portfolio.

Governments shouldn't be allowed anywhere near research of any sort. They'll always get it wrong.

 

The Government isn’t going to just hand out money to researchers. They are going to do one of two things:

• Create a bureaucracy to hand out the money and to check if it’s being used properly. It will only be staffed with incompetent people and the checks will match the research standards of Psycho.
• Create a bureaucracy with free reigns that is always staffed with corrupt and/or people with vested interests in not advancing the research.

 

Exactly. Also, a government's attitude to a challenging problem is that they need to be seen to be tackling it. It doesn't matter whether the action they take has any chance of success, only that it's out of the newspaper headlines.

Grant-giving bodies aren't perfect, but at least they'd be able to weed out people who—for instance—are asking the same questions they've been pursuing since the 1980s and still think they can get a better answer by tweaking the questionnaire.

 

They might be now.

 

Give it all to Fluge’s group in Norway—much more likely to have treatments.

 

1) set criteria for the funding for example
- biomedical research
- no involvement of bps researchers
- include patients in priority setting/ research goals
- etc

2) choose a medical steering committee of biomedical researchers experienced in me research who can evaluate research proposals

3) choose a patient representatives committee chosen by patients

 

Likely it would be handed to a committee including both patients and researchers who will vote on whether to fund applications or not.

My dream situation would be that these are filled by people I trust, like Jonathan, Chris et al. And I think most people who are active on S4ME would have my trust as patient representatives on this hypothetical committee.

 

Setup a scientific panel of people like Jonathan and Chris and have patients chosen from this forum by vote as patient representatives. Get Sonya from AfME to help organise and chair the group. Let anyone pitch and all pitches would be openly discussed here, but that panel and patient group would be the decision makers to award grants.

This opinion is based upon the worst bias and self interest. But hey. I don’t trust the track record of other groups. They’ve wasted enough already.

Edit: lol, just seen @Yann04 was writing the same at the same time

 

I don’t think it should be limited to biomed, that would create undue bias. It should, however, be limited to studies of the highest research standards. That would effectively ban 99.9% of current BPS and biomed researchers.

I hope virtually unlimited funding would entice some good researchers to join the field.

 

I understand your pessimism here, and maybe a billion is a stretch but if, for example, DecodeME pans out and in a year or a few years after sequence we have possible biomarkets and drug targets, surely governments might see sense and invest considering how widespread post covid ME is, based on economic arguments alone?

 

Why? They already have effective treatments (in their opinion). Most politicians don’t care about actually making a difference, they care about being perceived as making a difference.

We would need someone like the Bernies Sanders of the US to cut through the bullshit.

 

Except they don't have effective treatments, they have a bag of magic beans and a very nice invisible shirt.

If we have scientific proof of physical processes going awry and causing the symptoms and the opportunity to treat them the situation changes considerably.