In your opinion, what has changed, if anything, in ME/CFS research in the last 10 years? If it has, what do you think was the catalyst?

[Andy]

I'm looking to sample the Science for ME membership perspective of relatively recent changes, or lack of, in the ME/CFS research field and what has brought these about or, equally, has prevented them. I've used the time frame of 10 years in the title but happy to hear about older or very recent specific changes.

This will be used to inform a presentation at the upcoming PRIME Symposium (in broad terms only and no individual will be identified) but hopefully will be a useful discussion in of itself.

 

[Jonathan Edwards]

1. Somebody twigged that if you have not the faintest idea where you should be going in researching a disease you would do well to do a GWAS. The rest is history.
2. Simon knowing Chris!

 

[Jaybee00]

IMO ME/CFS research is still not attracting enough top tier scientists, even though funding may have increased somewhat due to “Long Covid”.

Some of the same folks plodding along a decade ago are still here today without much in the way of significant contributions.

ME/CFS is a tough nut to crack.

 

[Chandelier]

I think that the findings by DecodeME and the upcoming SequenceME projects give grounds to a whole new era of ME/CFS research.

Combined with what the smart people at WE&ME are doing, this gives me great hope.

Germany's "National Decade Against Post-Infectious Diseases" would have €50 million available per year for the next decade.
One of the many ways this could go sideways is that the people in charge don’t spend the full €50M per year.
That money would then be lost for our cause.
One big hope of mine is that smart projects like WE&ME‘s latest one can discover promising labs and foster their engagement to focus on this field.
This would make it much harder for the Germans to sit on their money or invest it into subpar quality endeavors.

Stage 1 of WE&ME Projects has closed with 52 short proposals submitted. Together, they request €9.12 million in funding.

The response is international: principal investigators are based at 60 institutions across 17 countries.

For the ME/CFS field, these numbers are encouraging. They show a research community actively looking for opportunities to work on the disease.

This makes Stage 1 a successful first step for WE&ME Projects, and one that points to substantial untapped capacity in ME/CFS research.

Selected teams will now be invited to Stage 2, with full proposals due by 10 November 2026.

 

[BrightCandle]

Not a lot has changed. Funding is broadly the same, its still horrifically underfunded. Given the lack of funding we have learnt very little that is new or well established. Covid and Long Covid brought a jolt of new to the field researchers that ignored the history, repeated the same mistakes and results and then disappeared when the cash run out. DecodeME might be an important result but hasn't been so far.

We have had a few clinical trials on a few ideas but no successes and have been poor quality.

We are no closer to understanding the disease really, we haven't eliminated or validated any of the various theories nor have we significant dug deeper into any of them except maybe neurology due to DecodeME. We still have very little of use.

 

[Jonathan Edwards]

Some of the same folks plodding along a decade ago are still here today without much in the way of significant contributions.

I nearly added that too.

But what is a 'top tier scientist"? Scientists with big reputations are by and large third rate fast followers. What we need are people who know what they are doing. My impression is that there are now several of these involved - some senior but also some junior ones who can carry things through the next thirty years.

 

[SugarSquared]

I'm new to ME/CFS research, especially having only been sick for a year, but I wonder if patients who are also researchers have a role to play. Are there more than there were 10 years ago?

 

[InitialConditions]

One of the biggest changes has been Germany and Austria coming on board. I'm not entirely sure what sparked that but it was probably the jump in cases due to covid.

 

[Utsikt]

I’m too new to this to have a full 10 year perspective.

Positives:
1. DecodeME (and SequenceME when it’s done).
2. Fluge and Mella demonstrating how to do ME/CFS trials properly.
3. Patients scrutinising data and finding new (or rediscovering old) angles like Prolactin and the analyses of the DecodeME data.
4. WE&ME and WWTF are doing good work.

Negatives:
1. I still think the quality of most of the publications is far too low.
2. The reluctance to accept null results and to discard poor quality data is wasting a lot of resources.
3. There is a lack of focus and professionalism among most advocacy organisations, and some have defected to the BPS lands and PROMs.
4. There is too much focus on pleasing patients, and fuelling researcher’s and clinician’s egos by holding on to myths and folk lore.
5. The more severe have been neglected.
6. Most people in advocacy positions are bad at arguing against the BPS arguments and focus on the wrong things when they try.
7. The BPS folks still have a lot of power and influence and make everything much harder and slower.

 

[wallfish]

PROMs

What is PROM short for?

 

[Yann04]

There is too much focus on pleasing patients

I feel like pleasing pwME isn’t an issue. In fact the most pleased we all could be would be having an effective treatment. There is disinformation and poor knowledge of rigour running wild in patient communities, but the same can be said of scientific communities so I don’t think it’s pwME pressuring researchers to so bad research that has caused bad research. In fact I wish pwME (like S4ME) were listned to more.

What is PROM short for?

Patient Reported outcome measure. Basically a questionnaire, very susceptible to biases placebo and the like.

 

[Utsikt]

I feel like pleasing pwME isn’t an issue. In fact the most pleased we all could be would be having an effective treatment. There is disinformation and poor knowledge of rigour running wild in patient communities, but the same can be said of scientific communities so I don’t think it’s pwME pressuring researchers to so bad research that has caused bad research. In fact I wish pwME (like S4ME) were listned to more.

I have seen numerous people in charge in advocacy organisations and in scientific roles in various organisations that have said publicly and privately that they are doing X or saying Y because of the wishes of patients. Like keeping up info about MCAS, hEDS or CCI, promoting off-label treatments, or going beyond the evidence with regards to the effects of treatments.

It also applies to other diseases, it’s not unique for ME/CFS. And the professionals play a role in this as well, some of them are pushing for the same stuff.