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

Andy

Senior Member (Voting rights)
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.
 
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.
 
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.
Dolphin said:
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.
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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.
 
Jaybee00 said:
Some of the same folks plodding along a decade ago are still here today without much in the way of significant contributions.
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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.
 
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.
 
Utsikt said:
There is too much focus on pleasing patients
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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.
wallfish said:
What is PROM short for?
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Patient Reported outcome measure. Basically a questionnaire, very susceptible to biases placebo and the like.
 
Yann04 said:
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.
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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.
 
Utsikt said:
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.
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Agree with the advocacy org problem. But to me I don’t think the root of the problem is the people affected. As in problematic constructs like CCI (without strict criteria), MCAS, hEDS without evidence of population wide correlation, emerged from researchers/clinicians interpretation of illnesses/syndromes people were suffering from. Not from the sufferers themselves. And the reason people cling onto them so hard isn’t because they’re fundamentally irrational or something but because that’s the only way they see to gain legitimacy and the power of naming over their “mysterious illness” in a system where that can be the difference between survival or not.
 
Biobanks, though not big enough scale projects resulting from them yet.

DecodeME, SequenceME,
Getting more savvy patients involved like in DecodeME.

S4ME

Fluge and Mella

Jonathan Edwards. particularly in educating patients about medical scence and clinical trials, and whatever he does behind the scenes.

Release and reanalysis of the PACE data

NICE review of trials

On the negative side

- the big and growing fightback from the BPS and now the brain retraining people
- still far too much research funding wasted on rehab/CBT/GET/PROMs
- influence of some patient groups with fixed ideas and them grabbing the big donor money for very poor research especially in the USA.
- social media hype and trends and influencers
 
Yann04 said:
Agree with the advocacy org problem. But to me I don’t think the root of the problem is the people affected. As in problematic constructs like CCI (without strict criteria), MCAS, hEDS without evidence of population wide correlation, emerged from researchers/clinicians interpretation of illnesses/syndromes people were suffering from. Not from the sufferers themselves. And the reason people cling onto them so hard isn’t because they’re fundamentally irrational or something but because that’s the only way they see to gain legitimacy and the power of naming over their “mysterious illness” in a system where that can be the difference between survival or not.
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I agree about the root. The professionals created the problem, and regardless of what the patients say now the people in charge can stop it if they see reason. The responsibility for the issue existing lies with the professionals.

But I don’t think that relieves the people that take it upon themselves to be influencers or sources of news or interpretations of their duty to not spread misinformation. Nor the patients that are involved in organisations. Especially when the BPS folks have always demonstrated how bad the science can be - everyone should be able to understand that that can also apply to biomed science.

I would say the same if a climate activist was spreading poor climate science. Sure, the researchers created the bad science, but that doesn’t relieve everyone else of their responsibility to do some amount of fact checking - or to not spread unverified info if they are not able to check it themselves. And if they push it so much that it affects policy, like funding decisions, they have even more responsibility.

The same goes for journalists for that matter.
 
- Jo’s devastating evidence review for NICE
- a clear and unanswerable critique of subjective unblinded trials which has demolished the foundations of much BPS methodology with implications far beyond ME/CFS (although most of its adherents are simply pretending not to have heard)
- astonishingly expert patients filling the gap created by the failure of peer review in relation to ME/CFS. Just look at the scientific calibre of this site. Ten years ago I understood pretty much everything posted here. Today I often feel like I’ve strolled into a meeting room in a life sciences department. In many cases it’s the same posters, who have educated themselves to a remarkable level
- approaching consensus among serious people on the symptoms and basic aspects of the illness (which we did not have ten years ago), as seen in better guidelines in many countries and above all in the S4ME fact sheets
- DecodeME data indicating that neuroimmune aspects are causal, not purely symptomatic
- Genetic work from DecodeME and others to justify detailed conversations about specific genes and associated pathways.

In the last ten years, a tiny number of serious researchers and patients, most linked to this site, have supplied the scientific rigour which universities, journals, healthcare and self-appointed research watchdogs like Cochrane have failed to supply. A small group of people have had to reinvent the scientific revolution to try to solve this disease.

That they have been able to accomplish so much is astonishing.

The failure of the medical and research establishment (with a tiny number of exceptions) is also astonishing, and should be of grave concern to anyone who values scientific medicine or even respect for reason in public life.
 
There being so little research and guidelines around severe me.

Severe patients, their families/carers/voluntary organisations/legal staff often individually have to advocate for adequate and reasonable care.

Some dont have the capacity or resources to advocate and may continue to quietly deteriorate at home, some sadly have lost their lives.

There needs to be a major focus on the health care needs and the least harmful ways of providing that care to patients, with robust guidelines for clinicians.

As a person with severe me, it just feels like so many of us are fighting/advocating individually at a time when systems should be supporting us most.

From an Irish perspective Im being flat out told if I need IV fluids or NG tube I will need to be hospitalised the entire time I need them. So now Im having to advocate to see if I can get these services at home, though its probably unlikely. It shouldn't be this hard to get reasonable accomodations in healthcare
 
Alem Matthees successfully secured the landmark release of the raw PACE trial data in August 2016 after winning a highly publicized UK Freedom of Information Act (FOIA) legal battle against Queen Mary University of London (QMUL) and the reanalysis
 
Compared to 10 years ago:

There is way more funding because of COVID.

We have genetic clues.

There are more things that have been shown to be dead ends or probable dead ends (to those not acting as salespeople for their specific discipline).
 
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