After DecodeME - next steps for the ME/CFS community?

[Amw66]

We have started this thread by splitting off some of the posts in the DecodeMe in the Media thread.
The focus is what the community can do to maximise and make good use of the public interest, and to keep up momentum on research.
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So- as a priority- how can this research be utilized best to address the current hellish situation for

1. Those being denied nourishment / treatment ( thinking of the 3 or so females in hospital struggling to be taken seriously and in deteriorating health)
2. Parents being accused of FII (or worse)
3. paediatric services headed up by psychs - surely not the most appropriate speciality given no links to anxiety and depression ( and it virtually always anxiety as an attached diagnosis for kids)
4. a counter argument for FND as this is being rolled out ad infinitum?

 

[Yann04]

The no link to depression and anxiety found and the hits having (as far as I’m aware) no overlaps with the FND GWAS. (Even tho presumably misdiagnosed pwME ended up in that GWAS), is probably two angles of attack.

 

[Jonathan Edwards]

So- as a priority- how can this research be utilized best to address the current hellish situation for

I think there is an opportunity to get paediatricians interested in doing genetic studies and in particular on people with an onset of ME/CFS before age 13. These people are the most likely to have strong genetic risk factors. Genetics is something paediatricians think about all the time. A replication study on the 8 DecodeME hits plus a rare gene search on whole genome ought to produce something tangible even with as few as 500 cases I would think. An international consortium effort might be productive, if control populations can be adequately matched.

 

[Jonathan Edwards]

I am out of London at present but when I return to London and UCL I will get in touch with James Cox and John Wood who have been working on the genetics of pain. They have picked up some intriguing molecular targets. ME/CFS will not immediately be on their radar but they are the sort of people to get interested I think. They should also know of paediatric clinical interests.

 

[hotblack]

I am out of London at present but when I return to London and UCL I will get in touch with James Cox and John Wood who have been working on the genetics of pain

Molecular neurobiology and pain genetics, that’s the ticket!

Wolfson Institute for Biomedical Research

Established in 1995, the UCL Wolfson Institute for Biomedical Research (WIBR) focuses on fundamental and translational neuroscience within UCL's neuroscience community.

www.ucl.ac.uk

 

[Robert 1973]

I think there is an opportunity to get paediatricians interested in doing genetic studies and in particular on people with an onset of ME/CFS before age 13. These people are the most likely to have strong genetic risk factors. Genetics is something paediatricians think about all the time. A replication study on the 8 DecodeME hits plus a rare gene search on whole genome ought to produce something tangible even with as few as 500 cases I would think. An international consortium effort might be productive, if control populations can be adequately matched.

I sent your hypothesis paper to Helen Lachmann but no reply. Not sure how well you know her but I’m wondering if she or anyone in her team at the NAC would be interested and in position take things any further.

 

[MrMagoo]

Am I right in summarising that there was no signals found for Long Covid?
Which may explain why our “Professor of Thinking Yourself Better” hasn’t been tempted to get involved or react.

 

[Andy]

Am I right in summarising that there was no signals found for Long Covid?
Which may explain why our “Professor of Thinking Yourself Better” hasn’t been tempted to get involved or react.

We didn't look at Long Covid?

From the FAQ,
"What do these results mean for people with Long Covid?

Some people with Long Covid experience symptoms that overlap with ME/CFS, such as post-exertional malaise, fatigue and brain fog. While DecodeME didn’t specifically study Long Covid, 729 of our participants reported that they developed ME/CFS following a COVID-19 infection. More studies are needed to explore the links between ME/CFS and Long Covid in detail."

 

[MrMagoo]

We didn't look at Long Covid?

From the FAQ,
"What do these results mean for people with Long Covid?

Some people with Long Covid experience symptoms that overlap with ME/CFS, such as post-exertional malaise, fatigue and brain fog. While DecodeME didn’t specifically study Long Covid, 729 of our participants reported that they developed ME/CFS following a COVID-19 infection. More studies are needed to explore the links between ME/CFS and Long Covid in detail."

There were no outcomes for Long Covid like no gene signals found because you didn’t look at LC?
I know pwLC were included, but there’s no “results” regarding LC.

Our Professor has proudly made himself a “I recovered from Long Covid” badge, so I guess he’s not claiming he cured his own ME.

 

[Andy]

I know pwLC were included, but there’s no “results” regarding LC.

No, we included people who developed ME/CFS following a COVID-19 infection.

The preprint says,
"Long COVID, a condition with similar symptoms and starting, like most cases of ME/CFS, after an infection, has one genetic association near FOXP4 (72), but this was not shared with ME/CFS (p = 0.59 for rs9367106)."

Thread for that paper here.

 

[Ariel]

Is there any update on that GWAS of Long Covid that was not funded iirc? Is that project dead now, or did someone else take it up?

 

[MrMagoo]

Yeah you would think now would be the time for LC advocates to be calling for similar

 

[Hoopoe]

The next big step?
Get SequenceME funded.

 

[Ariel]

The next big step?
Get SequenceME funded.

Does anyone have an idea of how long these things usually take? Hopefully this will happen, it seems like such a great project. These results seem. to make it more likely to be funded?

 

[Kitty]

So- as a priority- how can this research be utilized best to address the current hellish situation for

1. Those being denied nourishment / treatment ( thinking of the 3 or so females in hospital struggling to be taken seriously and in deteriorating health)
2. Parents being accused of FII (or worse)
3. paediatric services headed up by psychs - surely not the most appropriate speciality given no links to anxiety and depression ( and it virtually always anxiety as an attached diagnosis for kids)
4. a counter argument for FND as this is being rolled out ad infinitum?

I'm not sure how likely it is to prompt changes in clinical practice. Yet, anyway.

The way it usually works is that people arrive at a way of doing things, and in order to change it, something has to happen that shows another way of doing it is better. There's massive inertia in systems and practices, and it takes a lot power to shift it.

The idea of DecodeME was to show us where to look for answers, and it has. It wasn't expected to show us how to approach the problems of managing or treating ME/CFS, and I wonder if that might be needed to effect significant change.

There are positives we can emphasise, and one of them is that DecodeME has shown careful diagnosis using the right questions is reliable. The people it identifies can also be grouped by their genetic profile.

The phrasing of that is terrible (brain's mush due to a new med), but the point's important. Partly because it quietly underlines that this is a serious thing that has serious people looking at it, and the results show they've got it right so far, and further progress is expected. And it does it without anyone saying "Look! Proof! Real disease!", as if there was ever a possibility it wasn't.

 

[hotblack]

I'm not sure how likely it is to prompt changes in clinical practice. Yet, anyway.

It may be just one of many things which gradually starts to change ideas anyway. Maybe not for those with them backed in. But for new medical professionals coming through.