What are you even talking about? We all know that the pathophysiology is unknown - that's why she's asking for research funding. TO FIND OUT THE UNDERLYING CAUSE. And she's specific in her request - she wants the UK govt to fund SequenceME given the success of DecodeME.
November 4, 2026 at 1:14 PM
What are you even talking about? We all know that the pathophysiology is unknown - that's why she's asking for research funding. TO FIND OUT THE UNDERLYING CAUSE. And she's specific in her request - she wants the UK govt to fund SequenceME given the success of DecodeME.
13) In the nearer future, AI models can help identify already-approved drugs that may be relevant to ME/CFS pathology and unravel the meaning of genetic findings such as DecodeME.
October 31, 2026 at 8:52 AM
13) In the nearer future, AI models can help identify already-approved drugs that may be relevant to ME/CFS pathology and unravel the meaning of genetic findings such as DecodeME.
I asked Ron if most ME symptoms could be from oxidative stress. He said yes, and that all the excitement about genetics would evaporate, and that ME is an autoimmune disease (as if this was common knowledge).
Bearing in mind Davis is a geneticist and that Ponting knew DecodeME was tactical*, we have
Bearing in mind Davis is a geneticist and that Ponting knew DecodeME was tactical*, we have
November 4, 2026 at 3:31 PM
I asked Ron if most ME symptoms could be from oxidative stress. He said yes, and that all the excitement about genetics would evaporate, and that ME is an autoimmune disease (as if this was common knowledge).
Bearing in mind Davis is a geneticist and that Ponting knew DecodeME was tactical*, we have
Bearing in mind Davis is a geneticist and that Ponting knew DecodeME was tactical*, we have
A disappointingly weak response to Beth Dobbin's letter. #SequenceME is not fully funded, #DecodeME can only go so far. A single clinical trial, which trial? Other diseases have many RCTs going on. Is the Burnham goverment OK with several billions of £ in economic losses every year due to #MECFS?
A pretty generic, non-commital response to Beth Dobbin's letter to Andy Burnham.
A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed. 1/4
A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed. 1/4
October 22, 2026 at 6:20 PM
A disappointingly weak response to Beth Dobbin's letter. #SequenceME is not fully funded, #DecodeME can only go so far. A single clinical trial, which trial? Other diseases have many RCTs going on. Is the Burnham goverment OK with several billions of £ in economic losses every year due to #MECFS?
3) Here's the Manhattan plot with shows the region that crossed statistical significance. Despite the big increase in sample size, they found (only) 11 loci. The one chromosome 20 around ARFGEF2 and on chromosome 1 around RAPGAB1L are the same as in DecodeME but others are new.
October 19, 2026 at 8:33 AM
3) Here's the Manhattan plot with shows the region that crossed statistical significance. Despite the big increase in sample size, they found (only) 11 loci. The one chromosome 20 around ARFGEF2 and on chromosome 1 around RAPGAB1L are the same as in DecodeME but others are new.
6) Interestingly, the meta-analysis might have found a hit in the HLA-region that is crucial for autoimmunity.
It's around 29 MB on chromosome 6 where DecodeME also had a weaker signal (a p-value around 5*10^-6, see image below). This will be interesting to delve deeper into!
It's around 29 MB on chromosome 6 where DecodeME also had a weaker signal (a p-value around 5*10^-6, see image below). This will be interesting to delve deeper into!
October 19, 2026 at 8:33 AM
6) Interestingly, the meta-analysis might have found a hit in the HLA-region that is crucial for autoimmunity.
It's around 29 MB on chromosome 6 where DecodeME also had a weaker signal (a p-value around 5*10^-6, see image below). This will be interesting to delve deeper into!
It's around 29 MB on chromosome 6 where DecodeME also had a weaker signal (a p-value around 5*10^-6, see image below). This will be interesting to delve deeper into!
„Zu früh dran“ trifft es. DecodeME fand 8 Risikoregionen, eine neuere Auswertung 2 Symptom-Cluster (Populationsstatistik, nicht aus einem Genom ablesbar). Dante Labs nennt für ME/CFS selbst keine gesicherten Genvarianten. Individuelle Subgruppen-Tests für spezifische Therapie gibt es bislang nicht.
October 17, 2026 at 7:58 PM
„Zu früh dran“ trifft es. DecodeME fand 8 Risikoregionen, eine neuere Auswertung 2 Symptom-Cluster (Populationsstatistik, nicht aus einem Genom ablesbar). Dante Labs nennt für ME/CFS selbst keine gesicherten Genvarianten. Individuelle Subgruppen-Tests für spezifische Therapie gibt es bislang nicht.
9) Caveat: we're amateurs and this s-LDSC method is complex so it's possible that we made errors. We were, however, able to largely replicate results for two other traits (schizophrenia and tiredness, correlation ~ 0.99) so hopefully that means DecodeME analysis is also reliable.
October 12, 2026 at 7:30 AM
9) Caveat: we're amateurs and this s-LDSC method is complex so it's possible that we made errors. We were, however, able to largely replicate results for two other traits (schizophrenia and tiredness, correlation ~ 0.99) so hopefully that means DecodeME analysis is also reliable.
8 ) So this once again confirms that the DecodeME data points to neurons in the brain with a potential role for medium spiny neurons (or cells and other processes that look like it).
More data and analysis here on S4ME:
More data and analysis here on S4ME:
A comparative atlas of single-cell chromatin accessibility in the human brain, Li et al, 2023 | Science for ME
Abstract
Recent advances in single-cell transcriptomics have illuminated the diverse neuronal and glial cell types within the human brain. However, the...
s4me.info
October 12, 2026 at 7:30 AM
8 ) So this once again confirms that the DecodeME data points to neurons in the brain with a potential role for medium spiny neurons (or cells and other processes that look like it).
More data and analysis here on S4ME:
More data and analysis here on S4ME:
1) 🧬 We did a new genetic analysis using DecodeME.
We leveraged a database on chromatin openness in the human brain. More openness means DNA is accessible and potentially active in various cell types.
The graph below shows the results for ME/CFS and various other diseases.
We leveraged a database on chromatin openness in the human brain. More openness means DNA is accessible and potentially active in various cell types.
The graph below shows the results for ME/CFS and various other diseases.
October 12, 2026 at 7:29 AM
1) 🧬 We did a new genetic analysis using DecodeME.
We leveraged a database on chromatin openness in the human brain. More openness means DNA is accessible and potentially active in various cell types.
The graph below shows the results for ME/CFS and various other diseases.
We leveraged a database on chromatin openness in the human brain. More openness means DNA is accessible and potentially active in various cell types.
The graph below shows the results for ME/CFS and various other diseases.
7) You can also clearly see the difference with Alzheimer or Multiple Sclerosis which have no peaks for neurons but for other cell types in the brain such as microglia or blood vessel cells.
These do not show up for ME/CFS.
These do not show up for ME/CFS.
October 12, 2026 at 7:30 AM
7) You can also clearly see the difference with Alzheimer or Multiple Sclerosis which have no peaks for neurons but for other cell types in the brain such as microglia or blood vessel cells.
These do not show up for ME/CFS.
These do not show up for ME/CFS.
(2/3) I had to glimpse the cards to organise them. Then one day I did the unthinkable. I took a printout of the Wikipedia article on #MECFS and read a whole sentence. Later a whole paragraph, then another! My eyes hurt and my brain crashed, but after a week I read it all and started on DecodeME.
October 8, 2026 at 9:51 PM
(2/3) I had to glimpse the cards to organise them. Then one day I did the unthinkable. I took a printout of the Wikipedia article on #MECFS and read a whole sentence. Later a whole paragraph, then another! My eyes hurt and my brain crashed, but after a week I read it all and started on DecodeME.
Andy (PPI DecodeME etc) set up fundraiser. Please read his story and donate if possible. #MEcfs
www.justgiving.com/page/andrew-...
www.justgiving.com/page/andrew-...
Andrew's fundraiser for Action for M.E.
Help Andrew Devereux-Cooke raise money to support Action for M.E.
www.justgiving.com
October 8, 2026 at 10:44 AM
Andy (PPI DecodeME etc) set up fundraiser. Please read his story and donate if possible. #MEcfs
www.justgiving.com/page/andrew-...
www.justgiving.com/page/andrew-...
Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.
Decoding ME: ME/CFS genetics and biomarker studies with Professor Chris Ponting, 24 September, 2026
YouTube video by ME Support
www.youtube.com
October 7, 2026 at 5:47 AM
My hope is that DecodeME + other research may lead to a significant shift. Jonathan Edwards has said that many more scientists & physicians he is contacting are taking an interest now. Things have been shifting slowly for a long time but we may be approaching a tipping point.
September 27, 2026 at 1:10 PM
My hope is that DecodeME + other research may lead to a significant shift. Jonathan Edwards has said that many more scientists & physicians he is contacting are taking an interest now. Things have been shifting slowly for a long time but we may be approaching a tipping point.
The results from #DecodeME were revealed because of high statistical power from a large sample, allows finding weak associations and ruling out false positives. So many comparisons are made there is high risk of false positives which means the threshold for significance needs to be more stringent.
September 27, 2026 at 5:11 PM
The results from #DecodeME were revealed because of high statistical power from a large sample, allows finding weak associations and ruling out false positives. So many comparisons are made there is high risk of false positives which means the threshold for significance needs to be more stringent.
#DecodeME has the wrong paradigm. They look for differences, but a common variant like #rs5522 can be present in people with ME/CFS and also in "healthy" controls (where it drives chronic tissue inflammation, pain other downstream conditions). Their method was never going to find the answer.
September 27, 2026 at 11:21 PM
“DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS. They also found a link to chronic pain, but not to anxiety or depression”
Sincerely grateful to @georgemonbiot.bsky.social for his advocacy.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
September 26, 2026 at 8:57 AM
“DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS. They also found a link to chronic pain, but not to anxiety or depression”
Sincerely grateful to @georgemonbiot.bsky.social for his advocacy.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
September 25, 2026 at 6:42 PM
Sincerely grateful to @georgemonbiot.bsky.social for his advocacy.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
An important thing I think is missing from his list of recent breakthroughs in science is DecodeME. This large scale, robust genetic research wipes away clean any remnants of the absurd claim it’s somehow a “psychological issue”.
@cgatist.bsky.social Thankyou for all your work on #DecodeME! The preprint was one of the first things I read in 2025 after having not being able to read articles for several years. It took all week and was not easy but it is an example of what real hope looks like even if there is much work to do.
September 24, 2026 at 12:52 AM
@cgatist.bsky.social Thankyou for all your work on #DecodeME! The preprint was one of the first things I read in 2025 after having not being able to read articles for several years. It took all week and was not easy but it is an example of what real hope looks like even if there is much work to do.
@georgemonbiot.bsky.social Thanks for your continued interest in ME. Hope you don't mind but have some thoughts for you. Done a little attachment rather than a thread. Hope that's OK.
September 22, 2026 at 11:54 AM
@georgemonbiot.bsky.social Thanks for your continued interest in ME. Hope you don't mind but have some thoughts for you. Done a little attachment rather than a thread. Hope that's OK.
there's stuff being kept secret from us. Surely pwME should be the FIRST to know? That's what I really appreciated about DecodeME (one of many things actually). They put US first.
This is basically Sonya and 4 MP's decided on the strategy, when MANY pwME are not pleased about their decision making.
This is basically Sonya and 4 MP's decided on the strategy, when MANY pwME are not pleased about their decision making.
September 22, 2026 at 12:20 PM
there's stuff being kept secret from us. Surely pwME should be the FIRST to know? That's what I really appreciated about DecodeME (one of many things actually). They put US first.
This is basically Sonya and 4 MP's decided on the strategy, when MANY pwME are not pleased about their decision making.
This is basically Sonya and 4 MP's decided on the strategy, when MANY pwME are not pleased about their decision making.
Thanks so much, George. I'd be curious to know which new research findings are in scope - guessing DecodeME? In any case looking forward to reading the article.
September 21, 2026 at 10:25 AM
Thanks so much, George. I'd be curious to know which new research findings are in scope - guessing DecodeME? In any case looking forward to reading the article.
