DecodeME in the media

Lou B Lou said:
Pulse - '… It appears that underlying ME/CFS and fibromyalgia (and also likelyPTSD) is a dysregulated and excessive immune response to either infection or acute stress. This releases (scientifically and experimentally proven) very high levels of inflammatory cytokines andIl-6 which then affects the brain, central nervous system and also the hypothalamic-pituitary axis.

The nervous systems remains in a neuro-inflammatory state with the imprint of this hyper-immune inflammatory response forever imprinted on it.
'Central sensitization' is a term that is often used.

Very recent research from the groundbreaking DecodeME study confirmed these findings. It also showed marked genetic differences in those individuals who have ME/CFS concerning the immune system and neurological system.

Acute infections and acute stress and trauma can both do this, like a severe 'fight or flight' response. This is why patients and individuals with a history of trauma, abuse or adverse childhood events [ACEs] are more likely to have these conditions.'
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Complete horseshit. Trying to legitimize their fake concept of sensitization by using solid evidence that has nothing to do with it. Monstrous.

And enough with this "flight of flight" junk. This has exactly zero to do with acute infections, with being ill or anything related to this. These people are just as delusional and opportunist as RFK Jr is.
 
Kalliope said:
The Swedish tabloid newspaper Aftonbladet has a paywalled article titled "New study can reveal who will become sufferers of ME"

www.aftonbladet.se

Ny studie kan avslöja vem som drabbas av ME

Forskare har hittat att kroniskt trötthetssyndrom, eller ME/CFS, kan ha genetiska orsaker. Det nya fyndet kan leda till att man hittar nya läkemedelsbehandlingar som fungerar.
www.aftonbladet.se www.aftonbladet.se
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Seems like they’ve completely misunderstood the study then..
 
Kalliope said:
Yes, but perhaps the title was made by someone who didn't read the article.
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That may be, but the summary isn’t very good either:
Chronic fatigue syndrome, or ME/CFS, may have genetic causes. Researchers have now identified several mutations that may trigger the condition.
  • The researcher about the new finding linked to ME/CFS
  • The study shows who can suffer from PEM
  • Could lead to finding drug treatments
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The genes don’t «trigger» ME/CFS, that’s usually something else.

People without the genes can also get ME/CFS, and people with the genes might never get it.

DecodeME is in itself not very likely to lead to treatments, but future work from the same team or based on hypotheses based on DecodeME might.
 
BrokenBeaktheBrave said:
Yep it is indeed "Saturday Morning" on Radtio New Zealand at 7.41am (NZST) - so likely interviewing right now. The show is usually uploaded and available to listen by Saturday afternoon BST.

Should be able to listen here when the episode is uploaded.
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Interview of Chris Ponting on Radio New Zealand this morning.

It was a good interview, maybe 10 mins long though so not very deep. My notes follow, probably less useful than an actual transcript of the short interview, but I've done them.

Technology used has been around for 15-20 years, well overdue to apply it to this common and debilitating condition
Chris mentioned female predominance. The interviewer queried why? Chris said that the study has not found a good explanation yet, the analysis is not finished yet.

Explained the issue that these aren’t diagnostic markers, just risk factors
People now feel heard, they say it is a welcome first step

Symptoms? – often after an infection, in that respect similar to Long Covid. Post exertional malaise – can’t sustain activity, pain, autonomic issues, feel faint, pain, sensitivities.

Interviewer – people go to doctors and are not believed. Chris – hope that it is considered that this diagnosis is real, this group of people is different compared to the general population. One of the signals is on top of a chronic pain signal.

‘It’s physical but it can be a mental toll’?
Chris – Absolutely. Brain fog.

Long Covid? Crossover Doesn’t seem to be a crossover, but another study has found crossover Precision Life. And this would not be a surprise.

Could it lead to a cure? We hope so. Long journey. We hope to accelerate diagnostic tests and treatments, data available.

Why Chris is devoting attention? Chris mentioned his friend, ME has destroyed many aspects of his life. Few people working in this area, little funding. Co-production with people with ME.
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****
So yes, it was a good interview. I'm not sure that it will change much though, especially given the stressing of it being a female disease and the overlap with chronic pain. There's still enormous scope there for people to assume it's a disease of females with a very low threshold for complaining about their health.

I think there probably needs to be more explanation of the fact that the 8 regions found are just clues, that many people without ME/CFS have the genetic variants, it's just that they are slightly more common in ME/CFS. It may be that the disease is caused mostly by environmental factors and chance, rather than genetic predispositions. Perhaps that needs to be said.

Related to that, I think care needs to be taken around the 'overlap with Long Covid' issue. I think we need to be noting that Long Covid is a vague term, covering many conditions including things like lung damage resulting from the acute disease. But that some people do meet ME/CFS criteria after a covid-19 infection. That is the overlap. DecodeME found 1000 or so of those people and included them in the study. I don't think the DecodeMe sample of post-Covid ME/CFS is big enough to be saying that the DecodeME tells us something useful about the overlap between ME/CFS and Long Covid. I don't think any/many significant variants were found in the male subsample for the same reason of the sample being too small. But, we aren't saying that we don't think men get ME/CFS.

I think the question about the mental toll could have been better answered in another way - brain fog isn't really the mental toll of the disease. A good answer might have been something like 'It's a debilitating isolating disease causing many losses, so it's not surprising that people with ME/CFS might sometimes feel sad, or worried about how they will pay the bills. But, we did not find any overlap in genetic risk factors with those that have been found for depression or anxiety disorder. From the genetic evidence, ME/CFS is not the same as depression or anxiety disorder.'

The mention of Chris' personal connection to ME/CFS is always powerful. And great that the message was got across that research on this disease has been under-funded.

Sorry for the detailed analysis. It was a good interview, just trying to offer something that might fine-tune things even more, for the DecodeME team and the rest of us.
 
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Hutan said:
between ME/CFS and Long Covid
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I agree. I think we need to stop talking about ME/CFS and Long COVID as if their Venn diagram doesn’t intersect. it like comparing traumatic brain injury to car accident injury.

To avoid the terminological muddle, I would theoretically prefer the “Post-COVID Conditions”, but understand the inertia is very much behind “Long COVID” as a term.
 
Logged into Facebook briefly to find this annoying overview on a page called Science Pulse. No idea if it's actually a proper publication...

A landmark genetic study has finally proven that myalgic encephalomyelitis chronic fatigue syndrome ME/CFS is not just psychological but has real genetic causes. The DecodeME project led by the University of Edinburgh analyzed DNA from over 15,000 people with ME/CFS and more than 250,000 healthy controls. Researchers identified eight key regions of the genome linked to the illness involving genes connected to immune function and the nervous system.

These genetic variations suggest that some people are more vulnerable to ME/CFS due to impaired infection response or altered chronic pain pathways. This is the first robust scientific evidence confirming ME/CFS has biological roots after years of stigma and dismissal by parts of the medical community.

ME/CFS affects an estimated 67 million people worldwide causing severe fatigue brain fog and post-exertional malaise that can last for weeks often following infection. While there is no cure or diagnostic test yet, this breakthrough opens the door for genetic screening targeted treatments and more research into why ME/CFS disproportionately affects women and differs from conditions like long Covid.

This study offers hope for millions of patients seeking recognition and better care and marks a turning point in how chronic fatigue syndrome is understood worldwide.

#ChronicFatigueSyndrome #ME_CFS #GeneticResearch #invisibleillnesses
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rvallee said:
Complete horseshit. Trying to legitimize their fake concept of sensitization by using solid evidence that has nothing to do with it. Monstrous.

And enough with this "flight of flight" junk. This has exactly zero to do with acute infections, with being ill or anything related to this. These people are just as delusional and opportunist as RFK Jr is.
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I hope someone is able to issue a correction given it's a key medical mag. Despite the warm sentiment Decode did not confirm anything of the sort. In fact it specifically excluded an overlap with anxiety and depression.

I thought the frequency of ACEs thing had been debunked too?
 
rvallee said:
Complete horseshit. Trying to legitimize their fake concept of sensitization by using solid evidence that has nothing to do with it. Monstrous.

And enough with this "flight of flight" junk. This has exactly zero to do with acute infections, with being ill or anything related to this. These people are just as delusional and opportunist as RFK Jr is.
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Do we have a confirmed author for this one yet? I think it's important and I'm surprised someone can write something which after all isn't 'just news' when they've put a misinterpretation on it for those reading it to know who is behind it?
 
Lou B Lou said:
Thanks to Shnickelfritz on twitter/X for screenshots of the Pulse article.

This section of the Pulse article appears to announce that the DecodeME results confirms the 'Central sensitization' ideology, and then tags on 'patients with a history of trauma, abuse or adverse childhood events [ACEs] are more likely to have these conditions', ie ME/CFS, Fibromyalgia and/or PTSD.

Does the DecodeME study actually confirm 'Central sensitization' in ME?
Or does the Pulse article wildly extrapolate?


Pulse - '… It appears that underlying ME/CFS and fibromyalgia (and also likelyPTSD) is a dysregulated and excessive immune response to either infection or acute stress. This releases (scientifically and experimentally proven) very high levels of inflammatory cytokines andIl-6 which then affects the brain, central nervous system and also the hypothalamic-pituitary axis.

The nervous systems remains in a neuro-inflammatory state with the imprint of this hyper-immune inflammatory response forever imprinted on it.
'Central sensitization' is a term that is often used.

Very recent research from the groundbreaking DecodeME study confirmed these findings. It also showed marked genetic differences in those individuals who have ME/CFS concerning the immune system and neurological system.

Acute infections and acute stress and trauma can both do this, like a severe 'fight or flight' response. This is why patients and individuals with a history of trauma, abuse or adverse childhood events [ACEs] are more likely to have these conditions.'

End of Pulse quote.



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Ah OK so from reading through am I right in thinking it is 'DR Burnt Out' that wrote it - will look up who that is later

But intrigued particularly by this, which is going on, straight after the DecodeME findings paras in this article, (I don't know whether it is attempting to use non sequitur by doing so - hence my next question) to then suggest CFS< Fibro and PTSD all have similar etiology.

And then rambles into using this suggestion to then push about the 'neighbourhood health' move being about basically 'MUS-ing' ME/CFS - cost after all they are all the same according to people like this.
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bobbler said:
Ah OK so from reading through am I right in thinking it is 'DR Burnt Out' that wrote it - will look up who that is later

But intrigued particularly by this, which is going on, straight after the DecodeME findings paras in this article, (I don't know whether it is attempting to use non sequitur by doing so - hence my next question) to then suggest CFS< Fibro and PTSD all have similar etiology.

And then rambles into using this suggestion to then push about the 'neighbourhood health' move being about basically 'MUS-ing' ME/CFS - cost after all they are all the same according to people like this.
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SO my question is that if DR Burnt out is claiming fibro, CFS and PTSD are 'overlapping conditions with similar etiology' in an article which has almost certainly been written entirely because the DecodeME results are out

Then how much does the DecodeME findings say that these aren't 'overlapping conditions' ? I guess I'm looking to understand what is the correct wording vs the genetic findings of 8 genes help us certainly in pointing towards where answers might be in mechanisms and potentially cures/therapies that might help.

Is there anything similar for fibro, PTSD or any other conditions we get lumped and dumped with?

And of course the finding of anxiety and depression having a very different pattern I guess means that their claims of either caused by or 'perpetuating after the initial virus' (which they've hidden in the term 'central sensitisation' now?) can be shown to be back to front or alternatively putting unnecessary 'mental illness pathology labels' on the actual cause even where association might be claimed because bullying, stress, misery, pressure on the body via eg the financial and punitive and unkind regime isn't actually the 'stress, depression or anything else pathological' that bps type people want to do a switch and bait as when they start using that in a 'causal/perpetuator claim' instead of saying 'and on top of that making the ME/CFS worse directly, it is going to make people pretty miserable in different ways, if this is done to them etc as it is unkind [just like it would if it was done to those who have cancer or Parkinsons or MS or heart problems]'.


ie can we start to nail an answer to this one, because I think it is pretty important to both nail it, and to show that we are far above these 'pretenders/contenders for the gravy train' in being able to understand what gene findings can confirm isn't true any longer - which has been used in the past merely by assertion with no evidence, vs what it can't but it probably makes very unlikely/it a silly thing for them to keep saying now it shows they aren't connected.

JUst because you can make people miserable or anxious as well as their ME/CFS or heart condition worse by bullying them financially, refusing adjustments or acknowledgement of the disability level, or spreading rumours its in their mind doesn't of course make these illnesses 'connected' other than that behaviour towards human beings being a very bad thing for which there are actions--> consequences, and no 'CBT nonsense' doesn't either mediate it or make it go away by thinking differently about being bullied or broke or magicking up health you don't have to be able to tackle said things as those doing the actions might like to pretend it claims I assume.


And how have they gotten away with this central sensitisation nonsense claim straight after DecodeME, is it because they didn't mention which 8 genes they were? Let's be honest to me this claim of 'becoming more sensitised' or we all know for many it means 'being over sensitive' and the PTSD/trauma nonsense is still clearly about trying to push the only CBT they know that even really works, but only when someone actually has a proper matched diagnosis of eg a phobia or very specific PTSD incident which is now over but/and can be tackled with exposure therapy. That's what their HPA made-up stuff seems to illogically have been concocted around the assumption of. We just need to learn to 'calm our system when we build up our exposure'. It's the same nonsense fear-aversion not very well disguised at all and if those pushing it don't know that then they shouldn't have a license to be talking to or about any patients on any of these topics because they don't have the capacity to be understanding or learning in the area they think they are operating in clearly.

Grrr
 
bobbler said:
Do we have a confirmed author for this one yet? I think it's important and I'm surprised someone can write something which after all isn't 'just news' when they've put a misinterpretation on it for those reading it to know who is behind it?
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OK I've been looking into who 'Dr Burnt Out' is (apparently it is a moniker sometimes used in some places as a generic term to keep anonymous)

Except googling it AI comes up with this as a suggestion:

The author writing articles under the moniker "Dr Burnt Out" in Pulse magazine is Maya Dhillon, according to Muck Rack. She explores the concept of "Stockholm syndrome" experienced by GPs within a broken system.
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It seems she might have written that one article, but I'm not sure how it works and whether that means anything more than one article, if that is correct from Muckrack, of all the ones put under Dr Burnt Out
 
This is why patients with a history of trauma, abuse, and adverse childhood events are more likely to have these conditions [ME/CFS, fibromyalgia and PTSD]
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ME/CFS, fibromyalgia and PTSD are overlapping conditions which often have a similar aetiology
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And the robust evidence for that (particularly for ME/CFS v. PTSD), including effect sizes and genetic commonalities, is...?

Also, if it is "often" not always, then that alleged feature is not cardinal, and could just as easily be a misinterpretation, based on superficial similarities arising from inadequate clinical assessments and hypotheses.

It could just as easily be the generic and predictable consequences for people being subject to endless misdiagnosis, and the associated mistreatment it brings. That might be the causal factor in common driving that secondary feature, not any underlying primary causal process.

Problem, of course, with that possibility is the shabby light it casts upon the behaviour of the pros.
 
Radio New Zealand: 'Genetic links found in ME/CFS patients'

"New research has found myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is partly caused by genetics, related to the immune and nervous system.

The study - the world's largest into the condition - identifies DNA differences that raise the risk of developing ME/CFS and tells us about possible biological causes of the illness."
 
Sean said:
And the robust evidence for that (particularly for ME/CFS v. PTSD), including effect sizes and genetic commonalities, is...?

Also, if it is "often" not always, then that alleged feature is not cardinal, and could just as easily be a misinterpretation, based on superficial similarities arising from inadequate clinical assessments and hypotheses.

It could just as easily be the generic and predictable consequences for people being subject to endless misdiagnosis, and the associated mistreatment it brings. That might be the causal factor in common driving that secondary feature, not any underlying primary causal process.

Problem, of course, with that possibility is the shabby light it casts upon the behaviour of the pros.
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I wonder whether anyone has studied the overlap of trauma, ACE’s, abuse etc and cancer?
 
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