Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

[Jonathan Edwards]

Carson gets almost everything wrong. He seems to be most annoyed by the idea that psychiatriy is being slighted.

It is a pity that there was any mention of diagnostic tests really. That is not what this sort of research should aim for. But Carson doesn't even get the history of the biology right.

I agree with Initial Conditions that this is not a paper to make a song and dance about. It probably provides some useful information on what matters when selecting cohorts but I don't see lipid abnormalities providing a major lead.

 

[dave30th]

I did this interview with Chris when the pre-print was published:

 

[MrMagoo]

Meh the average Joe will absorb the headline, the headline implies ME can be seen in blood samples. Job done. 95% of people dont care about Carson whoever he is.

 

[wigglethemouse]

Chris Ponting was on BBC news today around 7.30 a.m. although the Science Media Centre preceded him. I didn't hear the full interview, unfortunately.

Comment about it on X

"Frustrating the Radio 4 Today team consulted the Science Media Centre for the piece on a blood test for ME. The Science Media Centre’s behavioural beliefs about ME have been debunked so many times it is incredible anyone still talks to them."

 

[dave30th]

I also don't see any significant overlaps with the results in Pu et al. - has Carson even skimmed through either paper, or is he just winging it?

My impression was that he wasn't saying the specific findings overlapped so much as saying that analyzing blood from those suffering from mental/emotional disorders, in this case depression, can simillarly yield biological markers.

 

[dave30th]

I doubt that this can be seen as stigmatising or derogatory.

very stigmatizing of the "deconditioned"???

 

[dave30th]

I also think Carson has never done any research on ME/CFS, yet he has been able to comment as an SMC expert on multiple ME/CFS studies.

that's a good point, but has the other guy, who reviewed it positively, done any ME/CFS research?

 

[Jonathan Edwards]

that's a good point, but has the other guy, who reviewed it positively, done any ME/CFS research?

No but he is a reasonable independent expert rather than an expressor of sour grapes who gets his sums wrong.

 

[Robert 1973]

Chris did very well, some great responses to questions that weren't particularly helpful from the reviewer.

Yes, I thought the interviewer, Nick Robinson, was poor and clearly under the influence of the SMC. Hard to know how best to respond to those sort of questions but perhaps a good rehearsal for when the DecodeME results are published. I agree that Chris did well by largely ignoring the questions and talking about the study. However, I think it would be worth spending some time working out how best to respond to that type of questioning (eg Are you claiming this proves it’s not all in the head? … It’s a combination of physical and mental, isn’t it?) when put on the spot on live TV or radio. Chris’s strategy may have been right but I would be inclined to point out, as politely as possible, that they are not very useful or scientific questions. Are Parkinson’s, Alzheimer’s, brain cancer, schizophrenia or autism “all in the head” or a combination of mental and physical? What about autoimmune diseases or auto-inflammatory disorders? What we know from the data is that the psycho-behavioural therapies that have been prescribed for ME/CFS for more than 30 years are ineffective and harmful. What we need to understand are the biological causes and mechanisms of ME/CFS in order to develop effective treatments. This study is a small step towards such understanding. The hope is that DecodeME will be a giant leap.

Huge thanks to Chris and his colleagues for all their great work.

 

[bobbler]

Yes, I thought the interviewer, Nick Robinson, was poor and clearly under the influence of the SMC. Hard to know how best to respond to those sort of questions but perhaps a good rehearsal for when the DecodeME results are published. I agree that Chris did well by largely ignoring the questions and talking about the study. However, I think it would be worth spending some time working out how best to respond to that type of questioning (eg Are you claiming this proves it’s not all in the head? … It’s a combination of physical and mental, isn’t it?) when put on the spot on live TV or radio. Chris’s strategy may have been right but I would be inclined to point out, as politely as possible, that they are not very useful or scientific questions. Are Parkinson’s, Alzheimer’s, brain cancer, schizophrenia or autism “all in the head” or a combination of mental and physical? What about autoimmune diseases or auto-inflammatory disorders? What we know from the data is that the psycho-behavioural therapies that have been prescribed for ME/CFS for more than 30 years are ineffective and harmful. What we need to understand are the biological causes and mechanisms of ME/CFS in order to develop effective treatments. This study is a small step towards such understanding. The hope is that DecodeME will be a giant leap.

Huge thanks to Chris and his colleagues for all their great work.

The thing is that every minute matters so by drawing into that nonsense the risk is it opens up more etc

I’ll have a listen but will be intrigued to hear what laypersons might see of an interviewer effectively showing their hand if they are keeping asking something which the study isn’t about and is some side debate - it would be different if it was that there was eg some massive flaw in the method that was being ducked like when politicians sidestep the direct question but maybe the ‘are you sure it’s not all in the head’ type stuff actually comes across to most people like grammatically nitpicking at best. Or very strange to the point of holding an interest even.

Whilst lots of people might have all sorts of dodgy ideas of what cfs is it’s mainly those in certain bubbles or doctors on comments sections and certain circles that genuinely think that dualist blather (that is sold as an inversion of meaning) is of relevance when a medical illness has a new biomedical discovery.

To not entertain changing the topic might look less like avoidance and more like not taking the bait

 

[Trish]

Yes, I thought the interviewer, Nick Robinson, was poor and clearly under the influence of the SMC.

I agree it was poor, but I suspect Nick Robinson just read out whatever the ediitors put in front of him. They do a 3 hour news program with 2 presenters and lots of interviews on anything and everything, but mostly politics and current affairs, it's not a science or medicine program. I doubt he had time to read or think about the subject. It's the editors I blame. They should have realised the SMC comment was nonsensical. Or better still the BBC should employ more editors with scientific understanding, and stop just parroting whatever nonsense the SMC feed them.

 

[BrightCandle]

I agree it was poor, but I suspect Nick Robinson just read out whatever the ediitors put in front of him. They do a 3 hour news program with 2 presenters and lots of interviews on anything and everything, but mostly politics and current affairs, it's not a science or medicine program. I doubt he had time to read or think about the subject. It's the editors I blame. They should have realised the SMC comment was nonsensical. Or better still the BBC should employ more editors with scientific understanding, and stop just parroting whatever nonsense the SMC feed them.

The SMC has had deep access to the BBC since the 1980s, its tendrils are influencing everything across the entire organisation. Its set the default understanding for the disease and thus their viewpoint forms the basis of everything the BBC does, their "experts" on the condition will be SMC trained and it will get into the scripts. The entire organisation is running on SMC misinformation.

 

[Utsikt]

I really wish someone could give an answer like this when asked if ME/CFS is «all or some in your head»:

We have no reason to believe that ME/CFS is in your head. Unfortunately, medicine has a history of dismissing illnesses we don’t understand yet as psychological, especially when it relates to women. Many will be familiar with how endometriosis has been treated.

For more than a decade, we’ve known from large studies that psychological therapy and exercise does not work for ME/CFS. In fact, it makes many more ill.

Or course, the patients have been trying to tell us this for much longer. But most of medicine and society at large have not listened, in part due to our own prejudice.

Fortunately, scientists are making progress in uncovering the cause of ME/CFS. But because it has been neglected for so long, the research receives much less funding than other similar illnesses. I hope the government listens and make things right by these patients.

 

[Robert 1973]

I really wish someone could give an answer like this when asked if ME/CFS is «all or some in your head»:

We have no reason to believe that ME/CFS is in your head. Unfortunately, medicine has a history of dismissing illnesses we don’t understand yet as psychological, especially when it relates to women. Many will be familiar with how endometriosis has been treated.

For more than a decade, we’ve known from large studies that psychological therapy and exercise does not work for ME/CFS. In fact, it makes many more ill.

Or course, the patients have been trying to tell us this for much longer. But most of medicine and society at large have not listened, in part due to our own prejudice.

Fortunately, scientists are making progress in uncovering the cause of ME/CFS. But because it has been neglected for so long, the research receives much less funding than other similar illnesses. I hope the government listens and make things right by these patients.

Yes, something along those lines would be an excellent response.

 

[Jonathan Edwards]

I think there is an opgoing problem here that needs to be tackled by a pre-emptive explanation.

Bodily diseases are real.
Psychiatric diseases are real.
What people call 'psychological' illness is neither of these. It is a supposed category of illness that is purely caused by unhelpful thoughts. Unlike the other two it is a concept based on cause and that cause is speculative at best andharmfully inaccurate at worst.

Carson tries to finesse the distinction by comparing 'all in the head' as an imagined illness that does not really exist with 'all in the head' meaning psychiatric. Psychiatric problems are in the head so it seems a fair point. BUT Wessely specifically said that he thought 'ME' was the non-existent sort - just an idea of being ill. And Carson is heavily committed to the idea that ME/CFS is perpetuated by unhelpful beliefs or conversion or whatever and can be addressed with psychotherapy. He talks of mind-body interaction, so we are back to the causal 'psychological' meaning.

I think people researching ME/CFS need to be clear that clear evidence of causal biology excludes a purely psychological illness. But note that this would be available from genetic data but the findings in Beentjes may simply be correlations and are compatible with changes in lifestyle that might be downstream of unhelpful thoughts. So I don't think the Beentjes paper contributes at all to this argument. Any positive results from DecodeME will do.

Various strands of evidence are pointing to a neuropsychiatric component to ME/CFS. And in a sense eveyone here is convinced that it does have a neuropsychiatric component - brain fog is neuropsychiatric if it is a problem with thinking due to a biological process other than just unhelpful thoughts.

The debate will re-surface for DecodeME. If there are positive data the arguments will be much easier to make, but I think there may still be room for getting things clearer.