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

[Jonathan Edwards]

Psychiatric illness presents as behavioural and mood abnormalities

Psychiatric illness can present with all sorts of other things. And neuropsychiatric disorders can often involve severe pain, inability to eat, orthostatic intolerance etc..

Psychiatric illness is a completely different category from 'the psychological model' which is neither psychiatric nor somatic. The likely reason why people with ME/CFS die without being fed is that they are classified as neither medical nor psychiatric. It is actually written into medical guidance as such.

 

[Kiristar]

Most people with m.e have clear psychological/ psychiatrist assessment & a host of physical symptoms, such as muscle pain, sore throats,, orthosatatuc intolerance, morphine requiring pain , some that are objective and not explained by deconditioning , such as failure to perform of 2 day testing. . Should be end of. Psychiatric illness presents as behavioural and mood abnormalities, this is not the m.e presentation. This psychological model + de conditioning was pretty much held up solely by CBTGET being deemed effective

It seems Cartesian Dualism has a lot to answer for. I read a really interesting study that highlighted how arbitrary the medical classification system between mental and physical was, in that many so-called psychiatric conditions have significant somatic symptoms whereas many diseases considered exclusively physical frequently can include psychiatric symptoms. It gave good examples, I wish I could find it agsin.

My mum has a very physical gallbladder infection since Christmas that caused mood changes and even psychosis but which was first diagnosed by the hospital as depression and treated with antidepressants. Six months later it's now advanced to severe sepsis stage, and she's been correctly diagnosed in a different hospital. It all happened because of very visible psychological symptoms leading to other symptoms (pain and a possible uti bladder issue) being overlooked so that the medical problem was treated as a psychological illness.

 

[mariovitali]

I strongly believe that OCD, ADHD, depression, anxiety disorders and several other psychiatric disorders are related to mitochondrial function and impaired metabolism.

 

[Nightsong]

Re Carson: what puzzles me is why he is seen as an expert on ME/CFS. The only relevant link seems to be that, according to Carson's declared interests on the SMC's website he "led writing of the Scottish Good Practice Statement in ME/CFS in 2008" - but how did he manage to get involved in leading that? Searching PubMed for 'Carson A[Author] AND "chronic fatigue syndrome"' gives me two results: the Anomalies paper, and as a co-author on a paper about brain fog (link) so it is not as if he has a relevant publication record.

The picture that emerges from the blood chemistry - high TyG, high TG/HDL ratio, hyperglycaemia (glucose, HbA1c), a modest ALP rise - BMI may not be an ideal metric to use to assess adiposity (waist-hip ratio, perhaps?), and given the results from the other recent Edinburgh paper many of the UK Biobank self-reported lifetime CFS cases are undoubtedly not ME/CFS.

I don't see why ME/CFS should be categorised as neuropsychiatric. Neuropsychiatric disorders surely should involve a disturbance of mood, perception or behaviour and there is no evidence for any such disturbance as being intrinsic to ME/CFS. Brain fog is a transdiagnostic symptom that can be e.g. a sequel of chemotherapy.

Also, some disorders that are widely thought to be purely "all in the head" may not be - anorexia nervosa seems to be widely thought to be a mixture of psychiatric & psychological, and historically it was considered a purely hysterical disorder (once being called anorexia hysterica or apepsia hysterica) - yet a GWAS reported in 2019 (link) showed a metabolic component - unfortunately such findings do not seem to have produced much in the way of follow-up research.

 

[Tia]

I think the problem is that ME is widely perceived to be neither a physical illness nor a mental illness, but an imaginary or made up illness. It is seen as a set of behaviours rather than a mental/physical illness. It might be compared to a phobia of spiders, which may be deeply rooted and subconscious, but is not usually thought to be a physical/mental illness, more a behavioural adaption that can be unlearnt.

When we say 'it's not all in our heads', we get misunderstood by people (purposefully in the case of Carson et al I tend to think). The misunderstanding is that we're against the idea that ME is a mental illness because of our own prejudices against mental illness. I think it's important to emphasise that we want biomedical research because behavioural and psychological treatments have not been effective.

That said, I think the phrase 'it's not all in their heads' coming from a scientist like Chris Ponting is not necessarily a bad thing. Some Guardian readers and Carson etc. may misunderstand but the majority of people will take on board the simple message that ME is a physical condition not an imaginary one.

Edited for clarity.

 

[Jonathan Edwards]

Re Carson: what puzzles me is why he is seen as an expert on ME/CFS.

Isn't it just that Carson had a link with Sharpe and subsequently became 'our man in Scotland' for the broader BPS community. SMC cliques are fairly narrow it seems and I suspect do not follow any particular expertise.

I don't see why ME/CFS should be categorised as neuropsychiatric. Neuropsychiatric disorders surely should involve a disturbance of mood, perception or behaviour and there is no evidence for any such disturbance as being intrinsic to ME/CFS. Brain fog is a transdiagnostic symptom that can be e.g. a sequel of chemotherapy.

I am not proposing to 'categorise ME/CFS as neuropsychiatric'. But I think brain fog and possibly other fatures can reasonably be seen as neuropsychiatric effects of whatever is at the root of it. Neuropsychiatric effects of drugs include confusion, memory change, changes in perception. Pain and fatigue may be 'changes in perception' due to chemicals interfering with signal pathways.

For chemotherapy I think brain fog could reasonably be called an adverse neuropsychiatric effect.

 

[Jonathan Edwards]

That said, I think the phrase 'it's not all in their heads' coming from a scientist like Chris Ponting is not necessarily a bad thing. Some Guardian readers and Carson etc. may misunderstand but the majority of people will take on board the simple message that ME is a physical condition not an imaginary one.

That may be right but I worry.

1. They will get the simple message but then say 'nah, they are always saying that, you can tell it's in their heads'. (The non-Guardian reader is probably mostly pretty convinced of that.)

2. The argument needs to be used at the right time - which may not be for this paper.

3. Chris is up against a group of people known as the Medical Profession who have spent their lives manipulating language to generate spurious arguments in the way Carson does. A lot of physicians also talk reasonable sense when seeing people with diabetes and ulcerative colitis but even the ones who aren't paid up BPS members tend to do a sideline in language manipulation when they want to get rid of the patient (maybe to a convenient therapist). The paid up ones have spent their entire lives doing this to earn a living and various honours.

I think when the time comes the thing to say is that these data show that this is not an imaginary disease that someone has dreamt up. It is a real biological process the cause of which we now know involves...

In a way the important point is not about whether patients were imagining an illness but whether 'ME/CFS experts' were imagining an illness. If there are genetic data than can be taken as causal, and they are found specifially in the group of people identified by ME/CFS then they were not. Even the Daily Mail readers know that people say they have ME/CFS because some doctor told them so. If the doctors were right then so are the patients.

 

[V.R.T.]

even the ones who aren't paid up BPS members tend to do a sideline in language manipulation when they want to get rid of the patient (maybe to a convenient therapist).

This is the thing I find most chilling about modern medical culture. If you throw a stone you hit a story of someone who's cancer or stroke or MS or whatever was missed because their doctors slickly dismissed their concerns and didn't do the necessary tests.

So it isn't just us that bear the brunt of this toxic part of medical culture. It is causing a huge amount of harm every day.

 

[dave30th]

Isn't it just that Carson had a link with Sharpe and subsequently became 'our man in Scotland' for the broader BPS community.

yes, he and Stone were students of Sharpe. in the SMC's mind, they're essentially interchangeable as experts. Stone was asked to comment on the Wilshire et al PACE reanalysis. The SMC has shifted slightly since the PACE days. Now they'll always have at least one of the ideologues, but they also seem to recognize they can't leave it at that and also need to include someone else reasonable.

 

[NelliePledge]

“someone reasonable”rather than someone else reasonable I reckon

 

[dave30th]

Trial By Error: Edinburgh Study Links ME/CFS to "Blood-Based Biomarkers" | Virology Blog

By David Tuller, DrPH Last fall, a team from the University of Edinburgh released a pre-print called “Replicated blood-based biomarkers for myalgic encephal ...

virology.ws

 

[Simon M]

I am beginning to think that this paper may end up being a rather useful dress rehearsal for the real thing

I think that's the most important point. Based on the discussion of skin through here, it's still not clear what the best way is to respond and present an argument.

I am very wary of the risk going down mine/body rabbit hole. I think we can be sure that those wedded to a psychosocial explanation of the illness will attack whatever the findings are.

Maybe DecodeME marketing people are working on this, but I think it's quite a tough problem. I wonder if there's a good process for getting to grips with this?

 

[bobbler]

That may be right but I worry.

1. They will get the simple message but then say 'nah, they are always saying that, you can tell it's in their heads'. (The non-Guardian reader is probably mostly pretty convinced of that.)

2. The argument needs to be used at the right time - which may not be for this paper.

3. Chris is up against a group of people known as the Medical Profession who have spent their lives manipulating language to generate spurious arguments in the way Carson does. A lot of physicians also talk reasonable sense when seeing people with diabetes and ulcerative colitis but even the ones who aren't paid up BPS members tend to do a sideline in language manipulation when they want to get rid of the patient (maybe to a convenient therapist). The paid up ones have spent their entire lives doing this to earn a living and various honours.

I think when the time comes the thing to say is that these data show that this is not an imaginary disease that someone has dreamt up. It is a real biological process the cause of which we now know involves...

In a way the important point is not about whether patients were imagining an illness but whether 'ME/CFS experts' were imagining an illness. If there are genetic data than can be taken as causal, and they are found specifially in the group of people identified by ME/CFS then they were not. Even the Daily Mail readers know that people say they have ME/CFS because some doctor told them so. If the doctors were right then so are the patients.

Agree with this and the level of nuance involved. And because of the precision needed to weave through these hand-wave distractions (not 'all' in the mind etc) it is a good time to get the path picked through so that in the future the exactness can be stuck to (with arguments ready when someone uses sophism to muddy it or come back with a question that misinterprets or rephrases it with a straw man)


Just like other things of recent times part of the ruse has been that with one hand the actual briefing to those we encounter eg in medical profession has been the 'imagine they are ill line' whilst the more public PR or assumption has been to lead people to believe it's an argument about 'mental health', as if that which is being offered is somehow sensible and decent (meaning of this word being the one to do with integrity, not just quality-level).

How you can get people who want to believe we don't deserve the time to have the specifics of our queries heard (in the laypersons argument sense) 'because they already know who we are and what our issue is' will at the very least involve nailing that 'it isn't THAT... it's THIS' convincingly from the get-go.

If we don't get the premise of the issue across and control it then all the 'extras' - whether that is medical/technical method detail or someone trying to get the history heard (NB DecodeME seem to be very good at keeping things future-focused so this mention isn't specific to this, which most don't want to hear until they already think there might be something afoot thanks to the conspiracy theory thing, but is also a lot of listening) - are definitely going to be sadly met with glazed over eyes.

 

[JemPD]

Maybe DecodeME marketing people are working on this, but I think it's quite a tough problem. I wonder if there's a good process for getting to grips with this?

I hope they're reading here or can be directed here. It's crucial to get this right & so many advocates (inc myself) have said things in the past that have been counterproductive.

because of the precision needed to weave through these hand-wave distractions (not 'all' in the mind etc) it is a good time to get the path picked through so that in the future the exactness can be stuck to (with arguments ready when someone uses sophism to muddy it or come back with a question that misinterprets or rephrases it with a straw man)

yes

 

[bobbler]

I think that's the most important point. Based on the discussion of skin through here, it's still not clear what the best way is to respond and present an argument.

I am very wary of the risk going down mine/body rabbit hole. I think we can be sure that those wedded to a psychosocial explanation of the illness will attack whatever the findings are.

Maybe DecodeME marketing people are working on this, but I think it's quite a tough problem. I wonder if there's a good process for getting to grips with this?

agree. and remembering that these days even if you manage to avoid an answer from basically giving permission for the rest of the interview being allowed to divert because they can then frame the next question based on the answer (rather than when it doesn't it being a bit strange-looking that the interviewer keeps saying 'but what about mind-body' in response to answers about blood tests)

then these are the days of interviews not just being about the part that is listened to in full but the clip of it, soundbite, social media one-liner and being able to use cherry-picked three words said in future articles

it is very easy once the topic of discussion has been hijacked to someone else's territory for someone to get led by the nose into having words put in their mouth with a question made to look as if it is yes/no that obviously is incredibly nuanced (then sticking a clock on that person, noting the pause on an answer and so on).

and that is before the potential of words in answer to one specific question being pasted without context. Or the specific caveats in the answer being cut out of the eg one sentence reply.

 

[Utsikt]

Maybe DecodeME marketing people are working on this, but I think it's quite a tough problem. I wonder if there's a good process for getting to grips with this?

Marketing people will probably know how to get a message out there, but the science people will have to decide on what the message should be.

The problem with having so uncoordinated associations is that the BPS crowd have already hijacked all of the usual narratives.

OCFN says that ME/CFS is «real», but that you can recover. They say that their dualism isn’t dualistic, but holistic. That they can explain it through «neuroscience».

But a possibility is to screw the BPS crowd and target healthcare in general. Based on «studies» on BPS training programs for HCP, most of them have no clue about what ME/CFS is at the start (and some believe it to be a made up thing), and then they teach them the wrong things.

 

[MrMagoo]

From a comms and PR point of view, I think Chris did the right thing - he used the interview to talk about his study, which is what he was there to do. Silly questions, ignore them. He’s not there to dance to someone else’s tune.

 

[rvallee]

Going from what I typically read/hear out of physicians when they talk about ME/CFS, and how to handle the whole "not in the mind" thing, I'd say the more common attribution is to call it vaguely psychosocial, and that, as a retort, there is nothing offensive to state that there is no evidence for psychosocial anything: causes, mechanisms, treatments, the lot.

This avoids most of the language pitfalls. I guess it will always be considered falsely offensive by proponents of a vague mental illness model, the usual "psychosocial illness is still real", which conveniently makes them fall in the same trap, and is irrelevant anyway since it's been completely debunked anyway.

Judging from recent comments from a nasty reddit thread, about the only defense to this seems to be some even more vague allusion to even more deep-seated psychosocial something or another, but it has the extra bonus of being even more indefensible than "it's a typical medical illness, we just haven't found the causes or precise mechanisms yet", because all general cases of psychosocial issues have been looked at way too many times already, unlike biology there isn't an infinite number of them, and that only leaves entirely individual, and quite silly, neuroses, or whatever.

I guess we'd probably hear "it's not psychosocial, it's biopsychosocial" out of it, seems inevitable when some biology starts being uncovered, but if something is "biopsychosocial" and is not psychosocial, then that only leaves out what reality is: that which continues to exist even when you don't believe in it.

One problem is that the general public doesn't really know what psychosocial means, but they probably get the gist of it, and it's not as if "it's in the mind" actually means anything anyway. But the general public doesn't have to be convinced, it will follow when the medical profession removes its head out of its collective where-the-mind-resides.

 

[bobbler]

The problem is the Carson Stone bait and switch which goes:

They say it proves ME/CFS isn't all in your head.
Now of course if all in your head just means worry and overthinking then that would be true.
But lots of real psychiatric illnesses are all in your head, including of course mind-body problems such as worry and overthinking, perfectly treatable by our therapists.

and the straw man of using the caveat 'all' to excuse crowbarring in that whatever causes these things somehow we have to disprove Popper's theorem (can't prove a negative/absence)

'because what disabled person couldn't benefit from a bit of attitude training' seems to go down fine as long as the spoon of sugar wording is used to soften the message

followed by the lie that 'if that works for some...' then what's the issue with all the money going on that and us carrying on regardless

whilst of course at the same time them focusing on lowering the bar as to what level of evidence counts for 'works for some' or more importantly if any of the therapies everyone is having to empoeror's new clothes/don't mention the war really work much at all or just have made a living on dodgy methods. And of course that's when we get dragged into the bigger issue which is the dodgy behaviour of and regulation of the behavioural therapy industry (which because of its regs includes nhs)

The switch-and-bait seems to be the attitude of (which they used to push scientific psychology out of psychology and replace with iapt/behavioural) the old model of finding out what the cause is and matching the treatment to the cause should be replaced with a lowest common denominator 'that'll do because it is cheap' political solution to 'be seen to offer something' and then making/creating the 'evidence' to suggest when that doesn't work it isn't the 'treatment' but the person.

ie it comes down to their loose redefinitions/reframing of what terms like treatment, therapy, evidence or recovery/improvement are. All only possible as long as they keep it under the categorisation that frees them from the regulations that define those terms in eg drug trials and biomedical illness.

And whilst it is heaviest in ME/CFS and then the initiatives that have stemmed from the same groups the target aim I think has always been to categorise all 'chronic illness' this way, you can feel it for the last decade in the health system that cfs was the label but it was about face fits and the nonsense that other conditions that do have treatments were ruled out was never seen as necessary by most.

Diagnosis into specific pathways that do exist for certain serious illnesses that are technically chronic is a bit of a thorn in the side already. To find a new one, particularly as people keep wanting to connect it to the flagship one of long covid, crossing over that invisible policy-line is I think being sold (by those selling the 'claimed cheap at any cost' therapy for chronic illness) as the Rubicon.

Except quite a lot of those who are caught up by this seem to be happy to keep up the Truman Show because of that misnomer 'that there must be a good reason for it because they are good people'. Hence why the veiling some pretty not-nice stuff in the 'only because we care' trojan horse etiquette.

The mad patients label and slowly brainwashing even medical professionals and laypersons to see certain physical symptoms as now redefined as 'see it think mental health' has been the key initiative of the last 5yrs. BUt yes they don't mean the real department that used to exist but I suspect is suffering from the same initiatives but the behavioural retraining 'new service' politically sold to dump diseases like addiction, anxiety, eating disorders 'to be managed' (out) and treated as 'societal issues' rather than proper scientific medicine, with their eye on things like autism sadly too despite the evidence sitting that one firmly in a different place years ago. It's about rationing and/or the other side of the coin of a market to 'deal with' the leftovers and stop them being a problem.

 

[bobbler]

obesity/the new drugs for treating that of course has been the recent interesting development for this complex trick/issue

None of this of course is obvious sensible pickings to get into when the first hurdle is getting eg a scientific development on ME/CFS heard.

It might however point us to see what other areas have done when walking the tightrope on this and put some conditions over the line into respected biomedical pathways with clinicians who seek more than behavioural therapies for those with it.



I suspect another question that comes with this is that repeating issue on numbers/messaging.

Focusing on the more severe and how serious and impactful it can be on an individual, which most don't know or don't believe when they have someone in that situation put in front of them ('they must have something else'), over citing large numbers which might include those without established ME/CFS as if that will lead to good care rather than knee-jerk 'be seen to offer something quickly and make it cheap and mass market'.

To me it is obvious from watching the story of covid that when you start talking large numbers then the focus/aim switches to 'protect the infrastructure from' as much as anything else.

So citing such numbers without saying clear messages of what each of those gaps or levels could be filled with eg mild people need adjustments and support not 'how to manage your fatigue' is necessary because you leave the solution open people will tell you that what they fancy offering will be 'the fix'.