How should biological researchers present their results about ME/CFS to the media - discussion thread.

[Utsikt]

This thread has been split from Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

The discussion is focussed on how the results of DecodeME that are expected to be out soon, but is relevant beyond that.



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.

 

[Robert 1973]

The difficulty is in saying something which accurately conveys what we want people to understand, is succinct enough for a short interview and comprehensible to an intelligent lay audience.

Psychiatric problems are in the head so it seems a fair point.

But psychiatric illnesses are not all in the head. There are predisposing genes, there may be auto-immunity and other biological causes and mechanisms which extend beyond the brain. As far as I understand, the classification of an illness as psychiatric is largely a reflection of its effects (observed in the thoughts and behaviours of patients) rather than its cause or mechanisms.

And of course the brain is a part of our physical biology, so “all in the head” doesn’t mean it’s not physical – although that is how many people seem to use and interpret it. To me, it’s just not a very useful or scientific term.

But it’s potentially unhelpful to get distracted by these conversations in a 5 minute interview about a research study, which is why I think it’s worth doing some preparation to work out the best ways to respond when when put on the spot in a live interview.

 

[Jonathan Edwards]

But psychiatric illnesses are not all in the head.

In terms of presentation, psychiatric diseases are diseases of the head - as you say this is a classification by the part affected. Some involve processes entirely confined to the head and some do not. If a gene encodes for CNS synaptic housekeeping and is only epressed in the head then a disease due to that gene being faulty will be all in the head. The copies of the gene elsewhere do nothing.

All in the head is a red herring that should not even be raised and if it does get raised it needs pointing out that it isn't what this is about.

And of course the brain is a part of our physical biology, so “all in the head” doesn’t mean it’s not physical

Nothing is 'not physical' that actually occurs. Occurring is physical. Physics is the study of occurring.

But it’s potentially unhelpful to get distracted by these conversations in a 5 minute interview about a research study, which is why I think it’s worth doing some preparation to work out the best ways to respond when when put on the spot in a live interview.

Right. So maybe the key point is not to say anything about any data proving ME/CFS is not all in the head. I see it as a mistake to try to reach over the the 'lay public' on this. The progress in the science is about showing that the ME/CFS diagnosis picks out an identifiable biological cohort. If you want to make it interesting for the public the message is that ME/CFS is not just a category made up to give idle or inadequate people an excuse to be ill. It shows that there is something wrong with their biological processes, and not just the ones we call thoughts.

I am beginning to think that this paper may end up being a rather useful dress rehearsal for the real thing, sorting out all the thngs not to do. The main, and useful, finding is that in a large cohort recruited via a Biobank almost all biochemical findings are in the normal range. There does not seem to be any replicable evidence of an inflammatory tendency.

 

[chillier]

'in your head' is an idiom meaning 'isn't real / based on worry and overthinking'. It's dismissive to say that about any disease whether psychiatric or of the body. Personally I think it's even a little flippant to say to someone who really is just a bit worried about something.

 

[Jonathan Edwards]

'in your head' is an idiom meaning 'isn't real / based on worry and overthinking'.

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.

 

[Cinders66]

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

 

[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]

Copied post

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, elevated glucose & HbA1c & ALP) - I do wonder if 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]

Copied post

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.

 

[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 here, it's still not clear what the best way is to respond , or how best to present an argument.

I am very wary of the risk going down mind/body rabbit holes. 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.