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

[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, unlike what many believe.

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. And I would emphasize the belief part. It is a belief, it really has no meaningful evidence.

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'), vs 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'.

 

[Kiristar]

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.

I worked in Marcomms for a while and not being lured into answering and instead deflecting by returning to the key message is a certainly a very valid strategy in response to ambush or impossible to win lines of questioning.

You would think that a study the size of DecodeME would be perceived as methodically robust if explained, which should make things a bit easier.

As @Simon M (sorry can't figure out multiquote) says hopefully the Decode PR team are all over the potential messaging and optimal approachs against BPS lines of attack.

 

[MrMagoo]

Journalists, especially on UK tv are all trotting out the “it is real people, used to think it wasn’t but we know that was wrong” line. In the court of public opinion, it’s real, it’s not made up or “all in the mind”.

The fight with medics and scientists is a different matter, but that isn’t one that’s fought in 5 min tv interviews.

 

[bobbler]

I know that this one isn't research-focused, considering that the topic I assume is how do we prep and think about the upcoming eg gene results, but I can't help noting that eg the MS Awareness Week motions had quite specific asks and did well at dealing with the spectrum and stratifying those different needs: https://edm.parliament.uk/early-day-motion/63527/multiple-sclerosis-awareness-week

"That this House marks Multiple Sclerosis (MS) Awareness Week from 26 April to 4 May 2025; recognises the unpredictability and variable presentation of the disease in the 150,000 living with MS in the UK; notes the need to provide individualised support to manage the unique symptoms and needs of each person living with the condition; calls on the Government to ensure neurology is a priority of the NHS 10-Year Plan so that timely diagnosis and treatment can be accessible to all; acknowledges the need to empower employers to make work more inclusive and better support people with MS to stay in good-quality employment for longer; and highlights the importance of protecting PIP payments that provides vital support to help sufferers manage extra costs associated with living with the disease and accessing work."

I am aware that it isn't like-for-like regarding the position that MS might be in (see link to response below) vs ME/CFS for a lot of different reasons but either way being able to in a community-agreed way not leave the 'ask' open-ended seems important.

I also find it interesting to see what is seen as a 'reasonable and fair request' from other conditions vs how we have to bend and scrap and blunt our words etc.

the reply from the minister is here: https://hansard.parliament.uk/commo...25050123000004/MultipleSclerosisAwarenessWeek


I don't know how we move to the point of being able to say and 'out' that its all very well overwhelming soundbites with suggesting 'a little bit of change in attitude or thinking helps everyone' as if it is an added extra that wasn't actually something harmful..

to outing the fact that this full list of items is something ME/CFS probably needs to put in place from scratch because said 'therapy' has influenced their rights and standing 'because maybe they just need motivating instead of adjustments' has been what said dodgy bps ideas have been really doing and standing in the way of access to any of these things or covering the back of those who do things counterproductive to someone getting worse from their ME/CFS etc.

It's giving exhausted people struggling to manage a full-time job, who might recover if supported with part time or flexibility, that [adjustment support] instead of leaving the default in place of: "or maybe until they've gone to CBT in their lunch hour they haven't proven that it won't cure their issue" current misinformation. And wilful ignorance of what the CBT even is being allowed as a defence.

and more importantly being a bit more precise about the what and who of each point above based on this issue of such outdated 'therapies' or 'ideologies' lingering with their misinformation has led to problems across all of these points (instead of helped). In quite a lot of cases it isn't a case of something 'extra' we need just what is there being replaced by something that isn't counterproductive would be a start.

But the 'extra' part is obviously the whatever it is has a more open-minded and less vested interest focus on what might be helpful in the future following eg any discoveries or developments about what the condition is..

We obviously can't start naming any other illness, but that doesn't mean that we shouldn't be doing research to benchmark what is reasonable and normal regarding discourse and asks - that I agree with, whether we say it out loud or not will take me more thinking (I'm not sure it is helpful)


But at best in my mind I'm thinking of something along the lines of 'even if it is we are talking about whether we offer sprinkles on the side of the ice-cream to those who might benefit from them too' discussion ........ as a distraction from the 'what are we doing about the fact there is none of these basics in place and no actual medical care even for the most severe, who aren't even currently being acknowledged and do we even know how many there are etc'. - is it OK if we are allowed to focus on those basics please for once rather than getting talked over, or all monies/funds put into that as if it helps

 

[MrMagoo]

I know that this one isn't research-focused, considering that the topic I assume is how do we prep and think about the upcoming eg gene results, but I can't help noting that eg the MS Awareness Week motions had quite specific asks and did well at dealing with the spectrum and stratifying those different needs: https://edm.parliament.uk/early-day-motion/63527/multiple-sclerosis-awareness-week




I am aware that it isn't like-for-like regarding the position that MS might be in (see link to response below) vs ME/CFS for a lot of different reasons but either way being able to in a community-agreed way not leave the 'ask' open-ended seems important.

I also find it interesting to see what is seen as a 'reasonable and fair request' from other conditions vs how we have to bend and scrap and blunt our words etc.

the reply from the minister is here: https://hansard.parliament.uk/commo...25050123000004/MultipleSclerosisAwarenessWeek


I don't know how we move to the point of being able to say and 'out' that its all very well overwhelming soundbites with suggesting 'a little bit of change in attitude or thinking helps everyone' as if it is an added extra that wasn't actually something harmful..

to outing the fact that this full list of items is something ME/CFS probably needs to put in place from scratch because said 'therapy' has influenced their rights and standing 'because maybe they just need motivating instead of adjustments' has been what said dodgy bps ideas have been really doing and standing in the way of access to any of these things or covering the back of those who do things counterproductive to someone getting worse from their ME/CFS etc.

It's giving exhausted people struggling to manage a full-time job, who might recover if supported with part time or flexibility, that [adjustment support] instead of leaving the default in place of: "or maybe until they've gone to CBT in their lunch hour they haven't proven that it won't cure their issue" current misinformation. And wilful ignorance of what the CBT even is being allowed as a defence.

and more importantly being a bit more precise about the what and who of each point above based on this issue of such outdated 'therapies' or 'ideologies' lingering with their misinformation has led to problems across all of these points (instead of helped). In quite a lot of cases it isn't a case of something 'extra' we need just what is there being replaced by something that isn't counterproductive would be a start.

But the 'extra' part is obviously the whatever it is has a more open-minded and less vested interest focus on what might be helpful in the future following eg any discoveries or developments about what the condition is..

We obviously can't start naming any other illness, but that doesn't mean that we shouldn't be doing research to benchmark what is reasonable and normal regarding discourse and asks - that I agree with, whether we say it out loud or not will take me more thinking (I'm not sure it is helpful)


But at best in my mind I'm thinking of something along the lines of 'even if it is we are talking about whether we offer sprinkles on the side of the ice-cream to those who might benefit from them too' discussion ........ as a distraction from the 'what are we doing about the fact there is none of these basics in place and no actual medical care even for the most severe, who aren't even currently being acknowledged and do we even know how many there are etc'. - is it OK if we are allowed to focus on those basics please for once rather than getting talked over, or all monies/funds put into that as if it helps

I want us putting in the Equalities Act, like they had to put MS in

 

[Lou B Lou]

I want us putting in the Equalities Act, like they had to put MS in

Chronic Fatigue Syndrome is named in the Equality Act 2010 - as an example for making workplace adjustments for disability I seem to remember. If anyone feels like trawling through the Equality Act to locate the mention .....

Disability Classification - The ME Association

How does the government define a disability? Does the government classify ME/CFS as a disability? I ask because I assume that this could have important implications for people who are having problems with benefits, education or work.

meassociation.org.uk

From the Guidance for applying the 2010 Equality Act:

“A man has had chronic fatigue syndrome for several years. Although he has the physical capability to walk and to stand, he finds these very difficult to sustain for any length of time because he experiences overwhelming fatigue. As a consequence, he is restricted in his ability to take part in normal day-to-day activities such as travelling, so he avoids going out socially, and works from home several days a week. Therefore there is a substantial adverse effect on normal day-to-day activities. Day-to-day activities are things people do on a regular or daily basis. Examples include shopping, reading and writing, having a conversation or using the telephone, watching television, getting washed and dressed, preparing and eating food, carrying out household tasks, walking and travelling by various forms of transport, and taking part in social activities.”

.

 

[MrMagoo]

Chronic Fatigue Syndrome is named in the Equality Act 2010 - as an example for making workplace adjustments for disability I seem to remember. If anyone feels like trawling through the Equality Act to locate the mention .....

Disability Classification - The ME Association

How does the government define a disability? Does the government classify ME/CFS as a disability? I ask because I assume that this could have important implications for people who are having problems with benefits, education or work.

meassociation.org.uk

From the Guidance for applying the 2010 Equality Act:



.

I mean alongside Cancer, HIV and MS so we are automatically covered once diagnosed. Those were added purposely to reduce discrimination.

 

[Sean]

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

Yep. It might be disheartening and frustrating to have deal with the psycho-political stuff, but it has to be done.

Also, from the paper:

“Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.” [Near the bottom of page 10.]

Expect wilful misinterpretations of that term.

Something like 'exercise phobia' might have been better.

–––––––––

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.

Psychobehavioural is a better term than psychosocial.

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

Exactly. It appeals one of the oldest prejudices in the book. If your life is not going well it must be your fault. At the very least you must not be handling your troubles optimally, and you need to let 'experts' intervene and educate you on how to 'do it properly'.

It used to be priests and shamans and kings. Now it is experts. Otherwise the same old story.

I think the whole ME/CFS story has shown what a cruel destructive crock that approach can be.

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,

This. It is why stopping the BPS cult is so difficult, why they are among the most protected of all classes. They are far too important in propping up the illegitimate interests of political and financial power.

 

[Kitty]

If we need to discuss positive results from DecodeME, maybe we should talk about it in the same way we'd talk about any other chronic condition.

How would we react if someone asked whether a study showed conclusively that emphysema isn't all in the head? We'd sound surprised and respond that it hadn't occurred to us it might be. If the interviewer came back with "Well, some people have suggested it's all in the head", we'd recommend the interviewer asks them to explain their beliefs.

We're the geoscientists in this discussion, not the flat-earthers. We're happy to talk about scientific findings, but we don't have to engage with the ideas of cranks.

 

[Obermann]

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.

This is an important point! The controversy about the Cognitive Model for ME/CFS is not whether the are psychological symptoms in ME/CFS, but whether there are causal psychological factors or—in other words—whether the illness can be reversed by thoughts available to the consciousness. The technical term for the latter is psychogenic illness. Proponents of the Cognitive Models systematically conflate psychological with psychogenic. We shouldn't fall into that trap, but be clear about the difference.

 

[Sean]

 

[Tia]

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.)

Yes, I was being optimistic but that is definitely a worry. I really hope we can avoid getting too tied up in the mind/body conversation in the press when DecodeME results come out, whatever they may be. We need to focus on what we need moving forwards and how this study could lead into further research rather than rehashing the same old 'is it physical or mental' argument (its such a minefield and very easy to be misunderstood when discussing). Certain people will always try to use the mind/body narrative to decredit us by implying that we don't think mental illnesses are 'real' and that we don't want to consider that we might have a mental illness because of the stigma. It's hard to argue against this in very little time.

We do need media coverage though and so will be asked these questions. Some interviewers, or their researchers, just seem to think 'ah ME, the interesting thing about that is whether it's physical or mental, that's the angle we'll take!' rather than focusing on the actual research being reported.

I'm not sure there's a perfect response. Points I personally would want to get across if I was being interviewed and was asked mind/body questions would be:
- I wouldn't mind if the illness was 'physical' or 'mental', I just want treatments that work.
- Most of us have tried everything.
- Psychological and behavioural treatments haven't worked. They have made many of us worse.
- There is evidence of biological processes underlying the illness.
- There is exciting biomedical research happening and we need more of it.
- We can solve this and doing so will give 100,000s of people their lives back and save the country ££millions.

These points are imperfect and very difficult to cover everything in a 4 minute slot.

But basically, I think focusing on the details of whatever study is being discussed as much as possible is probably a good idea. This is an opportunity to challenge the assumption that ME/CFS is just 'feeling tired', describe the science, and leave ppl with a feeling that this is an exciting area of research with real potential to make change.

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.

This would be great! Just hope we get to a point where we can confidently say the last bit

 

[Tia]

If we need to discuss positive results from DecodeME, maybe we should talk about it in the same way we'd talk about any other chronic condition.

How would we react if someone asked whether a study showed conclusively that emphysema isn't all in the head? We'd sound surprised and respond that it hadn't occurred to us it might be. If the interviewer came back with "Well, some people have suggested it's all in the head", we'd recommend the interviewer asks them to explain their beliefs.

We're the geoscientists in this discussion, not the flat-earthers. We're happy to talk about scientific findings, but we don't have to engage with the ideas of cranks.

I think this is a great approach.

 

[MSEsperanza]

Apologies, not able to read again, push the 'like' buttons on all posts above and refer to the according posts I read while not being logged in but the topic on whether (neuro-)psychiatry is an apt category for ME/CFS reminded me of a related discussion here.

 

[forestglip]

Apologies, not able to read again, push the 'like' buttons on all posts above and refer to the according posts I read while not being logged in but the topic on whether (neuro-)psychiatry is an apt category for ME/CFS reminded me of a related discussion here.

The link formatting got messed up. Here's a working link:

In which way could Psychiatry and Psychology help investigate ME/CFS (and what exactly is Neuropsychiatry?)–Discussion Thread

 

[Robert 1973]

Depending on the the results of DecodeME, a good response to questions like “Are you claiming this proves it’s not all in the head? … It’s a combination of physical and mental, isn’t it?” might be something like:

We now have enough data to say with confidence that ME/CFS is a biological disease (or perhaps more than one disease)*. There is no doubt that ME/CFS affects the brain but there has never been any evidence that thoughts play any role in causing the disease. We also know that therapies based on that assumption don’t work and have caused widespread harm, so it really is time to move on from those type of discussions. Our priority is to understand the biological mechanisms of ME/CFS in order to develop effective treatments and our research will help to achieve those objectives.

* I’m remembering the following comment from Jonathan here:

I think we are beginning to see that ME/CFS really is a disease, or maybe two. I think there is an important question about whether it is one or two diseases - or at least whether the same combination of immune and neural processes is more or less universal or whether they are more modular.