Is it useful to compare CBT in SLE and ME/CFS?

I’ve been wondering whether it’s helpful to compare how cognitive behavioral therapy (CBT) is used in systemic lupus erythematosus (SLE) and in ME/CFS. Both are complex, multifactorial chronic illnesses. Adverse childhood experiences are also thought to increase the risk of developing SLE, and stress is a known trigger for flares in both. But no one debates whether SLE is a physical illness.

In SLE, CBT has been tested in clinical trials and shown to improve psychological symptoms and quality of life. For example, a 2010 randomized controlled trial found that CBT reduced depression, anxiety, and daily stress, and improved quality of life and somatic symptoms in SLE patients. However, it didn’t significantly affect disease activity. CBT isn’t part of routine care in SLE, and it’s not promoted as a treatment for the disease itself.

In contrast, CBT in ME/CFS has often been promoted not just as support but as a treatment for the illness itself, and it is frequently part of routine care. That’s a major difference. Would it help to use SLE as an example to show that while CBT can have positive effects, that doesn’t make it a disease-modifying treatment? Would comparing improvements or subjective test scores in SLE and ME/CFS using CBT help clarify the limits of its effectiveness, or even highlight its ineffectiveness as a treatment for ME/CFS?

I’d be really interested to hear what others think. Can comparisons like this help shift how ME/CFS is understood? Or do they risk reinforcing the wrong messages?

 

I would raise the same questions as Hutan. I doubt there is usable evidence for childhood experience or 'stress' being relevant to lupus. I doubt there is reliable evidence for CBT being any use. I worked with lupus patients for decades; we never used CBT. We tried to handle the disease.

The basic problem is that we have no real evidence base for CBT as far as I can see. All the trials are methodologically dreadful. We don't even have any metrics for whatever this 'CBT' is supposed to be - as far as we know it is dependent on the colour of the psychologist's cardigan, to be flippant.

Maybe you have some evidence that proves us wrong but I think we should just forget the whole idea of 'CBT' and hopefully ME/CFS will move into a realm where such things have been forgotten in the not too distant future.

 

I agree with the replies above from Jonathan Edwards and @Hutan

and emphasise that when I was studying psychology most CBT was very much only intended as something for an 'interim measure' on the coping front ie until the situation has been improved (most psychology issues are actually situational, something 90% was what the literature confirmed back then) or other treatment might be in place and helping. Such as short-term coping tools to stop you having a panic attack aren't really stopping people being stressed or 'the depression' even if they have those it was just to help lessen those odd things. A sticking plaster.

Although there are certain conditions where focusing in eg on a phobia and exposure to it might help and 'be' the condition if the cause has been accurately identified as the type that particular CBT tackles.

But of course as it has been stretched out to mainly be taught in short courses to those who aren't from a proper background they've probably been outright told, if not then it not being inadvertent that they haven't been hinted to be critically evaluative to understand that teaching someone to look at their new brooch when something reminds them of the hellish situation they are in and gives them a panic attack in a cafe isn't 'helping them cope' in the way said therapists delivering it want to extrapolate that to (and throwing more tools or dodgy diagrams at a 'broader' issue certainly isn't eg 'improving stress' as an underlying issue)

and it certainly isn't an excuse to label the person without functional support for a situation that could be fixed (maybe it is a job that needs to be made safe because it has 3 people's workload, maybe it is a problem with something in their household/home) as having dysfunctional thoughts for reacting normally to an abnormal situation nor getting/staying ill when noone does anything.

You'll note there is a reason why these studies they suggest are evidence are never doing long-term measures.

Of course the other thing noted is how open to bias and coercion the surveys and process itself is, so I'm not sure there is any actual change other than people feeling they have to 'throw a bone' for a plethora of reasons to those who delivered it to them (except perhaps those with lupus or RA are in a less vulnerable position than CFS clinics had people where they were liaising with their GP and employer on whether they were being 'compliant').


But I think it might be worse than that. Seeing that the spiel /trope about 'childhood trauma' which is often used to weaponise made-up narratives and labels that are both inaccurate and put people in precarious positions is now being expanded to those with other conditions doesn't fill me with comfort - it is expanding a rather inappropriate and unpleasant power gained off the backs of inaccurate CFS research onto other individuals, unsuprisingly an illness with a similar female-heavy demographic.

 

I did notice the other day when looking at the Versus Arthritis website regarding something else that they'd digressed into a page on fatigue Managing fatigue | Causes, self-help, support and that it ended in a bit on research where they said they were funding studies on 'talking therapies' (quote box below)

but in the 'talk about how you are feeling section' then talked about CBT as a talking therapy ("There are things that can help if you’re feeling low. Your healthcare team may recommend a talking therapy, such as cognitive behaviour therapy – also known as CBT.")- which isn't really even a talking therapy in the way they suggesting 'talking helps' (because the new not really CBTs tend to be one-way 'correction of abberant thoughts' not talking out stresses and getting validation at least, like counselling )

I will agree with you that the spiel seems to be a lot more careful with other conditions they can't as easily brand as functional (and the mislead of 'can't be sure there isn't part psychological cause') and noticed here that it says "can help reduce the impact fatigue has on people" rather than claims it would reduce fatigue itself (which you'll not they are testing in drug treatments)


But I think this is just semantics/branding rather than can necessarily reassure what the precise content is.

Particularly if it is CBT rather than eg access to counselling if someone is genuinely (as the guidelines for ME/CFS sold including it) struggling with grief of what they can't do or relationship issues etc. That is gotten away with because CBT has been kept as a black box term (something I find outrageous given its origins, and how anything to do with people's mind and beliefs should be seen as needing to be more transparent even than medicine), and astoundingly everyone seems happy to just parrot the line given about what it is they are sending people off to (and why it is that way).

The real CBT was stuff developed on a model of eg social phobia or catastrophisation, and the 'delivery style' that the term now seems to be used for actually was developed because it was correct for that small niche of diagnosed people (delivered by someone who could change diagnosis if it was incorrect). I'm not sure there technically is/should be such a thing as generic/transdiagnostic 'CBT' based on the inventors idea of what people should change (normally I'd guess, do things I do and think my way). And I haven't heard of or seen the very good 'fatigue impact' model that you'd think would have started with interviewing the very people they suggest might need support etc.

When what is being delivered is the actually 'drug' equivalent, and everyone is looking at and naming the 'delivery mechanism' ie 'syringe vs pill' equivalent instead as if that bit being used elsewhere means whatever they are re-educating in must be the right thing. So yes who knows what they are actually 'getting'. Or what it does other than makes them put down the right answers to the questionnaire (it is quite a pushy and questioning 'therapy')

And a big difference of course with ME/CFS is that these conditions have physicians running clinics, checking and logging progression vs treatment programmes and actual treatment whether it is specifically for the condition or other things to help with other symptoms (rather than the lie we have when they mean that of claiming CBT to change our thoughts is 'treating symptoms' because thinking we have symptoms is a false belief).



What we currently have now in ME/CFS is that tiny bit of leeway that allowed a line for CBT to be included in the Nice guideline only really 'for those who have other comorbidities' (such as the 'feeling low' section here) being used to keep the old staff who used an entirely different 'spirit' to be delivered by CBT in place being delivered by embedded CBT (which can't exist in theory because you should have to give informed consent). Who are now [still] claiming it 'treats symptoms', ..

...but which cyclically as a claim is only based on old debunked cfs-CBT research where the CBT was 'false beliefs you have symptoms' but because they then bounced that into other conditions like chronic pain/fatigue based on that errant research are now bouncing that back into ME/CFS as if it isn't the same old wine.

SO it might be worth looking into the research you've seen and whether as you trace back the references (and then what those references were based on) whether it actually originates from/got its ideas it would work from the old cfs-CBT literature.

We need a catchy term for this 'technique/tactic' because I feel like I'm doing a bad job of describing it... sounds like another 'somethingwashing' to me (where cfs-cbt is recycled through another condition to make its origins look like lupus rather than false beliefs cfs)?

 

Just to clarify, I’m not advocating CBT as a treatment for ME/CFS or SLE. I share many of the concerns raised here about how it's used and the quality of the evidence behind it.

What I was trying to explore is whether SLE, where CBT is being studied to be used to support patients but not positioned as a treatment for the disease itself, could help illustrate how inappropriate it is to frame CBT as a treatment for ME/CFS. I was thinking in terms of advocacy strategy, not making a case for CBT's effectiveness in either condition. But in hindsight, I realize CBT can’t really be compared directly between the two because it’s applied in completely different ways. And I was thinking that maybe those CBT studies in SLE can be used as an example to show that people may experience an increase in subjective test scores but not in objective ones, and that those subjective increases do not mean that it can be used as evidence that an illness is psychological.

As for the trauma association, more specifically, I was referring to Adverse Childhood Experiences (ACEs). The theory behind this in SLE is that "exposure to serious stressors early in life may affect immune function and promote inflammation, potentially increasing the risk of developing an autoimmune disease like lupus" (https://www.lupus.org/news/childhood-abuse-may-increase-risk-of-lupus-in-later-years).

As for stress being a trigger for flares in SLE "Emotional stress -- such as a divorce, death in the family, or other life complications -- and anything that causes physical stress to the body -- such as surgery, physical harm, pregnancy, or giving birth -- are examples of triggers that can set off lupus or bring about a lupus flare." (https://www.lupus.org/resources/what-is-a-flare).

Some argue that the association between ACEs and stress (maybe the associations don't actually exist) and ME/CFS supports a psychological model, but similar associations are described in conditions like SLE (maybe the associations don't actually exist here either) without anyone claiming SLE is “psychological”. That’s why I brought these issues up. Ultimately, such associations alone don’t tell us much about the actual nature of any illness, and whether these associations exist is open to criticism itself.

 

Yes, I do remember seeing this study and it is worth raising. The data look quite convincing initially. The problem I see is that diagnosis of lupus using ACR criteria is actually pretty subjective because it involves making use of things like arthralgia and even rashes (when all of us get rashes now and again). It might seem unlikely that diagnostic ascertainment in lupus is as bad as it is for ME/CFS - where we know it is very bad. But numbers like these depend very much on the mild 'possible lupus' and 'probable lupus' cases of which there may be four times as many as significantly severe lupus.

From the immunological point of view the 'theory' is too vague to be meaningful and is highly implausible in the context of what we know about the immune system. There are people who will always want to find psychosomatic connections (and would argue for it being partly psychological) but I don't think we should be persuaded by this study.

 

That site is seriously below standard on all sorts of things. Sadly, a typical patient organisation site that has made use of input from politico physicians who don't themselves understand the immunology, I suspect. There are lots of technical errors. This is exactly the sort of thing that S4ME factsheets will do better than. Getting divorced will make all sorts of symptoms worse maybe but I know of no evidence for it affecting autoimmunity!!


It is certainly interesting to raise this comparison @hackorbee because I think it illustrates to what extent the problems of disinformation for people with ME/CFS are shared with other more 'recognised' illnesses. I suspect you would see similar guff about multiple sclerosis and Crohn's disease.

 

I think that is plausible. I also think that late diagnosed lupus is more often borderline and diagnostic ascertainment may be further weakened by accumulation of other health problems.

 

I don't think so. The belief that CBT can help with ME/CFS was always that, a belief. There was never any evidence.

Belief is hard to change because there's no appeal to the rational. Also, there's a huge financial interest in giving psychology a disproportionately important role in chronic illness.

So we're basically up against religion and capitalism. Haven't got a prayer.

 

Similar patterns have likely been found for ME/CFS in Norway:

https://www.s4me.info/threads/socio...registry-study-hilland-and-anthun-2023.33011/

 

Why is the BPS model true?
- Because Engel wrote it down.

How did he know it was true? Did he prove it?
- No, he just knew somehow.

It’s funnier when you know that ‘engel’ means ‘angel’ in Norwegian.

 

Having had the displeasure of being very aware of the state of research on this for many years, there is really no point exploring anything here. The whole model is so generic and fatuous that it's impossible to even nail down what it is and it's even less possible to compare anything. Comparative theology is probably a more meaningful discipline, and it still doesn't matter outside of their respective belief systems, or purely out of curiosity.

Is Eastern tradition astrology more relevant to the daily rituals of schoolchildren in North Africa, or is Western tradition astrology? This is an equivalent question, just as substantial. And just as relevant: not even one bit. More precisely: who gives a damn?

At its core is the fact that most of the model and its aims, when applied to us, are blatant lies. As you say, there are pretenses that the CBT is only to help cope with the illness, to promote a recovery mindset, and the ideologues keep saying so, but of course that's a lie. It's meant to be curative, on the basis that the illness is just aberrant thoughts and beliefs, and it has been sold and bought as such. Despite this being completely fraudulent.

There's just no point discussing the meaning and aims of liars and frauds. What they speak is irrelevant as to what they think and aim to do, and ultimately outside of this awful ideology being imposed on us, by force of law, it has exactly as much relevance as comparative slam poetry and its impact on soil erosion.

Some European monarchies had weird traditions of kings pooping in public at court and people fawning over the, uh, gifts. The courtiers can do that if it pleases them, but it was about as relevant to the daily lives of their subjects outside the castle walls as whatever nonsense is going on in the minds of the ideologues pushing their own turds at us. The discipline is just too hopelessly biased.

 

I still think it’s beneficial to be able to explain to regular people that the gift is in fact a turd, and why that is.

 

Does that mean that you would have had lupus according to their inclusion criteria?

If so, so of them might in theory have had ME/CFS instead?

 

From the nurse study:

Data from table 4 for Model E2:

For Model E2 that accounts for PTSD, all CIs go below 1.00, and the p-value is non-significant.

They write this about PTSD in the discussion:

I have no idea what the HR for Model E2 means for the results, but it caught my attention when it dipped below 1 so I thought I should highlight it for others that might be able to make more sense of it.

 

I don’t know but I suspect that CBT can assist in many difficult circumstances. From being diagnosed with a chronic disease, to being put in prison, made bankrupt, homeless etc.

I think the label is a problem. Replace “CBT” with “psychotherapy” or “counselling” or talking therapy”, it’s just a style of therapy. A lot of therapy involves helping you deal with difficult emotions and challenging situations and CBT can do that.

The real problem is how the CBT is applied. Again, you can sub any type of therapy here. Are you trying to stop people having negative thoughts regarding their illness altogether and at any cost? Because the CBT I had did not allow for any acknowledgment of pain, or to rest and recover from pain. A CBT just reframing the “nobody believes you have ME and there’s no care and no treatment” to “things change, do a bit of activism and hope things change” would be ok.

 

I'm not convinced it always is the same.

I don't mean the underlying aims, more that CBT tends to be offered as a fixed course. It runs on rails, is delivered in measured doses, and people do it for a set number of weeks.

It's a weird setup when you think about it. People with psychological injuries aren't put through a machine that's expected to improve their condition in six weeks; treatment is adapted to suit them rather than the therapist, and it's acknowledged that recovery takes time and is often complicated and incomplete.

It almost suggests CBT for pain and chronic illness isn't really expected to work. They're not real physical illnesses, but they're not real mental ones either.