Open letter to Dr Peter Fisher, Liverpool University, about a research survey on emotional distress and CFS. 2019

"We do science by identifying, controlling, manipulating isolating and accounting for, all variables except in this case whereby using psychometric tools and subjective endpoints we wont bother, instead we will favour the thing we call "metacogntion" and we are calling this a hypothesis (even though it isn't one as it doesn't qualify as one due to our own lack or controlling for bias by only studying "metacogntion"). Even though correlation doesn't mean causation on conclusion of our study any change in the measures will be put down to metacogntion even though we are ignoring all other variables. Despite all these flaws in the claim that this is a scientific study we will still come up with a conclusion because that's what psychology is, cos like, we cant study all the variables you know".

Its not science then, its pseudoscience.

 

It all depends on the quality of the Ethics committee involved doesn't it? The one at Bristol didn't seem particularly good concerning Crawley's research, let's face it! And the HRA seemed to weasel out of the complaint by @dave30th about them too.

http://www.virology.ws/2019/10/28/t...-about-the-investigation-of-bristol-research/

 

My apologies. I've had my say but I don't seem to be finished with some other thoughts on this subject.

To quote:

On the face of it this seems very reasonable. Avoiding the pernicious effects of coercive therapy treatment to assistance with living-well. Sounds good.

There are three problems I'd like to make comment on. This first is from my POV I am still being told what is good for me in my situation and what is needed and that someone can come in and fix that for me.

This is not the core issue though. I look at this and I wonder if every time I see this 'helping' again (and there have been a number of people who have come here and on PR over the years offering their help --I recognise this was different as this was initiated on our side) but they all have in common an assumption.

It's an assumption that stems not from concrete experience of living but from another 'model' or construct.
It's not enough to have ME we must do the work to ensure that our emotional well-being is considered and addressed.

My question is: at any point did any researcher ask themselves Is this what people with ME desperately need? How important is it? Even, did they ever come to consider even thinking there might be this kind of question to ask first?

In other words, I tend to think that the researchers in the end gain more from the whole process than any person with ME ever will. ME has a few very real differences/challenges to other health conditions. The stigma and deliberate misinformation disemminated (gaslighting) and the lingering nature and severity being another. But saying this in no way adequately explains the problems.

It's true that the PACE trial is under some scrutiny with regards to actual efficacy. Where therapists can be most helpful is in understanding why this is. The demise of treatment based on PACE would indeed leave a void in the delivery of psychotheraputic modes of treatment. I'm really not sure how tragic this seems from the ill person's POV. But it seems the the model of holistic wellness is strong in the psychotheraputic force. So much so that it seems we are never to escape it's clutches and will be endless fodder for each 'new' iteration (my word would be fad) of what we most need to fix us so that we can thrive despite our situation.

This brings me to my last concern. This type of ill health is historically possibly unusual. People with a low QoL yet linger on. In my opinion what is needed if there is to be psychological help of any kind (though I'd prefer a biological treatment/cure naturally)--what's needed is something that the present system cannot offer. Spending quality time over a long period getting to know a cross-section of people with ME so that finally someone will be able to grasp the complexities of living this way in a variety of circumstances.

This used to happen as an ordinary thing back when people volunteered to help out a friend or relative and were the kind of people able to listen, take the time and plug this experience into prior knowledge to come up with viable strategies that were initiated by knowing, seeing, listening and entering the ill persons experience.

In the therapy suggested scenario the therapist is the star and hero. And they can be--but in a different way. If therapists raised their voices to research ways of supporting people with ME to me it would look like this:

Understanding what has gone wrong in the theraputic delivery of treatment to people with ME. The false model a la PACE needs to be corrected publicly. By those who have claimed a stake in our well-being.

Writing about this or supporting such writing publicly let's family, friends (should we have any) neighbours, carers, and the public we may come into contact with know the extent and type of illness this is (or more likely is NOT) and the suffering it entails and how those whom we regularly come into contact with might be able to facilitate concrete and useful ways of mitigating barriers to access things that might help or to create understanding of things that make our situation worse.

This opens up a new and different narrative. One where we experience positive feedback not just from a paid therapist relationship that is by nature limited but both sides benefit from being aware of a previously hidden situation there is less anger from the ill person and less gas-lighting from the ignorant (who are now not ignorant).

This is of course not a perfect solution by any means. But others might experience better emotional well-being too by being better informed. So knowledge brings a bigger and broader reward and all the burden of help is not left to the therapist when facilitating a public good. And the ill person is not weighted down with all the onus on them to change their way of thinking even as they have so little energy they cannot manage activities of daily living.

I fear I have not really been clear enough or thorough enough. And this comes yes, from a place of real frustration but there is no mean intention here. I am aware that this whole comment does seem harsh. The situation for people who continue to be ill over decades is harsh too.

And I know that all of this is not going to be relevant to the current research nor even necessarily read by any researcher. But I feel a little better for having been able to have my say.

 

From the comments submitted over the years to various committees and review processes, such as the recent NHRMC review in Australia, the NIH requests to the community and various other proceedings, I get the impression that those do not rank at all in the main concerns, that when free form is allowed, those concerns are not even raised. In multiple choices they may be selected somewhere but usually many more pressing choices are omitted that would make them rank much lower than it seems.

Personally it is exactly as relevant as how food vs the emotional impact relate to hunger. You can address the emotional distress of people experiencing significant hunger, or you can give them food and not bother at all with it. Emotional distress is relevant in the sense that it pretty much always is, but as a primary concern it does not even rate at all when patients are given the opportunity to freely comment. To us those concerns are the smoke, a mere consequence and rarely a serious concern, to most physicians it's the fire. The gap is enormous.

It could be an interesting study from a larger perspective as it reveals that the concerns of many professionals are actually considered largely irrelevant by the patients. Which is complete absurd. And seemingly common. I can't remember exactly but a few weeks ago there was a paper that noted, IIRC, that while fatigue was one of the main issues from patients, Parkinson's experts did not even rate it among their concerns. At all. It's a much larger problem that is exaggerated in ME but part of a wider problem from the echo chamber of medicine.

 

With such a long answer like that, she should consider a career in politics!

She mentions "careful consideration has been given to patient views during the development of the research" but this is nonsense. Careful consideration would have led to a very different research approach. I'd like to ask her to provide evidence on whether patients believed that these questionnaires were of primary relevance!

Choosing a bunch of questionnaires off a list and hoping they're relevant is not and will never be insightful or relevant research.

Why does she say this when that is not what was discussed in your letter?

They are not evidence based if their relevance, and specificity to ME/CFS patients has not been tested. Relevance is not tested by simply having some participants answer a questionnaire, it is tested by asking patients about the questionnaire. (Likewise, other metrics of questionnaires such as Cronbach's Alpha do not simply indicate reliability, this measure also reflects bias of questionnaire answering behaviour, which is in turn reflected by selection biases, social context and so on).

This is one of those cases where the indiscriminate use of questionnaires can often provide poorer quality evidence than qualitative evidence (obtained from structured interviews for example).

Another irrelevant comment. The complexity or frequency of debate has very little to do with the poor design of her research.

 

Yes!

She claims patients were consulted, so it is up to her to provide evidence that this is what we want or need.

Lenny Jason seems to be the one who does this properly - designing the research after learning from patients, rather than superficial consultation.

It is not psychology that we are opposed to, but poorly designed studies based on irrelevant questionnaires. Unfortunately, questionnaires, even the best ones are still low-quality instruments. Measures other than questionnaires are not only desirable, but mandatory if the evidence is going to be considered higher quality than merely "suggestive" quality.

 

Hi @Snow Leopard

It's not so much the idea of being for or against psychology for me as it is that after a while hanging around with ME and seeing what is researched that it seems there is just an awful lot of it. And in terms of the big/main goal of getting well it is of limited (or no) value.

Also, a researcher may well ask questions first but those questions will likely be limited in that they will not consider questions outside their remit (I could be wrong about this). Or people might answer knowing what the researcher is looking for.

I agree about the questionnaires. Pysch research is done on low budget (no doubt explaining why there is so much of it) and with crude tools. I guess part of my problem (and it is my problem I suppose) is the limitations that are inherent and cannot be overcome without researchers sitting down and wholly rethinking how to proceed in a way that captures more than superficial (I don't know what to put here as it's not really data) that is quantified in a vacuum without any context and therefore lost meaning.

Perhaps I am in a minority but pretty much all that I've seen so far bar a few Lenny Jason studies have only looked for solutions that can be delivered by a therapist (generally) where it would be a great service to work toward growing a more robust community where the 'job' of helping can be shared. As a culture we have moved so far away from that. This is of course less the territory of psych research but if they are truly interested in holisim then that whole 'intersecting' disciplines (usually meaning their mind expertise and that alternative biological model) could extend to social aspects of illness too.

I fancy most people are fascinated by psychology and what we might learn by studying it generally (I certainly have been). And maybe in my current position with regard to being ill (how ill I am /how old I am) I'm in a minority with regard to how useful I find any psychological insights into how to be ill.

I don't mean to be unfair here. We have certainly pointed out elsewhere on other threads how some biological research fails (for example) by over-hyping results or using less than robust methods.

In a sense this isn't so much about individual research or researcher methods as it is about the absolute limitations of the genre in general and how this affects what can be usefully gleaned at all.

Ironically, individual therapy can rise above this as it very much depends on the individual in terms of their maturity, wisdom and experience. But I would say those qualities need to be shared.

Well this has turned out to be rather long so hopefully I can leave it there. All just IMO.

ETA: I'm not long awake yet and I think I misread the point of Snow Leopard's comments somehow (with regard to my first comment in this post). Essentially, I agree.

 

It would be nice to think the student does read this thread. She may learn some real science. In case she does I will say Hi as a retired medical academic who has acted as expert witness for NICE on ME.

The problem is that it is very clear from the letter that ideas are in a complete muddle. Take:

The aim of this particular study is to understand psychological factors which may increase emotional distress experienced alongside people with Chronic Fatigue Symptoms. The Research team does not propose any hypotheses regarding causal factors and does not seek to refute the status of CFS/ME as a physical / neurological illness.

Well, that makes no sense because if a factor increases something else that is causal. A study that does not look at causation in this context is a complete waste of time. It is clear that the aim is in fact to look at psychological causation but it is so bound up in pseudoscientific jargon like metacognition that it can be guaranteed useless.

The reason why patients and academics are fed up with the psychologists' work on ME is not that the theories are unpopular. It is that the theories are barely coherent and have been shown to be wrong by studies like PACE. The sad reality is that it appears that psychologists more than anyone with any common sense, have no grasp of psychology - certainly no grasp of the psychology of doing research.

A student has a chance to break free of all the nonsense in psychology departments. The way to do that is shown clearly by a psychologist who does have common sense - Brian Hughes. A doctorate is an exercise in learning that the people senior to you probably have no idea what they are on about - learning how people get things wrong. That is what should distinguish it from a masters.

I am sorry to be as negative as everyone else but there are times when humanity matters - that for the sake of others' souls we have to say crap is crap.

 

Probably true, and I certainly enjoy reading that perspective. A corollary might be that suffering from a chronic disease is an exercise in learning that the medical community probably has no idea what they are on about - learning how doctors and researchers get things wrong. I mean no disrespect to you, @Jonathan Edwards; I am bemoaning the medical world at large.

I never felt this way before I grew sick. Not before I was sick for a few years and was mistreated by doctors I trusted and respected. I have family that is in the medical community. I taught my kids that doctors almost always got it right, except for rare and terminal cases. They still feel this way, despite my cautionary tale which should be so intimate with them.

It's a learning process all around. I fear not a pleasant one for most involved.

 

I hope the student realizes that this kind of dishonesty is one reason that psychological theories are unpopular. As patient you can't have a honest discussion with the people proposing them It's also one of the reason these theories are bad: because without a honest discussion, the academics are depriving themselves of important knowledge held by patients.

One might say that this is just rationalization of prejudice against psychology. The evidence that ME/CFS patients are against bad theories, and against psycho-behavioural explanations is this:

One of the most popular theories proposed the patient community is that patients often make themselves worse with the wrong behaviour. The wrong behaviour being, trying to ignore the illness and continuing their life as before. This is just as much a psycho-behavioural as anything else proposed by academics.

 

Are you sending this as a reply to her? It's a great response.

 

Wood....trees...

Life seems to gave been boiled down into parametric boxes to be ticked. In the process of dissection the importance and coherence of the whole is lost.

This reminds me of a scene some ten years ago in a primary school playground. There was a group of childminders comparing notes: childminding had just come under the remit of the care inspectorate and subject to the same regulations as care homes, nurseries and children's homes. Suddenly you needed a food hygiene certificate to cut up an apple as an after school snack, and had to don disposable aprons and gloves to change nappies.

With this change came a worldview and buzzwords. The childminders were each completing their new registration forms, which now had to have a mission statement.
How many buzzwords can you get into a paragraph, and how many variations of said paragraph can be construed. In the course of 20 minutes they did admirably.

What was lost was that this had nothing to do with the quality of care that was provided. The importance of their work was lost to a jumble of words chosen to conform to a perceived standard.
It did not make any of them better at their job, it just gave the perception that they knew what they were talking about enough to pass an assessment.
From their conversation, few actually knew what any of the buzzwords meant in that particular context.

From the outside, psychological research seems a lot like this.

 

I agree, this goes back to the key social factors mentioned by Trish that are often associated with distress, namely loss of career, relationships, financial struggles (due to loss of earning power and medical bills), poor quality medical care and societal treatment due to a stigmatised illness and so on.

Yet despite these factors being central to the distress experienced, because these issues cannot be solved with quick fixes through therapy (since the cause is still the underlying illness), the focus instead is put upon peripheral psychological factors that can potentially be changed, namely cognitions (including metacognitions). The major problem with this is the usual evidence used to demonstrate efficiency is self-referential and inherently biased.
Questionnaire answering behaviour is a direct consequence of cognitions, so modifying metacognitions may lead to different responses on questionnaires that are supposed to measure distress, without actually decreasing lived distress.

And finally, yes, just because the same sort of mediocre methodology has been applied to other illnesses, doesn't mean it is a good idea.