Poor psychological study on ME/FMS - be aware

[Calathea]

Action for ME has put out an appeal for participants in an online questionnaire. The "study" is being done by a psychology undergraduate who, as far as we can tell, knows nothing about ME, and it's absolutely terrible. There is a strong assumption throughout that ME is a psychological illness and that anyone filling in the questionnaire is in excellent physical health, able to work, ideally eating a standard recommended diet and participating in strenuous physical exercise several times a week. The standard psychiatric questions will be skewed by physical illness but give no room to explain that, e.g. if you no longer enjoy hobbies as you once did - due to being physically unable to continue them - then they will conclude that you are depressed. It also asks what you believe to be the three main causes of your illness, which is bizarrely inappropriate for this sort of physical condition but would fit perfectly with a psychological approach (e.g. "I feel my illness was caused by childhood trauma and my inability to cope with adult life"). The questionnaire was poorly designed and will doubtless be poorly interpreted in such a way as to conclude that ME sufferers are making themselves ill through poor lifestyle choices and poor mental health.

Personally I feel that we are better off not filling in this questionnaire, and emailing both the student and her supervisor to explain what is wrong with it. As I have already filled it in, I intend to email them both to request that they withdraw my responses, once I have the energy to put together an email explaining exactly what is wrong with the questionnaire. If anyone else wants to do a proper analysis of the thing, please do share!

 

[Min]

Appalling that AfME are colluding with this by asking for participants.

 

[Calathea]

I rang them to complain, and they assured me that they would have checked it out and don't see a problem. They're getting back to me about it tomorrow. It would probably help if other people contacted them to complain, or at the very least, left comments on the page on their site.

 

[Valentijn]

I filled out the survey - because while there are certain assumptions underlying it, it's fairly easy to debunk them. I enjoy life, I don't have anxiety, etc. I just live most of my life at home

The last two questions, allowing for extensive responses, are especially useful for educating the psych major.

 

[Mya Symons]

Copy of E-mail with response....

Student Researcher:
Laura Hamilton
Email: L.Hamilton4@herts.ac.uk

Supervisor:
Dr David Wellsted
Email: d.m.wellsted@herts.ac.uk

Hello. I just finished taking your fibromyalgia/cfs survey. There was something more I felt needed to be said. It seems that the premise behind your survey is to link lack of exercise, depression, negative feelings and isolation as the causes of fibromyalgia and CFS. Your survey has what I like to refer to as the "What came first the chicken or the egg problem". This is a common issue with psychological fibromyalgia and CFS surveys and studies. I will try to explain what I mean. Your study assumes that depression, negative outlook, and isolation led to fibromyalgia and CFS symptoms and that is the way it is geared. However, it is often the complete opposite. A person becomes ill with FMS or CFS, is then in pain and fatigued, and is UNABLE to have the same exercise regimen, family life, social life and work ethic they had before. Further, often when counseling fails to cure their illness, they loose the emotional support of any family and friends who believe FMS or CFS is purely a psychosomatic illness. The belief is that they are not trying hard enough or are mentally ill. The events I described then lead to the depression, isolation and negative feelings described in your survey. However, If a person were to answer your depression, negative feelings and isolation related questions on your survey with the selection often or some similar selection, your study is geared in such a way that you will assume depression, negative feelings, and isolation are the cause of their illness and not the result of the illness.

What I am trying to say is that your survey is not objective, it is subjective and therefore very biased. I suggest that you start over with another survey that is worded better. For example, you could have asked if the person was depressed or isolated or experienced negative feelings before they had FMS and/or CFS, but you did not.

Thank you for your time and consideration.

Sincerely,




Dear

Thank you for your considered responses to our survey. We always appreciate feedback from the people who take part in our studies.


We agree with you entirely, and we had tried in the opening pages of the survey to say that what we are interested in is how people respond to being ill. We do not take a particular view about what kind of illness people have. Most of the work of our group is with people who have illnesses such as Renal Failure or Rheumatoid Arthritis.



In particular we agree that the common finding that depression is associated with illnesses such as fibromyalgia or CFS is not informative.



What we want to know from this survey is how people respond to being ill. We understand your view that in many cases illnesses such as fibromyalgia and CFS may lead to a person being unable to engage in the activities that they had taken for granted up to that point in their lives. Indeed it is well understood that this change in life circumstances is very challenging, and can lead to all sorts of difficulties in a persons life such as not being able to continue working, depression, complications for families and friends and so on. In fact one particular point of view suggests that becoming depressed is a natural response to illness so that the body can recover (I am not sure whether this is correct, the evidence is difficult to obtain).



What we do know is this. People who have certain kinds of understanding about their illness (for our work in people with Rheumatoid Arthritis or Renal Failure) have more clinical problems over time; the consequences can sometimes be very severe. An example of this is where the person believes that their illness will be cured when clearly this is not possible (for example in Rheumatoid Arthritis), or the person believes that they have very little control over their illness or the symptoms they experience.



The first question we will try to address with this study is whether the kinds of views the person holds about their illness (eg how long lasting the person believes the illness might last, and whether the person believes they can do anything about the symptoms they experience) is related to how active the person is. Activity here might mean a lot of different things obviously not just visiting the gym. For our survey we believe that the kinds of responses that people give might be influenced by whether they are feeling down or depressed. By including these kinds of questions we can adjust for depression and anxiety in looking for the relationships we are interested in just looking to see whether people are depressed or not is not useful.



For this study we have used a number of questionnaires that are widely used, so we can be sure that the responses we are getting are reliable. The problem for us is that if we try to develop new questionnaires then we cannot be sure initially that the questions used are appropriate or the responses are reliable. This may cause us some problems as the tone of the questions might not be helpful for people with illnesses such as yours.



Your feedback is useful as we can start to think again about the opening pages of our survey, and perhaps whether we need to reconsider the questionnaires we use next time round we should probably be much more direct about our view of the nature of illnesses such as CFS or fibromyalgia. In the mean time if we can give you any more information, please let us know.



Regards

David and Laura


My response to them:


Well, this is the first time I have gotten a decent response from someone doing a psychological study on FMS and CFS. What a surprise. Usually when a person does this kind of survey on FMS and CFS, it is with the purpose of proving depression, trauma or some other type of psychosomatic illness is the cause of CFS or FMS. I apologize for making assumptions.

 

[Calathea]

So they think that your "belief" about how long you will be ill is an indicator of how depressed you are, rather than how severe your physical condition is, and that this is what drives your activity level? Please email them back to explain the problem here! When I have the energy to email them myself, I won't mention that I've read this but I'll use it to inform my analysis of what's wrong with their study. I hate the "but we're using a standardised questionnaire, it's been around for decades so it must be good response", as I once received it for a survey I complained about due to its supporting marital rape. Psychology departments are daft things.

I'm worried by the constant use of "we", though. It sounds as if this isn't just one little undergrad's survey but a bigger study.

 

[Mya Symons]

So they think that your "belief" about how long you will be ill is an indicator of how depressed you are, rather than how severe your physical condition is, and that this is what drives your activity level? Please email them back to explain the problem here! When I have the energy to email them myself, I won't mention that I've read this but I'll use it to inform my analysis of what's wrong with their study. I hate the "but we're using a standardised questionnaire, it's been around for decades so it must be good response", as I once received it for a survey I complained about due to its supporting marital rape. Psychology departments are daft things.

I'm worried by the constant use of "we", though. It sounds as if this isn't just one little undergrad's survey but a bigger study.

What you say makes sense. I didn't think of it this way, but I should have. I will wait a bit to see if there is anyone else who wants to put anything in the e-mail and then I will e-mail them again.

 

[Calathea]

Good idea. Once I'm more awake, I'll put up my emails here to see if anyone wants to add anything before I send them off, too.

It's really worrying that they are seeing physical facts as beliefs. They have decided that whether or not the patient believes they can do anything about their illness is purely a psychological issue. Have they noticed that there is absolutely no treatment for ME in the UK? Apart from CBT and GET, but even if they have missed most of the problems with those, they should at least be aware that two treatments which are controversial and are not a cure won't get you very far, and that anyone who's been ill long term will probably have been offered them already?

I think they have also decided that if you don't think you will recover, that's a psychological problem. I don't think I'll recover. I've been ill for fifteen years, I'm severely affected, my condition has followed a pattern of gradual deterioration, and all the research done so far indicates that I am never going to be rid of this illness. I'm hoping for a good partial recovery, and even so I recognise that this is founded on optimism rather than the evidence so far.

They've got cause and effect the wrong way around. I'm not ill because I'm convinced that I won't recover; I have spent years getting worse and gradually having to admit that despite my best hopes and efforts, I am not improving. They take someone in my situation and assume that a "negative illness belief" has caused the illness. I originally typed "physical illness", but they still haven't confirmed that they are working under the assumption that ME is a physical illness.

They don't actually ask whether the patient has run through all the treatment options available on the NHS, let alone available elsewhere. They don't even ask for how long the patient has been ill.

 

[Patrick*]

I filled out the survey - because while there are certain assumptions underlying it, it's fairly easy to debunk them.

Funny, I did the same thing.

 

[Calathea]

Really? You showed them that you are a model patient, eager to believe that you will be cured shortly, engaging in energetic aerobic exercise several times a week, eating a standard diet, and continuing to work? Because anything else will be read as "poor illness management skills".

I'm sending them the following email. I'm too tired to check over the questionnaire again, and frankly the whole business is just winding me up by now.

----------------------------

Dear Ms Hamilton and Dr Wellsted,

I am withdrawing my permission for you to use my answers to your questionnaire on ME/FMS, as I consider it so badly designed as to be not fit for purpose.

I would remind you that ME is classified as a neurological disorder by the WHO, which also lists it as equal in severity to MS. Your questionnaire appears to be working under the misguided assumption that neither ME nor FMS are physiological conditions.

In addition to basic errors such as presenting ME and FMS as an either/or option when there is a high comorbidity between the two conditions, the questionnaire neglects to ascertain basic information such as whether the diagnostic criteria for ME/FMS have been met (misdiagnosis rates being high with both conditions), how long the patient has been ill for, and the prognosis that has been made by the patient's doctors.

The question about what the patient believes caused their illness gives the strong impression that it is regarded as a psychological condition that can be traced back to trauma or poor coping skills: the causes of both ME and FMS are still unknown, and no one would dream of asking someone with another neurological condition such as MS or epilepsy what they "believed" caused their illness. Nor is either ME or FMS a belief: they are long-recognised medical conditions, not religions. How long the patient believes they will be ill for similarly appears to be a question designed to blame patients who expect their illness to be long-term or lifelong, regardless of the expected prognosis (e.g. patients who are in the most severely affected group and/or have been steadily deteriorating for over ten years are unlikely to recover fully, according to research, and would be delusional if they believed in a speedy recovery).

It is as inappropriate to apply questions about "health promoting behaviours" that have clearly been designed for people in good physical health to someone with a a severe physiological disability (e.g. very few people with ME are able to work; one of the cardinal symptoms of ME is that aerobic exercise causes deterioration; dietary modifications are usually necessary due to gastro-intestinal symptoms), as it is to apply a standard list screening for mental illness that will falsely flag up signs of mental illness (e.g. inability to enjoy former hobbies or take care of personal appearance due to being physically unable to do so). The author of the study appears to be completely unaware of even basic symptomology, let alone how ME impacts upon a person's lifestyle and what is the best means of managing it.

Social and economic factors are also completely ignored, despite the fact that most people with ME and FMS live in poverty, often in social isolation, and rarely receive even adequate medical care, let alone effective treatment.

My reference code is [redacted].

Yours sincerely,
[name]