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

Trish

Trish

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I wrote this personal open letter as a response to taking a survey detailed on this thread.
University of Liverpool survey: 'Emotional Distress in Chronic Fatigue Syndrome', 2019

I will post any reply I receive here too.

Dear Dr Peter Fisher and colleagues,

re: Survey 'Emotional Distress in Chronic Fatigue Syndrome'.

Thank you for informing me that you have changed the age range on your survey. I have now filled it in.

I must say I was puzzled and disappointed by the questions asked. I wonder what particular insights you expect to elicit about emotional distress that are specific to patients with ME/CFS from this very limited range of questions. It seemed to be a generic set of questions aimed at finding ways to tweak CBT or other therapies for people suffering from anxiety disorders. ME/CFS is not an anxiety disorder.

The survey did not begin to address the causes, or perpetuating factors, of emotional distress when it occurs in people with ME/CFS, nor how they could be remedied.

I have two specific areas of concern:

1. The Chalder Fatigue Questionnaire is generally regarded among researchers who understand ME/CFS to be a very poor diagnostic tool to determine whether a person has ME/CFS or some other fatiguing condition such as depression or idiopathic fatigue. And it does not adequately differentiate levels of ME/CFS severity. Most of the descriptors are not ME/CFS specific, and there is a strong ceiling effect such that someone with mild ME/CFS can easily get the same score as someone completely disabled by it.

If you are using CFQ as either a diagnostic or as a measure of severity of ME/CFS symptoms, your results will be unreliable.

Reference:
S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

2. The whole survey seems to be built on the premise that emotional distress in ME/CFS is caused, and/or perpetuated, by patterns and control of thoughts and can be remedied by therapy. That is so very far from the truth.

As someone who has had ME for 30 years, is carer for my daughter with ME for 22 years, and who has spent a high proportion of my time every day for the last 4 years in on-line communication with a wide variety of people with ME from all around the world, I can tell you that the emotional distress suffered by people with ME has clear causes that cannot be addressed by therapy aimed at changing thought patterns.

Here is a list of the causes of emotional distress that recur repeatedly in on-line discussions:

Major life changes:
a) loss of career
b) loss of, or problems with, close relationships
c) loss of opportunity to have a family or achieve other hopes
d) loss of social life

Unmet needs:
e) financial worries and hardship
f) difficulties accessing suitable housing
g) difficulties accessing suitable and sufficient care, loss of ability to self care
h) difficulties accessing medical care

Treatment by others:
i) gaslighting by the medical and psychiatric/psychological professions
j) not being believed by friends, family, doctors etc, being treated as malingerers, or as suffering from psychosomatic symptoms.
k) prolonged battles with benefits agencies whose employees don't believe ME is real and class people with ME as malingerers.
Reference:
ME/CFS and the Biopsychosocial Model: A Review of Patient Harm and Distress in the Medical Encounter, Geraghty and Blease

Lack of appropriate medical treatment:
l) inappropriate exercise based therapy - Graded Exercise Therapy or Activity Management, that worsens symptoms long term for the majority of patients.
m) Directive CBT that assumes ME symptoms are a result of anxiety leading to fear of exercise, and encourages increasing activity. This leads to a combination of worsened physical symptoms due to increased activity, and therapy-induced self blame for not getting better.
n) lack of any medical effective treatment
References: ME services in the UK not fit for purpose - Report on large patient survey.
Dialogues for a Neglected Illness - 2 ten minute videos on Graded Exercise Therapy.

Symptoms
o) the daily distress of coping with symptoms that are both debilitating, limiting activity, and ranging from unpleasant to unbearable (pain, nausea, brain fog, sensory sensitivities etc)
p) post exertional malaise and the knowledge that a small step beyond one's current energy envelope can lead to crashing down into far worse symptoms that may last weeks or longer.
Reference: Film Voices from the Shadows

Government neglect
q) lack of biomedical research and research funding, and continuing waste of research funding on discredited psychological therapies.
r) loss of hope, concern for the future.
Reference: UK Parliament - Backbench Debate on ME - 24th January 2019
Transcript
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No therapy, however carefully geared to the results of a survey like yours, is going to touch any of these major causes of distress. It will just leave patients at the end feeling yet another layer of self blame for not being able to think away all these ongoing factors.

The astonishing thing, to me, is that despite all these losses, barriers to proper care, gaslighting, and distressing symptoms, the people with ME I come across are so resilient, sane, well balanced, and determined to make the best of their very limited lives.
.........................

A simple question for you. Why this study? What is the point? Would you run the same survey with people with other long term disabling and debilitating physical diseases, like Multiple Sclerosis, or Parkinsons Disease?

Reading back over this, I can see that it may seem like a hostile response to a genuine attempt on your part to improve services to people with ME. While I may applaud the intention, it is disheartening for people with ME to see so little understanding of our illness and the reality of our lives from the very people who are trying to help us.

To be presented with a survey that says it's about ME (or CFS) that shows such a lack of understanding of the physical and cognitive effects and social consquences of this very debilitatiing physical illness which studies have shown to be one of the most disabling illnesses, is disheartening.

To then find the rest of the survey focused entirely on thoughts and how we control them, is demeaning to people faced every day with external factors including real hardship, medical discrimination and ridicule.

I hope you will take this letter in the spirit in which it is intended, that is, to provide feedback which I hope you and your team will find helpful both in informing this particular research project, and in your ongoing research and service provision for people with ME/CFS. I would be very pleased to discuss it further with you and provide you with further research evidence to back up my statements.

This is an open personal letter which I have published on the Science for ME forum. I will also publish there any reply I receive from you or any of your team.

I look forward to your reply.

Yours etc.
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Nice letter.

If psychologists learn about psychology during training, but the learning material is based on flawed science that doesn't reflect reality, is the end result that psychologists consistently misunderstand other humans while thinking they have special insight into the psyche?
 
That is a beautiful letter @Trish . Thank you for your effort.

Clear and on point.

I confess when I see this type of 'research' I am given to wonder at times how it is that the person has convinced themselves, in the interest of helping, that this will be of any benefit.

And so the divide. There on their side they believe it's a simple matter of adjusting our thoughts. And here we see that their thoughts on what keeps us ill do not align with our reality.

I wonder how much now has accumulated of this type of research (it seems mountains) and here we still are. And the numbers keep growing.
 
obeat said:
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This sums up the lack of insight among psychologists.
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This makes it sound like in traditional medicine the patient is being lazy... Because they don't have to do anything to make their medication work? Because they don't perform surgery upon themselves?? Ffs. Such lazy passive patients, huh?
(Also, the person who wrote this has clearly never met a type 1 diabetic.)
 
I have had a reply, copied below:

Dear Trish

Many thanks for your interest in the research and for your constructive feedback, which is indeed received in the spirit it is intended.


I am aware that psychological research in CFS/ME is a highly contentious issue and I understand your concerns. Please be assured that careful consideration has been given to patient views during the development of the research.


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 causalfactors and does not seek to refute the status of CFS/ME as a physical / neurological illness.


As a Trainee Clinical psychologist, I am completing this research in partial completion of the Doctorate in Clinical Psychology. I have no vested interest in proving / disproving a particular hypothesis. My primary aims are to complete a methodologically sound piece of research which contributes to the evidence base; my hope is that this preliminary study will inform the development of more effective therapeutic interventions for people living with CFS/ME who experience emotional distress. I would view this as contributing to a multi-disciplinary 'living well with chronic illness' approach, which does not discount the status of ME / CFS as a physical / neurological illness.


Similar research has been completed regarding the emotional distress experienced by other physical health populations, including Multiple Sclerosis, Parkinson’s Disease, Diabetes, Epilepsy and Cancer. The contribution of metacognitive processes to the distress experienced in physical health populations does not discount the fact that issues such as discrimination, identity and loss are major factors. However, in addition to being the real lived experiences of patients, these issues may be broadly (albeit crudely) categorized in psychological research and therapy as thought content as opposed to thought processes, and therefore a different avenue of research. Metacognitive research and therapy is exclusively concerned with thought process and is a transdiagnostic approach. In this respect, research into metacognition may complement future research into the very real issues you raise, which understandably affect patients; these research areas are not mutually exclusive. Metacognitive therapy seeks to support patients with how they engage at a cognitive level with their real lived experiences, in terms of thought processes. It is hypothesized that thought processes have the potential to either increase or decrease the levels of distress experienced.


Specifically, the study seeks to investigate whether or not metacognition plays a significant role in the level of distress experienced, independently of symptom severity. Statistical analysis will be employed to this end. Analysis will consider what proportion of distress (if any) is related to metacognition. This study does not hypothesize that metacognitive processes are the only factors which may contribute to distress . However, as per methodological conventions in scientific research, it is unfortunately beyond the remit of this particular study to explore other factors which are likely contribute to psychological distress experienced by people with CFS/ME.


My understanding is that to date, psychological therapies have largely focussed upon reducing symptom intensity / increasing activity levels, as opposed to reducing the emotional distress which may be experienced alongside symptoms (an under researched area). A therapeutic focus on distress reduction may be more appropriate and acceptable as part of a ‘living well with chronic illness’ approach. Such a therapeutic focus is seen in other health populations. I understand NICE Guidelines are being reviewed following concerns raised about CBT and the PACE trial. As such, it appears preliminary research is needed to consider which theoretical approaches may (or may not) underpin more efficious treatments, as part of a multi-disciplinary approach.


I am aware of the viewpoint that psychological research arguably detracts from the emphasis placed on biomedical research. Certainly, I do see the merits of this argument when applied to causal factors. However, this is perhaps an unhelpful distinction when applied to all types of psychological research; I wonder whether there is a danger of research into emotional wellbeing in the ME/CFS population being adversely affected by this view. At the same time, I understand the reasons for people living with ME/CFS exercising caution when considering such research.


Finally, the research methodology has been approved by the University of Liverpool Ethics commitee, in addition to the Health Research Authority. All measures are evidence based, standardized psychometric measures Shortened versions of the measures to reduce the burden on participants. However, I thank you for the issues you raise regarding the Chalder Fatigue Scale. This is something I will research further. Whilst it is not possible to amend measures at this stage of the current study, consideration of methodological limitations will be included in the final report.


I'm aware the debates around ME/CFS and psychological research / treatment are numerous and complex. However, I do hope this reply goes some way to addressing your concerns.


Best regards
Amelia

Amelia Wright
Trainee Clinical Psychologist
University of Liverpool
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I will reply thanking her and inviting her to read any comments on her reply here, and join us if she wishes.
 
Trish said:
I have had a reply, copied below:



I will reply thanking her and inviting her to read any comments on her reply here, and join us if she wishes.
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This is a sensible reply but I don't see how any of this should apply to any particular disease. There is plenty of value in studying the emotional distress that comes from disability in general, especially as it would reveal how much of it is caused by health care systems that are shockingly oblivious of the lived reality of chronic illness.

But none of it is of any particular value to any specific disease. Whatever emotional distress experienced by pwME is quite generic, aside from being made much worse by disinformation and wilful ignorance, but then that would mean studying how a failed illness paradigm is responsible for much of it, not how sufferers of any particular disease experience it. It is shockingly similar to the early days of the AIDS crisis as well, where sick people were begging for help and met with contempt and indifference. There is much more to learn from the failures of health care in this regard than the reaction of yet another discriminated and vulnerable population.

I'd say it sounds a lot like the response from Cochrane about not reading anything into their arbitrary classification within the common mental disorders group. Sure, it sounds reasonable, but it's still not really credible. That it's not "causative" but merely "plays a role" is also the blatant lie from the BPS folks. "Just teaching the controversy" and all.

Here it may come from good intentions but... meh. Fool me once, shame on you. Fool me 29072936296329746 times, well... I expect better than the same old running in place in no particular direction and ultimately leading nowhere. Especially as this has been done plenty, it's just pointless.
 
My problem with regard to this type of research is:
Quote from text:

I am aware of the viewpoint that psychological research arguably detracts from the emphasis placed on biomedical research. Certainly, I do see the merits of this argument when applied to causal factors. However, this is perhaps an unhelpful distinction when applied to all types of psychological research; I wonder whether there is a danger of research into emotional wellbeing in the ME/CFS population being adversely affected by this view. At the same time, I understand the reasons for people living with ME/CFS exercising caution when considering such research.
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The type of therapy that is described (ie the other types that don't posit a model of illness) is only about changing our cognitions as a way of improving emotional well-being. In my opinion having been ill for decades now I can say with absolute certainty that what is needed is a change in the system and the way we are dealt with as an ill population.

Changing that would improve my emotional well-being immensely.

I don't need a therapist I need advocates.

I'm not saying there is no validity in having a look at what and how emotional well-being can be improved from a theraputic perspective it's just that from where I sit there is an awful lot of that around at least when compared to any conversation/research about the external factors contributing and needing to be changed for a better outcome for people suffering illness.
 
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Distress and anxiety are warning signals. We need to act on them. Finding solutions for the issues that provoked a distress or anxiety response is the most powerful intervention. A treatment that restores functioning would fix a lot of distress and anxiety and frustration.

There doesn't seem anything unusual about distress and anxiety in ME/CFS, other than maybe the role of disbelief and marginalization occurring as consequence of psychogenic theories about the illness.
 
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Thanks for doing this Trish.

I haven't looked at the details of this research, but to me the response from Wright is pretty worrrying.

Specifically, the study seeks to investigate whether or not metacognition plays a significant role in the level of distress experienced, independently of symptom severity. Statistical analysis will be employed to this end. Analysis will consider what proportion of distress (if any) is related to metacognition. This study does not hypothesize that metacognitive processes are the only factors which may contribute to distress . However, as per methodological conventions in scientific research, it is unfortunately beyond the remit of this particular study to explore other factors which are likely contribute to psychological distress experienced by people with CFS/ME.
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That seems to imply some bizarre faith in the measures being used.

All measures are evidence based, standardized psychometric measures
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Oh great.

IMO it was probably a mistake for Trish's letter to have framed concern about the hardships of ME/CFS altering the way patients fill in questionnaires about their metacognitions in the way it did.

eg: "The whole survey seems to be built on the premise that emotional distress in ME/CFS is caused, and/or perpetuated, by patterns and control of thoughts and can be remedied by therapy. That is so very far from the truth."

To me, that indicates that the concern about the research is about what it will find rather than the quality of its design and the danger of it producing misleading results, which encourages the sort of dismissive response we saw from Wright. There was a lot of valuable info in there that should encourage people to realise how silly this sort of research is, but it could be interpreted as just a reflection of ME/CFS patients' bizarre opposition to understanding the psychosocial aspects of their illness.

Also, re: "Would you run the same survey with people with other long term disabling and debilitating physical diseases, like Multiple Sclerosis, or Parkinsons Disease?" There is so much rubbish psychological research on illnesses like these! It just tends to not do so much harm because patients with those conditions are in a very different social context.

Trish's letter provides a lot of good info on why the social context surrounding ME/CFS is different and can allow poor quality research to do more harm, but it's not presented as showing that researchers in this area have a particular responsibility to understand the social context in which they're working, so it seems Wright completely misses that point.

Sorry for only making criticisms of the letter after it was sent!
 
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