Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+

For the most part, yes. But its unfortunate if his(?) project enables harmfull research from others.
That would be unfortunate indeed and I still feel they aren't harmful researchers. They see it as a physical illness, that's why they publish on cognition and MRI.

They are also aware that having a disease with little answer or help comes with a layer of stressors that they can help with. If you can't fix the disease you can at least try to improve life quality and I think that's their care strategy.
 
Yes we work with Sarah Knight and they are experienced with using these surveys. They publish on MRI work and not on these surveys, my impression is that they don't think the disease is somatization, they think it's to do with neural structures, at least that's their main interest.

The somatisation questions go to the parent/guardian. The patients fill cognitive questionnaires. I don't know if the data go to the GP or if that includes the somatisation questions, the report does have results of the cognitive questions. That's all I know for sure. But I can clarify.
Yes, I think some more clarification is definitely and urgently needed.

Sarah Knight and her team collect data using a survey that reports a somatisation score. If they don't think the disease is somatisation, then why are they collecting that data? And what exactly do they do with it?

Where does the data on a specific young person go to? We understand that the BASC-3 Parent Reporting Survey is filled out by the parent, we understand that the parent gets the questions. But, where do the answers go? Does the parent get a BASC-3 report, reporting the Somatisation score? Do the young people participating in your trial get a copy of what their parent has reported about them? Is the BASC-3 PRS report kept on the young person's medical file? Some of those young people are not children. Does it go to the GP?

Have you read our BASC-3 thread yet?

Perhaps Sarah could come onto the forum and explain why her team is collecting this data and what they are doing with it.

Also, we really need to see if both parents and young people fully understood that they would be completing a survey that outputs, among other things, a Somatisation score, and if they knew what would be done with the data. I don't think there is any ethics constraint on making the Patient Information Sheet public.
 
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Sarah Knight and her team collect data using a survey that reports a somatisation score. If they don't think the disease is somatisation, then why are they collecting that data? And what exactly do they do with it?
Fair question.

In fairness, it has the potential to cut the other way. If a biological mechanism is found for ME/CFS, and it correlates strongly with scores on 'somatisation' check lists, and especially if both resolve with the same biological treatment, then that is very good evidence for 'somatisation' actually being a biological phenomenon, not a psychological one, in terms of causation.
 
I still feel they aren't harmful researchers. They see it as a physical illness, that's why they publish on cognition and MRI.
And yet, they have caused harm. Not least by diverting funds and effort away from collecting useful information. But also in diminishing people's trust in the medical system, particularly in diminishing young people's trust in the medical system. Probably also in some cases in solidifying parents' belief that they must practice tough love in order to not facilitate their child's psychosomatic illness.

Here are some excerpts from an email I wrote to Sarah in 2016. The study was termed 'Understanding Chronic Fatigue Syndrome'. It asked me, the parent, questions such as 'Do you bring your child special treats or little gifts when he is very tired or in pain?' and 'Do you keep your child inside the house?'. I had forgotten how bad the questions were.

The study did not ask permission for access to my son's medical notes and the long survey did not ask about PEM, so Sarah's team should have had no way of knowing whether he met ME/CFS criteria. I repeat, the study was called 'Understanding Chronic Fatigue Syndrome'.

Yes, it was a rant of a letter, but perhaps it conveys to you some sense of how surveys administered by Sarah Knight's team can do harm to struggling families. This was early in my son's illness; I'm actually pleased at how I would still stand by what I wrote.


Dear Sarah
I have some comments about the questionnaire.
...

Page 15. ‘Do you worry if child’s medical treatments are working?’ XXX has no medical treatment, so there is nothing to worry about.

Page 18. These questions relate to when the child is very tired or in pain. My response to those two different situations is quite different. If XXX is very tired (after a period of higher than normal activity), he sleeps for much of the day. So I have less interaction with him than when he is just normally exhausted. If he is in pain, then I do what I can to help him relieve the pain. But actually he is often not in pain. And if he is, it is often a migraine in which case I give him nurofen and then he just wants to be quiet in his room. How then to answer your first question on the page? So actually when he is very tired or in pain, I have much less interaction with him, but that doesn’t mean I don’t care about him. I am concerned that answers to these questions can be twisted in all sorts of ways to prove whatever it is you wish to prove. If I don’t interact more when he is ill, I am uncaring. If I do interact with him more, I am coddling him and facilitating the illness.

You ask if I let XXX sleep later than usual in the morning (when he is very tired). Actually it isn’t a matter of me letting him sleep. He sleeps. He can not be woken up. And, when he is experiencing serious Post exertion malaise, he sleeps until well into the afternoon, not just the morning. So how to answer that question?

Do I bring him special treats or little gifts when he is very tired or in pain? Well no, because he is either asleep or in no mood for ‘little gifts’ or even eating.

Do I give him medicine when he is very tired or in pain? Well, if he is very tired, then he’s probably sleeping and in any case, we haven’t found any medicine that actually helps with the exhaustion (because medical researchers faff around wasting everyone’s time focussed on psychosocial cause rather than actually working out what is causing the illness and what might treat it). If he has a headache or joint pain, then he’ll either take nurofen himself or I will bring it to him. But he is far more likely to be very tired than in pain significant enough for him to bother complaining about it and seek medication. So how to answer your question, using the limited scale?

Do I keep my child inside the house? He is a 16 year old boy. If he wants to go out of the house, I’m not stopping him. I encourage him to go out of the house. But he’s sick. So no, I don’t keep him inside the house. But if he is very tired or in serious pain, he’s in his room. Much of the time, he’s in his room. It’s not his choice either.

Do I let him stay home from school? As I said, if he is very tired, he’s asleep and no amount of me wanting him to get to school will change that. It isn’t a matter of letting him stay home. And if he’s borderline exhausted and he’s made the decision that he’s not going, then fair enough because he would almost certainly struggle to concentrate and would come out of the class deathly pale and cold. This year XXX is studying online. So the question is irrelevant. Many children with ME/CFS will not be attending school.

Do I take my child to the doctor when he is very tired or in pain? Obviously I would if XXX had a problem that the doctors are likely to be interested in helping with, rather than just sending him off with a pack of ritalin and a plan to see him in 4 months (yes, RCH fatigue clinic, thanks). But for ME/CFS symptoms? No. It would just be exhausting and emotionally draining. Even our GP who is caring and would like to help can not offer anything and knows much less about the illness than we do.


I hope Lionel and the rest of the team have carefully read the latest report of the PACE trial followup. If you go beyond the spin of the abstract and read with intelligence, it is clear that CBT and GET showed no benefits at the 2 year mark. You do harm if you perpetuate these unscientific ideas and waste research funds on fluff. I commend the analysis by David Tuller of the initial PACE reports to your team if any of you have not read it yet. Please be very careful when you write up the report on this study to not make it harder for people with this illness to get useful care from doctors rather than harmful prescriptions for GET and positive thinking to push through the fatigue and get on with life.

I note again that we were never asked if XXX’s medical records could be accessed for this study. Therefore I don’t believe you have any way to separate out those children who have a post-viral infective fatigue with PEM from others that may be fatigued for other reasons. This is a significant flaw in your study – it’s like trying to assess the average skin colour of oranges when your sample includes both apples and oranges.

How on earth does it help patients with ME/CFS if their doctors read your study report giving the percentage of parents who give their child treats when they are sick? That and many other questions are so open to interpretation by the person completing the questionnaire and, as I noted above, invite the researcher to interpret them in ways that end up blaming the patients and their carers. So, a badly characterised sample and vague irrelevant questions that generate answers that feed the researchers' prejudices.

I feel so sad that resources are spent on this when even just a simple survey of RCH fatigue clinic patients to accurately characterise their illness and then to get the patient’s and carer’s evaluation of the treatments given would have been so so much more useful in improving the care given to children with this illness. Such a survey would have fulfilled the title of your survey (Understanding chronic Fatigue Syndrome) far better than this current survey does.
 
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In fairness, it has the potential to cut the other way. If a biological mechanism is found for ME/CFS, and it correlates strongly with scores on 'somatisation' check lists, and especially if both resolve with the same biological treatment, then that is very good evidence for 'somatisation' actually being a biological phenomenon, not a psychological one, in terms of causation.
Do you think it is likely that this team is producing Somatisation scores for the young people in this study so that, one day later when a biological mechanism for ME/CFS is found, a paper can be written showing how wrong the Somatisation scores were?

In any case, fans of somatisation could easily note that the characterisation of ME/CFS was poor, so some of the young people may not have had ME/CFS and instead had a somatisation disorder. They might also note, as they do even with patients with terminal necrotising brain disease, that it is perfectly possible to have a biological disease and a functional overlay, so the young people were in fact somatising to some degree. That is the beauty of psychosomaticism - it's easy to diagnose someone with it and almost impossible to prove that the diagnosis is wrong.
 
Yes, I think some more clarification is definitely and urgently needed.

Sarah Knight and her team collect data using a survey that reports a somatisation score. If they don't think the disease is somatisation, then why are they collecting that data? And what exactly do they do with it?

Where does the data on a specific young person go to? We understand that the BASC-3 Parent Reporting Survey is filled out by the parent, we understand that the parent gets the questions. But, where do the answers go? Does the parent get a BASC-3 report, reporting the Somatisation score? Do the young people participating in your trial get a copy of what their parent has reported about them? Is the BASC-3 PRS report kept on the young person's medical file? Some of those young people are not children. Does it go to the GP?

Have you read our BASC-3 thread yet?

Perhaps Sarah could come onto the forum and explain why her team is collecting this data and what they are doing with it.

Also, we really need to see if both parents and young people fully understood that they would be completing a survey that outputs, among other things, a Somatisation score, and if they knew what would be done with the data. I don't think there is any ethics constraint on making the Patient Information Sheet public.

I think I already answered this at the beginning but I can clarify some things around the report that I miscommunicated earlier.

The BASC is a scale used in all manner of research on paediatric patients: cancer, stroke, etc.
It wasn't targeted for ME/CFS, it was just used as a standardized approach to research on young people.

The research team we collaborate with do not think this disease is to do with somatisation or treat patients based on this.

The use would be compare to patient populations with other diseases. To point to severity of impact, etc.

Yes to clarify, I didn't explain it well with the report on the weekend, I was hastily replying.

To clarify:
The child does cognitive tests
The parent fills the BASC
The neuropsych provides a report from this to the parent (we are not privy to the report given it's private), the report is provided because anytime we do a test in a study that is clinical then we try to provide an outcome back to patients/guardians. Most of our data isn't clinical and we can't provide it back to patients even if we think it's important, which we find difficult.

The report is provided to the parent, the parent can share with the child or GP if they choose.
 
The neuropsych provides a report from this to the parent (we are not privy to the report given it's private)
Is the report like a personalized letter for each child explaining the results? Or is it a standard fill in the blank format like: "Sue scored a 4 for the fatigue scale. This scale represents ..."

If the latter, maybe if you're able to, you could share the format that parents will be getting?
 
And yet, they have caused harm. Not least by diverting funds and effort away from collecting useful information. But also in diminishing people's trust in the medical system, particularly in diminishing young people's trust in the medical system. Probably also in some cases in solidifying parents' belief that they must practice tough love in order to not facilitate their child's psychosomatic illness.

Here are some excerpts from an email I wrote to Sarah in 2016. The study was termed 'Understanding Chronic Fatigue Syndrome'. It asked me, the parent, questions such as 'Do you bring your child special treats or little gifts when he is very tired or in pain?' and 'Do you keep your child inside the house?'. I had forgotten how bad the questions were.

The study did not ask permission for access to my son's medical notes and the long survey did not ask about PEM, so Sarah's team should have had no way of knowing whether he met ME/CFS criteria. I repeat, the study was called 'Understanding Chronic Fatigue Syndrome'.

Yes, it was a rant of a letter, but perhaps it conveys to you some sense of how surveys administered by Sarah Knight's team can do harm to struggling families. This was early in my son's illness; I'm actually pleased at how I would still stand by what I wrote.

I don't know this history but that doesn't reflect on the management of the current trial we are conducting.

I do think people learn as well. Researchers and patients are all learning about this disease. I think it's promising to neuropsych researchers move towards a biological context for the disease.

Yes clinicians do harm everyday, to all manner of patients. Whether they don't act or do act, they can be responsible for harm. I'm not a clinician but I think it's a job where they are an instrument for net good but ultimately all have a trail of people harmed.

I think the clinicians that are problematic are the ones that don't change in the face of negative feedback around their approach, right?
 
Is the report like a personalized letter for each child explaining the results? Or is it a standard fill in the blank format like: "Sue scored a 4 for the fatigue scale. This scale represents ..."

If the latter, maybe if you're able to, you could share the format that parents will be getting?

I don't see the reports, I just get to see the data from the scales eventually. I can ask next time we meet though.
 
Do you think it is likely that this team is producing Somatisation scores for the young people in this study so that, one day later when a biological mechanism for ME/CFS is found, a paper can be written showing how wrong the Somatisation scores were?

In any case, fans of somatisation could easily note that the characterisation of ME/CFS was poor, so some of the young people may not have had ME/CFS and instead had a somatisation disorder. They might also note, as they do even with patients with terminal necrotising brain disease, that it is perfectly possible to have a biological disease and a functional overlay, so the young people were in fact somatising to some degree. That is the beauty of psychosomaticism - it's easy to diagnose someone with it and almost impossible to prove that the diagnosis is wrong.


I think if they were interested in somatisation then they would have suggested one of the many somatisation scales?

The somatisation believers suggest that 5-7% of all people have somatisation disorders at some point. There's many more extensive "tests" for it. It's a different reality out their from some perspectives.

I don't have a concern that the intent is to paint ME/CFS patients as somatisation but I am concerned that you think these questions are still causing harm. That was not something we thought was going to be harmful, we mostly worry about the harm we cause from physical aspects of the projects we do.
 
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I think the clinicians that are problematic are the ones that don't change in the face of negative feedback around their approach, right?
Sure, clinicians who are not problematic now but were in the past are less of a worry than clinicians who were problematic in the past and remain problematic. Having found this clinician team to be problematic in the past, I'm just really keen to establish that they aren't problematic now. The use of the BASC-3, with its Somatisation scale, is not reassuring. If you have seen the questions in the survey, I am sure you can understand that.


The BASC is a scale used in all manner of research on paediatric patients: cancer, stroke, etc.
It wasn't targeted for ME/CFS, it was just used as a standardized approach to research on young people.
The use would be compare to patient populations with other diseases. To point to severity of impact, etc.
No one has suggested that the BASC-3 was made especially for ME/CFS.

What it does is what it says on the tin: 'Behaviour Assessment System for Children - Parent Reporting Survey'. It assesses behaviour and diagnoses psychopathy - or at least reports a number on various scales, above which the child is said to be abnormal, based on what the parent reports. It includes a somatisation scale (as well as a depression scale and a developmental disorder scale and an aggression scale and others).

I don't think it is accurate to say that the BASC-3 assesses severity of impact. For that you would need ideally something like FUNCAP, or at least the run of the mill SF-36 type surveys. Or the Memorial survey that I mention on the BASC-3 thread, which seems to be the main survey used to assess both the physical and psychological impact of things like pediatric cancer. That one does not diagnose psychopathy when children report having pain or being sad. If that survey had been used, I would not be very concerned. The BASC-3 survey seems to be particularly unsuitable for assessing children while they have a significant physical illness.

If you look at the BASC-3 thread, you will see that it is difficult for a parent of any sort of sick child to answer the questions and not have them score highly on the somatisation scale. It is hopeless to use the BASC-3 to compare patient populations with other diseases. There are questions 'has headaches' and 'has seizures' and 'is afraid of getting sick'. A child with a brain tumours on an immunosuppressive drug is likely to score higher on the Somatisation Scale than a children with a broken leg, because there is no question specifically asking about leg pain. And, why would any reasonable person want to compare the "somatisation" scores of children with various diseases?

And it's not just somatisation. There are assessments in the BASC-3 for things like aggression and hyperactivity. Why would anyone want to compare how aggressive and hyperactive children with ME/CFS against how aggressive and hyperactive children with, I don't know, liver cancer are?

Perhaps there is a sound reason for using BASC-3. It would be good to know it.
 
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I'm sorry that I keep asking if you have read our BASC-3 thread. It's just I don't think you would be writing some of the explanations you have given if you had.

I'm copying part of the BASC-3 PRS report here also so that it is easy to see.

The rating of psychopathology is very clear, the chart even reports if the child is in the abnormal range (when the dot is in the dark grey band). Even assessments of things like anxiety and depression are unreliable when a child feels physically awful, their life has changed for the worse and they don't know when things will be better. It is probably much more useful in terms of not damaging a young person's self-esteem and even for working out how to respond, to characterise what they are feeling as worry and sadness.

I am concerned that parents may be being given these reports, and believing that their child is a withdrawn, anxious, depressive somatiser. After all, the report has come from clinicians at one of Australia's leading children's hospitals, and it's a standard survey and the chart looks really fancy. Imagine being a young person with ME/CFS, dependent on your parent's care, possibly for the rest of your life, and your parents believe that you have all of those personality traits and could be well if you thought differently.

I'm concerned that the child will take these diagnoses on board and go through life thinking that they are not resilient and can't trust their perception of things like pain. Or they will not trust their parent to look after their best interests ever again.

I'm concerned that these scores might go on the young person's medical record, and when they go in to a hospital with abdominal pain, someone will see that they are somatiser, and the young person's appendix will rupture while they, with their ME/CFS and intense pain, are put in a corner for hours.

I'm concerned that the GP will see the report, and not refer the young person on to a specialist when they report a new symptom.

I'm concerned that the parents and the young people may not have known that this is what they were agreeing to. Having been in a similar situation with this team, I know how easy it is to not ask all the right questions, to start with at least, so I want to be asking the questions for them. If I am right, and the protocol is being followed and parents are being given the BASC-3 to be filled out and they are getting reports back about it, it seems that even you as a co-investigator were not aware of what your participant families would be expected to do.

I'm also concerned that the participant advisory panel might not have been adequately informed.

Maybe your neuropsych team has a very good reason for using the BASC-3, maybe they did not get parents to answer all of the questions and really did only want to know if children with ME/CFS are hyperactive or have a developmental disorder. It would be really good to understand more about what they were thinking when they chose the BASC-3.
 
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I'm concerned that the child will take these diagnoses on board and go through life thinking that they are not resilient and can't trust their perception of things like pain. Or they will not trust their parent to look after their best interests ever again.

I'm concerned that these scores will go on the young person's medical record, and when they go in to a hospital with abdominal pain, someone will see that they are somatiser, and the young person's appendix will rupture while they, with their ME/CFS and intense pain, are put in a corner for hours.

I'm concerned that the parents and the children didn't realise that this is what they were agreeing to. Having been in a similar situation with this team, I know how easy it is to not ask all the right questions, to start with at least, so I want to be asking the questions for them.

Maybe your neuropsych team have a very good reason for using the BASC-3, maybe they did not get parents to answer all of teh questions. It would be really good to understand more about what they were thinking.
I think your concerns are incredibly serious. It really worries me how simple it can be to do actual damage to people's lives and children's futures despite the best of intentions.
 
It's a tool that can do damage in the wrong hands but can be useful in the right hands.

@MelbME you are doing a great job of standing top for your corner. And you are clearly taking note of what people say - good on you.

I would just make the comment that when I was a physician studying RA and other 'biomedical processes' I had no idea about what went on when it came to the psychology side. Other than that early on I upset my colleagues in saying, on instinct, that I did not want my patients to be recruited for psychological studies.

When I got interest in ME/CFS I started looking at the evidence base for the psychological stuff and still continue to be stepwise more and more horrified how baseless the whole thing is and how manipulative and interfering. My own family experience with psychologists had been a disaster but I had hoped this was atypical.

So to go to the quote from you, I would say that we have no evidence that scales like this are ever useful or even that there are any 'right hands' out there, terrifying as it may seem. The entire paediatric profession has been persuaded to buy in to stuff with no scientific or evidence base. These 'standardised tools' are just a pretence at 'rigour' to justify the made up stuff that care is based on. Ethics committees should not be asking for them.

What do we do about? I guess what you are doing - learn as we go along. Keep at it.
 
This might vary from country to country? I'm not aware in the U.S. that "complex" in this context often means "psychological factors" or something parallel to "biopsychosocial" (in UK--biopsychosocial is used differently by clinicians I know in US and not in the limited UK BPS manner).
Who is using "complex" to mean psychological factors?

Almost certainly people like Wallit and Nath will use it this way.

I am pretty sure that physicians both sides of the Atlantic are very aware that the term 'complex' was deliberately devised to have two meanings, one for colleagues and one for patients, just like 'functional'.

The communication situation the states is weighted differently because most of the time it is assumed that patients are hearing what you are saying. In the UK doctors have happily discussed things as if patients were pet dogs. Just occasionally some NIH types are sufficiently confident in their intellectual superiority to slip in to English ways! Bt most of the time US physicians use complex for the benefit of patients.

However, the bottom line is that either meaning is in effect a matter of marketing. Complex is used to market care and research to patients on the basis that 'we are taking you really seriously'. But for the known complex diseases like diabetes, RA, multiple sclerosis, we never use the term because the seriousness is assumed. So even when complex is used for patients it has an implication of a paternalistic attitude that aims to reassure dumb patient pets that they are getting a nice bone.

Use of complex with patients is also a way of ignoring their specific experiences and symptoms and shifting the agenda to imagined pathology that justifies that $10,000 bone. The charities do it as well.

When ME/CFS research and care come of age the term complex will be seen as an encumbrance and an obfuscation, on all fronts.
 
Do you think it is likely that this team is producing Somatisation scores for the young people in this study so that, one day later when a biological mechanism for ME/CFS is found, a paper can be written showing how wrong the Somatisation scores were?

In any case, fans of somatisation could easily note that the characterisation of ME/CFS was poor, so some of the young people may not have had ME/CFS and instead had a somatisation disorder. They might also note, as they do even with patients with terminal necrotising brain disease, that it is perfectly possible to have a biological disease and a functional overlay, so the young people were in fact somatising to some degree. That is the beauty of psychosomaticism - it's easy to diagnose someone with it and almost impossible to prove that the diagnosis is wrong.
No doubt the psychosomatic club will spin any outcome to suit their purposes.

But the rest of the world might not be as accepting of that fairy tale as they once were if a biological explanation is found, and especially if a related treatment is indisputably producing genuine cures, or major sustained improvements, without any psych input.

That is exactly what happened with the discovery of helicobacter pylori and its role in various stomach diseases, most prominently peptic ulcers, and that it could be eliminated with antibiotics, and patients actually cured. The previous long-standing market for the psych take more-or-less vanished in a fairly short space of time.
 
I'm sorry that I keep asking if you have read our BASC-3 thread. It's just I don't think you would be writing some of the explanations you have given if you had.

I'm copying part of the BASC-3 PRS report here also so that it is easy to see.


The rating of psychopathology is very clear, the chart even reports if the child is in the abnormal range (when the dot is in the dark grey band). Even assessments of things like anxiety and depression are unreliable when a child feels physically awful, their life has changed for the worse and they don't know when things will be better. It is probably much more useful in terms of not damaging a young person's self-esteem and even for working out how to respond, to characterise what they are feeling as worry and sadness.

I am concerned that parents may be being given these reports, and believing that their child is a withdrawn, anxious, depressive somatiser. After all, the report has come from clinicians at one of Australia's leading children's hospitals, and it's a standard survey and the chart looks really fancy. Imagine being a young person with ME/CFS, dependent on your parent's care, possibly for the rest of your life, and your parents believe that you have all of those personality traits and could be well if you thought differently.

I'm concerned that the child will take these diagnoses on board and go through life thinking that they are not resilient and can't trust their perception of things like pain. Or they will not trust their parent to look after their best interests ever again.

I'm concerned that these scores might go on the young person's medical record, and when they go in to a hospital with abdominal pain, someone will see that they are somatiser, and the young person's appendix will rupture while they, with their ME/CFS and intense pain, are put in a corner for hours.

I'm concerned that the GP will see the report, and not refer the young person on to a specialist when they report a new symptom.

I'm concerned that the parents and the young people may not have known that this is what they were agreeing to. Having been in a similar situation with this team, I know how easy it is to not ask all the right questions, to start with at least, so I want to be asking the questions for them. If I am right, and the protocol is being followed and parents are being given the BASC-3 to be filled out and they are getting reports back about it, it seems that even you as a co-investigator were not aware of what your participant families would be expected to do.

I'm also concerned that the participant advisory panel might not have been adequately informed.

Maybe your neuropsych team has a very good reason for using the BASC-3, maybe they did not get parents to answer all of the questions and really did only want to know if children with ME/CFS are hyperactive or have a developmental disorder. It would be really good to understand more about what they were thinking when they chose the BASC-3.
@MelbME you are doing a great job of standing top for your corner. And you are clearly taking note of what people say - good on you.

I would just make the comment that when I was a physician studying RA and other 'biomedical processes' I had no idea about what went on when it came to the psychology side. Other than that early on I upset my colleagues in saying, on instinct, that I did not want my patients to be recruited for psychological studies.

When I got interest in ME/CFS I started looking at the evidence base for the psychological stuff and still continue to be stepwise more and more horrified how baseless the whole thing is and how manipulative and interfering. My own family experience with psychologists had been a disaster but I had hoped this was atypical.

So to go to the quote from you, I would say that we have no evidence that scales like this are ever useful or even that there are any 'right hands' out there, terrifying as it may seem. The entire paediatric profession has been persuaded to buy in to stuff with no scientific or evidence base. These 'standardised tools' are just a pretence at 'rigour' to justify the made up stuff that care is based on. Ethics committees should not be asking for them.

What do we do about? I guess what you are doing - learn as we go along. Keep at it.

I don't have enough experience with these surveys and scales to speak negatively or positively. The picture being painted in this thread about them is quite poor though.

I am taking note of what people say, I haven't explicitly stated that here but I'll certainly have more consideration of some of the value of scales used in general. I've primarily been thinking of patient burden, so these scales seemed fine at the outset as the patient doesn't need to do anything for them. In future I will try identify survey harm earlier.

I will say though that I wouldn't have chosen to collaborate with psych researchers if I thought they considered it a somatisation disease. We have plenty of them in Australia. In this instance it has been good to learn from different types of researchers. Psychology certainly has its place but like most fields perhaps they have grown into spaces for growing sake rather than real need.
 
What do we do about? I guess what you are doing - learn as we go along. Keep at it.
Yes, I have been a bit relentless. It is time I noted that it is impressive that Chris is still here, listening and replying. I am grateful.

In the UK doctors have happily discussed things as if patients were pet dogs.
Ha. I think you mean there that the pet dogs are assumed to understand nothing. Of course, we know that pet dogs understand plenty. I find myself resorting to all sorts of creative alternative wording to avoid unnecessarily exciting my dog when we are talking about a "walk" that is not going to happen immediately. Which is probably a fairly good analogy for the replacement words for hypochondria and hysteria used by doctors.

However, the bottom line is that either meaning is in effect a matter of marketing. Complex is used to market care and research to patients on the basis that 'we are taking you really seriously'. But for the known complex diseases like diabetes, RA, multiple sclerosis, we never use the term because the seriousness is assumed. So even when complex is used for patients it has an implication of a paternalistic attitude that aims to reassure dumb patient pets that they are getting a nice bone.
Interesting you say that. I was looking for something to answer Dave with and found the Mayo Complex Care Clinic. It's very masterful marketing - it has to be convincing enough that prospective patients will think they are getting the very best care available, while winking at the people picking up the bill. I think the give away is that it's labelled "An Employer Health Solution".

Mayo Clinic Complex Care
Complex Care Program: An Employer Health Solution
At Mayo Clinic, we understand that managing employees’ complex medical conditions can be challenging. That’s why we developed the Mayo Clinic Complex Care Program. It’s a customizable center of excellence program designed to help provide quick and easy access to Mayo Clinic for high-cost, high-risk employees.

Data shows that 1% of a population spends more than 30% of plan dollars*. This is often due to:
  • Serious or complex conditions
  • Inappropriate care
  • Misdiagnosis
  • Overuse
  • Unknown diagnosis (diagnostic odyssey)
  • Wrong treatment plan
*American Health Policy Institute (AHPI); High Cost Claimants: Private vs. Public Sector Approaches​

By providing high-quality care for a small subset of complex patients, the Mayo Clinic Complex Care Program can have a significant impact – both on patients' lives and on overall plan costs.

Better outcomes. Long term cost savings.
52% change in diagnosis; 85% change in treatment plan...23% change in locally recommended surgery

The program is a collaborative effort between Mayo Clinic, employers, and trusted payer partners. It’s specifically designed to address the unique needs of individuals with serious, complex or undiagnosed medical conditions.

There's enough 'real disease' stuff in there to leave the prospective patient hopeful, and even the funders wanting to save money can send the person off to Mayo in good conscience. For sure, they sort out cancers, there's a nice video of that. But, there's still that 'we'll deal with the frequent claimant, the overuse'. I think I'd be willing to bet that there is a fair amount of functional neurological disorder diagnoses done when Mayo have gone through a few tests, clearly drawing a line under the patient's 'diagnostic odyssey'.
 
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Thank you for your patience with all of us, @MelbME.

I want to describe a very, very common experience for ME/CFS or LC patients.

I’m 29, bedbound and I live with my parents. I’ve had a therapist for three years because being severly ill is hard.
She describes my mental health as robust and she has sent a writren statement to my GP.

Every single healthcare worker I’ve talked to, except for a former ME/CFS researcher, have asked about my mental health. Every single one.

It would be fine that they asked to make sure that I’m doing okay, but all of them have assumed that I’m not. When I was unable to sleep for weeks, my GP put me on meds to calm my thoughts, even though I stated very clearly that I don’t have thoughts that keep me up. This caused me to go additional weeks without sleep, and I developed lasting visual disturbances due to what’s most likely neurological damage.

My parents still believe to some degree that I am negatively affected by my mental health. Because why would everyone ask about it if it wasn’t important? I’ve had so many discussions with them about it and I’ve experienced lasting deterioration to my health because of it.

The worst part about being sick is that my parents don’t understand me. I’m living dead. I’ve lost my life and everything in it. I don’t have much hope for my own future. But that doesn’t come close to how soul shattering it has been to feel so incredibly alone, mistrusted and misunderstood. Can you imagine being completely dependent on someone to survive, yet look forward to the days that they are not home? Now imagine that those are the people that you love the most.

I’m not sure that I will ever be able to fix my relationship with my parents. They love me and they want to help me in any way they can, but they don’t understand that they are causing lasting harm. I’m not even sure I want to tell them everything, because it would destroy them to know what they’ve done when they tried to help. But it isn’t their fault. This is 100 % on the healthcare workers (and the BPS lobby).

This is what happens when you let psych anywhere near ME/CFS. This is common. It happens because the psychosomatic trends have caused everyone in our society to believe the mind-body bullshit.

If you or your research team ask these questions of the parents, you can and will do lasting damage to the children. Most parents are not Hutan - they don’t know any better. I didn’t either before I got sick. The questions will negatively influence the GP, the parents and their child. It is unethical and it’s harmfull.

In my opinion, the neuropsych part of this study should be stopped. It’s not worth the risk, and the benefit of your research doesn’t outweigh the damage or cost of theirs. It’s unethical to enable this to happen.

I have so many friends with the same experiences. I’m not alone in this.

This comment can be shared with Sarah and her team.
 
Thank you for your patience with all of us, @MelbME.

I want to describe a very, very common experience for ME/CFS or LC patients.

I’m 29, bedbound and I live with my parents. I’ve had a therapist for three years because being severly ill is hard.
She describes my mental health as robust and she has sent a writren statement to my GP.

Every single healthcare worker I’ve talked to, except for a former ME/CFS researcher, have asked about my mental health. Every single one.

It would be fine that they asked to make sure that I’m doing okay, but all of them have assumed that I’m not. When I was unable to sleep for weeks, my GP put me on meds to calm my thoughts, even though I stated very clearly that I don’t have thoughts that keep me up. This caused me to go additional weeks without sleep, and I developed lasting visual disturbances due to what’s most likely neurological damage.

My parents still believe to some degree that I am negatively affected by my mental health. Because why would everyone ask about it if it wasn’t important? I’ve had so many discussions with them about it and I’ve experienced lasting deterioration to my health because of it.

The worst part about being sick is that my parents don’t understand me. I’m living dead. I’ve lost my life and everything in it. I don’t have much hope for my own future. But that doesn’t come close to how soul shattering it has been to feel so incredibly alone, mistrusted and misunderstood. Can you imagine being completely dependent on someone to survive, yet look forward to the days that they are not home? Now imagine that those are the people that you love the most.

I’m not sure that I will ever be able to fix my relationship with my parents. They love me and they want to help me in any way they can, but they don’t understand that they are causing lasting harm. I’m not even sure I want to tell them everything, because it would destroy them to know what they’ve done when they tried to help. But it isn’t their fault. This is 100 % on the healthcare workers (and the BPS lobby).

This is what happens when you let psych anywhere near ME/CFS. This is common. It happens because the psychosomatic trends have caused everyone in our society to believe the mind-body bullshit.

If you or your research team ask these questions of the parents, you can and will do lasting damage to the children. Most parents are not Hutan - they don’t know any better. I didn’t either before I got sick. The questions will negatively influence the GP, the parents and their child. It is unethical and it’s harmfull.

In my opinion, the neuropsych part of this study should be stopped. It’s not worth the risk, and the benefit of your research doesn’t outweigh the damage or cost of theirs. It’s unethical to enable this to happen.

I have so many friends with the same experiences. I’m not alone in this.

This comment can be shared with Sarah and her team.


I think I can understand what it's like to not be understood by parents and I've had bouts of mental health issues that at their worst kept me practically housebound for half a year. That's about the extent I can empathize but what you describe is well beyond that and I really don't know what it's like to live in your shoes. I'm sorry you've been limited in this life but also glad you found this community here.

The neuropsych part of this study is completed, we finish up recruitment for the in-clinic visits next week and are only waiting upon longitudinal omics collections.

I should also point out that all the patients in this trial are within the same system of care for rehabilitation that the RCH supplies. None of the patients ended up being brought in from non-RCH connected clinicians, they are already seen by the same clinicians that are across these surveys. These clinicians are specialists, not GPs, so potential additive harm would be if parents took these results to the GP who then refer them away from the hospital/specialist system to someone that is a somatisation believer. This seems unlikely. At least I really hope that doesn't happen.

I think the main outcomes from this discussion is to look out for any suspect wording in publications that might inappropriately validate these theories and to not ask these questions in future. I will discuss some of what has been said with the team at RCH too.
 
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