Sorry, I'm not understanding your reply. There currently doesn't seem to be any basis for believing that cortisol levels are abnormal in ME/CFS. What information are you talking about when you say 'is it real information or not'?
Protocol Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+
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This was a collaborative study between clinician researchers at the local children's hospital and us. The pics aspect is quite distinct but we will see if there is any value in combining the data.
I am interested to know your perspective on diseases like anxiety and depression. Do you see them as physiological diseases or as separate mental health diseases?
I only ask because I sometimes get the impression that ME/CFS patients don't want to be associated with co-morbid depression or anxiety because they don't see those diseases as physiological. If I were doing research on those diseases I'd be looking into the physical/biological changes that happen around neurotransmitter receptors, metabolism, etc.
But, can't you see that the scales are collecting information that is hopelessly biased by the young people's chronic health condition? I think we need you to go a bit deeper and actually look at the scales and think about the potential for bias, rather than just waving this issue away with a 'it's what everyone does'.
There's no point comparing patient populations across diseases if your data is rubbish.
I don't think you have explained why you need these scales done for your omics work. Also, why you could not delete some of the question types within existing scales?
For example, why do you need the questions assessing somaticization? I don't think an ethics committee would have any problem with you just taking those questions out of the survey if you explained that it is not possible to differentiate between ME/CFS symptoms and symptoms claimed to be signs of somaticization. In fact, if the ethics committee was on the ball, I think they should have been asking you to justify how the potential harm from labelling your patient cohort as somaticizers was outweighed by the benefit.
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Some studies have provided evidence to cortisol dysregulation but I wouldn't say it's strong evidence. Perhaps relative to other evidence in the field it's stronger but not definitive.
Frankly, that is even more frightening than having some aggregated finding that the cohort of young people are, on average, somaticising. So, is it possible that young people will be told that the answers the parents gave to the survey have resulted in them scoring highly as a somaticiser? Or will just the parents be told?
And then what? Will they then be referred to people like Lionel Lubitz?
(My son avoided the 'delightful care' of Lubitz - we went to the Royal Children's once for my son to be assessed, but my son refused to go back. In any case, my son was regarded as not needing Lubitz's residential programme, because he was so keen to return to school, an attitude that was greatly praised. My son did return to school and deteriorated badly.)
Were the young people with ME/CFS in your study only allowed to participate in the study if they agreed to be looked after by these clinicians and provide all the neuropsychological data?
Wouldn't we be providing bias by targeting the removal of specific questions I don't like the sound of from a standard scale?
The paediatricians are in charge of caring for patients and are across what was done in this area, I don't think me (a biochemist) should be over ruling their decisions. Care of children is especially protected.
I'm not trying to 'wave' it away, just explaining my perspective because you asked the question.
I don't know if it is difficult to separate questions on somatization from ME/CFS though, I have never seen that data before. Would you expect it to be difficult to separate them?
Did you read the cortisol thread we started to answer your earlier question? It's not complete yet, but it shows that there have been many studies finding normal cortisol levels.
Maybe the cortisol discussion can be continued on the cortisol thread.
Cortisol levels in ME/CFS
I'm interested to know which studies you think provide useful evidence and which ones should be ignored.
Not at all. The BASC scale has 4 sub scales, so you can just look at one or more sub scale if you want. We see that happening all the time. Researchers might use the SF-36 just collect data on physical function for example and not use the social functioning module. Have a look at the BASC thread.
Also, it's not a case of 'not liking' the questions. It's a matter of, will these questions give us unbiased useful data? And, do they have anything to do with our study? And, is the risk of harm too great to collect this data?
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Typically, symptoms such as fatigue and headaches and behaviours such as thinking about your health are taken to be evidence of somatization. I don't know what the BASC asks in order to rate a child as being a somaticiser - you have to buy the questionnaire. Perhaps you can get the relevant questions and post them here and we think about how a parent with a child with ME/CFS might answer them?
I know you are busy, but I think this is serious stuff. I think the neuropsychiatrists you are collaborating with could potentially be putting the goodwill that you and the OMF have with the ME/CFS community at risk. Right now, there is time to do something about it. But, if a paper gets published as a result of your omics study claiming to show that children with ME/CFS have a whole lot of psychopathologies, trust will be lost. Similarly, if it turns out that parents had to put their children in the hands of clinicians who support treatments such as CBT to correct psychosomaticism in order to have them participate in you study, that is an issue that I assume you will want to fix.
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Everything I'm reading and seeing is indicating to me that the major mental disorders are physiologically (ie immunometabolic) derived. Maybe things like personality disorders are more purely cognitive/integrative - I don't have knowledge to comment - but perhaps even they are more physiologically-based than we tend to think. Perhaps it's the gut bugs doing the majority of the criming! I commented a couple of days ago —
Studies in LC that show increased risk with eg pre-existing mood disorders and/or LC significantly worsening anxiety just suggests to me that many people are already in at least a physiological high risk profile.
I suspect Chris is a bit stuck here, with clinician support mandatory to gain ethics approval. The paediatricians have their totally-validated-you-guys questionnaires and they and ethics committees will very likely insist on those in standard form. I guess it will continue to be GIGO until we can ultimately show what's actually going on physiologically. Then there's a chance those psych instruments might be corrected or reduced to reflect the real situation and finally let go of the closely held somatisation etc.
If they can't be reduced to sub-scales as Hutan comments above, maybe that can be sensibly covered in the paper's discussion, framed around whatever useful -omics findings are made.
There was a case report today on post-Covid catatonia in a 4 yo. Perhaps this might be how ME/CFS could present at that very young age in its developing phase, in someone who wouldn't be able to recognise PEM in themselves and protect in the way most of us do. They might have muscle pain and thrash about in distress until they could move no more for a period. Or it might be unrelated, except as an alternative postviral neuro syndrome.
The whole personality and behavioural field is far less sophisticated that it appears from a distance. I have been shocked at how ratings of serious mental health issues are derived from often inane questions. The survey instruments are claimed to have validity, but if you look deeper, the assessing of validity is often pretty spurious. The answers to the questions are scored, producing numbers, and suddenly the tool is no longer just a collection of ambiguous and often trivial questions. It is 'scientifically valid data' that can be used, context-free, to put labels on people.
There are all sorts of biases that can affect the data. Participants for a trial may be selected according to their attitudes; the participants that make it to the end of the trial and fill out the forms are often self-selecting. There is often priming, for example suggesting that people with ME/CFS are perfectionists, people will be encouraged to find the instances of trauma in their history, they will be encouraged to label themselves as Type A strivers, or people pleasers. And people will do that, because if there is a personality problem causing their illness, they can fix it, and become well.
Good care of people with ME/CFS, even children, is not some magic thing that pediatricians have some special insight into. It is largely commonsense because there are no disease modifying treatments. I think you have enough skills and knowledge to look at the surveys they are asking the parents of the young people to fill out and at the treatment the pediatricians are recommending in order to know if what is happening is ethical or not.
I think it is irrelevant to the concern I expressed whether anxiety and depression are thought of as physiological or mental health diseases.
The concern I expressed was with the choice of the HADS survey tool and others. HADS has been found to over-diagnose anxiety and depression in people with chronic debilitating illnesses. If you look at the questions in it, you will see why. It is not a good tool to assess anxiety and depression in ME/CFS. I'll add the link to the HADs thread again.
My subsequent question in fact showed that I believe that mood disorders are likely to have physiological causes and/or consequences. I think you missed it? I asked, if you are wanting to correlate mood with your omics, would it not be better to collect simple and direct reports of mood from the young people at the same frequency as your collection of samples? It seems to me that a very long questionnaire completed by the parent about the young person very infrequently and almost certainly biased by their beliefs around the cause of ME/CFS are unlikely to capture the detail you need to find good correlations.
As I said, I don't think the ethics committees would have insisted on full surveys being applied - we see sub scales used on their own all the time.
But, all this raises the question we have discussed on another thread: 'should studies be being done on children with ME/CFS at this time at all?'. This study could have been done with adults, and presumably it was only done on children because the neuropsychologists based at the Royal Children's wanted to get hold of data that would help support their causal paradigm and treatment ideas. Actually, given the turbulent time that adolescence is biochemically, I think a strong case could be made for the omics study to not be made in this age group. There will be a whole lot of biochemical noise from puberty muddying the waters.
The risks that flow from the application of the particular surveys chosen are real.
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I'm very sorry to hear about your son and the negative experience you've had with clinicians. This disease is awful and the lack of knowledge around it has meant that tough decisions need to get made without the information to make that decision. I am just spending time with my kids now and don't have much time but I didn't want to not reply to this with too much delay.
A report from neurocognition tests from this study we did goes back to the parent, the parent can decide to pass it to the doctor before the study, who would be the one to make decisions, if any, like referrals. I doubt they'd make decisions off data from a study though unless it's objective like imaging data, doctors are typically quite directive in their approach to complex disease, at least in my experience.
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Thank you, I really appreciate you replying here.
Let's not get sidetracked by questions about whether people with ME/CFS have a fear of being associated with anxiety or depression; Or indeed whether my son and I had a negative experience with the clinicians. I hope you will have time to get to the bottom of what happened in this study.
I think the most important question we need a clear answer to is 'were both the young people and their parents specifically informed that the parents would be completing surveys about their children in order to identify psychopathologies, before they gave their consent to participate?
It occurs to me that the inclusion of the neuropsychology evaluations under the umbrella of the omics study is likely to lead to a bias in who sticks with the study and who drops out. Certainly, if I and my son had signed up to the study and then found out that I was expected to answer questions to evaluate his aggressiveness, his hyperactivity, the presence of a conduct disorder, his somaticisation, his withdrawal, or to assess his social skills at a time when he was not able to get out much, I expect we would have withdrawn from the study. Not because my son is in any way psychologically unhealthy, but because I would be concerned that the impact of the disease would bias the results and about the intent of the researchers. And frankly, it's none of the researchers' business.
And, if you have all the people affronted by the personality survey dropping out, and leaving the parents who do think that their child's ME/CFS is caused by their psychological issues, then you end up with both the neuropsychology arm and the omics arm in a great biased mess.
Let's not get sidetracked by questions about whether people with ME/CFS have a fear of being associated with anxiety or depression; Or indeed whether my son and I had a negative experience with the clinicians. I hope you will have time to get to the bottom of what happened in this study.
I think the most important question we need a clear answer to is 'were both the young people and their parents specifically informed that the parents would be completing surveys about their children in order to identify psychopathologies, before they gave their consent to participate?
It occurs to me that the inclusion of the neuropsychology evaluations under the umbrella of the omics study is likely to lead to a bias in who sticks with the study and who drops out. Certainly, if I and my son had signed up to the study and then found out that I was expected to answer questions to evaluate his aggressiveness, his hyperactivity, the presence of a conduct disorder, his somaticisation, his withdrawal, or to assess his social skills at a time when he was not able to get out much, I expect we would have withdrawn from the study. Not because my son is in any way psychologically unhealthy, but because I would be concerned that the impact of the disease would bias the results and about the intent of the researchers. And frankly, it's none of the researchers' business.
And, if you have all the people affronted by the personality survey dropping out, and leaving the parents who do think that their child's ME/CFS is caused by their psychological issues, then you end up with both the neuropsychology arm and the omics arm in a great biased mess.
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I guess I would say that information or questions aren't biased, they are just data.
People are biased, people interpreting the data can be biased. I think that's what we all don't like, especially when that bias is harmful and the person with that bias rejects feedback like "this made me worse".
So I think you're worried about biased interpretation of data points to fit an agenda. Plenty of questions on surveys can be taken to mean wrong things if you simply looked at the survey and diagnosed people off that. This would be the sign of a poor clinician IMO. For example, POTS or OI symptoms look like anxiety from a HADS survey.
We aren't looking at the data to label somatization or diagnose that in the patients. We might even comment on how it doesn't mean somatization in this cohort, which we can do because we collected the data.
Not yet, I will have a look and post on that thread in future.
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Unfortunately, there is no good answer to what happens with the results of the personality/behaviour surveys. If the results, skewed as they will inevitably be and almost certainly over-diagnosing somaticisation and withdrawal, are sent to the young person's GP, the results could greatly affect the care that the child is given and the way both child and parent are treated in the medical system well into the future.
I'm still intrigued to know what you mean by complex.
There is more I could say, but I'll leave you to get on with your family. I hope, once you have had a chance to round up copies the surveys your study participants and their parents are completing and check the participant information sheet, we can come back to the questions in this thread.
That would be problematic, I haven't had any inkling from the people we work this that they view ME/CFS as a psychopathology, they focus on MRI studies. I don't know the long history but I also know people change their opinion on things with more information.
Some of the cases we got through the hospital were comorbid with pathologies, the hospital is typically for more complex cases and we had to exclude many cases because of this.
But I will be on those papers and will have an opportunity to voice concerns if anything like you suggest pops up.
I'm going to continue researching the disease as well as I can, I hope people don't lose trust in me if I make one misstep but if it does then I'm going to have to deal with that if it happens.